Inventing Better Fools

A satisfying letter

2008-04-15T19:47:00.003+01:00

I remember St George's asking me once whether I wanted copies of the letters they send to my GP every now and then. I said yes, thinking they might be interesting, and it proved to be a good decision. Here's the last one I had, which I've been meaning to put up because it's quite a satisfying one...

How nice!

(Real-life update: one term and an essay over the summer remaining of my Journalism MA... Looking for jobs)

In case anyone's still out there...

2008-01-22T21:37:00.000Z

You might be interested to hear that I'm hopefully going to be finishing my Maintenance treatment very soon indeed. I'm seeing my consultant on 7th February, and I think she'll declare that the end, or let me run on until the end of February. The end of Maintenance, of course, means the end of chemo, and the end of treatment!

Hurrah!

They'll have to keep checking up on me fairly regularly (with bone marrow biopsies BOOOOO) but finishing treatment is great! Even though it probably won't make much difference to me day to day - psychologically it's a big thing.

PS This is what I look like these days; photo taken at the White Knights Ball on 5th January (a grand success):

Harriet's Ball for Leukaemia Research!

2007-09-10T19:40:00.001+01:00

PS I'm very well! 2 more weeks of work at Training For Life, then I start my Masters at Goldsmiths on 1st October. I have a bone marrow biopsy on Wednesday (booooooo) but otherwise all is fine medically! Still on chemo tablets, and one more lot of intravenous and intrathecal, but still hoping to finish Maintenance in February. I'll believe it when it happens, though. Anyway, come to this Ball and invite everyone you know who might be able to come!

Great cause; great party

2007-07-09T16:19:00.000+01:00

Well, my birthday celebrations are all over, and it's time to wonder where the next party is...

And I'll tell you! It's for a GREAT cause, and it will be a GREAT night. This is what it is:

The Three Peaks Party
Party the night away in Infernos and raise money for the NfA at the same time...
Start Time: Friday, July 20, 2007 at 8:30pm
End Time: Saturday, July 21, 2007 at 2:00am
Location: The Flame Bar, Infernos
Street: 146 Clapham High Street
A night in Infernos that helps raise money for charity - what more could you want?! We've booked out the Flame Bar area of Infernos to celebrate our return from the peaks so please come and help us dance the night away...
Robyn needs to provide Infernos with a guest list (we only get money for people who are on the list and get ticked off on arrival) so please let her know the names of everyone you're bringing asap.(p.s. It is over twenty-ones and they have said they will enforce that)

This is the cause:

Robyn, Jenn, Charlotte, Charlotte, Emily, Jules, Jo, Ali, Becky, Sophie, Jenn, Nick, Nick, Mike, Dan, John, Eric and Alex are doing the Yorkshire Three Peaks Challenge to raise money for the Neurofibromatosis Association. Please sponsor us for huffing and puffing our way round a twenty six mile route that involves climbing three massive hills! xxxx

Come, come! It'll be fun, fun! But TELL ME ASAP so I can tell Robyn who's coming (particularly as Inferno's need to know numbers and names). Or tell Robyn, of course, if you are in contact with her.

25, employed, housed and healthy

2007-07-02T18:20:00.000+01:00

Happy birthday to me! This birthday is a little different from last year's (scroll down), not just because I'm turning 25 instead of 24.

The job's still great - and they got me cake! Not as many balloons as last year, admittedly, but I have various celebrations planned this year. It's wonderful to be celebrating my birthday like a normal person (not that I didn't appreciate enormously last year's effort).

Mariacristina even took me out to lunch at the 28th-floor restaurant at the Park Lane Hilton, which was fantastic. Gorgeous food, wonderful location, beautiful company...

Other brilliant recent news is that my bone marrow biopsy (which was the first I'd had for ages) showed no sign of residual disease, so I officially don't have any trace of leukaemia in me at the moment. It's quite possibly that's been the case for a while, and even if I did, it wouldn't be terrible, but it's still of course lovely to know the bone marrow's clear.

Roll on the next 25 years!

Back to life?

2007-06-11T19:37:00.001+01:00

Life is remarkably 'normal' at the moment. That's probably why I haven't posted in over a month. But if you're still reading, here's a quick update, and I'll try to expand as soon as I get a moment.

I've moved to Balham and am living with a couple of friends from uni, and a couple of others. A lovely big house and it's a decent price, which is always a bonus.
I'm off to Goldsmiths in September for my Journalism MA (but you knew that already).
I'm working as Temporary Fundraising Manager for a charity called Training For Life. The money's decent, the people are lovely, the charity's work is very commendable, my job is interesting and satisfyingly challenging, and the office is not far from Bank, which is on the Northern Line (like Balham).
I am now Chairman of the OMV White Knights Ball 2008!
I published the Malteser and sent it out - I've had some lovely feedback. But perhaps I already told you about that.
I had a bone marrow biopsy (again) the other day, because the sample from the previous one was too dilute. It wasn't very nice, of course, but Girish did a fantastic job to keep the pain minimal. I didn't have sedation, either! I did get a letter from the doctor so I could skip the queues at the airport, though.
I went to Amsterdam for the weekend, to start planning the Ball. It was gorgeous, and just so lovely to be on holiday for the first time in ages. Hurrah!

All is well, therefore. I shall update again soon. Unless I'm writing my book, of course ;-)

Sedation and bone marrow biopsies

2007-05-03T22:05:00.000+01:00

Yesterday I had a bone marrow biopsy - my first for quite a while. It probably shouldn't have been so long since the last one, but I'm not the sort of person to ask for a bone marrow, as I find them horrible. Of the first four, I had 2 under sedation, and 2 not, so when I had the choice of sedation this time I was well informed as to which would be better. Considering the 2 without sedation were very painful, and the two with were fine, it was an easy decision!

What I had forgotten, though, was that it leaves me with a sore pelvis for a couple of days, but that's small beer when compared with the horrible sucky feeling encountered when not under sedation. Pain or no pain? No pain! No pain! Foolishly, I almost agreed to have it without sedation this time, in order to get seen more quickly (it's a bit more complicated with sedation, as a senior nurse needs to be there), but fortunately I held out and the actual biopsy passed without incident. I think I fell asleep, but I can't remember. I definitely had a snooze afterwards.

I'm now sat at home, putting copies of the Malteser in brown envelopes and sticking address labels on the front! It's not especially interesting work, but terribly exciting to be doing it, because I'm very pleased with how the magazine has turned out... I might take some photos of it and post them, because I like it so much. Hurrah!

The most exciting news

2007-04-29T15:43:00.000+01:00

I've been slowly getting through some of the more important things that I've done / been to over the past month or so, and have finally reached what might be the most exciting news...

I may have mentioned on this blog that I was going for an interview, but I was a bit coy about what it was, mainly because I didn't want to advertise what a lovely thing it would be because if I then didn't get it it would be very sad.

You'll probably have gathered by now that whatever it was, I got it, because I'm about to tell you what it was! A few people said beforehand that they were certain I'd get it, or have since told me they knew I would, but bear in mind that after a year and a half out through serious illness, my confidence wasn't as high as it might have been. Also, a year and a half out probably means a year and a half less experience studying/working than other candidates...

Having decided that my time at Literary Review was interesting, and that journalism was something that I fancied doing, I realised that I ought to have done a bit more of it, be that at uni or as work experience during holidays, for example. It's possible that, having been ill, I could have returned to Literary Review, but for various reasons I decided against that.

It is a very small magazine, and naturally when I got ill somebody else took my place. As it happens (and it was pure coincidence), he's a good friend, but that's irrelevant. What is relevant, though, is that going back would have been a bit more complicated in terms of where I might fit in...
Lovely and wonderful as the job and magazine was, literary journalism simply does not pay well enough. That's why most people who do it do it as a hobby, having another source of income.
Having been ill, I felt that a new start would be in order. If I had just settled back into my 'old' life, it would almost have felt as though nothing had really happened. New me, new job. Or something.

So where was I? Journalism, right. Not having a huge amount of experience (though 4 months at Literary Review was excellent, particularly for the sub-editing side of things), and being a bit rusty after a year and a half not working (though this blog has hopefully kept up my writing skills), I decided early this year that a journalism course might be a good option to get me back on track. So I looked around, and discovered that a lot of deadlines were approaching very fast indeed.

Rather than rush out several half-hearted applications, I made the eminently sensible decision to put all my eggs in one basket. But which basket? After some research, I decided that the MA at Goldsmiths would be the most suitable course: it's in London (New Cross, in the south-east); it's Journalism rather than Magazine Journalism or Newspaper Journalism or Broadcast Journalism or Web Journalism (and at this stage I want to keep my options open... and believe that these days there is such crossover between the different media that having cross-media skills is very useful); the course has a good mix of the theoretical and practical; it was a bit cheaper than, say, City; it seems to be very successful in terms of student awards and people finding jobs after completing the course; etc.

So I applied, in spite of the 15:1 applicants:places ratio, and to my delight was invited to interview. This was the interview in question (towards the end of March), and I was glad to feel at interview (there was a tour and Q&A session too) that I had made a good choice. The interview was tricky: I found myself having to back up a couple of throwaway lines I made; but it went on for twice as long as expected, because we were having a good debate about state school pupils getting full scholarships to go to independent schools...

Anyway, I got it! I was even in the first batch (if people turn down the offer, they send another batch), which I was absolutely delighted with. I didn't really have any reason to feel confident - I may have an Oxford degree, but my journalistic skills are relatively untested. Getting onto the course meant that someone believes I can be a good journalist, which was something I just didn't know.

Best of all, perhaps, it was the first real thing I had managed to achieve since being ill. After so long of not knowing what the future might hold, and not being able to make any plans, it's wonderful to have something definite lined up. The course starts in September, and takes a year. There are 14 students on the MA (hurrah - a student again! I'll even get a student oystercard), and all in all I'm dead excited.

One of the things the interviewer did say, though, was that I could do with a bit of newspaper experience before doing the course... Fortunately, I'd already organised a week's work experience at the Chichester Observer, which though not a huge thing, is better than nothing. I did it last week, and it was interesting to see how a local newspaper works. I did some rewriting of press releases and sports reports, and wrote a couple of pieces (one based on a couple of phone interviews, and one on research), but it didn't leave me particularly desperate to work for a local paper... What was nice, though, was that they were very impressed by what I did, and wanted me to apply for the trainee reporter position they were interviewing for that week. I declined, but was flattered that they thought I should go for it, particularly since I hadn't been putting in any special effort to get noticed!

Anyway, in just over a week's time, I'm moving to London. I'll be up from Monday 7th, but am not moving into my room in Balham (did I mention that? I've got a room lined up in Balham with a couple of uni friends and a couple of others) until Friday 11th. It's very exciting to be moving back up to London, and is another important step in me getting my life back to something like 'normal', whatever that may mean. I've probably got a job lined up (basic admin etc at a financial PR company) that should pay for my living costs, but I'm yet to finalise details and confirm that. It's not going to be the most challenging job in the world, by any means, but it's only for a few months and there aren't many places looking for someone for such a short time. Also, it'll be interesting to see how a PR company works, they seem very nice, and having been ill it might be quite nice for my first job back not to be too much of a strain!

So, everything's going pretty well at the moment! Famous last words, perhaps... but it's exciting nevertheless. Oh wait, I've got a bone marrow biopsy on Wednesday. Bugger.

My fazher!

2007-04-26T21:46:00.000+01:00

Following on remarkably coherently from my last post, I thought I'd encourage you to help my father raise money for the new Cancer Day Unit at St Richard's Hospital... Or, as he put it:

Excuse me emailing you with a begging bowl, but I am raising money for St Richard's Hospital Charitable Trust in recognition of the support they have given my family, and would really welcome your support.

Please take a moment to visit my online fundraising page and make a donation. It's really easy - you can donate by credit or debit card at the following address:

http://www.justgiving.com/andrewnorton

He's walking somewhere nice, and it sounds very pleasant, but it's all for a good cause, so do drop some pennies in if you can.

I don't want this blog to be filled with plea after plea for charitable donations, but both this and Jess's London marathon for the Anthony Nolan Trust (you can still donate at http://www.justgiving.com/jessicaotte if you're interested) are causes pretty close to my heart (well, close to my entire blood system, really), so I wanted to mention them.

"What was that address again?" I hear you cry. Well:
http://www.justgiving.com/andrewnorton

Same same, but different

2007-04-25T22:24:00.000+01:00

I had harboured a crazy hope that I might get through the whole of the Maintenance therapy without having to spend any more time as an inpatient, and was doing pretty well on that count, my body managing to deal with any little sniffles I've had since December. However, just before Easter I developed sniffles that were a bit more than 'little', combined with a headache and a strong feeling of lethargy, and I knew my neutrophils were down at about 0.2. There was nothing for it, I decided, but to pop into St Richard's in Chichester to get myself checked out. I rang St George's and they agreed, so my father drove me in...

I still had some vague hopes that they'd just give me some nice drugs and send me home, but I had no such luck. In I went, and spent the next six days as an inpatient - moving between four different wards in total during my stay. I suppose I've managed to avoid being an inpatient in St George's during my Maintenance therapy so far, but that's not quite such an impressive record.

I should explain why I was on four different wards during my stay. It was Good Friday when I went in, so the usual day staff weren't working. I can't remember where it was I went to first, but it was like a lightweight A&E. They then sent me to an Acute Admissions Ward (Petworth Ward), not because my problem was Acute (though my leukaemia was, if you remember), but because it was the best place for me that had a spare bed. The next morning the Haematology lot were ready for me, so I moved to their ward, but as Ford Ward (their home) was being redecorated, they had moved to another ward... After a few days, however, they declared that Ford Ward was ready, so I moved again. Having said that, the rooms were all much of a muchness, though my final room was the only one with en suite bathroom.

There were some interesting differences between St Richard's and St George's. St Richard's were much less strict about confining me to my room when I was neutropaenic, and often left the door open. I could even open the windows! They didn't come and wake me up at 2 o'clock in the morning to do my observations... It did all seem a bit calmer, but that wasn't necessarily a good thing: I missed the more buzzing atmosphere of St George's. Most of all I missed the nurses, though the staff at St Richard's were very friendly.

As for the treatment, they sent me for a chest x-ray, took blood cultures and set me off on a course of antibiotics. As I don't have a line any more, that meant cannulas, which are never much fun, though I didn't have any problems with them this time (I had two, because they only last for a few days before they start getting sore). I also had to have more needles stuck into me when they wanted blood, which wasn't very pleasant, particularly when we discovered that one vein still hasn't really fully recovered from the PICC lines (which I had ages ago). When I went in, I was feeling rubbish but my temperature was actually OK; after a couple of days the temperature went up but I was feeling fine. I'm not sure that makes much scientific sense. But the antibiotics did their job, though my neutrophils were taking a long time to grow. Eventually they sent me home with several doses of G-CSF (growth factor) for me to self-inject into my belly. That did the job, helping me get my neuts up to 12 (wow! Normal is 1.8-8), and by then I was feeling absolutely fine.

Unfortunately, it did mean I missed two great events I had been looking forward to. Fortunately I'm pretty used to plans going awry these days, so it wasn't as disappointing as it might have been. The first was the Easter Retreat at Downside, which was apparently lovely as always, and the second was my trip to Italy, which would have been my first foreign trip since before I got ill. I had planned to spend a few days with Freddie and a few days with Mariacristina, but my low counts meant that I didn't want to risk flying.

Now the Maintenance therapy is running again: I'm back on the chemo tablets, though at 50% dosage. Having got away with not having a bone marrow biopsy for ages (that's the one that REALLY REALLY hurts), I now have one planned for Wednesday: my consultant sadly realised that I should really be having them every three months.

Oh well.

Charlie Allen RIP

2007-04-21T22:06:00.000+01:00

Just over a week ago I attended a memorial service for Charlie Allen, who died recently of cancer. He was 20, and though I didn't have much chance to get to know him, we had a lot of common, and had bumped into each other at the Marsden in Sutton. Our families (particularly parents) had been friends of years; unfortunately his father died a few years before my mother did. Then Charlie got cancer, and so did I: my father was lodging with his mother for some time recently, and they obviously had quite a lot to talk about...

I think Charlie and I would have had a lot to talk about, too. He was a keen actor (and was part of the National Youth Theatre, who are now setting up a bursary in his name), and was studing Philosophy at Cambridge. He also had a strong faith. Admittedly, he was also a keen rower (he coxed the British Under-19 team in the European Championships a couple of years ago), but nobody's perfect. From the wonderful words spoken about him at the service, I really do wish I had had more chance to get to know him. I remember telling his mother, "it would be great to have a beer with Charlie and chat about life", but sadly we never got the chance.

The music at the service was lovely (Mozart on the organ; hymns were 'O Lord, my God', 'Dear Lord and Father of mankind' and 'I vow to thee, my country'), and the Minster in Warminster was full. His elder brother read a poem called 'The Fighter' - I've been trying to locate it but unfortunately didn't quite hear the poet's name. On the back of the service booklet there were some very fitting words by Wordsworth:

I loved the Boy with the utmost love
Of which my soul is capable
And he is taken from me -
Yet in the agony of my spirit
In surrendering such a treasure
I feel a thousand times richer
Than if I had never possessed it.

All in all it was a beautiful service for a great person, who definitely made the most of his too-short time with us. I was very glad I went (with my father), but I must admit it was in some ways tough. Apart from feeling very sad at his death, I also couldn't help but feel some guilt: "survivor's guilt" as I believe it's called. I know it's not logical, and that life doesn't work that way, but there were moments when I thought, "why has he died and I haven't?" There is no answer to that, as it's a nonsensical question, but it's how I felt. I suppose that being in that situation kept reminding me how easily such a service could have been for me - and that led on to mixed feelings: being grateful for the life I continue to lead, but also gutted that Charlie was in that position "instead of me" (even though I know he wasn't). So it was tricky...

Rest in Peace, Charlie.

A marathon for bone marrow!

2007-04-18T20:59:00.000+01:00

My lovely friend Jessica Otte is running the London Marathon (this Sunday) for the Anthony Nolan Trust, and you can sponsor her at http://www.justgiving.com/jessicaotte - there are at least three very good reasons to do this:

1. The Anthony Nolan Trust (which I have mentioned before, albeit a long time ago) is a wonderful cause - it always needs more people on its bone marrow register and deserves all the support it can get. I haven't needed an unrelated bone marrow yet, but it's always a possibility, and many lives have been saved by the Anthony Nolan Trust.

2. The London Marathon is very long and very hard - I walked about seven miles the other day and was exhausted... The marathon is, of course 26 miles, and it's run. That's seriously tough.

3. Jess is a lovely girl: everyone should sponsor her!

So don't hesitate, get over to http://www.justgiving.com/jessicaotte and pledge some money! Jess is targeting £1500, and every penny will count.

PS I intend to post lots more over the next day or two, having not done so for ages... I have lots to talk about. But first of all, sponsor Jess.

Keep up, keep up

2007-03-24T20:30:00.000Z

Well, the vinblastine has been fine so far - possibly because we forgot the steroids (prednisolone), which I was meant to have at the same time as the chemo (for 5 days)... It's delightful not to have a sore jaw etc, because I felt really rubbish last time. I'm now on the second day of the steroids, after some debate about whether it was still worth having them. My intrathecal chemo (cytarabine) is on Wednesday, but I'm not too worried about that. It all depends on the doctor, and how quickly they find the gap.

I had a great night out last week to celebrate/commemorate one of the nurse's leaving the Day Unit (she was only on a 6-month contract to cover maternity leave) - I get on very well with Sophie and will miss her on Ruth Myles, but fortunately now we've connected socially I'm sure we'll be meeting up in the Real World... The evening involved dinner at a Wagamama-esque restaurant in South Wimbledon with plenty of other Ruth Myles staff, and then a very amusing trip to Inferno's with some of Sophie's uni nursing friends: I had a great time, possibly because Sophie matched my lunatic dancing!

Otherwise I've been very busy finishing off 'The Malteser' and doing some more research work for Jim Naughtie - some trickier stuff this time, but it's interesting, and will at least bring in a little money! I also need to prepare properly for an interview on Tuesday, and have been sending out a great many OMV emails. There are lots of OMV activities happening over the next few months: I'd love to get involved in all of them but life looks pretty busy nowadays:

Edinburgh (from 30th March til 3rd/4th April) chez Harriet
Downside (5th - 8th April) for the Easter Retreat
Italy (12th - 19th April) to see Mariacristina and Freddie
OMV Health and Safety Meeting (19th April) and AGM (22nd April)
Chichester Observer (23rd-27th April) for work experience

So there's lots going on! After all that, I'm hoping to move up to London, though that isn't confirmed yet. I'll need to find a job of some description to pay my rent, but a lot depends on my interview this Tuesday.

It's all very exciting, and I continue to think how wonderful it is to be able to do all this.

Vinblasted

2007-03-15T19:05:00.000Z

It's probably about time I posted again, and excitingly there's even a slight change to my medical routine to tell you about. The time for my three-monthly chemo arrived last Tuesday (6th), but one of the counts from my liver function was pretty high, and seemingly getting higher. The doctors decided it was probably a drug reaction, and though not ideal, wasn't anything to worry about (medical readers might like to know it was my ALT, or Alanine transaminase). Apparently it would either be the fault of the fluconazole (antifungal, one tablet once a day) or the methotrexate (chemo, seven tablets once a week), so since then I've stopped the fluconazole. It seemed to work, as the count had dropped again by this Tuesday just passed, and an ultrasound of the liver showed nothing amiss. So I had my vinblastine on Wednesday, and am now just hoping I don't have the same side-effects as I did last time... According to one doctor, the sore jaw, constipation and sore back amounted to ALL the side-effects, so I did well that time.

I also got to see my consultant for the first time in ages. This was nice because it reassured me that everything is pretty much going to plan so far, although my dosage is now going up again as my body seems to be coping very easily with the 50% dose I've been on since January.

I have been a little snotty, but not feeling bad at all with it, so hopefully my neuts will soon sort that out. It's sometimes easy to forget that I am still having treatment, and do still need to take more care than usual, but generally I've been behaving. I blame my snottiness on the trains: I was stuck at a station for far too long the other night because a previous train had had a power failure... Eventually I gave up and went a very long route instead.

Various social highlights recently have included seeing Jess (hurrah! She's so well, which is brilliant considering how unwell she was - you might remember me asking you to keep her in your prayers etc when she had a fungal infection in her brain), going to farewell drinks for a nurse (little Laura, who is going to Australia; it was lovely to see a few nurses in a social situation at last, not just in hospital), and the usual OMV meetings and reunions.

I've also been trying to sort out my future, which is both very exciting and a bit terrifying. I'll share details when things are more concrete, but there are a few possibilities, some exciting!

I have a couple of other things to blog about, but this post is long enough already, so they'll have to wait...

My Celebrity Look-alikes

2007-03-08T17:35:00.001Z

My cool celebrity look-alike collage from MyHeritage.com. Get one for yourself.

Say it with beers

2007-02-20T16:23:00.000Z

There has been a fair bit going on in my life, but I'll try not to bore you too much with ALL the details. As my dabbling with leukaemia is the main reason almost all of you are reading this, I think that takes priority in my ramblings...

All continues to go well. I'm still having weekly blood tests, though at St George's they're starting to consider making them a little less regular. The idea is that the chemo tablets make my blood counts fluctuate, and that's approximately what they're doing. The next three-monthly dose of intravenous vinblastine is due in a couple of weeks' time, and I'm hoping they might be a bit kinder with the dosage... Last time, if you remember, I had a very sore jaw, and back, and was very blocked up downstairs.

I'm also going to see Dr Willis, my consultant, for the first time in several months - possibly since I stopped being an inpatient. I'm hoping it'll just be a short consultation, as from my perspective everything seems to be going pretty well, and I'm quite happy to carry on as I am. It will, however, be nice to be sure that the right things are happening... I actually found myself with two appointments to see her, but assumed that was owing to a lack of communication, so have cancelled one.

I was slightly snotty yesterday, but seem much better today, so don't feel it necessary to ring St George's. It's a good sign, I reckon: my immune system seems to have managed to deal with it very effectively. Hurrah!

Outside the medical sphere, life has generally been enjoyable, and has included:

John Monckton's memorial concert in Chelsea. He was the banker killed on his doorstep a couple of years ago by burglars - it was all over the news. He was Chairman of the OMV in his time, too, so a few of us from the OMV helped with ushering etc on the night. It was a beautiful concert, with a fabulous Bevan-based choir (they sang Bach's Magnificat and Mozart's Ave Verum) and readings by Julian Fellowes.
The Battersea Real Ale Festival. I was about to leave London, but thought I'd pop in for a couple of pints with Rachael and Chris. That was an underestimation. Nice beer, as far as I can remember...
Aoifeu's surprise birthday party. Great fun, and entirely unexpected for Aoifeu, so well worth it. Here she is with her man, Jon. It looks as though he's wearing a tiara, but I think that was just a trick of the light.

OMV Monthly Reunion. A good night, and a decent turnout. Unfortunately we made the mistake of accepting the waiter's suggestion of plates of cheese and hams without asking the price; fortunately the evening was entertaining enough for that not to ruin it!
Patients' meeting with the cancer team at St George's. Or did I mention this already? I brought up my two bugbears - internet access and food - as well as some other useful points (I think). A helpful evening.
Visit to Downside. I went with Giles to give an OMV talk, which was slightly more difficult than intended, as my collaborator hadn't warned them we had a Powerpoint presentation, so we didn't have a computer. But it went well, though unfortunately a lot of people are likely to miss out on coming to Lourdes due to oversubscription. The next morning the two of us wandered the school, seeing the developments (impressive: Caverel is cosy, too), getting used to girls being there, and meeting staff who are still there. I still think it's a great school, and it seems to have taken the change to co-education in its stride. We also attended Head Master's Assembly, at which I was prayed for by the entire school, and Father Leo explained my healthy presence as being proof of the "power of prayer" (they have been praying for me at Assembly since I first got ill). I was very touched. I even got on the website!

Granpa's funeral. It was a good send-off for the last of my grandparents, with a lovely eulogy by my aunt Katie.
Norton sibling celebration of Granpa's life. The five of us (Alice included) went to Tomandalice's, and accidentally drank quite a lot. Here we are before the beer (Duchy Original's Ale is lovely), wine and gin started flowing.

Dragonboat racing and Charity dinner at Sandhurst. Organised by Tom's Company, these were both fun, and raised plenty of money for 'Hopes and Homes for Children'. In the first Dragonboat race, the winning boat began to sink as it reached the finishing line, and ended up completely underwater, and therefore out of action. Fortunately there were two other boats... At the black tie dinner in the evening, it was lovely to get to know a lot of Tomandalice's friends a bit better.

Howard Norton, finally caught behind for 92

2007-02-12T14:44:00.000Z

We talk about 'a good innings', and Granpa's time out in the middle was definitely one for the life equivalent of Wisden. I shan't extend the metaphor too far (I may have done so already), but suffice with the announcement that Granpa (my father's father) died a week ago in hospital. I was lucky to have seen him several times during his final week, though he wasn't on top form and didn't seem to be enjoying life so much any more. For this reason, I think it was probably a relief to him and he was ready to go. His wife, my Grandma, died in March, and though he seemed to be coping OK at first on his own, in the last couple of months his health worsened dramatically. He was a great crossword man, which automatically makes him a great man in my book, and he was very witty. He was still sharp earlier this year, and showed glimpses of his humour even in the last week. He used to ring me regularly in hospital, too, for a little chat when I was first ill. This is him in March (he's the one on the left):
Farewell to Granpa. We'll miss him, but I'm sure he's somewhere nice.

Blood, books and babes

2007-01-19T18:25:00.000Z

Another week, another blood test, and this week's hospital visit was enhanced by a dose of Pentamadine. Pentamadine is given through a nebuliser (which pumps air or oxygen through a liquid medicine to turn it into a vapour, which is then inhaled), and is to protect me from getting pneumonia. I think. The blood results were fine, and though the Pentamadine isn't exactly tasty, it's never a problem or remotely painful having it.

There was, as usual, a decent amount of time spent waiting, but that helped me to read 'A Short History of Tractors in Ukrainian' by Marina Lewycka... It was funny, and had me laughing out loud occasionally, but also managed to be quite moving in places. I'd recommend it, as I would (perhaps even more so) 'The History of Love' by Nicole Krauss. The latter was stunning: beautifully-written and heart-breaking. It's also very literary.

I'm back in on Monday, because they think my blood counts may have started to drop by then. I've also signed up to attend a patients/medical staff meeting the week after, organised by the Cancer team. It might be interesting, and it'll be a good chance to mention i) food and ii) internet provision.

Here's a photo of MC and me chez Jo, Sooz and Aoifeu (and Tara, though she was taking the photo):

2007, eh?

2007-01-15T15:07:00.000Z

This might be a record for not posting, which is particularly impressive considering at New Year I vaguely resolved to post more regularly... Too vaguely, no doubt. The usual excuses apply: I've been far busier than I should have been, and far lazier than I should have been, too. But now I'm back!

Christmas was, as my last post hopefully made clear, fabulous. It was good even when we were joined by Tomandalice on Boxing Day. A couple of times I stopped and thought about just what I'd been through, and how lucky I was to be able to enjoy Christmas in such good health. It was very special.

New Year was fun: a Murder Mystery at Big Phil's house... I'm not a big fan of going out for NYE, and a small dinner party with added acting responsibilities (including variable American accents) proved to be a great way to see in 2007.

I never seem to be able to think of decent resolutions in time, so generally I'm just going to try and be better this year. Better at keeping in touch with people, better at getting things done sooner rather than later, better at helping at home, better at giving people what they deserve. That sort of thing. It's a bit vague, I suppose, but it might be better than nothing.

Oh, and I want to get Burt Bacharach to perform at my 25th birthday party.
2007 has, as I mentioned, been a bit busy so far, but good. My first hospital visit of the year was meant to be for an Intrathecal injection, but counts were still a bit marginal, so they postponed it for another week, while restarting the chemo tablets (though halving the dose). This worked quite nicely, as I had the White Knights Ball coming up, and didn't especially want a sore back or any side effects. As it was, the IT happened last week instead, and was very easy - fortunately a doctor who had given me two before did it, so he knew exactly where to stick the needle! I don't seem to have had any nasty side-effects, either.

The White Knights Ball (follow links from www.omv.org.uk to see photos) was magnificent, and the bits I helped organise seemed to go OK. Best of all, I had all my family along for the first time, as well as a table and a half of friends from Jesus, Oxford, many of whom I hadn't seen for a while. It was great to catch up with so many people, though as always there were still lots I barely saw, if at all. We seem to have raised lots of money, too, but I'm yet to discover how much. I also had a great night at Row's house, for her brother's 21st birthday.

I'm now throwing myself back at the Malteser, which I had hoped to finish sooner, but which was somewhat ignored over Christmas/New Year. What I have done is looking fairly presentable, and there are some great articles, in my opinion.

Meanwhile, I've started doing some part-time research for Jim Naughtie, the Radio 4 presenter (he works on the Today programme these days). He is frantically working on a new series and book on European classical music in its political, social and historical context, and needs a little help now and then to find certain obscure facts. Gilly Orr, who works for the Today programme, recommended me: big thank you to her. It's not a lot of work, but it's a start, and is probably quite a good way to ease myself back into the working world.

However, all this talk of work and so on is thrown into relief by a wonderful surprise on Wednesday: Mariacristina came over from Italy... I didn't have a clue until I turned up at Jo's house and MC opened the door! It was wonderful, and I loved having her over. She even took me to Spamalot!, which was very entertaining. Thank you MC...

So, that's all keeping me busy, and life seems to be getting back to something like normality. My daily tablets and weekly hospital visits for blood tests don't let me forget that treatment is still far from over, but they've become such a regular part of life they tend not to bother me at all.

I hope the year's been good for you all so far! I'll blog again soon.

Happy happy Christmas!

2006-12-25T01:34:00.000Z

We (Norton père, little Harriet, Federico and I) are heading towards Midnight Mass - this means I have a little reception, so thought it would be a good opportunity to wish everyone a fabulously merry Christmas! Have a great day and enjoy the festive fun. I'm enjoying it doubly, having slept for most of the day last year... It's wonderful to realise how much rosier things are this time around, and I feel very fortunate to be able to celebrate in such good form. Mine's a bald Christmas,incidentally...

Happy happy Christmas!

The price of a name

2006-12-19T21:05:00.000Z

From the BBC News website:

Jimmy Choo - most famous for its shoes - claimed the £9.50 M&S satin handbag was uncannily similar to its £495 silk satin Cosmo evening bag.

I'm sorry, but I just can't understand how people can pay £495 for a bag, when an 'uncannily similar' one costs £9.50.

Here are some of my closest friends at the Christmas Reunion:
And my father and Mariacristina:
Apparently it's Christmas soon. I'm afraid I haven't sent any cards. But I do appreciate those I've received...

The busiest time of the year?

2006-12-17T23:03:00.000Z

What happened to December?! I had planned to take it easy, relax and not do anything. However, I seem to have been really busy. Whoops! Actually, it's been great, particularly as I don't feel I've been overdoing it. I've done lots because I've felt able to do lots, and when I haven't been feeling so great, I've taken it easy. A couple of people have given me the advice to 'listen to my body', and I've tried to do exactly that.

Having been stuck in hospital, and if not stuck in hospital then certain to be back inside within a short time, for so long, I came out to find quite a lot of bits and bobs that needed sorting out. And most of them still do. What's more, I've thrown myself back into my OMV work, so have lots and lots of responsibilities for that, again particularly because in some areas nothing has been done for a while... In addition to all that, I've still had to visit hospital at least once a week, and have been trying to bring my socialising quota up!

Medically, I started the maintenance tablets almost two weeks ago (Tuesday 5th), and had intravenous Vinblastine in my arm that day, too. The tablets are, well, numerous, but taking them doesn't bother me too much. They did block me up a bit, so of course I needed MORE drugs to keep my insides working, but generally they seem to have been OK. They include two different types of chemotherapy (Mercaptopurine every day and Methotrexate once a week), and at lunchtime one Friday I had to have a total of 27 tablets... Yum! I had five days of steroids, and then belatedly tapered them off when I was feeling sore, in case their sudden stop was the reason, but my face hasn't inflated. Yet. It definitely helped bring my appetite back up, though.

The side-effects of the Vinblastine, however, weren't so much fun. I got a really sore mouth (it felt like a structural pain, not ulcerous), which made eating, drinking and even sleeping difficult for a few days and nights. It then wore off, fortunately, but not until I'd had a couple of mostly-sleepless nights to knock me down a bit. Meanwhile, my back had started getting sore as well, so I found it impossible to get into a comfortable position, be it standing, sitting or lying down. Being blocked up probably didn't help that, though painkillers did a bit. Again, though, in time it got better. And now I'm fine! Next time I have vinblastine they may choose to reassess the dose to minimise those side-effects... I hope so!

Anyway, the most annoying thing about not feeling so great for several days was that it was during Mariacristina's second visit: this time she came for a much more sensible 8 days. However, we still had a great time. We spent a couple of days in London, during which I took her up and down the Thames, around the London Eye, across the ice at the Tower of London, and to a meal at Madison's (in the Washington Mayfair). It was all lovely, and I enjoyed being a London tourist - I learnt loads, particularly on the cruise, which I recommend whole-heartedly.
After a couple of nights at Tomandalice's we then came down to Chichester, where we attended a fab charity concert (for Macmillan nurses) with the Neath Male Voice Choir, a professional soprano whose name I've forgotten, and celebrity readers including Rupert Penry-Jones (Adam from 'Spooks'), Geraldine James (Hilary in 'The Amazing Mrs Pritchard') and Robert Hardy (Cornelius Fudge from the 'Harry Potter' films) after an, erm, Italian meal. On Tuesday, Mariacristina took me to see 'The Producers', which was enormous fun - we then had another delightful meal together before she left on Wednesday.

Since then it's all been OMV, with a White Knights Ball meeting on Wednesday and then this weekend the Christmas Reunion. The former was productive; the latter enormous fun, with a really great bunch of people, both helpers and guests. Seeing lots of my best friends, all in one place, was brilliant, and I made a few new ones, too. We had a mini Carol Service (ie choose a note, start singing), Christmas dinner, a Christmas party, and then went to Mass in Worth Abbey this morning. The only sadness is that it was over so soon... Worth was lovely: it was started by Downside, and it was interesting to see the similarities but also very clear differences. Adam introduced me to the Abbot, explaining our rivalry (I tell Adam he made two big mistakes: going to Worth and going to Cambridge), and I think hoped to get some support on his side from him... However, it transpired Father Christopher not only went to Downside and Oxford, but even read Modern Languages! He is a good man, but I have no plans to follow in his steps when it comes to careers.

On Wednesday I have an intrathecal at St George's, and hope to go to drinks parties either side of it in London. Then on Friday I'll be off down to Devon with my father and Freddie, with Harriet joining us on Saturday and Tomandalice coming along on Boxing Day. But I'll post again before then.

I ought to do some Christmas shopping...

Where's George?

2006-12-07T22:58:00.000Z

For all those keen followers of this blog you may be pleased to hear that George has been located, having far too much fun to post on his blog. First I spotted him at the 'Bad sex awards party' over a week ago and now he is sitting in front of us drinking wine. He does not apologise for his lack of blogging - he is too busy enjoying himself! All I can recommend is that when any of us see him we post a comment on what he is up to as he is far too busy to do so anymore...

[This post was brought to you by the letters A, L, I, C and E]

The colour supplement!

2006-11-27T20:36:00.000Z

Having not been able to upload photos to the blog for a while, it's about time I put an end to all those rows of words, words, words, and got a bit of colour in here. So here are some highlights from the past however long...

This is me and Mariacristina, who was one of our neighbours back when we lived in Naples... Anyway, 7 years later, she came over to London! 'Twas great to see her again.

This is the posh dinner party Jo had at her enormous house a few weeks ago. From the bottom left, clockwise: Aoifeu, Robyn, Jo, George, Sooz, James, Jon

And this is my lunatic family with various unhinged partners just before Freddie went to Rome. Left to right: Harriet, Daddy, Sue, Tom, Laura, George, Freddie, Alice. There's a sensible version, too, but who would ever want to see that?

Maintenance

2006-11-23T23:34:00.000Z

I'm feeling a bit overwhelmed at the moment.

Today I was discharged, and that brought a close to the long intensive part of my treatment. Next step is Maintenance, which is done as an outpatient, and is a lot easier. For months I've been treating this moment as something to aim for, and it really hit me today how special it is to have reached it.

I've probably downplayed to myself a lot of what I've gone through, and I suppose that being discharged from my last definite inpatient stay really made me realise just how big a thing it is to have made it this far.

So I'm a bit dazed, and will post again soon.

To infinity and beyond

2006-11-22T14:10:00.000Z

My neutrophils, 0.0 on Sunday, have been rocketing up, reaching 0.6 by Tuesday! Naturally this is great news, and hopefully means escape over the next couple of days. One antibiotic has been stopped, and all in all I'm well.

Unfortunately, though, my hair seems to be falling out again at last! It is unfortunate because currently it is wonderfully soft, and depending on the light seems to be mostly blond, white or silver... It's so gorgeous to touch, and I'm forever trying to fluff it up even more. That, for me, means a lot, as I normally barely even notice my hair. But now it's falling out again! Hopefully it will return as lovely as it is now.

I am sure Paul Simon's lyrics mean a lot more than I ever knew about - thank you as ever, Amphimacer for sharing some of your knowledge...

Here are a few of my current favourite lyrics. Generally they're a bit more easily understandable - perhaps I'm simpler than I ever realised. Guess the band and song (unless you're Rob and have therefore probably heard me sing most of them far too often) - no cheating please!

1. 'Don't pick fights with the bullies or the cads -
I'm not much cop at punching other people's dads.'

2. 'Is there room in your heart for one more trip to the moon?'

3. 'You'll never get surprises
Living in Devizes.'

4. 'They're drinking a drink they call loneliness...
But it's better than drinking alone.'

5. 'There is only one cure for unrequited love:
Chocolate and howling at the moon.'

6. 'And he yells to the cook with his arms open wide,
"Oh, bring me more fish: throw it down by my side."
And he wants so to belch, but he's too full to try,
So he stands up and laughs and he zips up his fly.'

A few posers (no, not Make Me a Supermodel)

2006-11-19T23:50:00.000Z

From a distance, is Paul Simon actually George Bush? And while we're at it, does anybody have diamonds on the soles of their shoes? I'd love to meet them, if only to ask why. And finally, what kind of a song lyric is 'I can be your bodyguard, and you can be my long-lost pal... I can call you Betty, and Betty when you call me you can call me Al'? I've often wondered.

I'm assuming my neutrophils are approximately 0.0 now, as they were getting there recently, and probably haven't started the trek back up yet. I've been on antibiotics due to my usual flirtation with the odd temperature above 37^, though it's been quite defiantly below that today, so perhaps they won't go on forever.

I had a lovely visit from my lovely father yesterday, with lovely gifts too. Otherwise it's been Trappist-esque-ly quiet (ie very quiet, Katie C), though I have had some limited fun with my new friends Noel, Des, Anne and the rest (for those unfamiliar with UK television: they're gameshow hosts). And there was plenty of rugby on. England even won! And as for Planet Earth... Wow.

I haven't been sleeping as much as I'd like to, in large part due to often not getting my evening antibiotics until very late - though one evening I was so tired I fell asleep and barely even registered the nurse coming in to take it down when it finished. Fortunately SuperLee is on tonight, and she apologised about the lateness of starting, despite being by far the earliest to put them up...

Anyway, there's only one way the neuts can go now, so let's hope they do so pronto.

2006-11-14T18:17:00.000Z

Am in hospital. It's not very exciting. My phone extension number is 2563. And that's about it, really.

Oh, and I'm watching far too much 'Deal or No Deal'. It's so silly. Yet so compelling. Well, not that compelling, really, but it's a bit better than banging my head against the wall.

Today I'm chained to the drip-stand, with two bags of blood and two syringefuls of potassium. Unfortunately at this very moment I'm desperate for a wee, and the line doesn't reach, so if you don't hear from me again assume that I've popped.

Oh, and before you ask me how long I'm going to be in - I don't really know. Ideally, my blood counts will rapidly recover, I won't pick anything up, and I'll be out in time for Lost (Sunday evening). But regular readers will know it's seldom that simple. Wouldn't it be nice if it were, this time?

Several people have said 'good luck with the chemo'. In the hope of putting an end to that: I'm not having chemo now. That was the week before last. I'm in this time as a precautionary measure while my blood counts are low. Capisci?

Quick update

2006-11-11T16:12:00.000Z

It's now Saturday, and I'm still not in hospital. But no, my blood counts haven't been miraculous: there's not a bed free for me. There will be tomorrow, though, and actually it's worked out nicely, as I had plenty of OMV business to sort out (and emails to send), and here at Milly's workplace where I'm staying (she's a nanny, so it's a house - I'm not staying in an office) I've been able to get online and send things that really shouldn't have to wait a week. If I stay for a week. We'll see. Theoretically, it could be the last time I have to stay in hospital, I think. Practically, though, that's very unlikely.

The Power of Now

2006-11-10T10:02:00.000Z

Well, well, well. No sooner have I finally escaped hospital after Consolidation 3, than Consolidation 4 kicks off, and flashes by in the blink of an eyelid. Fortunately it was as an outpatient. I started a week ago Tuesday, and finished on Saturday. This is particularly exciting as Cons 4 is the last phase before Maintenance, when things get much easier. The doctor was expecting to haul me in on Monday or Tuesday of this week, but yesterday my blood counts were still good: neuts 2, haemoglobin 10.7, WBC 3.7, and platelets 172. I was a bit surprised, because the neuts had seemed to be dropping fairly quickly, but I'm not complaining. I'm back to St George's on Friday to have blood tested again.

Meanwhile, I've not made it home yet since the end of Cons 3, and have been abusing various lovely people's hospitality as usual. I also made it to Ali's birthday, which was lovely, particularly as I knew quite a few of the people from her last party. And on Saturday, I was in Blackheath to celebrate Floyd (2 years in remission from CML, another type of leukaemia)'s 40th birthday, during which we enjoyed the most expensive fireworks display in the UK. No, Floyd's not a billionaire (though he is the bassist for top 80s group 'The Almighty') - the fireworks were a public display on the heath.

Also there was another leukaemia friend, Milton, on whose messageboard for leukaemia sufferers and carers I'm a regular, and have made some good friends. He came with his wife, Bridget, who was interested to hear my 'bacon sandwich beats leukaemia' philosophy, because she's been reading Erckhardt Tolle (sp?)'s 'Power of Now', which explains that most people are insane, because they live in the past or the future. I feel that if I'm eating a bacon sandwich, for example, I'm happy, and it doesn't make a difference whether I have leukaemia or not... According to Bridget, I'm living the Power of Now naturally! It's nice to have a bestselling philosopher backing me up.

Forget Hallowe'en

2006-11-01T00:15:00.000Z

It's my anniversary! A year ago this very night (31st), I first went into St George's. On the 1st November, I had the definite diagnosis.

It's quite a big landmark, and I shall hopefully soon write more about it. For now, though, having started the final Consolidation phase as an outpatient, I must get some sleep.

A year!

Freedom!

2006-10-26T13:27:00.000+01:00

At last, yesterday early evening, I escaped hospital. The doctor had told me on Tuesday that I was 99.9% certain to be able to leave yesterday, but I didn't tell you lot because I didn't want to tempt fate, particularly as that 0.1% has a nasty habit of proving vital... And it seemed as though it was once again going to ruin everything, when my morning blood count showed an increase in one of the liver counts. I got sent to Scanning for an ultrasound scan... but fortunately it was fine. So finally I was given the All Clear, and rang Sue, who very kindly drove up and brought me down to the South Coast.

My arm is still proving quite difficult to straighten entirely (due to the PICC line), though it generally isn't as sore as it was. Partly that may be due to the poultice I had on it (looks like mud, smells like Vick's) for 24 hours, or perhaps my arm is getting used to it and the mechanical irritation (that's the technical term) is easing. I have to go back on Monday, to the Day Unit, for a blood test, particularly because that liver count was a bit up, so I think Michaela's going to have another look at it then and might have to take it out (boooo!).

Excitingly, it seems I should be able to make it to the OMV Autumn Drinks Party on Friday, which I am very pleased about. My legs aren't as strong as they used to be, though, so if you're there and I insist on using a chair, don't take it personally.

I have lots and lots of emails to catch up on, so I'll slowly work my way through them - if anybody needs to know anything urgent then let me know and I'll try to get back to you asap.

Fwd: Blogger post failed: And then there were 1

2006-10-24T11:05:00.000+01:00

Sent yesterday!

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Author: postgateway@blogger.com
Date: 23rd October 2006 9:47 pm

Blogger could not process your message at this time.

Error code: 6.1B0E9FF

Original message:
From: gdn*****@btinternet.com
Date: Mon, 23 Oct 2006 22:40:45 +0000
Subject: And then there were 1
x10^9 neutrophils! Quite a leap from 0.4 yesterday. Hurrah!

And the beat goes on...

2006-10-22T23:40:00.000+01:00

Sorry I haven't updated for quite a few days - it's mainly because nothing seemed to be changing and I was waiting in hope for something to break the cycle... Still having a low-grade fever, and with an infection marker showing a possible bug, I was still getting antibiotics and starting to wonder whether I'd ever get out. My neutrophils were down to 0.0 and I did indeed have a PICC line put in.

The line went in easily enough, and has been working fine, but unfortunately there's been some 'mechanical irritation' - my upper arm is swollen and pretty sore. Michaela, who put it in, will hopefully have a look at it tomorrow, but I'm not quite sure what the options will be. The doctor mentioned something anti-inflammatory, though I haven't had it yet, or they might have to take the line out. Which would be very annoying! I don't have much luck with lines.

Meanwhile, my neutrophils are climbing (0.4 today) and the high infection marker is falling, so hopefully my temperature will come down too. The doctor seemed quite positive about that, particularly because if there is any infection, the neutrophils should now be able to whack it. Hurrah for neutrophils! However, we all know by now that nothing is certain, so I don't want to get excited about getting out just yet.

One excitement this week, though, was meeting the Mayor of Wandsworth, who had heard a couple of ex-RMU patients extol the virtues of the ward, and decided to visit. I was nominated as one of the patients for him to talk to, so in he came with his white hair, beard, enormous height and massive bling. Well, his mayor's chain. He seemed a nice feller.

Another excitement I'd LOVE to be out for is the OMV Autumn Drinks Party this Friday, particularly because of last year. I went along, a couple of days before my appointment with the haematologist, and was quite soon a bit of a wreck, ending up in A&E because I was in such agony. So I would love to be able to make a healthier appearance, to show how much better I am, rather than my friends thinking 'remember last year, George was very ill... Is he here tonight? Oh, no, he's still in hospital'. It would be a psychological boost, as well as lots of fun...

I'll keep you all updated on anything that changes - hopefully as soon as possible!

The End of the Line

2006-10-16T14:13:00.000+01:00

They seem to have vaguely sorted the temperature - admittedly it's a bit temperamental, veering between very warm and a bit cold - so life's a bit more comfortable in that sense. It does still sound as though they're building another hospital upstairs, though, so daytime sleeping isn't quite as easy as I'd like... And no, I'm not just lazy - it's as impossible as ever to get an uninterrupted night's sleep, particularly when Obs are joined by antibiotics being given at ungodly hours.

Anyway, last time I wrote I was probably spiking temperatures every so often, and the culprit was named as a small infection in my line. The doctors were giving me the right antibiotics for it, but it was stubborn, so on Friday the decision was made to take out my Hickman line. This made sense, but was nevertheless a sad occasion, as it has served me well and saved me from hundreds of jabs...

Since then, my temperature has stayed down, and I had hoped to be finishing my antibiotics today. Unfortunately, my consultant seems to be in no rush to stop them, so it looks as though they're still on the menu.

Over the weekend I had a horrible cannula in the back of my right hand - other locations had failed, so it was left to that tiny vein to take all the antibiotics coming in. Ouch! Fortunately that came out this morning, and the plan currently seems to be to give me another PICC line - remember them? I don't have enough treatment left to make another Hickman worthwhile, but a PICC will save my veins from regular cannulas. So it's good!

As cold as ice

2006-10-11T16:15:00.000+01:00

The most significant thing to happen since I last wrote has probably been the night I spent in the Day Unit. Room 1, having been quite toasty generally, suddenly became absolutely glacial on Sunday evening. I think it was approaching absolute zero.

Somehow I survived Sunday night (sleeping in my dressing gown and woolly hat, with at least 4 blankets), but on Monday I realised just how cold the room was, and spent the entire day out on the ward. The kindly Day Unit even let me squat in one of their comfy chairs! The engineers had been called regularly throughout the day, but never appeared.

So night-time arrived, and the nurses agreed that there was no way I could be expected to sleep in the Room 1 freezer... So, the Day Unit it was! It's not really designed to be slept in, but it was lovely and warm, and I got a good night's sleep, as well as a slight frisson at being somewhere I shouldn't really have been...

The one drawback was, of course, that being the Day Unit, it needed to be used during the day, so at 8am I had to leave my warm sanctuary and venture back to the Arctic. Fortunately by now another patient no longer needed their portable heater, so climbing into bed in Room 1 (again armed with 4 blankets, dressing gown and woolly hat) was just about bearable.

And now at last they seem to have sorted the heating out! My room is at more of a normal temperature, and I can control it to some extent with the portable heater. It did mean, though, that having gone to bed all wrapped up in blankets etc, I woke up bakingly hot! You can't win...

As for my own temperature, it seems generally to be better, though whenever I think it's settled down for good, it seems to spike. It hasn't for a couple of days now, so fingers crossed. I did wonder at one point whether my room temperature had been dropped so low in order to try to keep my temperature down!

I've been a bit less fed up with being in since I've been off IV fluids, and therefore able to wander the ward, but it is frustrating not having any idea when I might get out. Soon, I hope!

Just when you're ready to go...

2006-10-06T20:46:00.000+01:00

Bizarrely, there must be some little chip inside me that really likes staying in hospital. Almost as soon as the possibility of getting out for the weekend arose, my temperature went up and my blood pressure went down... My white blood counts are good, so they're not too worried, but to be safe they've got me on antibiotics and a saline drip. On the plus side, the nasty diarrhea I had seems to have cleared up.

I assume the plan is to carry on with the antibiotics etc until my temperature and b.p. are definitely settled, and then hopefully if my blood counts are at a good level they might let me go. I don't know when that will be, though.

Today I've been pretty restricted by having at least one, and usually two drips plugged into me all day - between saline, antibiotics x2, potassium, magnesium and anti-sickness my in-tray has been quite busy!

Good news! Bad news...

2006-10-05T13:30:00.000+01:00

Good news! Consolidation 3 is finished.
Bad news... I can't go home yet.
Good news! I can probably stay with friends locally for the weekend.
Bad news... I'm moving to tiny isolated room 1 (ext 2560) this afternoon to free up my big room 7 for someone coming out of ITU.

Sleeping the sleep

2006-10-01T18:56:00.000+01:00

All is well. Though I do have somewhat low blood pressure. The natural nursey reaction is to tell me to drink more, but my fluid balance charts show that I've been drinking quite effectively, thank you very much. I don't think it's anything worrying, and it might just be because of the chemotherapy , but I do wonder whether it's linked to me feeling pretty sleepy recently. Last night, for example, I must have slept for over 12 hours, but still dropped off again this afternoon...

Now, those who know me quite well might be surprised to hear this, but I'm actually slightly scared of sleeping too much. I guess this has only really been the case since I've been ill, and the logic seems to go something like this. If I sleep an hour longer every night than the night before, eventually I'll reach 24 hours sleep, and I'll never wake up! So, much as I enjoy sleep, I can't help but feel very slightly worried about sleeping too much. It's only a very small fear, but thought it worth mentioning.

Otherwise no real news. The food is still the worst thing I have to put up with, but fortunately good people like Cat and James exist, who restocked my fridge yesterday. I've only two more days of cytarabine, and then finish this phase on Wednesday with the last tioguanine (which is the tablet chemo). HOPEFULLY they'll let me out soon after, though they may wait for neutropaenia to come and go. We shall see.

Why protect mealtimes when meals are so rubbish?

2006-09-28T22:18:00.000+01:00

Unfortunately, having finished the last post optimistically stating that I was feeling better and seemed to have things taken care of, I then proceeded to feel pretty nauseous again, and over the past few days have thrown up a couple of times and had some diarrhoea... I am now off most of the antibiotics, however, as my temperature has settled a bit (though this evening was above 37 again), and at the moment my tummy also seems more settled. However, I'm well aware this could be a false alarm again, so I'm not getting too excited!

As a result of feeling pretty rubbish, I haven't had much chance to do anything, save watch Spooks, Lost and O! Brother Where Art Thou. Today I finally managed to attack the OMV database, which has of course fallen back under my control, and unfortunately it looks as though there might be quite a lot of tedious work to be done there... Lucky I've not got anything else going on, I guess.

Today the gorgeous Row, Jo and Aoifeu visited, which naturally cheered me up a lot. There was a moment of panic, however, when they arrived at 5.30pm to discover that the ward now has protected mealtimes, meaning no visitors between 12.30pm and 1pm, and 5.30pm and 6pm. I hadn't been told this, but even though I had sensibly declined hospital supper, I wasn't allowed to have them in my room until 6pm. So, easy solution: I went out instead! We only went as far as the Atkinson Morley Wing (the plush part of the hospital), but it was good to be out of my room. But let this be a warning! Do not visit during protected mealtime! At least not when I'm neutropaenic, which I probably will be in the next few days.

One last rant, though: the food has got no better... How can they feed it to us?! My tummy is a bit tender anyway, and even the smell makes it gurgle. Hmph.

An early scare

2006-09-25T22:46:00.000+01:00

Well... My first two days back in haven't quite been as smooth as I might have hoped... I had occasionally felt a little rough in the days before I came in, but it was only slight and I put it down to natural chemo-provoked nausea. However, on Sunday I felt a bit worse, and progressively so as the day went on. What's more, my temperature started climbing, so I wasn't all that surprised when the evening saw me throwing up and spiking a temperature of 38C. I did feel pretty horrible then, but some anti-sickness and antibiotics did the job, as I then slept like a log and felt fine when I woke up this morning. And my temperature was back down! So that was a relief. I still have a neutrophil count of 1.6, which means I'm not neutropaenic, so that probably helped, too.

Not much else has happened, apart from Europe winning the Ryder Cup (yay!) and Pompey finally losing and conceding a goal (boo!) - I've been sleeping quite a lot, perhaps due to the relatively heavy load of chemo I've been for the past few days. Tomorrow is the final cytarabine before a few days off.

Sadly the internet is still not flowing on the ward, though it is still in the pipeline. Ho-hum.

Room phone number

2006-09-24T14:38:00.000+01:00

2566.

It's that Back to School feeling

2006-09-22T23:17:00.000+01:00

Tomorrow I shall return unto the hospital of St George, which feels a bit strange after two whole months out of it... No doubt I'll be back into the routine of it very quickly, but at the moment being an inpatient is a distant memory. My blood counts on Thursday were very good again (higher than last week, indeed), but the cyclophosphamide (ie the chemo I had on Thursday) is likely to have hit them a bit. What's more, I have four consecutive days of chemo now, so it's much easier and safer to have me in than not. If my blood counts do not drop too quickly, I should still be quite free, and - who knows - perhaps even able to pop out for the evening. I'm not counting any chickens, though.

On Wednesday evening Harriet and I went to play at Tomandalice's house, meaning that I managed to be their first AND second guest, which is a great accolade. It's a good big house, too, and they cooked us up an Indian extravaganza. And ice-cream. Though that wasn't cooked. We had dropped Heidi-hi Wiggleswothergill off on the way up: Heidi-hi is one of Harriet's lunatic friends, and delightful to boot, so she brought an extra dimension to the days she spent chez Norton. I think she and Harriet have now dragged their partners (Duncan and Alan, Heidi-hi's husband) to the depths of Scotland to be silly for a weekend.

It has been great being a normal person again, able to go out, see people and have a few beers, and I think I've done a pretty good job of making the most of it... Hopefully, though, it won't be long before I'm out and about again, when I reached the fabled Maintenance phase.

Here, thanks to my new friend Penny, is a photo of me, Hannah and Andrew at Hannah's wedding last Saturday. My pose is perhaps a little over-exuberant, but they are two of my closest chums, and Hannah was married!Great days, great days.

I'm hoping I might be able to sneak online when in Ruth Myles, this time, but whatever happens I'll post my new extension number when I'm there. And don't think that just because you've visited before means you don't have to visit any more! Hahahaha!

Those photos

2006-09-20T12:38:00.000+01:00

Mini-adventure
Robin rockin'
Girls (you may need to click for larger version)
(thank you to Metro)

Soon (perhaps Thursday/Friday) I should also have photos from the wedding, the family shindig and our chicken chez Big Phil (where, I forgot to mention, I had a laughing fit... It was one of those laughs that you just can't stop, and your ribs are aching and the tears are streaming down your face and you have to throw yourself onto the floor to try to stop the nonsense... Laughter is the best medicine?).

Why are pirates so cool?

2006-09-19T17:48:00.000+01:00

Because they AAARRRRRRRGGGGHHHHHH! Today is National/World (I forget which) Talk Like a Pirate Day, and I feel a bit bad for not letting you know sooner... This post is also my TWO HUNDREDTH post on this blog, so that's a nice milestone too. It's going to be a pretty random post, though, as there are lots of different things to put on today. There should be lots of pretty photos but my connection's dodgy so they're not uploading. I will keep trying, but for now you'll have to use your imaginations ;-)

Firstly, I promised some photographic evidence of my Mini adventure the weekend before last...
[GRRRRRR IT WON'T UPLOAD!]
This is me and Rachael in the back as we drove down the motorway, with the wind through our hair. Well, through Rachael's hair, and over my bald pate. Exhilarating!

On Wednesday I went to see (the) Requiems, and they did rock. Here's my cousin Robin throwing one of his many rock poses...
[GRRRRRR IT WON'T UPLOAD!]

On Thursday I had the final daunorubicin of the phase... Did I tell you that it turns my wee red? I was a bit worried when going to the loo in pubs that someone might catch a glimpse and call a doctor, but fortunately nobody did! I also caught up with my overachieving friend, Charlotte, which was lovely, and stayed with her sister Nicola. Hurrah!

At some point over the past few weeks I saw this cartoon in one of the 37 different free newspapers now available in London (though 'news'papers does stretch it a bit). It made me laugh.
[GRRRRRR IT WON'T UPLOAD!]

On Friday I stayed at Tomandalice's - I was their first guest in their new Sandhurst lodgings. Tom was out on exercise all night, though his group were having a quiet moment, so he popped home for a cup of tea and to say hello at about 11pm... He then returned at 8:15am to have a bath, breakfast and get changed into clean kit, before heading back to work. Mad! I asked the not-unreasonable question, "Do you work all day every day?" Apparently not usually.

I've been reading 'The Book of Lost Books', which is proving to be fascinating. It is an incomplete history of books that have been lost, were not completed, ended up very different to how they were going to be, or were planned but never written at all. From the great Greek authors right up to the 20th century, it is a very entertaining look at what could have been. It is frustrating to think of all those potentially brilliant works that we will never see! I can't currently remember what I read before that: I'm hopeless at remembering when I read what, so sometimes I even find myself reading a book for the second time, and only realise when I suddenly get to a point where I know what's about to happen...

On Saturday I had a wonderful day at my friend Hannah (L)'s wedding. Hannah was my best friend when we were living in Naples, and was marrying an army chap she's been with for several years now. It was a fab day, and I made some lovely new friends by throwing a few shapes on the dancefloor (hehe), as well as catching up with Hannah and family, and my oldest friend, Andrew. It is a bit bizarre to think that Hannah's now married, though... Anyway, best of luck for her! She's off to live in Germany, where it'll probably be easier to visit her than when she was down in rural Devon.

Sunday was a lunatic evening, as my entire immediate family were at home, with assorted appendages (Alice, Sue and Laura), celebrating Freddie's departure for Rome on Wednesday. My siblings and father can be a bit silly at the best of times, so throw all of us together and you end up with a very jolly evening of bad jokes, worse singing and much merriment.

Last night I had an interesting chat and realised that my 'I don't want to be defined by my leukaemia' post was probably slightly off the mark in at least one sense. Harriet and I, and Harriet's friend Heidi, went to Big Phil's for a lovely meal, and I was telling them how I'd like to see whether I can get any freelance journalism work, come November. I added that, having had leukaemia, hopefully I'd have a different angle: something extra to write about or to colour my views. And I realised that I do not feel that leukaemia is a burden - it is not something I will seek to detach myself from when it's over. It has been part of my life experience; it has formed my character; it IS an important part of my life. That is not, of course, to say that I will define myself by it; but it does mean I will not ignore that part of my life. On the contrary, I will try to use the lessons learnt in a positive way.

Tomorrow (Wednesday) I'm going to Tomandalice's again, this time with Harriet, and then on to St George's for Chemo Thursday. Cyclophosphamide this time! Woooooo! I don't think I've had that yet. On Saturday I'll probably become an inpatient...

Like a yo-yo

2006-09-13T12:40:00.000+01:00

Just a quickie before I go up to London again (for Chemo Thursday, of course, but also an OMV meeting, a gig by my cousin's band - see '(the) Requiems' in my links) - and the occasional social event. What's more, I'm going to a wedding on Saturday: hurrah! I guess I'm at that age now, when people start to tie the knot...

Anyway, I wanted to mention some other excitements I had last week, which included a lovely dinner chez Ellie and a Mini adventure on Saturday morning. Upon discovering that Katie and Rachael were getting a lift to a hen party at Goodwood and Hayling Island, I gave up on the idea of getting a train down (as that's my neck of the woods) and ended up having a hilarious trip down South in an open-top Mini Cooper... Photos to follow (as I'm rushing for a train).

I've also discovered my head is great for writing on! More about that later, too.

Accidentally playing the cancer card

2006-09-10T17:55:00.000+01:00

I was in London on Friday for Lou Noble's farewell drinks before she goes to New York for a couple of years, and after a few drinks at All Bar One in Clapham, we went on to the Clapham Grand to continue the celebrations (blood counts still good ).

Katie C and I were a bit behind the others, so got to the queue just as another group of people did. In order to be with the rest of our friends, we skipped in front, and one of the people we'd gone ahead of addressed Katie:

Randomer: "Go ahead, I don't mind at all as your friend [ie me] has a silly hat [I was wearing my Buff]."
Katie: "Thank you."
Me: "You never know when a silly hat will come in useful."
Randomer: "So, what, have you got cancer or something?"
Me: "Erm, yes, actually."

[Randomer's face drops]

[long pause]

Randomer: "No way... Seriously?"
Me: "Yep..."
Randomer: "Oh my God, I'm so sorry. I can't believe I said that."
Me: "Don't worry, it's not a problem!"
Randomer: "Seriously, I'm so stupid, I feel so bad."
Me: "It's ok, really, I'm not in the slightest bit offended. I'm quite happy with it."
Randomer: "No, I'm so sorry. Let me pay for your entrance."
Me: "Don't worry! I mean it, there's no reason at all you need to pay for me to get in."
Randomer: "I insist. I can't believe I said that. That's so bad."
etc.

He wouldn't take no for an answer, and paid my £8 entrance fee! I wasn't quite sure it was ethical tolet him do so, but hopefully it appeased his conscience and he recovered from my surprise response...

Long live the cancer card!

Fun fun fun

2006-09-05T22:37:00.000+01:00

Thank you for all the reassuring comments you added to my last post, even if I can't help but doubt I'd be hearing such compliments if I hadn't got leukaemia in the first place ;-).

Anyway, it's been another decent time between posts, and once again that's due to FUN! I've been up to all sorts, as I continue to ignore my illness as much as possible. This is made easier by continuing high blood counts, as shown on Thursday:

WBC 5.1
Neuts 3.7
Hb 11.9
Platelets 245

FAO Katie Carson: that means I'm healthy. Almost as healthy as a normal person, indeed! The neutrophils are flying high, which means I have a good number of cells to fight bugs and infections, and the haemoglobin is pretty good, so I'm getting a decent amount of oxygen around my body and therefore have enough energy.

So Chemo Thursday proceeded as expected, with, erm, some more chemo. I had got up exceedingly early in order to get there, which at least had the benefit of assuring me that I can still get up early if I need to... I also seem to be in the habit of having just an orange from the delights of the hospital food trolley, which both times has been a complete disaster and left my much stickier and messier than before. Perhaps I'll learn. Or perhaps I'll be stubborn and hope that this week is 3rd time lucky. There were some interesting characters in the Day Unit with me, but I shan't post about them in case it's against blogging ethics.

Then I popped along to Bushey Park in order to join Amy's and Alex's joint birthday celebration picnic, which was delightful. The people I knew all left just before or just after I arrived, but I like to think it wasn't personal. Then I whizzed back into town, saw The Hof briefly in order to relieve him of the OMV Secretaryship - hurrah! I'm now OMV Secretary again, which is great news and will give me something to really get my teeth into. We had a ceremonial handshake, but perhaps more importantly he gave me things like the database. The evening was a relaxed affair at Sheila's: she cooked and was very self-deprecating about it, but it was actually lovely.

After that long day, Friday was much easier, involving an enormous lie-in and a relaxed time in Regent's Park with a newspaper before finding Marie-Anne and her friends to celebrate her birthday. That, too, was good, and included a chance to catch up with some of her friends whom I only ever seem to see at her gatherings... I then trundled down to Strawberry Hill to stay at the house of Jo, Sooz and Aoifeu, though only Sooz was there. I sat up chatting for a while, despite having an early wake-up ahead of me: Row was coming to pick me up at 7.30am...

This she did, and we set off for Longleat (with John and a couple of Row's friends too) to go to the Red Bull Air Race... What fun! Our intention in getting up early was to get there in time for various events before the actual Air Race, but we entirely missed them due to abysmal traffic. It took us six hours to get there, though at least we were in time for the race itself. Indeed, we soon discovered we hadn't missed any of the air displays, which hadn't happened due to the weather conditions, and the race itself was postponed by a couple of hours. That was fortunate, as it gave us plenty of time to get across the site - it took about half an hour to walk 100 yards, due to there being one narrow bridge and tens of thousands of people. Anyway, we got something to eat, and set about entertaining ourselves. It was a bit rainy, a bit cold, and pretty windy, so I did what any self-respecting Englishman would do, and bought an ice-cream.

Time passed, and Steve Rider (for it was he) tried to keep the crowd excited with the occasional amusing interview with Lord Bath, and with the pilots. Cometh 4pm, however, cometh an announcement that, as the winds had got up again, it was looking as though there might not be any racing after all. Hearing that a final official decision would be made in fifteen minutes, we rushed back to the car in the hope of missing the rush (the weather looked extremely unlikely to improve in those 15 minutes). However, we happened to be in the middle of the site, so getting out of the car park took about an hour and a half. Oops!

Remarkably, in spite of traffic jams, our failure to get there in time for the paper aeroplane competition, the cancellation of the air race, and our trek to just get out of the car park, we all decided we'd actually not had THAT bad a day. I blame the banter.

So then, being in the West Country anyway, I thought (prompted by Sooz's suggestion) I might pop up to Bath to see Jo and go around the Great Western Maze. Originally there was going to be a Night Maze on Saturday night, with hog roast, music, maze etc, but they couldn't get a licence for that night (it's now on 16th September if anyone's interested), so I joined Sooz in staying at Jo's, going out on Saturday night, and, most excitingly perhaps, doing the maze on Sunday! We took an hour and three quarters, and then wandered into Bath to kill time before Jo and friends finished work. This picture's of us at the Royal Crescent. I forgot to take any at the maze.

On Sunday we were joined by Dom, too, so we went out again, and then went back and played cards until the early hours of the morning. As you do. All in all it was a delightful couple of days in the Bath. I then returned home, and slept for a million hours on Monday night.

Isn't it wonderful that I'm able to do these things? I didn't really recognise quite how good it was until it had all finished and I was back home, but to be rushing all over the country, seeing friends and having fun, is just brilliant considering all the time I've been in hospital, not to mention my little ICU trip just a few months ago. I've also been pleased at my managing to keep myself motivated to do all this, as regularly I've thought, "oh, maybe I'll just go home and not bother with all this rushing around". I do still need lots of sleep, and do get tired and lethargic, but while I have the energy, the immune system and the invitations, I'm determined to make the most of my social life! I do appreciate it even more after so many months without one... Or even, with one confined to a hospital room.

Before getting too carried away, though, do I have to remember that I'm far from being in the clear. My blood counts are certain to drop during this phase and the next of chemo, so I'll not only have to be careful, but also be back in hospital for a time. And unfortunately having got through one trip to ICU does not preclude the possibility of picking up another infection when counts are down. My friend Jess is still in a semi-awake state, and though she's started to make some small improvements, there's a long way to go. Please continue to pray for her. As I look and feel much better than usual, it's sometimes easy to forget I'm still undergoing treatment for leukaemia, and though that's quite nice in some ways, I think it's important to remember.

So what do you do?

2006-08-29T21:47:00.000+01:00

As you've probably spotted, my social life of late has been a bit more exciting than it was for the previous nine months or so... This has been wonderful, as I've tried to make the most of having decent blood counts for a change. It is very hard to be stuck in hospital, or sitting at home while neutropaenic, knowing that all my friends are meeting up, having fun, making more friends and living life to the full, but I suppose it makes it even more special when I can do so.

It has brought up an interesting issue, though... At a couple of parties I've been to, there have been more people I didn't know than I did know. Both times, I didn't really want to make an issue of being ill, and told myself I'd not mention it unless it directly came up. This was firstly because I don't want to be defined by my leukaemia, and secondly because I fear that some people may not be sure how to respond.

However, there was a big flaw in that plan. Naturally, when you meet someone, one of the first questions is going to be along the lines of 'what do you do?' or 'what have you been up to?' Of course, I could lie and claim to have been hunting crocodiles, or reviewing books, or something similar, but nor do I want to hide the fact that I'm ill... So I usually go, 'erm, well, I've been quite ill so I've mostly been in hospital.' I guess that's the right answer, and leaves people with the opportunity to ask more if they want, or move swiftly on if they prefer. I often try to slip a joke in, to keep the mood light, by saying things like, 'I've been having cranial radiotherapy... hence the stylish baldness'.

Different people do react in different ways, and in some ways having leukaemia is a good conversation piece. It's not ideal, though. And in some ways I suppose I love the sympathy hehe... I'm not really quite sure what this post is driving at, as overall I haven't really come to any conclusion: I don't want to be defined by my leukaemia, but I don't want to hide it either. And most people are good, really: I don't think I am defined by it when I tell people... At least I hope not.

Bring it on

2006-08-24T20:28:00.000+01:00

I'm not a man to go around consolidating just once. Oh, no. Twice? Not me. Consolidation 3, here we go... Actually, I started this morning, having had good blood results again on Tuesday (I discovered that actually the normal level for haemoglobin is 13-17, and I'm about 11.6, but I was right that the other main tests were within normal levels) and told I could start as soon as I wanted, really. Not wanting to hang around and end up finishing my treatment in 2050, I suggested as soon as possible would do me nicely, and got an appointment for this morning.

In brief, this is what happens:

Days 1, 8, 15, 22: Intravenous Daunorubicin (most famous for turning your wee red, which I forgot for a brief moment when visiting the little boys room just after being given it...)
Day 29: Intravenous Cyclophosphamide (which, according to Wikipedia, is a nitrogen mustard alkylating agent)
Days 29-42: Oral Tioguanine (tablet-tastic)
Days 31-34; 38-41: Intravenous Cytarabine (as an inpatient)

For the first 29 days I should be an outpatient, though if my blood counts drop quickly, I suppose I might go in sooner. For those who like pretty pictures, here's my protocol (click on it for larger version):
It all makes sense, honest (though my CNS therapy came after Consolidation 2, remember?). In fact, if anyone wants all the technical details, the UKALL XII trial I am on has its details online.

This does all mean that the social life I've been enjoying for the past few weeks may soon have to take a back seat, at least when my neutrophils start dropping. My most recent enjoyment of the pleasure of having good blood counts was going to Adam's birthday party on Tuesday, which was lots of fun. Rather than posting any photos from then, however, I've uploaded a nice pic of me, Rachael and Adam from last week, when we visited his playground. I mean office.

Here are some interesting facts for all you infophiles:

I've put on some weight, so I'm now about 70kg. When in hospital, my weight has usually fluctuated between about 60 and 65kg.
My eyebrows are not looking quite so populated as they used to (in spite of the above photo).
Pompey are still riding high in the Premiership, though a stinking Man City player tried to murder our best player last night.
Seemingly around 95% of the people I know have gone or are going to Greece this summer (does it still count as summer in spite of the torrential rain last night and this morning?).
Erm...
That's it.

I intend to write with more profundity soon about various issues, such as the social niceties of being a leukaemia patient, the potential isolation of being ill, and maybe even God, as I have long promised.

On to the past

2006-08-21T21:23:00.000+01:00

Well, I've given you all plenty of time to read about last Thursday, so now I'll tell you about Wednesday and Tuesday, as promised.

On Wednesday evening I went to Adam's, where I found not just Adam but also Rachael. We enjoyed a lovely meal courtesy of Adam's mother, and after lots of OMV chat (well, what would you expect?) we went to see where Adam "works". I put that in quotation marks, as I can't really see how any work gets done there... It's more of a playground than an office, with comfy chairs everywhere, a ping-pong table in one of the meeting rooms, a slide to get from one floor to another, and a bar and balcony on the top floor. Pah.

The rest of the day had, as you might expect, been spent mostly in hospital. Having turned up in good time to get my blood tests done before my intrathecal, I didn't actually get my blood taken for a couple of hours or so... Fortunately I employed the time well, helping one of the nurses by typing something up for her on the computer, though this was almost entirely wasted when it transpired that the account under which she'd saved it doesn't exist. Oh well! At least I'd printed it, so there was a copy that just needed to be typed up, and I guess it made a change from sitting in Peabody's drinking coffee.

Tuesday night was lovely, too, as I met up with Rob, whom I hadn't seen for a while, and caught up with his news over a beer or three. And, to remind us what a small world it is, we bumped into a couple of other people from Jesus, who were out celebrating someone's birthday (I think). Rob and I lived together (in a flat) or next-door-to-each-other (in rooms) for all but one term of our years spent in Oxford, so I do miss not having him around. His band has almost the least-developed website in the world, but I've put it in my links (along with the bands of my two cousins on my father's side) over on the right anyway.

Earlier in the day, before dropping in to Literary Review to find they'd all bunked off early, I'd met up for lunch with a group of people who have or have had leukaemia, or are caring or have cared for someone with leukaemia. It was great to meet them all, and they were even lovelier in person than they are on the messageboard on which we all met. It is good to be able to talk to people who have been through the same things, and understand what it's like, and all in all we had a very enjoyable meal.

The danger with having a group of friends like that, of course, is that there's always going to be a good chance that someone in the group will have bad news. Unfortunately this is the case at the moment, as Jess, who had originally invited me to have a look at the messageboard, is in Intensive Care with an infection that has spread from her lungs to her brain. Please include her in your prayers, as she needs all the support she can get as she fights this thing. She's almost my age, has ALL like me, is following the same treatment (long-term chemo) and is at almost exactly the same stage as me: she's a real fighter but the infection caught her with her neutrophils down. I think I'm particularly shaken by it because we've almost been running in parallel, and while I got through my infection and can look back on it, she's still in the thick of it not knowing what will happen. It's also, of course, a big reminder that I'm far from being in the clear: there but for the grace of God and all that. She had hoped, before getting this infection, to be there on Tuesday, so her presence was seriously missed, and there was a lot of talk about her and good vibes sent in her direction. Please please remember to pray for her.

Chillin' at my homie

2006-08-18T20:02:00.000+01:00

Five days and no blogging... I am sorry. I blame radiotherapy-induced lethargy (for the first day or two) and decent-blood-count-induced busyness (for the rest). I have been in the Big City, London! Having lovely blood counts (all within normal levels, I think... neutrophils: 2.6; WBC: 4.5; platelets: 230; haemoglobin: 11.6; I think) means I can be out and about a bit more than usual, so I've been making the most of the fact by catching up with a few people and celebrating the occasional birthday. I am now, however, back home. There's plenty to share, but I think I'll start from yesterday and go backwards.

Yesterday was the birthday of my dear friend Sheila, finally bringing an end to months of 'it's nearly my birthday' chat from her. I was touched to be invited to dinner to celebrate, and had a lovely evening with her, her boyfriend Dave, her friend Emma, her brothers Arvind and Armand, and Arvind's girlfriend Kate. We went to a proper Neapolitan restaurant in the Notting Hill area (I think), where I ate some delicious pasta with king prawns, after sharing a great platter of meats and cheeses. The wine was good, too, and I think I was quite tiddly by the end. Which was nice.

I thought I'd start with last night, as I wanted to link to the most inventive mention I've ever had on anyone else's blog... There's little I can add to Armand's perspective on the evening, except to express the same bafflement that might cross your mind as to why he considered the nickname Wu-Tang to be a suitable one for me. He claims he has recently been known variously as Clark Kent, Elvis and The Arminator, so I guess he's an expert on the nickname front; he also complains about not getting enough comments, so if you're feeling sociable then do leave one somewhere on his blog.

I also popped in to see my old friends at Literary Review, where nothing much has changed: demoralisingly, the magazine has survived my absence without any problem at all. It was good to catch up, though, and to see them all well. It was the first time I've been in since last October, so I was even lumbered with a whole load of stuff I'd left behind... Oops!

Before that I'd gone for lunch with Adam and Row, who joined me in eating enormous pancakes.

Wednesday can wait until my next post, methinks.

Auguri!

2006-08-13T18:59:00.000+01:00

Happy birthday to you,
Happy birthday to you,
Happy birthday Papa Norton!
Happy birthday to you.

Second time lucky

2006-08-11T22:46:00.000+01:00

Now I really HAVE finished the radiotherapy, which is good, as that's another phase to almost cross off (it doesn't really finish until Wednesday, with my last intrathecal chemo of this phase), though it was actually a bit sad in one way: I'd started to get to know some of the radiographers a bit. But all in all it's obviously a relief not to have my brain fried anymore, and to have got through the phase with no discomfort. I am tiring very easily (and therefore ought to be in bed), and that will probably continue for a good while, but as long as I rest when I feel I need to, I should be alright.

My hair's definitely started to fall out again, so I'll probably shave it all off again soon. Unfortunately it's not quite at the Eezee-Bald stage it was last time, when a simple grasp of the hair would take out a huge clump with no resistance, but it's definitely on its way, as a hand through the hair has regularly reminded me this evening. It's only short anyway, and it's a bit of a shame, as I do quite like it as this ultra-short baby-soft stage, but hopefully it'll be back soon enough.

The hair lacking on the top of my head had started to congregate on my chin and upper lip, due to a great display of forgetfulness on my part... In Epsom, I believed I'd left it at home, but got home last weekend and couldn't find it where I thought it was, so got it into my head I'd actually left it in Epsom, in a place I hadn't been looking. Yet, back in Epsom, there was no sign of it, and a quick call home revealed that it was at home after all, erm, in its case. D'oh! Fortunately I can blame the radiotherapy (though I prefer to think of the radiotherapy as getting rid of the bad cells, increasing efficiency, a bit like defragging a computer)... The result was some very silly facial hair, which is the only kind of facial hair I can grow, being not at all a hairy man.

Now I'm home, and I expect I'll just be resting, before heading back up to London on Tuesday for a few days. I've come to the conclusion that sitting around at home, though useful when I need lots of rest, isn't necessarily the best plan when I'm between treatments. With blood counts as healthy as they are at the minute, I'm able to be more adventurous, and I feel so much better when I do. Home comforts are all well and good, but with my dad away at work a lot of the time, almost none of my friends living anywhere nearby, and even Fred not spending all that much time here, it can get a bit dull... It's so important, I think, to make the most of the times I can be more active and sociable, as without that it's very easy to get lethargic and down: seeing people this last week cheered me up immeasurably and was well worth the price of feeling a bit more tired yesterday and today.

Anyway, next week should be fun, with lunch on Tuesday with a whole load of other leukaemia sufferers and carers at various stages through treatment, and then a birthday dinner on Thursday. I'm hoping to catch up with a couple of others, too; the only less fun bit will be the IT chemo on Wednesday. I really do look forward to getting back to living in London as soon as I can, and am starting to work out what will be best in terms of earning some money... But I'll mention more about that some other time.

And so it goes on

2006-08-07T23:18:00.000+01:00

Tomorrow's my last day of cranial radiotherapy!

Oh, no it isn't... Apparently I'm having 15 doses after all, not 12, so I'm still going until Friday.

Hmph.

I r teh winner

2006-08-03T16:32:00.000+01:00

This entertaining interlude of cranial radiotherapy has whizzed by so far, meaning that I have just three sessions remaining. Wow! Pow! I also have a couple of intrathecal (IT) chemotherapy doses to complete this phase, which will be on Wednesday and Wednesday.

Yesterday, too, was Wednesday, and consequently saw me return to St George's, this time avoiding any reliance on hospital transport by being driven by my generous hostess. As my radiotherapy was at 10am, it was easiest to get me over to Tooting by 11am, in spite of my IT appointment officially not being until 1pm. So I knew I'd have a good couple of hours to wait, but the doctors last week had declared themselves very eager to get it done at 1pm this time. However, 1pm came and went, and rapidly disappeared farther into the past: I eventually had the procedure at 4:15pm. Post-IT, I had a nice lie-down for four hours (to avoid a lumbar puncture headache), so I left at about 8:30pm, a mere nine and a half hours after arriving. Compared to spending 6 weeks in hospital, though, that was nothing.

And in fact the day was brightened considerably in a couple of ways. During my little Intensive Care adventure, Harriet and Freddie passed the time drawing and colouring in flags for a competition on the Ruth Myles Unit (you may remember that the famous Brazil flag went missing, much to our consternation). They wrote my name on the back of all of them, and lo, behold, I won! I'd love to put it down to the supreme colouring-in skills of my siblings, but I think it had more to do with being picked out of a hat... Anyway, we won an MP3 player, which was a very pleasant surprise! Freddie and I are both blessed with iPods, so I think Harriet's going to get it.

It was also lovely to bump into a couple of patients from the RMU whom I had managed to get to know to some extent during their stays as inpatients. They're both doing really well, and it was great to catch up and see them on such good form. One is almost my age and had the same illness, though he had a different course of treatment; it's always encouraging to see people doing well!

Today I had a couple of potential social engagements, but am feeling pretty tired, so have reluctantly decided not to go. It's probably for the best, but it's always frustrating to think that I'm missing out, particularly when I don't even feel very unwell. It's very easy to feel that it's a huge sacrifice, so I have to keep reminding myself that there'll be other parties, dinners and opportunities to do everything I miss out on at the moment. Also, of course, it makes it really special when I do manage to get to an event, such as the OMV get-together last Sunday.

I'll probably be home tomorrow afternoon, after my radiotherapy, and will then be back up for the final two sessions on Monday and Tuesday. Then I might stay with someone in London (though I'm yet to organise anything) on Tuesday night ready to go to George's for IT on Wednesday.

Dances with flip-flops

2006-08-01T19:40:00.000+01:00

On Sunday I went to London to see the OMV pilgrims newly returned from Lourdes, and it was wonderful to catch up with so many of them. Having missed the pilgrimage because of my treatment, they seemed to do their best to make up for it: I was overcome with love. It seems that 'out of sight' was not 'out of mind', as I was deeply touched all through the afternoon and evening by my welcome and by how much people cared. There's always a lot of love in the OMV anyway, and as I've mentioned before, I've felt very loved since being ill: the massed ranks of the OMV made me feel more loved than ever before. I was humbled by everyone's concern, support, thoughtfulness and kindness. Blimey.

I didn't especially want to turn up on my own, particularly not having been to Lourdes (officially it's the traditional end-of-pilgrimage farewell, so I was gatecrashing to some extent), so I met Rachael and Zoe at Victoria, before heading to the Scarsdale (a pub off High Street Kensington). Upon my arrival it took a good half an hour to get to the bar: everybody seemed pleased to see me! Adam had had his head shaved at the final-night party to raise money, but his hair still wasn't quite as short as mine, and mine's much fluffier. So there! At one point during the afternoon/evening, champagne was dished out to the wonderful people who had organised the pilgrimage, or parts thereof, and in a lovely gesture Adam announced that everyone had missed me, and all signed a card, which he presented to me. Little old me! Actually, by OMV standards, I am getting quite old... and I've always been little.

Lots of us then went on to an Italian restaurant in Fulham (as has now become traditional), at which I felt even more loved! I blame the freely-flowing wine: it always makes people more emotional... But anyway, before saying grace, Dom Raphael exclaimed to the 70-odd OMV members crammed into the basement that it was so lovely to have me there: I could only blush in reply. Later on I was dragged up to sing, and having croaked my way through a duet with the prodigiously talented Charlotte, was persuaded to haul out my almost famous 'Sheep' song (which first appeared to the OMV about 6 years ago). It has been said that I like to be the centre of attention now and then, and I must admit that I do like performing, especially when you get the sort of reaction I did then... It was very touching.

After supper, the tables were moved and some dodgy scratched CDs provided some music to dance the rest of the night away: fortunately I was feeling on good form health-wise, and was only hindered in my dancing by my flip-flops... Hehe. I stayed with some of my wonderful friends in Strawberry Hill, and remarkably even managed to get out of the house by 7:30am and to the Marsden on time for my appointment (which was fine, as was today's).

All in all, it was a brilliant day, and I'm so so pleased I managed to make it. So many lovely people, so many stories to catch up on, and such fun. I must get to Lourdes next year... Hopefully this post has given you some idea of just how touched and uplifted I felt by everyone; the credit goes to all my OMV friends - thank you!

Not all cyclists need testosterone patches

2006-07-29T13:08:00.000+01:00

Well, it's the weekend, and I've drifted home. All in all, the past week was ok in terms of side effects and feeling rough. Admittedly once or twice I felt a bit grotty, but it wasn't too bad and soon passed. Apparently the effects are cumulative, though, so it's quite likely I'll feel a bit worse as the doses continue.

It's nice to be home and to relax; at the moment it's just me and my dad, but I think Fred's coming back this evening. I won't see too much of him, though, as I'm planning to head along to the traditional OMV end-of-pilgrimage farewell at a pub in London tomorrow, so will be leaving at about lunchtime. Apart from the joy of seeing lots of friends and hearing all about how it went this year, it'll be lovely that I probably won't look any more ill and tired than they do!

Talking about tired, now is an opportune moment to remind you that the Old Gregorian team of Will Edwards, Henry Trowbridge and James and Ollie Lombard are cycling the Camino de Santiago de Compostela very soon indeed. Now they'll probably be tired, too, by the end, particularly as the weather forecast is "hot" and "damn hot". If you haven't sponsored them yet, please consider doing so at their fundraising site, and if you're not sure why you should, the first post of their blog explains in very good detail, as well as being very complimentary to me! Therefore, of course, I highly recommend you read it, and follow it avidly as they roll their sweaty way across the north of Spain.

In short
Give them money: here!
Follow their progress: here!

I think it's also probably time I told you all what that disgusting-looking concoction I posted the other day was meant to be. According to the menu, it was... chicken soup! A couple of people got it or were close enough, but I'm afraid I'm short of prizes to dish out. What actually went into it is beyond even my realm of knowledge, but I'm sure some others among you may have been pretty close...

A little girl who doesn't wash her face

2006-07-27T00:17:00.000+01:00

These were the stages of my day:

Get to Sutton
Have cranial radiotherapy
Get to Tooting
Have intrathecal chemotherapy
Return to Epsom

Success was variable.
1. No problem at all: a lovely neighbour took me in and got me there early.
2. Smooth as a baby's bottom: Absolutely fine, and the radiographer was gorgeous.
3. Oh. To cut a very long story short, I waited 3 hours for transport to come from St George's, and ended up getting a taxi instead.
4. Easy-peasy lemon-squeezy: very little pain and the supervised registrar took one step closer to being on the register at St George's (and thus able to do it unsupervised).
5. Oh. No transport seemed to be turning up, so the wonderful Gobby checked what was happening, discovered that as it was pretty late by now (see point 3), another hospital was now looking after St George's transport. And they had no record of me. Once again, a taxi to the rescue!

So there we have it...
Medically complicated, technologically advanced treatment: fine, easy.
Simple logistics of getting from A to B: quasi-impossible.

Hmph!

There was also a bit of a mix-up with drugs, basically because the Day Care staff were there before my intrathecal chemotherapy (and ordered the drugs), but had gone home by the time it finished (and so nobody still there knew where they'd got to), and I think we ended up having to reorder from the Pharmacy.

Repeat after me:

Patience is a Virtue;

Virtue is a Grace;

Grace is a little girl

who doesn't wash her face.

Fortunately, if there's one thing I've learnt since being ill, it's patience. And I've always been a patient man anyway. Even before being a patient. Perhaps that's why we're called patients... Patients... Patience...

This might be what hospital transport looks like, though I can't be sure. I know what taxis look like, though.

Zap! Pow!

2006-07-24T22:11:00.000+01:00

This post comes to you from leafy Epsom, where I am staying with some lovely family friends. In fact, my hostess was at school with my mother! It's very peaceful, and I have a very comfy bed, and am being exceedingly well fed, so all is great. I am staying here while I undergo treatment at the Royal Marsden in Sutton, as this phase involves me going into hospital every weekday for two and a half weeks, so it just wouldn't be possible to whizz up and down from home every day.

My cranial radiotherapy has begun:

Having had my mask fitted quite some time ago, I was worried that it wouldn't be the right shape for my slightly thinner face, but it seemed to be fine as it pinned my head in place. My eyes were shut by the mask, so I didn't see what happened then, but the bed whirred around a bit, and then I could sense a blue-ish light moving over my head (the irradiation) and smelt ozone. The actual zapping only took a few seconds, though today the whole appointment took a bit longer because it was the first dose.

My hostess also works at Sutton on Mondays, so she helped whisk me through to the right places, and has done a wonderful job in enlisting her friends to get me to and from the hospital each day. I also met the senior nurse who is in overall charge of me (I think) during my treatment, and he explained that hopefully side effects shouldn't be too bad.

I was, however, pretty sleepy when I got back, so after lunch I had a good snooze. I've also had a slight headache, which could be because of the radiotherapy, but could well also be because I hadn't slept as much as I'd have wanted; was still tired from the last chemo; was suffering in the heat; etc. Anyway, I'm going to tackle the Telegraph Prize Crossword to see whether my brain still works.

The course is of 12 doses, so two weeks and then Monday and Tuesday, and I'll be here for those weekdays. At the weekends I'll probably head home, though we're yet to work out the best way to get there and back. On the two Wednesdays I'll also be popping into St George's for some intrathecal chemo to back up the radiotherapy, but hopefully that won't be too bad (ie the doctor will find the right spot the first time...).

Incidentally, the OMV is now in Lourdes, but I don't want to talk about it because I'm very sad that I'm not...

Crash!

2006-07-22T12:25:00.000+01:00

Sorry to anybody who came on here yesterday or today and found just a page of source code... I've no idea what happened, but am certain it was nothing I did. Unfortunately the template became mostly deleted, so I've spent the past half an hour putting it back together... I haven't bothered with the mini-lnks I had up there in the header, but otherwise it should be exactly as it was.

This time I'm saving the template elsewhere, in case of further error!

Hurrah for a social life

2006-07-19T19:35:00.000+01:00

What lovely weather! I'm so glad to have made it out for some of the summer, particularly as I was worried at one point that I was going to be an inpatient, stuck within the hospital four walls for the entire sunny season. Thus I cannot really complain about it being TOO hot, though I have to be careful in the sun. Well, everybody has to be careful in the sun, but I think I should be even more careful, particularly with my unprotected head. It's all about the bandanna.

On Sunday I was back in London, and went along to Alison's barbecue, nominally to celebrate her and her housemates' new garden, which for the record was very pretty. I didn't know anybody apart from Ali before I turned up, but was so glad I could make it, not just because it's always delightful to see my ex-wife but also because, erm, I don't get out much these days. It was a lovely afternoon/evening and Ali's friends were lovely, even though some were civil servants.

It was then great to get to Clive's and Dom's (they'd very kindly agreed to put me up) and find not just those two, but also Cosmo, and Tori, and a couple of people I didn't know. So hurrah for socialising! In case that wasn't enough, I met up with all sorts of lovely friends on Monday evening, who generously didn't let me pay for my pizza... So thank you all, and it was brilliant to see you. I should have taken some photos, but forgot.

The routine blood tests on Monday at St George's were fine, and though I ended up having to wait quite a while, I was quite happy to to do my waiting outside (in the shade!) with a good book (currently 'The Virgin Suicides' by Jeffrey Eugenides) and an ice-lolly (I think it was a Calippo). I haven't the dates of my intrathecal chemotherapy yet (I need it a couple of times during my cranial radiotherapy), but should find out tomorrow at the latest.

The next plan is to go to Epsom, where I shall be staying during my outpatient course of radiotherapy at the Royal Marsden, Sutton. I'm yet to know how much it'll knock me out, but if I'm lucky and don't have too bad side effects I'll hopefully be able to pop into London and see people during that time. Getting to the Scarsdale for the traditional helpers' end of Lourdes farewell would be particularly good, so I can at least see the people who are going this year...

In case anyone's ever doubted my dislike of hospital food, here's an informative picture. Any guesses as to what it is...?

Sunday and Monday evenings!

2006-07-15T18:25:00.000+01:00

I'm at the Home! I mean, I'm home! Which isn't the same thing. They let me out yesterday, which fills me with joy. After a few jokes about needing a delivery van to take my stuff, and a liberal sprinkling of Heroes around the staff, Sue appeared, followed shortly (but unrelatedly) by my drugs, and we tootled back to sunny Southbourne. One way in which you (yes you, dear reader!) will benefit is that you will be able to see photos as I can post properly, not just from a mobile phone. Don't get me started on internet in hospitals. Anyway, here's a picture of my Scalextric, before I had to take it down. Cool.

So, the plan. My cranial radiotherapy has been postponed by a week, so won't be starting until Monday 24th July (when many of my friends will be in Lourdes - boohoo!), so I'll be staying in Epsom for about two and a half weeks from then. London will be very close, and hopefully the side effects won't be too nasty and I will be able to see a few people in a non-hospital environment...

First, however, I'm going to a barbecue in London E1 tomorrow afternoon, prior to an appointment in the Day Unit at St George's to check my blood on Monday. I thought that, as I'm feeling healthy at the moment and am not neutropaenic, it would be a great chance to catch up with anybody who is around, particularly before lots of you disappear with the OMV. I haven't sorted out anywhere to stay, so if anybody can offer a bed on Sunday (tomorrow) night or Monday night, I'd be very grateful. I've no idea when the BBQ will wind up, so it might be that I'm able to meet up with people tomorrow evening, but I'll definitely be hoping to see people on Monday evening. Perhaps I'll choose a pub, sit in it and hope that somebody turns up. Can anybody suggest a suitable pub? I just don't know London well enough yet... Anyway, the important thing is that I'd love to make the most of my time fuori ospedale to see people, as I don't get out much these days. So if you're free on Monday evening, or Sunday evening, then keep checking here for more details of where I'll be, or text me. And if anybody wants to put me up for either night, I promise not to snore. Please let me know!

And here is a picture of an egg.

Sonnet I

2006-07-13T20:16:00.000+01:00

I know it's been a while since my last post,
On which you've all suggested great ideas
To pass the time when ill (it feels like years);
I've pondered which suggestion I like most.
So thank you all: there's much I may well try,
From learning something new to writing stuff -
The latter, though, is likely to be tough
(I'm writing this in iambs, by the by).

In other news, there's little to report
Except my neutrophils, which have arrived!
The count is 0.6: enough indeed
To see me home anon - a lovely thought.
Since Monday, when they reappeared, they've thrived:
Perhaps I'll get the time out that I need.

Who interviews the interviewers?

2006-07-07T13:11:00.000+01:00

Q. So, still in the hermitage?
A. Indeed.
Q. How long has it been?
A. Forever, approximately.
Q. When will you be allowed out?
A. With a bit of luck, some time in the next decade.
Q. Do I detect a little impatience?
A. I prefer 'frustration'.
Q. Any new accessories to help pass the time?
A. Oh yes. Scalextric! Everybody's favourite trigger-controlled racing toy. A joy and a delight. It is truly wonderful.
Q. Having such little space, where do you put it?
A. The track leads under the armchair, past the scales, under the end of the bed, past the bathroom door, under the head of the bed and narrowly skirts the bedside table. Think Micro Machines...
Q. Is it a danger to people entering the hermitage?
A. Certainly not, as nobody ever comes in in the dark, and some of the track is currently removed to make it even harder to pretend it is in the way.
Q. Does it not prevent the cleaners from giving the floor a good wipe?
A. Apparently so. This is difficult to argue against. Unfortunately it ought to be packed up at the end of each day.
Q. Is that a problem?
A. Well, it takes a while to put it together or take it apart, particularly as the course weaves around the furniture. I guess I'll have to try, though...
Q. How else are you filling your hours?
A. By watching season 3 of '24' with Harriet, and by reading my book ('The Accidental' by Ali Smith, though I've just finished that).
Q. So life is full?
A. In a sense, yes, as I have plenty to do. I cannot complain of boredom, as I have more books, films and toys than I could ever tire of. And there are so many other ways to fill my time: by writing letters, for example.
Q. But...?
A. It's all a little shapeless. I have many ways to kill time (though of course reading, writing etc are certainly not a waste of time), but at the moment that's all I seem able to do. It feels very unproductive. It doesn't lead anywhere. When I finish a book, I start another. But nothing has really been achieved. And that's frustrating.
Q. But presumably it's only like that until you go home?
A. As much as I'm looking forward to going home, it is still likely to be the same story, as I will not be there for long enough to get my teeth into anything.
Q. What sort of thing do you mean?
A. I really want to take up my position as Secretary of the OMV again, for example. In that position, I would have lots to focus on, to work towards and to achieve.
Q. So why don't you do it?
A. A major part of the role is communication, which is also vital to enable the other parts of the job to be done. Without the internet, I am powerless to communicate in the ways necessary.
Q. What about when you're at home?
A. Then I have the internet, but I would need to have regular online access, to send emails to volunteers when needed, for example. Not being able to do so for several weeks when in hospital makes the job of Secretary currently impossible.
Q. So you wish you had some sort of project?
A. I suppose so. Something to give my days a focus. At the moment the only thing I'm working towards is the end of treatment, which is not only a fair way off, but is also passive.
Q. Passive?
A. I don't do anything in my treatment. I get given drugs in a variety of ways, but there's nothing I can actively do (except make sure I drink enough) to help.Q. Have you had any other ideas for what you could do?
A. The problem with finding some kind of useful project is that most ideas I've had are impossible for someone unable to leave their room and/or lacking an internet connection.
Q. But isn't it all about making sure you're happy each individual day?
A. Yes, I still believe that. But that doesn't exclude the possibility of taking other days into consideration. Having something to do with purpose makes each day better, and that purpose will often be in the future. It also helps to have something to look forward to.
Q. Like your birthday?
A. Indeed. But now that's passed, there's nothing of similar excitement in the near-ish future. There are a few little exciting things, such as seeing certain people, and getting home to a bacon sandwich, but the calendar currently looks like a long phase of treatment punctuated by occasional brief periods out.
Q. Is there anything to do about that?
A. Unfortunately I don't think so. Because of low blood counts, the importance of getting on with treatment and the unpredictability of when it will occur, it's nigh-on impossible to organise anything at all.
Q. So how will you shake off this frustration?
A. The best way would be if the hospital would allow the internet on the ward, and I could do things like the OMV Secretaryship.
Q. Any chance?
A. We're working on it.
Q. And if not?
A. I'll have to stop being silly, remember how good it is just to be alive, get back to appreciating small pleasures, learn a bit more patience and be grateful for everyone's generosity and support.
Q. Isn't that what you've been trying to do all along?
A. Yes. I guess that in the past I've often not felt up to much more than lying in bed, whereas this time particularly I've felt physically and mentally fine and alert, so not being able to do anything worthwhile has been frustrating. Especially as since my ITU trip I've been keen to make the most of every day.
Q. Any other problems?
A. My self-motivation's not great. Maybe that's why the OMV thing is a good idea - I'm motivated by many others.
Q. Why are you talking to yourself?
A. I've no idea. But I blame Ali Smith.

2006-07-04T18:24:00.000+01:00

This is after having moved the balloons into George's room. You can only actually see half of them in this photo..

Party-tastic

2006-07-03T21:02:00.000+01:00

Someone said to me the day before yesterday, "Sorry your birthday is going to be so uninteresting", in reference to me being stuck in hospital. But I pointed out that often the occasions that threaten to be the least interesting often end up being the best...

Yep, I had a WONDERFUL birthday! After a visit from the father figure and his lady friend on Saturday, with not one but two cakes, Sunday began quite slowly, but immediately became special when Gobby offered scrambled eggs and freshly squeezed orange juice for breakfast... Egg-tastic! I then had plenty of time to open my cards: thank you to all those who sent them. Card-tastic. The next excitement was the appearance of Tomandalice, en route to a wedding, and then my cousin Lucy and her parents. It was great to see them, and not only did Lucy complete her 10k run in the sweltering heat, but she even gave me a dartboard for my birthday. What larks! I fully intend to practise intensively so that I can build up a beer belly and compete professionally when I get out. Literary journalism? Literary shmournalism.

Competition arrived in the varying shapes of harriet and freddie, and we began a darts game wherein I was soundly thrashing them (historians always tell the truth ;-)). But then Gobby appeared with news that she had a cake for me, which was in another room because the candles would have set the fire alarm off in my room. Being the observant and intelligent Oxford graduate you know me to be, it didn't even cross my mind that there are smoke detectors in all the rooms... I'd even believed Gobby earlier when she'd said that they could video the candles being lit, as I was neutropaenic and confined to my room. When it came to it, I was allowed to head down the corridor to the Clean Room (usually used for things like putting lines in), where I expected to find just a cake.

So I was a little surprised to find assorted friends, staff and even another patient, in a room decorated with about 50 balloons, and tables laid out with sandwiches, crisps, nuts, drinks, sweets, party poppers and hooters. Talking of hooters, the cake then appeared, bra and all... Cake-tastic! A bottle of bubbly also materialised, and we tucked in. The balloons, I should add, had been decorated before I had got there. It was great! And the main person to thank is the brilliant Gobby. Hurrah for Gobby!

The balloons could not stay in the Not-so-Clean Room, so they came with me back to the hermitage... How best to describe it? An explosion of colour, perhaps, particularly as they periodically pop - about five have gone already and I'm still not used to it! I was lucky that none woke me up with a bang last night, but I fear I won't be so lucky tonight... Pop-tastic! I'll try to get Fred to put a picture up, to give you an idea of just how funky my room now is. Back in the hermitage, I had a lovely time with Harriet, Freddie and Jo until they had to go and I collapsed exhausted into bed. Collapsed exhausted in the best possible way, not in a help-call-the-doctors way.

So all was enormous fun. And the joy continued today when not only did I get some quality 24 merchandise from Holly, but an enormous box arrived with my name on it... Inside was a Harrods hamper with all sorts of bits and bobs inside! Now that really was hamper-tastic. I'm not usually in the habit of receiving Harrods hampers, so I don't know whether it's normal practice, but there was even a note from the packer, with a quotation, a book recommendation and a CD recommendation, as well as 'KEEP FIGHTING!!!' (I guess I'll put my plans to retire from boxing on hold) written thereon. It was such a generous gift, and thoughtful too, as the bits had clearly been chosen especially for me. There was even a cake, bringing my total cake count to four!

There's even something to look forward to in the medium term - Harriet's present is a trip to Rome with her to visit Fred when he's out there next academic year!

Rome-tastic!

Happy birthday to...

2006-07-02T00:05:00.000+01:00

...Jerry Hall, Peter Kay, Kenneth Clarke, Paul Dowbekin...

...et cetera ;-)

"I can't see the hour", as the Italians say

2006-06-29T18:38:00.000+01:00

I'm really looking forward to my birthday, even though I'll be in hospital for it. Obviously I'd prefer to be out, and able to celebrate in less confined circumstances, but it's not the end of the world. I'm never normally very fussed about my birthday, but being stuck in here I need things to look forward to! As much as I still believe the most important day to consider is today, when there isn't much going on and the days are so similar, it's great to know there's something to look forward to.

Not that I have any special plans; but I do know that I've got some great visitors coming. Gobby's on duty, too, and she's always entertaining... And speaking of lovely nurses, two student nurses I get on with well have been offered jobs by the Ruth Myles Unit for when they finish their degrees, so that's good news.

My egg-esque pate was starting to show a few confused and friendless little hairs sprouting here and there. So I decided they ought to be put out of their misery, and got my razor out. I did consider the fact that if I shave off any hairs that appear, my hair will never get a chance to grow back, but these were just silly, in their sparsity and their size... Also, I know the cranial radiotherapy will send me back to the ranks of baldies, so I figured I may as well just stay bald all the way through...

Turn around, bright eyes!

2006-06-28T00:30:00.000+01:00

I shall write a decent-length post soon, but to be honest there's not been much to say recently... I'm still in the hermitage, my neuts have finally started falling (1.4 on Monday, 1.1 on Tuesday) and I've been extremely grateful to the World Cup for providing company during the long afternoons and evenings! I've been lying in like a teenager, drawing a 'MISSING' poster for Freddie's and Harriet's best entry for a colouring-in competition on the ward: it was the Brazil flag and was the favourite to win until somebody half-inched it!

This evening my lovely father visited, which was great - and not just because he brought clean clothes (I'd only expected to be here for a week, if you remember) and food! I've some charming friends popping in over the next few days, which is great, so between them and Wimbledon I should be able to keep myself entertained. I expect I'll be neutropaenic very soon, so no more wandering down to Peabody's or to get a newspaper, but hopefully it won't be long before the count starts coming up again...

As I wait for my neutrophil count to drop...

2006-06-25T22:05:00.000+01:00

Friday - 1.4
Saturday - 1.7
Sunday - 1.8

Eh?!

Stuck in the hermitage

2006-06-23T18:33:00.000+01:00

Today I had the last doses of chemotherapy for this block (Consolidation 2), which is nice, as it leaves just TWO more Consolidation blocks and a bout of cranial radiotherapy between now and the far less intensive Maintenance therapy.

I had hoped this would leave me free to flee the hospital and my hermitage (room 1 is so isolated - I never see or hear anyone unless they're specifically coming to see me) and go home, but my consultant has decided it's best for me to stay in until I'm past my neutropaenic stage. Unfortunately this is not likely to be very soon, as I haven't even reached my neutropaenic stage yet... This morning's neutrophil count was "1.4ish" (the scientifically accurate figure given by Daisy, the SHO), down from 1.7 yesterday. The plus point is that I've been able to abandon my hermit-like existence today to wander the hospital, but I'd happily give that up for a shorter stay.

I had been hoping to make it to a picnic Robyn has organised on the day of my birthday (accidentally, as it happens, so my absence won't be fatal), and she had been quite happy about the idea of me inviting along whomever I wanted to celebrate (she also pointed out that, it being in a public park, anyone could have turned up whether she wanted them to or not, but I don't think that was quite the issue). I also wanted to cheer Lucy on if possible, and her comment suggests a trip to Blackberry Cottage to see even more cousins was being plotted. I'd also wondered about spending some time after this phase seeing people in London. By my reckoning, however, it's extremely unlikely my neutrophil count will have reached the trough and then recovered to a safe level by 2nd July. Had I been allowed home, at least my birthday could have been celebrated in slightly nicer surroundings than those provided by the hermitage, but I suppose it might be quite fun being here with a few nurses around, as well as any visitors far more likely to come and see me than if I were at home.

What's more, it does make sense to protect me when neutropaenic, as the last thing I want is another trip to Intensive Care. When that was necessary before, it was very sudden: I was very glad I was in hospital and not at home when I collapsed. The frustration, as usual, stems from the waiting, in this case for the chemo to take effect on my neutrophils and my body to then recover. Naturally we've no idea how long that will be, but now my radiotherapy has been postponed until 17th July, at least there's a bit more chance of an out-of-hospital break beforehand.

I think the delay would be a lot less annoying if I were in a different room, so hopefully I might be able to move when another becomes available. I didn't mind the hermitage-esque properties of room 1 when I was expecting to only be in it for about a week, but now the time is stretching indefinitely ahead of me, it's a different story... Particularly as I won't even have the social interaction of a nurse coming in about 5 times in the middle of the day to plug in the different chemotherapy drugs and flushes. It really does seem so isolated: I see nobody unless they come to my room (usually for observations or to find out what I want to turn down from the hospital menu), or I go for a wander. Of course, as soon as I'm neutropaenic the latter will no longer be an option. The bonus of being in a hermitage, I must admit, is that it is terribly quiet, so sleeping is easy. And I like sleeping. But I like people too.

Great events on 2nd July, number 1

2006-06-22T13:45:00.000+01:00

Lucy Rapp is a great many things. She is, for example, my cousin. She's also delightful and enormous fun. She's somewhat Northern, and all round a gorgeous and wonderful person.

However, she assures me she is NOT a natural runner... So it is even more of a challenge for her to be running 10km in London on 2nd July than it would be anyway. What's more, she's doing it for Leukaemia Care, the main support charity for people with leukaemia and their families, which is wonderful.

This is where you come in... Get your virtual wallets out, head to www.justgiving.com/lucy10krun and support her, thus helping me and so many other leukaemia sufferers. She's even doing it on 2nd July... Please be generous!

A lovely little quotation to end (in fact, Lucy sent it to me):

'It's easy enough to smile
when the world rolls along like a song.
But a man's worthwhile
if he can smile
when everything goes wrong.'

Hatching time

2006-06-19T22:45:00.000+01:00

Well, the main news is probably that finally, after several false starts, Consolidation 2 has now kicked off! It's a relief to have started, and now I can look forward to it finishing (hopefully in four days' time, though as ever anything might happen between now and then...). I was given the chemo (cytarabine and etoposide) this evening, after I'd been topped up with a couple of bags of blood.

Which reminds me: I may have gone on a fair bit about how people should get on the bone marrow register, but also of massive import is donating blood... I've needed it plenty of times, and it can SAVE LIVES HURRAH! So do give blood, I urge you.

But enough preaching - back to the news of my past few days, in reverse it seems... This afternoon the BBC singers were touring the hospital to bring music and joy to patients' lives, and did a very good job of it. Crammed into my room, four of them sang Mozart's Ave Verum and a piece by Bob Chilcott (sp?), and they were excellent. I managed to hold myself back from joining in, but only just.

This morning I went to the Marsden in a minibus/ambulance, which struck me as slightly OTT, but never mind. I had my simulation appointment, which involved lying down and having the mask put on and attached to the 'bed' (its role is to keep my head still and in place, so the radiation hits the right places), so that the radiotherapy staff could draw marks on it showing where to zap. It was a bit odd, as I had to have my eyes closed and thus didn't know much about what was going on, but it was surprisingly comfortable, so it was all easy for me! A St George's doctor later told me that they ARE trying to get the actual radiotherapy postponed, but at least now I've had all the necessary planning and preparation.

It was lucky I'd remembered it was happening this morning and set my alarm - we've had the joy of the buzzers being broken, so the ward is much quieter, and nobody actually came to wake me up until the transport arrived. 'So there!' I say to all those who doubt my aptitude for getting up early.

As for the weekend - it was a wonderful opportunity to get out of hospital, wander London and meet up with friends, so that's exactly what I did. Sunday was mostly about the social side, and it was great to be able to see and talk to people somewhere a little more pleasant than a hospital room. Saturday involved lots of wandering, including through Soho, which brought back lovely memories of the summer.

It was also just a joy to be amongst people, and probably for that reason I kept picking up fragments of conversations, and seeing the way people were interacting, and really noticing them for a change. Often we're so wrapped up in our own thoughts, worries and hopes that we ignore the vast mass of humanity surrounding us. But having absolutely nothing I had to do, and having spent most of the last eight months separated from the general public, I was both able and intrigued to people-watch for much of the day. And, trite as it may sound, it does seem to me amazing to consider all those millions of people as individuals, with their own stories to tell, their own dreams to follow, their own problems to get through.

Don't count your chickens before they've hatched...

2006-06-16T23:31:00.000+01:00

See how yesterday I ended my post with 'At last!'? At last the chemo was starting, thought I. Silly boy! There were still a good sixteen hours for plans to change. And those who believe in fate, and the possibility of tempting it, may well have cried out in horror, "But George, don't celebrate until the chemo's in your veins!" Unfortunately I didn't hear you, and not being a great believer in Fate anyway I doubt I would have taken your concerns too seriously.

Yep, you've guessed it: the chemo has again been put off... Remember how my neutrophils needed to be over 1? And then how I reached that, only to discover my platelets needed to be over 100? Well, there was a third condition, which was a white blood cell count of at least 3, which I had actually achieved on Wednesday. Sadly it's now Friday and it was down to 2.8.

So, no chemo until at least 2012, or Monday if I'm lucky, and I'm free for the weekend. The bonus here is that I get to enjoy having a bed in London (to which I must return at night, so that I can have my blood tested in the morning) but can do as I like with the daytime - I've not had much chance to enjoy the Big Smog or see friends outside a hospital environment so am looking forward to doing so. Do give me a bell if you're free and fancy finding me.

Otherwise not much to report... Had a lovely meal with Robyn this evening, and earlier turned down the option of moving to room 12b (the second-worst room, slightly bigger and less isolated but also with less natural light), but that's about it.

Numero uno: the masked man

2006-06-15T22:36:00.000+01:00

Well, today's been jolly, as well as pretty long, as we had an early start to get up to the Marsden for my appointment in the Mould Room. Don't worry, it's not a room where they store everything that ever grew a bug or failed a Health & Safety test - it's where they make the masks used for the cranial radiotherapy.

The mask is made from a type of plastic, and before being moulded is just a flat sheet of blue lattice. Having lined me up and made sure I was comfortable, the two lovely technicians put it in a hot bath before placing it over my head, attaching it to the bed using big poppers. It felt a bit like a warm flannel. For a couple of minutes they moulded the contours to my face, and after five minutes took it off. They left it for two minutes to cool, and cut out a decent hole for my mouth, before checking it was a good fit. Which it was.

I was a bit worried that my face is still a bit fatter than usual, and may well not be come the date for the radiotherapy, so perhaps my mask would be too big. But after consultation with a doctor it was decided to go ahead, as we just don't know how much my face might change shape over the next few weeks, and if it does so too much, it won't take long to mould a new one. So that was that! The mask could well frighten small children (especially as it has my features), so hopefully I'll be allowed to keep it...

Having finished that, I wandered outside to find my father waiting for a man to come and fix the car, which had been doing strange things on the journey up. Two and a half hours later, we left... The mechanic was good, but unfortunately unable to resolve the problem, so it was a bit of a frustrating wait, though that was tempered by the sunshine. The car still goes, fortunately, so we weren't stranded, and eventually made it to St George's a bit after 2.

As a result it was too late to start chemo today, but I had all the admission bits done and moved into Room 1. Don't be fooled by its premier enumeration, though: it's officially the worst room! But it's not too bad: just a bit small and isolated. Hopefully they'll shift me when a better one comes up, though I'm not too fussed, as I'll hopefully not be in for that long this time.

My landline ends 2560, and I'm again open to visitors as long as you ring first! Tomorrow I have a nebuliser (pentamadine) followed by my chemo. At last!

1. Room at the inn? 2. Room at the inn!

2006-06-14T17:55:00.000+01:00

I'm always talking about myself on this blog, but today I've something to say about someone else as well, so will relegate myself to the end of this post...

A message from a very good friend of mine:

Hello!

I'm a 23 year old teacher and looking for a houseshare in either Woking, Ascot, Guildford or Twickenham so I can commute to a job in West End (Surrrey... not the West End or I'd be living in south London where all my friends are living!). If you know anyone who's got a room to rent or who also needs someone to live with in any of those areas I'd love to hear from them! I'm very aware that I don't know anyone in those areas so I'm interested in any possibilities at this stage. I'm on a fairly tight budget but hopefully will be upgrading from student house status.

Thanks very much!

If anybody knows of any possibilities, please let me know and I shall pass it on... She's getting a little frantic so it would be great to help put her mind at ease!

Right, as for me... I know where I'll be staying from tomorrow (Thursday), as my blood counts today were:

WBC... 3.3
Neutrophils... 1.4
Haemoglobin... 9.6
Platelets... 105

As you can see, I've reached the necessary levels for the next batch of chemo, and as it happens there's currently a bed free in the RMU. The blood-getting took a little longer than expected, and I worried at one point that I'd been completely forgotten, but the staff at St Richard's were friendly as usual. Getting the results took a while, too, and I think somebody forgot to ring me back, but we got there in the end! So anyway, I'll be back in St George's tomorrow, and will post my new phone number here when possible.

As for the cranial radiotherapy, the doctors don't want it to get in the way of chemotherapy, at least certainly not Consolidation 2. But I'm going ahead with the planning appointments tomorrow and on Monday, as then the planning will be done, whenever I end up having the radiotherapy; I'm also keeping the 7th July appointment for the actual radiotherapy, as it might be that that falls quite well into my chemo schedule. I will discuss it with my consultant when I go into St George's.

Tomandalice is here, which is very lovely and saved a couple of bus journeys into Chichester. Tom's current pet is his herb garden: poor Alice has been relegated to second place, I fear...

Touring the hospitals

2006-06-13T22:08:00.000+01:00

Thank you for all the positive comments about my last post: interestingly, it was one of the easiest to write...

Anyway, today I went to the Royal Marsden, Sutton, to see Dr Saran, who is in charge of my cranial radiotherapy. I'd met him before when we were planning Total Body Irradiation, so it was quite pleasant to be discussing a procedure with fewer side effects! He's German and, well, a little eccentric. But I digress. My appointment was scheduled for 12.30pm, and I was going to go on to St George's to have a blood test afterwards. But this morning the Marsden rang and moved my appointment to 4pm... This meant I wasn't going to make it to St George's in time for a blood test, so they wondered whether I could go there first. However, this could have meant going up to Tooting, down to Sutton and then back up to Tooting if I was ready to go in for my next block of chemo. So they suggested having my blood test at Sutton: much more sensible!

So I went to the Marsden, had my blood taken by some lovely nurses, and then met Dr Saran, who thought I was another patient at first, but recovered quite effectively to tell me about the cranial radiotherapy. It's done over 12 consecutive weekdays (so we're trying to work out where I'll stay: obviously it's not feasible to run up and down from Southbourne each day) and I won't feel a thing when it happens. Side-effects can include nausea and vomiting (though they can give me anti-sickness drugs if that's the case); losing my hair (erm... further preventing my hair from growing back soon perhaps?); somnolence; long-term neurocognitive changes; slightly increased risk of secondary cancer in the future; and maybe cataracts. I remember coming out of the TBI meeting a bit terrified by the long list of side-effects: this is much more manageable! I then signed the consent with Dr Wong, before being given some dates for planning (this Thursday morning), simulation (Monday morning) and then the radiotherapy itself (7th July).

I then tracked down my blood results and rang through the results to St George's. Yes, yes, I know, I said that I just needed a neutrophil count of 1... But actually I also need a platelet count of 100, and today I was on 86. So I'm nearly there.

So here's the plan (this might help me more than interest you... apologies):

Wednesday morning: ring St George's to talk to my consultant or a registrar to check that the dates for the radiotherapy are ok, as the former originally suggested I could have it between consolidation blocks, but one of the latter said that I'd be having it at the end.
Wednesday afternoon: go to St Richard's for another blood test, and ring the results through to St George's. They might want me in any time when the counts are ok.
Thursday morning: go to the Marsden @ Sutton for planning (assuming George's are ok with that). Potentially try to get another blood test done there, if my counts aren't quite up on Wednesday?

Right, that's a bit straighter in my head now. And I can always come and check on my blog to see what I need to do, while boosting my hit counter at the same time! Hehe...

So there we go: I'm getting a nice variety of hospitals these days. I'll let you know when I'm back in St George's, though I don't yet know whether that'll be from my laptop or my mobile.

Take care!

Annus mirabilis?

2006-06-11T19:47:00.000+01:00

I realised the other day that it had been a year since I finished my exams. That's probably the best way to date the end of my student career, since I haven't actually graduated yet, and everyone took their leave of Oxford at different times. I well remember 2nd June 2005: I remember a few people telling me they'd never seen anyone quite so ecstatic at having finished exams... I was pretty delighted.

What struck me is just how differently my first year in the Big Wide World has turned out to how I had expected. And to how it could have turned out. I'm not a big one for looking at the future, so I didn't have detailed plans and huge ambitions: in fact, it wasn't until a few days after I finished exams that I went to Literary Review and was offered a job. So I suppose upon finishing exams my life could have taken just about any path.

But as it was, I did get my job at Literary Review, and moved to London. I managed to work for a good three months or so, before the tiredness and limb pain I would later be able to put down to leukaemia put me out of action. I lodged for a couple of months in Denmark Hill, and then a couple in Chelsea: both times with wonderful and generous landladies and landlords. I went to Lourdes and carried on my job as Secretary of the OMV, while starting to consider the possibility of running for Chairman in April. And then, of course, on 31st October, I visited the haemotologist who rushed me into St George's, where I was diagnosed with ALL on 1st November.

So I've been imagining where I might have been... Working at Literary Review, still probably as Editorial Assistant, though given a bit more time I might have found a few ways to supplement my income (I had been planning to try to get a bit more freelance journalistic - probably literary, at least to begin with - work; I was also going to look into private tuition, which pays very well, particularly if you have an Oxbridge degree up your sleeve). Even more settled in London: possibly still in Chelsea as it was working out so well. I could have had a run at the OMV Chairmanship in April, and if I'd been successful would no doubt have had my life dominated by it from then on! Poor Adam... Either way, I'd definitely have been to lots of OMV events, especially as being in London makes it a lot easier. I might have found a nice local choir to join in order to keep up my singing. I was also keen on getting a bit of fitness up and joining a football team, or finding a few friends to get a 5-a-side team together. And how about ham dram? I'm sure that if the opportunity had cropped up, I'd not have been able to resist the smell of greasepaint and the tread of the boards... These latter plans were all postponed firstly by the fact that I wanted to get settled into my job and room before getting too stuck into other activities, and secondly by my health: I told myself that when I felt better I could go out and find a choir/football team/etc.

But life never quite proceeds as you plan, and I'm quite happy to accept that. I didn't imagine I'd be spending most of my time in hospital; moving back home for the times I'm allowed out; terrifying my family and friends, not to mention myself, with a visit to Intensive Care; regularly having to avoid crowds due to neutropaenia; getting almost 4000 visitors to my blog in a month and a half; increasing my knowledge of medical terms by an infinite percentage; and so much more.

As an older, wiser Norton has been known to comment, "the only thing that you can be certain of is that nothing is certain", and though he was referring to my treatment, I guess the same is true of life. I mentioned early on in my treatment that I felt my general philosophies on life prepared me quite well for something like getting leukaemia, and thinking about how everything's turned out, I still think that's true. As I say above, I've never been much of a planner in my personal life, so if you'd asked me a year ago where I would be and what I'd be doing now, I expect I would have struggled for an answer. Admittedly that would partly have been because I was most likely in a post-Finals drunken stupor, but it would also have been because I do appreciate how much things can change. My trip to ITU is a good example: one moment I was pretty much fine, having a course of chemotherapy that had been touted as being easier than what I'd faced so far, as well as being the less risky option for the relapse-prevention phase; the next moment I was down in Intensive Care with my lungs and heart at full pelt struggling to keep me alive. Best not to count your chickens before they've hatched, methinks...

Comparing what this last year might have been with how it has turned out might make the latter seem a little depressing, but to me it isn't. I've learnt a huge amount about myself, about life and about my friends and family. I've often wondered to myself whether I'm not happier now than I ever was, in spite of - or possibly indirectly because of - the leukaemia. I feel so well supported and loved, and that is something you cannot put a value on. Unfortunately a lot of people don't realise it, unless life takes a turn for the worse. I've really learnt to appreciate life, and recognise that it can be a lot shorter than it seems, so needs to be grasped! I've found out what's important to me, I've come across some amazing people, and I've decided that bacon sandwiches are among the greatest pleasures in life. Perhaps more importantly, I've realised that being happy is much more the result of such small pleasures, and making the most of things, than of life happening to fall into place. I fully intend to get better, but this leukaemia has taught me so much.

That's why I entitled this 'annus mirabilis', rather than 'annus horribilis'. True, it's had its unpleasant patches, including the deaths of both my grandmothers, and having leukaemia isn't necessarily something I'd choose, but it has in many ways been a 'wonderful year' (certainly a year to wonder at...) - in large part due to people, many of whom might be reading this. So; I've said it before and I'll say it again: thank you. Your love, support and kindness has ensured my spirits have been buoyant and have given me the strength to get through the tough patches. Thank you so much.

The Return of Neutro Phil

2006-06-09T19:05:00.000+01:00

Just quickly: I went to St Richard's this morning and had a full blood test (as well as getting the stitches attaching my Hickman line to my chest removed, as was due). The results? Well, apart from a white cell count of 2.6, a platelets count of 56 and a haemoglobin count of 9.9, I have 1.2 (x10^9) neutrophils! So I'm now officially ready for the next chemo. However, there's no room inn St George's... So I shan't be going in today. Or tomorrow. But I could be going in any time after that.

Having over 1 (x10^9) neutrophil(s?) means I am not neutropaenic! Hurrah! So I might just enjoy the delights of the Emsworth Garden Show, at which rumour has it there might be ice-cream. Harriet's working there and trying to burn herself in the blazing sunshine. She's currently very entertainingly patterned, thanks to her Birkenstocks and t-shirt.

Spot the Granpa

2006-06-08T12:55:00.000+01:00

OK, a competition. Here are two fine-looking fellows (though one might still have an overly fat face), of which just one is Granpa. Which one?

Unfortunately no prizes are available, apart from a pat on the back or a kiss if you're pretty.

The photo was taken just after Grandma's funeral: it was lovely to see Granpa on good form yesterday, and the service was nice. Tom read very well and my father's eulogy was excellent; I was very pleased I made it to help give Grandma a good send-off. Afterwards we went to my uncle and aunt's for tea and cake, where it was great to catch up with my cousins, and of course to banter away with Granpa, who is, without any doubt, a legend. I'm just glad I've got over 58 years to try to become as cool as him. I've rather overdone the baldness, admittedly, but there we go.

Harriet has now come home, which is fun, though she's working on Friday and Saturday. I'm going into St Richard's tomorrow for my blood test, and now have an appointment at the Royal Marsden, Sutton on Tuesday to discuss cranial radiotherapy, sign my consent and plan dates. They will be after my consolidation is all finished. I'm not quite sure how it'll work if my neutrophils are up tomorrow and I need to go into George's for the next chemo... But we'll cross that bridge when we get there.

Harriet has found a friend

2006-06-07T00:10:00.000+01:00

This evening, myself (Freddie) and Harriet came to Tomandalices for the night. After a lovely barbeque with some of Tom's friends from climbing, we were told that there was a hedgehog on the front lawn. And so Harriet befriended it. And that was that.

P.S. A message to all you 'animal friendly' people out there: This was conducted in a safe environment, and the animal's carer was on standby at all times. No harm came to the animal, and only a minor injury on Harriets behalf.

The Fall and Rise of Neutro Phil

2006-06-05T18:25:00.000+01:00

Today I discovered the Ford Ward at St Richard's Hospital, Chichester, and a very nice ward it seemed. It's a lot more spacious than the Ruth Myles Unit, and it was odd to see lots of patients' doors left open. All in all, I wouldn't complain if I had to be rushed in there, though I'm not too keen to have to be rushed in anywhere.

The nurses seemed lovely, and I had my blood taken (once they'd changed the bung, as the one I had needed a needle and wasn't very keen on letting a needle have much blood). I then came home and rang them for the results: my neutrophils have actually gone down from 0.7 on Friday to 0.5 today... I'm not sure why, as it's been a while since I had any chemo, but I guess my body is still taking time to recover from everything. Anyway, what it means is that I won't be going back to St George's yet: I haven't organised when I'm next going into St Richard's to have it tested again, but they were suggesting towards the end of the week.

Obviously that's a bit frustrating, as I want to get on with treatment, but at least this way I'll be able to make the most of the gorgeous weather expected this week: I know it's not going to be much fun being stuck in a hospital room when the sun is out this summer... I enjoyed the weather today from Sue's garden in West Wittering, and went for a nice walk along the beach. Then it was to St Richard's for what I think was the first time for almost 16 years.

Also, it's looking as though I'll be able to go to Grandma's funeral, though with a low neutrophil count I'll have to be careful to avoid anyone who is spluttering at all. Harriet's coming south at this very moment, so it'll be lovely to have her around; Tom and Fred will probably be going straight up for the funeral on the day. Fred's been deep in exams but finishes on Friday, after which he'll have a good 15 months before he needs to be back at uni... He's got his year abroad coming up, and is going to... Rome! The school he's teaching at is actually very close to where I lived: about halfway between there and the school I taught at, so that's quite fun. I look forward to visiting...

Hope everyone is enjoying the sunshine... Do send good vibes to encourage my neutrophils: much as I'm enjoying home it would be good to get on with things. The sooner I get on with the treatment, the sooner it will all be finished!

Full Circle Fund and Race for Life

2006-06-04T13:36:00.000+01:00

Naturally, with the sun shining so gloriously, I was loathe to spend much time on my computer yesterday. I read 'The Great Gatsby' while enjoying the gorgeous weather, and apart from my left arm, I didn't get burnt. It's lovely again today, so I'll be back on the sun lounger in no time, but I wanted to tell you a bit more about the Full Circle Fund, the charity Suzie has set up on the Ruth Myles Unit.

First, though, to sponsor the fantastic Old Gregorians who are cycling the Camino, go to their website and please dig deep! My dad has pointed out that by paying through the website, 5%+tax does get siphoned off to cover costs etc, so if you prefer to make sure every single penny goes to the Full Circle Fund, you might prefer to send a cheque. If so, make it payable to The Full Circle Fund ref: APNS, and send it to Will Edwards, 25 Vicar's Close, Wells, Zomerzet, BA5 2UJ. Then again, the Justgiving website makes it very quick and easy, particularly if you are a UK taxpayer and can have Gift Aid claimed on your donation.

Anyway, the Full Circle Fund. This is the blurb from its own Justgiving site:

The Full Circle Fund exists to enhance the Quality of Life of patients living with, through and beyond cancer, leukaemia, bone marrow failure and bone marrow transplant.

The Full Circle Fund works to promote optimal psychological recovery for patients undergoing chemotherapy. We work to define and integrate services and initiatives that help to improve quality of life, well-being and coping strategies for patients undergoing chemotherapy.

It has been a pet project of Suzie's for a long time, so it is great that it has now come to fruition. She has long believed - as do I - that it is of the utmost importance to help people cope with being ill by making their lives as pleasant and as comfortable as possible, while giving them all the help possible to cope with their illness. I'm very lucky in that I have a huge amount of support and a number of coping strategies, but not everybody is so fortunate. One small part of the Full Circle's work, then, will be for patients to share their experiences in the hope that their journeys might help others.

I'm not sure whether I've ever mentioned reflexology, but once a week a reflexologist comes around and offers to do her magic on patients' feet. There was a bit of a hoo-hah in the press recently about the place of complementary therapies in the NHS, but the way I see it is that it may not make a difference medically, but if it helps a patient who is stuck in hospital to relax, or if it somehow brightens up their day, it is worth it. The Full Circle Fund will help provide opportunities for patients to have such therapies, as well as for nurses to train in them.

Patients on the Ruth Myles Unit are often stuck in their rooms, separated from families and friends, who are sometimes kept away for a while if they have a bug and the patient is neutropaenic. The Full Circle Fund will look at ways of providing communication for such people - there is a scheme somewhere (possibly in a hospital in Ireland: I forget), for example, where I think a webcam link is set up and patients can see their homes and families from their own hospital rooms.

And these are just a few of the ways in which the Full Circle Fund might help people undergoing chemotherapy and other treatment on the haemotology and oncology wards. You might remember that early on in my treatment I decided that, in some ways, having leukaemia is irrelevant to me: if my day-to-day quality of life is high, then I am happy! I think I used the bacon sandwich example, claiming that the joy of having a bacon sandwich beats the gloom of having leukaemia hands-down. The Full Circle Fund seems to subscribe to a similar philosophy: of course the medical treatment is of vital importance, but equally important is that patients are comfortable and happy - a state that can be difficult to reach when stuck and isolated in a hospital room.

For these reasons, and because I am so inspired by Suzie's ideas and plans, I am very passionate about the Full Circle Fund. Not just because it's a charity that could directly help me! I really do urge you to sponsor the cyclists, who are all great guys and superstars for doing what they're doing. Go to their website now!

Other fantastic people include Jo, Aoifeu, Sooz and their friends, who today ran the Race for Life in Richmond to raise money for Cancer Research UK. Jo had a microphone shoved in her face at the end and explained that her name was "Jo" and that she was running for "my best mate George": hurrah! Thank you my lovelies, and well done: I've never been a runner so I don't envy you...

Here are some of the girls at the end:

And here's the back of Jo's t-shirt:

I love you all!

Erm... Home again!?

2006-06-02T12:15:00.000+01:00

It seems my neutrophils are down at 0.7, and they need to be at least 1 for this chemo, so they're sending me home, from where I'll have to go into St Richard's, Chichester, to have blood tests until I reach the necessary neutrophil level. Then back to Tooting! Of course it will be lovely to be home again, but it's a bit frustrating not to be getting on with the treatment, having settled in. It's also not necessarily going to be easy for my father to fit things around work (he can't come and get me until this evening), but we'll just have to work that out.

So... You can forget the phone number, cancel your visits and put your chemo prayers on hold. No doubt I'll be back soon!

12b or not 12b

2006-06-01T19:06:00.000+01:00

I am back in St George's! After an early start, we got here a good time before my suggested arrival time of 11am, and I was put into room 12b. I've been here before, but only for one night - it's pretty small, though the bathroom's big. There's still ample room for my bits and pieces; more annoying is the fact that it's on the dark side of the corridor, though I do get to appreciate the Japanese garden outside the window! The telephone number ends 2575.

Having had my blood taken, I went down to peabody's with my father, and who should I bump into but a couple of friends from Downside! They (Henry Trowbridge, James Lombard and Will Edwards, though Will wasn't here today) are cycling the Camino de Santiago de Compostela this summer, and raising money for none other than a charity here on the Ruth Myles Unit. I know they have a Just Giving site, and will let you know more details soon. It's fantastic what the guys are doing.

I had a really inspiring chat to Suzie, the receptionist here on RMU who has set the charity up. It aims to improve the quality of life of haemotology and oncology patients, particularly those undergoing chemotherapy and stuck in isolation. This might be through providing access to complementary therapies, or by setting up technological links to help people keep contact with families, or presenting patients with other people's stories to suggest possible coping mechanisms. Having long ago decided that day-to-day comfort and happiness is of the utmost importance, I think the charity sounds brilliant. You will definitely be hearing more about it and about the cyclists.

Unfortunately, however, I am not typing this on the internet, but emailing it from my phone, as the powers that be have, unjustifiably and thoughtlessly, decided that we cannot have internet access on the ward. This is all related to the Patientline contract, which is nonsensical anyway, as Patientline are not providing internet access themselves. They might have some kind of leg to stand on if they were, though even then the internet would be limited (an internet browser; no good if you want to use outlook to send group emails to members of your charity, or log on to a virtual private network for work reasons, to give a couple of examples) and expensive. I think it is pig-headed to deny us a system, already set up and ready to go, that would dramatically improve our quality of life. Whoever made the decision has clearly not spent even a moment thinking about what's best for the patients. Grrrr!

I start chemo tomorrow - I think it wasn't ready today. I'm not too worried about it, and intend to make the most of the time I'm not neutropaenic to keep my legs well exercised and my belly well fed! I'm open to visitors, with the usual request that you ring first to let me know and make sure the time is suitable.

And by no means least, a massive thank you to my father for my time at home, which was lovely! Thanks also to Sue for her help and support.

Thursday to St George's; funny FA Cup Final

2006-05-31T16:51:00.000+01:00

Right, I'm heading back to Tooting tomorrow morning to get cracking with the next batch of chemo, as there is now a bed available for me. I could have gone this afternoon after all, but given that I'll start the chemo at the same time either way, I decided an extra night at home sounded too tempting, particularly as that's what I had now been expecting! I do feel more ready to go back now, and will have to work out what will keep me best amused for the next week. My big question is whether they've got the internet going again yet... I really do hope so. Otherwise I'll be blogging from my mobile, I expect!

It was good to watch the football last night, and reminded me that while in ITU I managed to watch the FA Cup Final, or at least bits of it. It was a funny experience, though - being very tired and with my body and mind not working very well, I saw the game in a very different way to how I usually see it... It looked like an 8-a-side game, and seemed to be being played incredibly slowly. I was telling myself it was possibly the worst game of football I'd ever seen, so I was then surprised to hear the commentators say that it was the best Cup Final in recent history. The footballers looked awful: everything was so laboured and the pitch was too small. I also dropped off a couple of times when key goals went in. I think. It was a surreal experience. I also remember getting more and more frustrated, because I wanted to watch the whole match and see the end result, but I was tired and confused and wanted it to finish sooner rather than later. So extra time and penalties weren't what I was hoping for... For the same reason (but just because I was very tired), when watching the Champions League final back in RMU, I was happy Barcelona's second goal went in, despite the fact that I wanted Arsenal to win. I wanted to get to sleep and extra time would have stopped that!

This amused me:

Not back in tomorrow

2006-05-30T18:56:00.000+01:00

Last night I slept better than I have for a very long time... I must have dropped off some time not too far away from midnight, and didn't wake up once before 7:15am! What's more, when I woke up, it was a proper groggy wake-up, as though I'd been in a deep sleep, unlike every other time recently, when I've felt completely awake immediately. Bliss!

And I've been on the prowl: to Emsworth, no less, with Robyn, where we pottered down to the sea, then back into the town centre, around the bookshop and then into a cafe for a nice cup of coffee. In addition to that, I've been steaming around the house, and managed to walk down the stairs with one foot per stair and not using the banister for support, which is a massive improvement. I surprised Sue but bounding to the door to let her in this evening, making her a cup of tea and generally running the house!

So, all in all I'm feeling much better today, and so it seemed a shame to be going back to hospital tomorrow. However, there are no beds, so I'M NOT GOING BACK TOMORROW - forgive the bold and capitals but the last thing I want is for anyone to turn up in Tooting tomorrow to see me. Anyway, it's quite nice, now my body is noticeably stronger and more functional, that I will getting at least another day at home. I'll ring again tomorrow to find out whether there's a bed for me on Thursday; and so on. Unfortunately, each day later probably makes it less likely I'd be able to go to Grandma's funeral, but we'll just have to see how it works out.

Fi has asked me to put a link up to one of her favourite charities, and it's another wonderful site where you can help just by clicking! So don't hang around: go and click at The Breast Cancer Site, and make sure you bookmark it so you can do so again tomorrow, and the next day, and every day. I'll also pop a link down there on the right, in case you lose it.

Right: I'd better start putting my facepaint on before the England friendly this evening...

Sally; ITU special foods; bath

2006-05-29T21:21:00.000+01:00

Sally

Now you've met Sally, I can tell you about her highly-rated medical opinion... When I was first in ITU, it was a real struggle to speak, what with the mask, my massive breathing rate, having a feeding tube down my throat etc. Naturally I kept my words to a minimum, as I had to really shout to even begin to be understood. My darling father, meanwhile, has been known on occasion to struggle with his hearing. So we made a right pair trying to communicate! Now, you may remember that the transplant consultant was Doctor Dalley, and he was still looking after me when I went down to ITU. After one visit from him, when he had told me I was doing ok, I was keen to tell my dad.

"Dalley says I'm doing ok," I bellowed through my mask.
"Sally says you're doing ok? Aaah," giggled my Dad, humouring me.
"Dalley says I'm doing ok," I tried again.
"Sally says you're going to be ok? Good," replied my Dad, nodding his head.
"DALLEY says I'm doing ok," I reiterated, shaking my head.
"Sally say's you're doing ok..."
"D-D-D-D-D-D-D-D-D-DALLEY!"
"Sally?"
etc...

Eventually we got there, but boy was that frustrating for both of us! I wanted to patiently explain that, though Sally's medical opinion was no doubt highly regarded in some sections of the hospital, I didn't feel it desperately interesting to tell my father about it, particularly as I wasn't very delusional at this point; and actually, it was a little more consoling to know that my consultant thought things were going ok... Moral of the story? Don't give toys/dolls/teddy bears names that sound like doctors.

Eat! Drink!

I've been remembering some of the food and drink I was attacking when down in ITU... My basic nutritional needs were all fulfilled by the 'feed' being put straight into my stomach through the tube. But I was encouraged to try to eat more, and I was often thirsty from the mask. What's more, food and drink were a good positive to look forward to.

I had an excellent supply of Coke, which compared to the water seemed absolute heaven. I'd had that craving since before my trip to ITU, when I went out with siblings etc to Ferrari's, and found an ice-cold glass of Coke the most refreshing thing in the world. Hospital water is seldom very cold and refreshing: a can of Coke from the fridge was what was needed. I also discovered chocolate Fortisip milkshakes - which to my surprise were very tasty as well as nutritious - and ended up with a crate of them delivered to the RMU when I got there!

The biggest feature of my diet, though, ended up being ice lollies and ice-creams... Never underestimate the power of an ice lolly to cheer you up! When I moved into ITU, the weather was lovely (I even had the window open, which isn't even possible on RMU) and my family did a brilliant job of keeping me supplied with Calippos, Soleros, Starburst ice-creams, maybe a Galaxy in there. I never knew I liked them all so much... One massive frustration was an ice lolly / drink type thing that was so frozen I had to wait for it to melt enough to get it out... Those minutes went particularly slowly!

Bath

I think I should expand a little on my 'Heaven is a bath' comment last night. I've always loved baths, though in recent years have not managed to make much time for them. During my treatment I've generally avoided them (at home, this is; no baths in the RMU anyway), as I've either had a PICC line or Hickman line. which have to be kept out of the water, and therefore decided it would be more effort than it would be worth. Last night, though, with my muscles (what there is of them) aching and my legs really threatening to give me some jip, I decided to give it a go... My Hickman is actually higher on my chest than I realised, and I taped the ends up on my shoulder where there was no risk of falling in the water.

And the feeling, when I sank into the hot water, was heartstopping. Any soreness was lost, and I knew there was nowhere in the world I would have preferred to be at that moment. It felt so good I was tempted to post immediately, from the bath, using my phone, but decided to just enjoy the moment. The bliss didn't actually last that long, as my legs soon decided they didn't want a long soak and I was finding the whole thing a bit too hot, but while it did it was wonderful. I think I'll be the trying the same again tonight, though I'll remember to leave a window open, and I'll be a bit more prepared for the difficulty of getting out of the bath with pathetic legs feeling particularly weary after a nice relax.

Pic spam!

2006-05-29T11:18:00.000+01:00

I've just gone through my digital camera and only now downloaded lots of photos from over the past year. Naturally many of them are completely irrelevant to now, and certainly to having leukaemia, but it was lovely to see them so I thought I'd share a few!

This one is from the White Knights Ball: if you remember, I couldn't quite make it but my siblings more than made up for the absence...

Also from the WKB, Duncan gets a warning from Tom...

This one is filched from Adam's site, and shows a cosy supper scene at the Easter Retreat.

This goes all the way back to my 23rd birthday in Oxford shortly before abandoning the dreaming spires...

This is proof that the boat was launched yesterday! I did take a couple of photos with me in but I looked like an old Russian woman.

This just makes me laugh too much, from the wedding (thank you Lucy): Freddie and I can occasionally be quite charming, but God knows where we found the other two.

A lovely family pose outside the church.

John and Robyn at the end of his triathlon.

Sally, my new girlfriend... On my first or second day in ITU, Gobby appeared with Sally, explaining that I needed a girlfriend. She was a great comfort, though we're a bit worried she might be fluid overloaded, as her feet are a bit swollen!

Heaven is a bath

2006-05-29T00:16:00.000+01:00

It's official.

Downs and ups

2006-05-28T17:17:00.000+01:00

Looking at yesterday's post now, it seems a lot more positive than I remember the day being, to be honest... That may be due to the fact that I felt worse as the day continued: I was actually so shattered by my failure to sleep that by the evening that there was no way I was going to be able to type anything coherent. My father says he's never seen me so completely worn and quiet, and I have a new respect for the word 'utter': my body and mind were utterly exhausted and I had nothing in the tank. I don't even think my emotions were able to consider the situation: even they were empty. Zonk!

Fortunately, last night I slept much better. No doubt the extreme exhaustion helped, though as usual falling asleep was followed fairly quickly by waking up again... Somehow something clicked, though, and all in all I had a good sleep. For some reason I need to go to the loo a lot during the night at the moment, but I think the exercise it gives my legs is probably quite useful, and whenever I went last night I swiftly dropped off again when back in bed. Lying on my side and keeping a pillow between my legs seemed to make a difference, too, which is a useful trick to know now! It was a real relief to wake up this morning having slept - I really would have been in trouble if I'd felt today like I did yesterday.

So today I'm feeling a huge amount better than I did yesterday, and have been able to have much more 'normal' day. My father was planning to go to West Wittering to help Sue put her boat in the water, and wondered whether I might want to come along as well for the change of scenery. When he suggested this yesterday, it really didn't appeal, but yesterday doing anything at all, particularly if it involved any energy or movement, was distinctly unappealing. With the sun out and feeling more sleep-refreshed this morning, the idea was vastly more interesting! So we piled into the pickup, and I had a lovely time in the sunshine at West Wittering, reading the newspaper and enjoying the scene while they put the boat in. It was delightful. There were lots of families going out sailing, or just wandering, and they were all so happy! The sun was shining and these people were making the most of being alive: I'm all for that... I managed a little walk, which was pleasing, and have been trotting around more than on any previous days. My legs are very tired, but it's worth it. Getting out of the house has been a big boost, particularly as it was such lovely weather: I'm very very glad I did!

So, here's to sunshine and fresh air!

Bacon: I'm just following instructions!

2006-05-27T14:32:00.000+01:00

Remarkably, it was only this morning that I had my first bacon sandwich: all my other meals have been lovely and home-cooked and now I'm off steroids I'm not pining after extra food in between... Having not got much shut-eye again last night (though I did feel my body was getting well rested, even if I couldn't quite drop off), I was pretty hungry when I decided to give up on the sleeping idea, and sought out the bacon and eggs. Now, you all know how much I love my bacon, but I would like to point out that it was actually Samar who was most insistent that I stuff myself with fry-ups and similarly fatty foods! I think the theory is to build up my strength, but to be honest I'm not the kind of person to waste too much time asking why I should be eating lots of bacon. Forget fish and salads: get stuck into the bacon. Good advice! For the record, my bacon and egg sandwich was delicious. But you knew that.

It was a bit strange feeling mostly ok last night but not being able to nod off - I was mostly too tired to read etc, so spent most of the night enjoying the peace. I'm shattered today, but I think I managed to get some good sleep on the sofa earlier and will no doubt drop off again at some point. It's frustrating not being able to concentrate as well as I'd like, but I'm in no rush to get anything done so it's a good test of my patience.

I've been trying to get myself up and wander about as much as possible, which is helping strengthen my legs, but is exhausting. I'll probably go for a walk down the road later, to get some more serious exercise (and fresh air), but doubt I'll risk going unaccompanied, as my balance isn't entirely there and it's not like walking around a hospital... In case you were wondering, I wasn't joking the other day when I said the physios were going to take me to the gym: they have a little place where patients like me can slowly build up their strength and were planning to take me there, but then of course I left hospital instead.

It's a bit grey outside, which is gloomy but at least prevents me from being annoyed at being mostly stuck inside... Hopefully the bank holiday weekend will brighten up shortly. Is anyone up to anything fun?

Gore!

2006-05-26T22:15:00.001+01:00

Taken on Wednesday (I think) while I was in hospital, here are a nice couple of bruises that have been taking their time to recover!

I'm not sure how I got this whopper on my inside arm. It is fading at last.

I think this was from the morning everything went wrong, and I collapsed in the bathroom. Gobby saw it at the time and pointed it out. It's still there! For the record, it's on the left side of my body.

The photos were both taken by me with my new phone: hence the shaky quality! There are various other bruisey bits on my arms and chest, so I do look as though I've been in the wars... My Hickman has a peach, for example, from where the old one was taken out and where the new one has been put in.

Feeling human...

2006-05-26T13:32:00.000+01:00

Good afternoon! You may be relieved to hear that I slept a lot more and better last night than I had done the night before, so am feeling much more refreshed and normal today. It wasn't a flawless night's sleep, unfortunately, but it was a night's sleep, and I do feel so much stronger for it. I couldn't keep my eyes open when I got into bed, and it took a long time to summon up the energy to turn the lights off, but as soon as I did I was out. This was great, but it didn't actually take very long for me to wake up again in a less sleepy state... My legs were hurting, and I was worried that I was in for another sleepless night. They weren't as bad, however, and after a certain time of tossing, turning, distracting, sweating, fighting the bed-linen and chewing my t-shirt, I must have got back to sleep, as the next thing I knew it was 6:30am and I must have been asleep for a good number of hours! It was a relief to know I'd been catching up on my hours, and I hadn't even had to resort to the painkillers to do so. Waking up, I was drenched, which must have been a combination of my warm room and my tussles as I tried to sleep - it was a relief to take my t-shirt off, turn my pillow over etc.

Being pretty early, I realised some more sleep would definitely still be appreciated, but my legs were hurting a bit again, so at about 7am I elected for some painkillers to help out: fortunately they worked and I managed to get some more decent sleeping in before I got up at about 9:30am. Since then I've succeeded in gettinng yet more repose on the sitting room sofa, and my legs are feeling much better again. I'm sure I still have a huge sleep debt, but I'm digging into it and already feeling the benefits. Yesterday I could barely focus on my eyes; today I feel human!

I'm not sure how human I look, what with my face being a bit moony again, and my gleaming bald pate beaming messages to one of our friendly local planets, but that's ok: I'm still loving the ability to stroke my naked scalp and I'll probably soon lose the extra weight on my face again. Now I'm properly online I might pop up a photo to show how I'm doing... Robyn sent me a lovely photo from John's triathlon, too, so I might put that up, while I know that before my little adventure to ITU I promised to show some wedding photos! All in good time...

Home sweet sweet home

2006-05-25T17:10:00.000+01:00

I'm here, home, fed, watered and even connected to the internet... I'm also sleepy, so am going to have a lie-down, close my eyes and see what happens.

:-)

Long night...

2006-05-25T13:04:00.000+01:00

Well, I started writing a blog post at 7.15 this morning, having slept for a couple of hours from midnight but then having been kept awake by serious pain in the legs... Various painkillers eased it to varying extents, but all in all it wasn't the way I'd hoped to spend my last night in! When it was a bit less bad I managed to get some reading done, and my trusty iPod helped distract me, but I'm now exhausted, having only managed those couple of hours' sleep in the end...

However, now the feet and knees are feeling better, the doctor isn't worried about them (it may well be coming off the steroids that caused the problem), and I'm on my way home! It's so exciting to be out, though it does seem to be a lifetime since I last was... Being very tired makes it that bit more surreal, but at least I'm not delusional now! I'm also aware that I can catch up on sleep much more comfortably and easily at home, so I'm not worried about missing out on it.

I'll let you know when I'm comfortably ensconced at home - yay!

Homeward bound!

2006-05-24T19:59:00.000+01:00

Well, well, well... Samar, the registrar on the ward (who I'm sure was following me earlier on my wanderings), has said that we shan't be having the chemo on Friday after all, so as to keep closer to the original planned schedule. Therefore, he suggested, why don't I go home tomorrow for a week? Why not indeed? So I am! This is exciting news, particularly as it was unexpected, and I'm obviously enormously looking forward to some more normal time for a bit. My own bed, no observations, bacon sandwiches, wireless broadband, home cooking, walks on the beach...

The time out will, sans doute, give my brain a chance to start thinking about this experience. Going home is a little bit scary as it removes the big hospital security blanket - coming back again will be a bit nerve-wracking too with memories of what happened. But that's ok: I fully intend to carry on enjoying the privilege of being alive and making the most of everything! I'm not one to worry, even when I perhaps should: this return home is the holiday of a lifetime.

I think the fragrant Sue will be picking me up, which is very kind, and will hopefully give my father a chance to get to work. The last thing I want to do is to stop his life from functioning as normal - hopefully I can be as independent as possible, though of course he wants to be there for me when I am home. While I am still weak, I will be needing things done for me, but every day I'm getting stronger!

Naturally I don't recommend visiting Tooting to see me for the next week, though if you forget I'm sure the nurses will happily take care of any chocolates you bring. If anybody fancies the mighty trek to Chichester (a whole hour and a half from London) then you would most likely be very welcome, tiredness etc depending of course. It's really not far, and possibly quicker than getting across London to see me for many! It's my father's house though, so his decisions will be final.

Home, home, home! Yay!

My wanderings today were very rewarding. Yum lunch again, and I popped to a couple of shops to buy a yoghurt, some milk, a couple of cards, a newspaper, Private Eye and maybe a couple of other things. It's very tempting to spend all my money at the moment, as it seems so unimportant in the general scheme of things. Unfortunately my 6 months of being paid sick pay has run out now, which probably makes me unemployed too, but that's all to sort out when I get home. My adventures out concluded with some fresh air outside the hospital, just before the heavens opened and my hair could get frizzy.

There's a funny thing - I think my hair is trying to grow back quickly, but it's also still falling out so it's not getting very far. Either way, my head's not quite as smooth as it was, though I'm still loving the baldness. Baldy baldy baldy! Hair's definitely overrated.

Right, well I need to start eating up the stocks I was expecting to need to make last a bit longer... What with the steroids and perhaps my body's craving to get stronger, I've no problems with appetite.

Until the next!

Delusions of Flushing Meadows

2006-05-24T15:35:00.000+01:00

I just wanted to clear up that whole tennis delusion that cropped up at one point last week... It was odd, I tell you, but it wasn't nearly the worst delusion I was having at all. What it was was a dream that wouldn't go away when I was awake, which was of course confusing, but it wasn't so bad because I did know it was a dream (the details are fairly irrelevant: there were hundreds of new young tennis players congregating for a competition and becoming the new stars - various hospital staff were involved in training or sabotaging them)... I couldn't necessarily shift it from my perception while I was awake, but that was what was much more disturbing: not believing or being able to accept that I was awake. I felt I was talking to the nurses, my dad, the doctors in a dream, and was convinced the room I saw around me was a dream room, not the one I was in. I got my father to pinch me, and tried to rationalise what was going on, but felt I was still asleep and needed the real me to be woken up in my real room. It was distressing, to say the least, and I do pity anybody else who has suffered such sleep-deprived delusions... As I say, the tennis dream wasn't nearly so bad, as I did know it wasn't real, but I couldn't separate it from my awake perceptions.

This post is from the Consultants' room: am back in the ward again after my wanderings. I'll post again later with news.

Smile!

2006-05-24T09:24:00.000+01:00

George asked me to publish this slightly maniacal picture of Dr Evil. To advertise on the space shown, call GEORGE @ 2566.