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

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!

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...

Friday - 1.4
Saturday - 1.7
Sunday - 1.8

Eh?!

Stuck in the hermitage

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

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

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...

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

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!

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

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?

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

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

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

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

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

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!?

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

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.