So what do you do?

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

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:

1. 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.
2. My eyebrows are not looking quite so populated as they used to (in spite of the above photo).
3. Pompey are still riding high in the Premiership, though a stinking Man City player tried to murder our best player last night.
4. 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?).
5. Erm...
6. 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

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

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!

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

Second time lucky

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

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

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

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!