Not today, not tomorrow, but soon

Brief update: I am yet to go into hospital - I rang this morning and there weren't any beds today. Then one of the registrars rang me (at about midday) to explain that they're checking with the Marsden to see whether we might be able to squeeze in the cranial radiotherapy in the next few days after all... If so, I'll do that before the chemotherapy, as that's what the protocol says should be done. If they can't do it in the next few days (and from what I gathered when I visited Sutton, I don't think it's likely they'll be able to) then I'll go into St George's as planned and get on with the chemo. Unless they find out early tomorrow, I doubt I'll be going in before Friday, as they usually like me to be there by about 4pm, and considering I'm taking the train up I'd need to know by about midday.

My father was right when he said that the only thing you can be certain of is that you can't be certain of any of the plans...

Remember Anthony Nolan?

When I (and my dad, I think) posted details about getting on the bone marrow register, what did you do?

1. Sign up.
2. Think 'I'll definitely look into it' and then forget.

Here's the website, in case you fall into the second group: Anthony Nolan Trust.

Go on, you might save a life.

Oh, and in case you're wondering, I've now gone through both the potential procedures for taking bone marrow or stem cells from a donor: peripherally is too easy for words, and from the bone marrow is fine because you're under general anaesthetic, which can actually be quite fun when you wake up... Yes, my pelvis was a bit sore afterwards, but that was nothing in the general scheme of things. So do it: don't just think about it.

I'm not convinced that the road to hell is paved with good intentions, but it might be, so better to be safe.



PS If you haven't read the post below, that's what's going on in my treatment now. Hospital. For 100 years or something similar.

Aw mate, gutted

It's been great being out of hospital for a decent amount of time - properly out, without having to return once a week for blood tests etc, and there has been much loveliness, including the chance to spend lots of time with my darling father (who hasn't forgiven me for moaning about Southbourne yet). But I was very much looking forward to going back today to discover just how the final phase is going to pan out, as I wanted to start thinking about when I might be able to see London friends in a non-hospital environment, when I could start working again, and whether I'd be needing to go straight to Oxford from St George's for Graduation or what, and many other things.

Unfortunately, I was a bit ahead of myself when I assumed this phase would involve less hospital in-patient time (my hope was that it might be a few days in, followed by a week out, not too neutropaenic, for example), and more chance to get back to a normal-ish life. According to the protocol, I should have cranial radiotherapy to protect my brain from leukaemia before embarking on the chemotherapy, but somewhere along the line it didn't get organised... My consultant was very apologetic that the people who should have done it hadn't, but explained why it shouldn't be an issue to delay it until after the chemotherapy (namely 1. I'm young 2. I had a low blood count when I came in 3. They've never actually found any leukaemic cells in my spinal fluid 4. I had the methotrexate, which should have knocked out any cells that could have been there). He thinks it more important to get on with the chemotherapy.

The continuing chemotherapy, it transpires, involves four blocks of approximately four weeks each... My reading of the protocol had produced the assumption that the gaps where there was no chemo would see me out and about, and I believed some of it may have been done as an outpatient. Unfortunately, it seems I will be in hospital for each block, as my blood counts WILL be lowered to the extent that they will want to keep me in.

As my father suggested:

Thought for the Day
Bugger.

• Bang go my hopes of squeezing in some semblance of a social life between chemo;
• bang goes my chance of graduating with my friends in a couple of weeks' time;
• bang goes my expectation that I could go to Lourdes in July;
• bang goes my plan to pop back to Literary Review to work when possible;
• bang goes my joy at having spent the winter months in hospital and being out to enjoy the summer.

I am pretty disappointed, though of course I know it could be much worse. This chemo is all intravenous or tablet form, I think, and shouldn't be as bad as what I've had so far. After the chemo, I'll have the cranial irradiation, and then the maintenance chemo is really not too regular (2 weeks every 3 months, I think). One of the nurses I saw today was telling me about someone who's just finishing their treatment (same as mine): apparently he occasionally misses appointments because he's busy playing football, which is very encouraging.

I'm probably heading in on Wednesday, or if not then Thursday or Friday, and will have a few different chemotherapy drugs in the first few days, by the look of it. I'll be in for 3 or 4 weeks, depending on my blood counts at the end of the treatment. I'm actually not worried at all about the chemo itself - it's just hospital food and being stuck in my room for a good while that I'm not looking forward to, while it's frustrating not to be able to get back to life, and a great shame that I'll miss Graduation and Lourdes.

However, it's all for good reason: to keep the damned leukaemia away! So it's all worth it. Right?

Happy St George's Day

Today is the feast day of Saint George, so I wish you all a happy one and remind you that you should be eating dragon for supper. I wonder whether my Tooting hotel is celebrating in fashion: it would have been terribly poetic to be George in St George's on St George's Day, but alas: it wasn't to be. I'll be there tomorrow, though, so will keep an eye out for skewered dragons yet to be cleared away.

In case you've forgotten and can't be bothered to go back and check, I'm just going to see the doctors and plot the final phase. This is good news, as the joys of Southbourne are wearing a little thin, and I want to at least know when I'm likely to be where, so that I can plot life around it. I must remember to make a big request to have 6th May free of chemo, and will also ask about the final week of July, in the hope of making Lourdes this year. Otherwise, I'll be interested in knowing when I might be able to go back to work; whether I'm going to be neutropaenic; how much I'll be in hospital and how much out; etc.

A post scriptum to yesterday's posting about my internet presence: I'm now signed up to skype, too, so if anybody else is then we can have free phone calls over the internet! If you've got a decent connection and fancy joining, do head along to the skype website and I look forward to chatting... Those for whom a voice does not suffice will be pleased to hear you can even have video conversations.

Where to find me on the interweb

MSN Messenger is, admittedly, an enormous distraction. But it's also great for keeping in touch with people, so if anyone doesn't have me on their contact list, my address for it is "george and his banjo" (all one word, no spaces) at the usual hotmail dot com. I don't use that hotmail address for anything else, mind, so please no emails to there: they should come to my btinternet address.

I'm also on the Facebook, so if you're cool then find me on there - apologies for the lack of photos but I'll change that soon enough. Likewise on Bebo, to which I finally gave in recently, and even Friendster (though I seldom go on there except when Rob updates his blog, and he's moving anyway...) - add me if you're on any of those and we'll merrily waste hours on the internet together.

If none of that is your bag, I do exist in the real world, too. I think...

Happy Easter!

I hope everyone had a lovely Easter, though I can't imagine that for many it was as lovely as mine. Having not expected to get to Downside for the Retreat (as I would have been in hospital had my autograft gone ahead), I turned up with Fred on Thursday evening and had a wonderful time all the way until Sunday lunchtime when we left.

Thursday evening mostly consisted of greeting and catching up with people, and that was especially nice this year as many were surprised and, fortunately, pleased to see me. What's more, we packed out Bainesbury (the house at Downside that we, the OMV, rent for the duration) with wonderful people, including many of my closest friends. Hurrah! On Friday I didn't risk setting out on the Cross Walk with the others, as I'm still not as strong as I could be, but did attend the service and then in the evening chaired our 'chat with a priest and a few glasses of wine', which went very well. Saturday was more relaxed, with just a bit of flower-arranging in the morning in the Abbey (to help pay for Bainesbury), a talk I attended, and a pub lunch with the OMV lot. In the afternoon we had a game of Articulate, relaxed in Bainesbury and then later had a quiet drink in the pub as my other siblings (including in-law) turned up. Then there was the Vigil, which was lovely, and didn't seem as long as it was, before we had our Resurrection Party in Bainesbury, where we provide the youngsters of the Retreat with somewhere to let their hair down without keeping their parents etc awake. On Sunday quite a few people left early, so by the time we had cleaned up Bainesbury and had a little bit of lunch (yes, Tomandalice and Harriet, that was our breakfast) there were just a few of us left. It was very sad to say goodbye, and the time had whizzed past, but it was a lovely lovely retreat. Thanks to Jo for organising it.

The sadness of it ending was cancelled out pretty swiftly by going to Tomandalice's house for Easter lunch, where Harriet was also staying: we had a very entertaining time, washed down with some wine and punctuated with Easter egg hunts. We even found an old wooden golf club in the garden, plus a couple of old tennis balls, so the hunt was a bit more fraught with risk than usual, as I took aim at the hunters. That fun was spoilt when Tom's mighty whack saw the head of the club come flying off and almost decapitate someone - fortunately Harriet didn't remember that there was actually a set of golf clubs in the back of her car... Leaving there, though, was sad again as Fred and I realised that the wonderful Retreat and the entertainment of being with siblings was all over and it was back to humdrum reality. Or something.

I do love going back to Downside, for a number of reasons. I had five brilliant years there, and remember them fondly whenever I return. The welcome is always touching and sincere, and it's great to talk to old friends from the monastery and elsewhere in the Downside family. I suppose I also feel very proud when I go back, as I managed to get my name engraved on a couple of boards in the Main Hall and haven't yet ruined the good reputation I earned during my time there! Unfortunately there weren't any school team photos when I was in the 1st XV for rugby, so nobody believed I had been... Anyway, to the right is a picture of Greg Parvus playing for Downside, drawn by Honeypot, to make up for it. As I was saying, though, it's always great to be back at Downside, and I had a wonderful surge of energy and joy being there.

I was once again touched by the number of people who asked after me, told me that I am in their prayers and offered their continuing support. It does make an enormous difference to know that there are so many people gunning for me, including many I have not necessarily even met. I was surprised to find this blog advertised on a board in the Main Hall, but moved to know that the Downside community still cares about me. Amusingly, it was pinned up underneath another notice advertising Confession...

I love long-term chemotherapy...

Thank you to everyone for sympathetic/positive/supportive comments on my last post - I think it's time I wrote another one to explore the benefits of my change of plan! I've had plenty of time to kick things and feel much relieved by the experience. Freddie came home, too, so I could kick him, though that was generally a more virtual kick as we discovered how to link up our computers in order to let me thrash him at Command & Conquer.

Anyway, this long-term chemotherapy might take bloomin' ages, but at least

1. I can go to the Easter Retreat
2. I might be able to go to Graduation after all
3. The 5-10% risk of a fatal infection is eliminated
4. The treatment isn't nearly so intensive
5. In consequence, I might be able to start doing stuff sooner than expected
6. If I have to stay in hospital, I won't have to be in one of the internet-free rooms
7. There's no chance of ever thinking: "if only I'd gone for the other option"
8. My radiotherapy will only be cranial, not total body
9. The success rate is just the same as the autograft's
10. I can drag out the sympathy for longer (right?).

Anyway, I haven't quite managed to convert myself to believing I should have gone for this option anyway, but I'm feeling less grumpy about the change in plan. I'm trying to love it! It really has made a difference to have had everyone's messages showing support, so thank you all.

I'll get back to blogging a bit more regularly again now, though I'll be at Downside from Maundy Thursday afternoon until Sunday morning, so possibly not then.

I never wanted an autograft anyway

You remember how the plan was to have an autograft?

Forget that.

It seems I'm not much good at getting my stem cells going, as the bone marrow harvest the other day didn't provide nearly enough for the autograft... It's unlikely that further harvests would suddenly garner big results, and without enough stem cells for the 'rescue' I can't have the high-dose chemotherapy and radiotherapy, so the autograft is no longer a possibility. Naturally this is a bit frustrating, as I'd got my mind set on it and was looking forward to potentially finishing my treatment in the next couple of months and being back to full strength by, say, September.

Instead, I'll now be having the long-term chemotherapy option, which of course has its advantages. Although I'll still be having some radiotherapy, it'll just be cranial this time, so hopefully the side effects will be less. The treatment is less intense than the autograft, and there will not be the 5-10% risk of picking up an infection that would prove fatal. If you remember, the success rates of the autograft and the long-term chemotherapy are pretty much the same, as far as anyone can tell.

I'm a bit gutted, though, as I do think that for quality of life, the autograft is definitely the best option. It would have been great to get it over with quickly, and to have been able to get on with life pretty much as normal possibly even before a year had elapsed since my diagnosis. Instead I'll still be getting treatment perhaps into 2008, which is a long way away. I was also prepared for the autograft and all it entailed; the long-term chemo protocol looks daunting.

Rationally, I know that this isn't really a setback at all, considering the end result and chances of a positive outcome are the same as they were. But as you can probably tell, my rational side isn't winning the argument at the moment. I'm home alone for about 24 hours as my father's going to Edinburgh for a party and Freddie's serving beer at Aintree, and I'm quite glad for the time alone - all I want to do at the moment is mope around and kick things.

Perhaps it's all for the best? It may well be but I'm an impatient sod. The light at the end of the tunnel just got dimmer, though of course it is still there. In practical terms, I'm now at home for the next couple of weeks, though will be at Downside for the Easter Retreat (every cloud has a silver lining) and will know more about the exact plan when I see Samar and Dr Dalley a fortnight on Monday.

Hurrah for long-term chemo etc.

Wedding bells!

I've just had an absolutely wonderful weekend in London for Tomandalice's wedding, which was brilliant from start to finish. There's so much loveliness to report that I'll have to do so some other time, as I'm absolutely exhausted and must go to bed! Oh, lovely lovely lovely.

:-D