Happy New Year

Have an awesome 2006!

Supergranny

Val Rapp, my maternal grandmother, better known as Granny, died on Wednesday evening. By the sound of it, it was probably a relief for her, as she didn't seem to be getting much from life and was in quite a lot of pain. Please remember her in your prayers/pagan equivalent. I'll never forget whenever she visited Downside and about thirty boys would come up to me over the next couple of days and say, "um...I met your gran...she asked me if I was a Belgian exchange student. Then she asked if I knew her grandson, who was head boy and explained that she had 19 grandchildren." I think that sums up her outgoing and social character. Will miss her but am sure she's in a better place.

Fully wired!*

Today (Day 15, ie Wed 28 Dec) has been rather long. I shall explain in full when I am not having to dictate but basically it involved a lot of needles and a lot of drugs and some blood. Everything’s OK but lots of things happened to coincide so I’ve been plugged in almost all day, doubly so at one point. How’s that I hear you cry – tune in next time to find out...

*This title courtesy of Daddy Norton!

Charidee

[Written before Christmas so the Queen was plagerising me and not the other way round!] I’ve always thought that charities are very important, but now I think their work is even more vital, and have been interested recently in what I term ‘charity journalism’, and the variable coverage of the charity sector in the media. Admittedly it’s currently Christmastime, so everyone is thinking about charity that much more, but still… As I mentioned in my post about the little things in life being important, I believe that making people’s everyday lives more comfortable and more pleasant is of such importance, and charities play a major role in doing that.

I’ve read quite a lot of articles recently about charitable giving in the UK, and the majority pointed out that we don’t really give very much at all, and when we do give it often makes us feel we’ve ‘done our bit’ and can therefore justifiable not give at other times. At Christmas, for example, charitable giving rises considerably, as we do our bit in the ‘season of goodwill’. But most charities work all year round, and need the kind of money we give at Christmas all year. Comic Relief was attacked in some quarters, mainly for being a terrible TV show, but also because it again gave people too much of an opportunity to appease their consciences, give themselves a pat on the back and forget about charity for the rest of the year: small charities are finding it harder and harder to compete with the bigger charities, which have enormous resources. When major disasters strike, we’re generally very good at digging deep (apparently 80% of the money requested by the UN emergency appeal for the Indian Ocean tsunami was raised within 10 days), but then we give less to charities we would otherwise have considered donating to (this stat is half-remembered and I have no way of checking, but I think domestic charities reported a one-third decrease in giving in the few months after the tsunami compared to the same time the year before). One article pointed out the correlation between media coverage of events and charitable giving (the tsunami had 4543 stories in the UK press and a great response to the UN appeal; the Kashmir earthquake had 379 and a poor response to its UN emergency appeal, though could that have been partly compassion fatigue, or the fact that people had already done their charitable giving for the year?), explaining that less immediate humanitarian crises (such as the conflict in the Democratic Republic of Congo, which suffer from the twin difficulties of reporting and of finding the ‘human interest’ angles for stories, or famine in Africa, which is more ongoing) have great difficulty in raising money, because they don’t have such a high profile and thus also lack the powerful images of suffering being beamed into people’s homes, which move people to give. An article I read today explained the three strands of activity by Oxfam: (i) immediate life-saving (eg the tsunami, or the earthquake), (ii) medium-term development work (eg an irrigation scheme for a farming community), and (iii) lobbying for long-term change (eg its Make Trade Fair campaign). All three are important, and without improving the long-term situation the short-term situations are likely to crop up more often, but it’s far more difficult to persuade people to give money for long-term projects (as the article says that “Heart- and purse-strings are pulled easiest for immediate disasters”). Someone was advocating giving 1% of your income to those in need; another article promoted 10%, in a modern-day tithe.

I guess that when it comes down to it it’s a matter for your own conscience (after all, by paying taxes you’re giving a lot to charity, as the government dishes out a lot, while donating 10% of an annual £7000 salary might have more of an effect on your everyday life than giving 10% of a £700,000 salary), but I was intrigued by the media/giving relationship. Would people give more, or at least more fairly, if there were more charity journalism? Awareness is vital, and greater space in the media for charities, particularly smaller organisations that find it difficult to attract donors as they cannot afford the publicity, would be a wonderful thing. If every major newspaper in the country used one of its pages (or even half a page) to showcase a small charity every day (and, to be honest, they can well afford to give up a page, as there’s so much pap that hardly anybody would miss, and currently the mindless drivel to worthy causes ratio is about 100:1), readers would be reminded of the ongoing needs of others, and might be inspired to give a little more. I’m not much of a fan of tin-rattling, particularly when charity workers try to make you feel bad about not giving, because I think you should give to charities you are particularly impressed by, or feel a particular link to, not those who shout loudest or emotionally blackmail you most successfully, though I recognise they need to raise money as best they can. All the major newspapers I’ve seen have Christmas appeals, where one or a few charities will get the ‘season of goodwill’ donations from readers, but by presenting another good-doing organisation each day, readers would be able to to give money to the charities that they feel most moved by and otherwise wouldn’t hear about. I’d expect I also hate charities sending me pens/stickers/etc, as I’d far rather they spent their money on their charitable purposes, instead of in competition with other good causes. But charity is big business…

So that’s money. Being a poor man (I realise that in a charity context when I’m mentioning poverty in Africa, that makes me sound horribly ignorant/blind/stupid; but it is all relative, and in terms of giving to charities in the UK, I really can’t afford to give more than I do), I feeel I can give more by volunteering, and intend to do a lot more if and when possible. Currently I do a fair bit for the OMV, though I could still be doing more, and I’d like to get involved with Leukaemia Care, as a start, as that’s something I could actually bring some sort of knowledge and experience to. Giving money is one way to help charities; volunteering is perhaps a more active, or at least involved way of doing so. And volunteering can involve either taking part in whatever it is the charity seeks to improve / help with / fight / discover / etc, or increasing awareness of the charity itself. Both are vital: did you know that 2005 has been the Year of the Volunteer? I volunteer because I think it’s important to help others, because I cannot do so by giving much money, and because it’s rewarding for me, too. And fun, in the case of the OMV. And since I’ve been ill, the helping others, the making people happier day by day, the cheering people up and keeping their suffering to a minimum, seems so important. My extensive charidee work: like Smashey or Nicey, of course, I don’t like to talk about it ;-)
Anyway, something to think about.

Liver enzymes; plugged in all day; festivity

[Written before Christmas] Today (Thursday, Day 9) I got to explore the hospital slightly further because I was sent for an abdominal ultrasound scan to check for any other reasons for my liver enzyme over-activity. They didn’t find anything too abnormal. I’ve stopped the tablet chemo for a couple of days, as that could be the cause: we shall see whether it is or not.

They actually started the new anti-fungal on Tuesday before giving me the intrathecal chemo – which was indeed done by Prashant (who spells his name like that, I now think – no doubt he’ll correct me if I’m wrong, as he was looking for this blog today so I gave him the address!) – so I didn’t have too many hours flat out and plugged in, though the anti-fungal took six hours. Today I’ve been pretty plugged in, though, what with my morning mostly taken up by the ultrasound, then breakfast, shower etc, before getting the intravenous chemo (half an hour), followed by anti-fungal (over a mere 5 hours this time) and now a unit of blood (taking 5 hours) as my haemoglobin was a bit low again. It’s good to be getting the blood boost, as I was very weary last night and again today: this should give me more energy.
My room, thanks to several lovely people, is now looking much more festive. I’ve got two stars: a stained-glass one dancing from my drip stand and a glowing one wobbling on my table. And then there’s a lit-up wooden nativity scene above my radiator, as well as an advent calendar sitting on my bedside cupboard, and festive paper chains hanging above all my windows. Cards I’ve received since having come back in are now up, and I even have a Christmas tree, with presents underneath it! So I’m feeling a bit more Christmassy, having missed out on things like Christmas lights (apart from the terrifying house displays in the backwoods of Southbourne) and Christmas shopping, though the more religious among you might point out that they’re not really the important parts of Christmas. I think the provisional plan for Christmas Day, assuming I’m OK to escape the hospital, is for my family, who are coming up to Tooting on Christmas Eve, to come to Mass at St George’s on Sunday morning, frogmarch Father Peter up to my room to bring me Communion, then bundle me in a car and take me away! I haven’t really checked with the doctors what they expect the plan to be, though, so must try to remember to do that tomorrow.

Happy Christmas!

Hey everyone, this is Fred posting on behalf on George. He wants to wish you all a merry christmas and apologise for not posting for a while. He has written a whole bunch of stuff over the last week but hasn't got around to uploading it yet, hopefully it will appear soon! He came out of hospital on christmas eve, and stayed with us in Tooting until this morning (boxing day). It was lovely being able to have him with us for christmas but by the end of it he was mahussively tired, so much so that he slept all of today after returning to St.Georges! But the main reason for this is that he hopes everyone had a wonderful christmas.

I'm rather fond of Mondays

I don't have any chemotherapy, the ward is livelier than it is at the weekend, and now it seems to be becoming a good day to go to my favourite Italian restaurant in Balham, Ferrari's. My big bother [sic, with apologies to Harriet Mary Norton Chatterbox] Tom came too, as well as my dashing father (he dashes a lot), and once again I ate handsomely. I'm not so sure I sat there as handsomely, due to my thinning on top (I do like that grammatical construction, which is often ignored in favour of 'me thinning') and my fat face, but that is of little import: certainly of less than my handsome eating. I've been loafing around in clothes all day, too, which makes a nice change, and I do like my shirt, which has lots of coloured stripes and requires cufflinks, which were unfortunately lacking today, but are in plentiful supply at home. Tom saved the day with his thinking outside the box by suggesting I roll the sleeves up a little. This could have been dangerous, as the beautiful tubes from my PICC (Peripherally Inserted Central Catheter... I think) line were consequently clearly visible and could have frightened waiters, small children, or even both, but this time my jumper stepped in and discreetly covered up the problem. Supper I ignored, as I didn't finish my lunch until about 3:30 (with a nice cappuccino - not as nice as the espresso I had last week) and the hospital sees fit to feed us at 5:30, but I've just had some toast (9:15), so all is well. The delightful Robyn visited too, and was delightful in spite of having to wait around in my room while we failed to hail a taxi back from Ferrari's.

Tomorrow (Tuesday) is Day 7, and thus I shall be getting the next dose of intrathecal chemotherapy. I'm wondering who will be doing it - my money's on Prishant, the spelling of whose name I am yet to discover. I'll also be getting a different antifungal drug dripped in, because one of the tests they do on my blood, showing how my liver is functioning, is a bit high, and has been rising. It's not yet worryingly high, but is probably a side effect of a certain antifungal drug I've been having, so they're changing that. Unfortunately the new one means I'll be plugged in to the drip machine for four hours (I think) every other day, though they thoughtfully decided to start tomorrow so I won't need it on Christmas Day. It might have some other side effects, too, such as making me shivery, but we'll see what effect tomorrow. It does mean that I'm not going to be nearly so mobile tomorrow, what with four hours on my back after the intrathecal, and four hours getting antifungal. Maybe they'll give me the antifungal straight after the lumbar puncture? That might be sensible. Then again, medically it might not be.

I should be seeing the transplant consultant soon to talk about the relative risks and relative chances of cure involved in having a bone marrow transplant as opposed to the other potential Phase 3 treatments. It's a bit scary, I suppose. But I'm eager to find out what will be happening after 11th January (Day 29 of Phase 2), though ignorance is often seen as bliss. Knowledge is power? It's not what you know, but who you know. Knowing me, knowing you. I think I'm losing the plot again... Can I blame the chemo?

Patientline...

...seems to me to be nothing but a money-grabbing monster. The company has an exclusive contract with the NHS to provide TV, radio, telephone and internet to patients' rooms. However, the TV costs £3.50 a day (less if you're over 60 or in for more than 14 days, but if you're in for 70 days, as some people are on this unit, it would still cost you about £120 if you wanted a couple of hours TV every day, which is quite possible if you were stuck in a room here for that long), the phone costs 'approximately 10p/min' to phone out, and 39p or 49p per minute to call in, the radio has only a few channels with poor reception, they're not providing internet, the whole unit is often on the blink (as mine has been since I've been here), and they have the cheek to get angry if hospitals are therefore naturally inclined to provide their own alternative, or have been donated alternatives. Their literature talks about providing the best
possible service for patients, staff and everyone, but I can't see how they can possibly justify ripping people off quite so blatantly.

If someone is stuck in a hospital room for several weeks, looking after them doesn't mean giving them a phone that nobody could afford to ring for more than about two minutes, a TV that would bankrupt them (especially as they may well not be earning while ill), notional access to the internet that isn't set up, and all this regularly having technical problems anyway. If it all worked well, they could justify charging a small fee to cover the services and earn a little,
but surely their prices are just an abuse of the situation patients find themselves in? If I wanted to type up a blog entry like this, it would probably cost me about £1 (4p/min, and I tend to type these fairly slowly as, contrary to appearances, I think through what I want to say while keeping one eye on '100 Greatest Christmas TV moments'; what's more, the keyboard for the Patientline machine is minuscule, which would slow me down anyway but be particularly tricky with my peripheral neuropathy). I've no idea how many posts I've done now, but this would be a very expensive blog. Just to add to the evil of the company, the Ruth Myles Unit did have internet access in all the rooms, but was forced to stop offering it because of the exclusive contract with Patientline, who should therefore be providing it. I think they should be provided with a big slap, personally. It takes a lot to wind me up, but Patientline...
Grrrrrrrrrrrr...

Visitors, Christmas presents and nurses

I had about a billion lovely visitors today [this post written on Sunday] which was great. It probably would have been a bit much yesterday, as I was pretty sleepy and didn't have much energy, but apparently that was because my haemoglobin was low, and consequently I was given some blood. Thus today I was on far more energetic form, and had lots of fun with mostly OMV friends who had been to the Christmas reunion, which, it seems, was almost as fun but needed a bit of oomph in the choral department.

I'm having a few difficulties with Christmas presents, not because I can't get them bought, because several people have offered to help out with that, but because I'm relying entirely on my imagination for ideas... I can't wander the shops and see things that would be perfect, and though I looked a bit on the internet before coming in, now I'm offline again I can't even do that. My imagination has come up trumps for a couple of people, but, as my good friends the Gumbies might say, my... brain... hurts...

And now: a hello and thank you to the lovely nurses of the Ruth Myles Unit, such as Gobby and Michelle, who were told about my blog today: fortunately I don't think I've told the truth about them on my blog, so they might still be talking to me tomorrow... Actually, Gobby's one of my favourite people in the world at the moment, because she brought a coffee machine to work. Proper coffee! Mmmmmm... That had already made my day, before I had my billion visitors.

Jokes of the week

Number 1:
One of George's beautiful female friends: "Adam and Katie, why are you wearing silly headgear, what with you, Adamski, sporting a fetching three-pointed pirate hat and you, Keeno Katie, showing off a delightfully retro bowler hat?"
Adam 'Spuds' Shpludakowski or Katie 'Keeno' Keene: "We went ice-skating before
coming to see George."
George: "So the order of your priorities was to go ice-skating and THEN come to see me? Ice-skating is more important than me? Don't you know I have leukaemia?"
General reaction: "You can't say that! That's so mean!"
George: "Mwahahahaha."
George possibly also: "I can say what I like, I've got leukaemia." [or perhaps that was on another occasion, and is crammed in here because it fits quite nicely and thus presents two different jokes of similar style]

Number 2:
White Knights Ball committee member: "Are The Quiffs Barbershop Quartet [credit to the balding feller in the green pyjamas for that title, though with recognition due to Miss Joanna 'Jo' Dowbekin for the original use of the nomenclature] still going to perform at the Ball?
Rachael 'Organising a £50,000 fundraising ball while doing a medicine degree and a billion other things' Morris: "Yes, though I need to get in touch with Ollie 'George's cousin and former Head of School at Downside' Mellotte. George was going to organise it but then he went and got leukaemia, which was pretty inconvenient of him."
Half the committee: 'chuckle'
Other half of the committee: '? <> ?'
Rachael: "Mwahahahaha." [possibly, though this wasn't reported and has been added, as permitted by George's poetic licence which, though revoked after his attempts at out-Ogden-Nashing Ogden Nash, was returned to him as a direct consequence of his 'Aspariginase' song]

Number 3:
Tom 'Captain' Norton: "I might want to be an accountant one day."
[George: "That was a joke, right?"]

An aside:
I read an interesting article by a writer of the TV programme 'Shameless', in which he defended his and his co-writers' decision to pen a storyline based around one of the characters pretending her younger brother had cancer so that he wouldn't be expelled from school. Apparently he even shaves his hair off in line with what the chemotherapy would have done, and the writer hopes that cancer sufferers and their families aren't offended. (i) He believes, however, that drama should push the boundaries and deal with experiences beyond the everyday and acceptable, and (ii) in fact the plot was inspired by the true story of somebody pretending to have cancer. In my opinion, it's entirely justifiable, for those reasons and also because (iii) if you don't like it you can switch off, (iv) I think it's important to be able to keep a sense of humour and being able to laugh at your illness/predicament always makes it less intimidating as well as cheering you up, and (v) an entertainment show is there to entertain, not to moralise. I love 'Jerry Springer: the Opera' (and remember I'm coming at it from a not-very-theologically-confident-but-believing Christian viewpoint, which I know I've promised to tell you about but as yet haven't really) almost as much as Freddie loves James Blunt, though I see why some would consider it blasphemous. I shan't spend too much time on that argument now because it can get quite long-winded, but in short I completely divorce the 'God', 'Jesus' and other religious characters in 'Jerry Springer' from the God and Jesus I believe in, and think that the sheer entertainment value of the enterprise justifies both the voluminous swearing and the fact that much of it could be seen as offensive by people without a sense of humour, while if you don't like it you don't have to watch it.

Are jokes 1 and 2 at all out of order? I know 3 is just disturbing...

This weekend I have been mostly...

...drinking proper coffee and watching my hair fall out in the shower.

Bacon vs leukaemia

It’s really struck me just how important the little things in life are. Yes, the big things such as relationships, be it family/lovers/friends, or faith, if you’re that way inclined, or perhaps a focussed ambitious career path, if that’s important to you, are vital foundations. But the little stuff gets you through each day. Or at least it gets me through each day.

 

This is why I think there’s no reason for me to be any less happy than someone without leukaemia. I’m happy because today I have lovely visitors, and I might have one of those nice ready meals in my fridge. And I’ve got exciting little things to look forward to. I might be able to pop out for a few hours on Sunday/Monday, and that makes me happy, even though it’s just a possibility. Things like bacon sandwiches make me enormously happy. Leukaemia might seem to be a big negative, but the positive effect of a bacon sandwich is far greater.

 

Day to day, is my life ruined by leukaemia? Of course not. OK, I’m stuck in hospital, but my room is pretty well-stocked and decorated. I probably see far more people than I would if I weren’t ill, and feel incredibly loved. The future is uncertain, but the present is certain: I’m here and getting on with the treatment. It’s a case of making each day interesting and enjoyable. Which I do by doing things I like: reading the newspaper, writing things like this for my blog, talking to people on the phone, reading letters/cards, reading books, watching good TV programs (yes, they do exist), struggling with the cryptic crossword, thinking, having a reflexology session, chatting to the nurses, catching up with visitors, &c.

 

That’s the same whether you’re ill with leukaemia or not. This is why I could never do a job that I didn’t find interesting: you might get great rewards, which might help make the time you’re not working more fun, but if most of your waking hours are spent doing something you don’t enjoy, then is the payoff enough? Whether I’m in hospital or at home, whether I’m at work or at uni, whether I’m ill or healthy, each day I’m immensely cheered by little things.

 

And even if things are tough in the immediate present, there are always good things to look forward to, be it a bacon sandwich when I’m allowed out, or the end of intramuscular injections (admittedly that positive is a double negative, but thass ok), or another lovely letter, or Christmas, or the next great book to read. I could never not have something good to look forward to while literature is still legal.

 

I don’t think anybody can ever say that they have nothing to look forward to, because you make of your life what you will. If you feel you have nothing good to look forward to, then you can organise something so you do. Ring up a friend you haven’t spoken to for ages. Pick up a good book. Make a bacon sandwich. This all comes back to the ‘happiest people not having the best of everything, but making the best of everything’ dictum: I don’t believe in being happy by waiting for life to treat you well. Unfortunately life doesn’t always treat you well, but it’s how you deal with it that determines your mood.

 

Of course, if you rely on good little things to cheer you up, it’s possible that bad little things could have an equal effect on you in the opposite direction. But only if you choose to let them. I could be sitting here in floods of tears because I don’t like my fat face and I can’t go home and my hands feel funny. But I’d rather look forward to not having a fat face, to going home and to my hands hopefully getting better (and if not then getting used to life with them tingling). I’d rather smile at the lovely phone calls and visitors and letters and cards I had today. I’d rather laugh again remembering the tale of the Argh Peterty.

 

My post about ‘Je t’aime John Wayne’ was more important, therefore, than perhaps was immediately clear. I think it summed up what I’ve just been trying to explain. I said something like ‘how can anybody be sad when such a film exists?’ and that wasn’t just me being hyperbolic. It genuinely made me so happy to watch (and still makes me laugh and grin when I think about it or watch it again… sorry it doesn’t seem to be available online) that it cheered up my day. A little thing, but the little things keep your spirits up.

 

This also explains why I think nurses are great, and why what the OMV (Order of Malta Volunteers: there’s a link to the website in the right-hand column of this page), for example, does is so important. People who are ill or suffering might have fewer little things to cheer them up. You might hope for a cure for cancer or an end to wars, and both would be great, but at the moment people’s lives are still made difficult by cancer and war, so it’s of such importance to make sure people can get through each day with a smile on their faces. So if in some way you can make people’s lives a little more comfortable or entertaining, it’s wonderful to do so. The most amazing thing you can do.

 

So: on the scales, the joy of a bacon sandwich easily outweighs the gloom of leukaemia. At least, it does on my scales.

 

Am I guilty of being short-termist? Should I worry more about the future? Should I focus more on the Big Picture? Is there such a thing? Am I relying too much on bacon? Should I be a vegetarian? Have I been reading the Guardian too much? Do I see the world through a rose tint? Does the word tint exist? How shall I end this post…?

 

Day 2

So, today is Day 2 and we’re merrily wending our way through this second phase.
Was that a royal we? No, I guess that I feel you’re all wending merrily with
me, as are all the lovely nurses and super doctors and a few Luddites who will
never work out how to read this but whose support is no less appreciated.

Day -1 is so called because originally the intravenous chemo started on Day 1
(as it still does), but so did the intrathecal chemo. However, a few years ago
there was a high-profile case when the intravenous chemo was given
intrathecally, which is invariably fatal. One of the measures they brought in
to ensure this never happens again was to not allow any patient to have
intrathecal and intravenous chemo on the same day, and rather than completely
shift the numbers (and thus potentially confuse everybody who was used to the
old system), they brought the intrathecal forward a day, from Day 1 to Day -1.

Another measure is that every time doctors go to a new hospital (and they move
every year), they have to go through the process of getting on the register to
be able to give intrathecal chemo, by observing others who are registered, then
doing a certain number of injections themselves while observed by doctors on the
register. At the moment they’re all getting themselves back on the register
here, so I’ll probably have a different doctor each time for my lumbar
punctures, so that they can tick off their observed attempts! This time was
quicker than my first intrathecal, perhaps because the doctor didn’t have quite
so many spectators…

Yesterday was Day 1 and I had two different drugs (chemotherapies? types of
chemotherapy? chemos?) intravenously, which didn’t have any particularly
noticeable side effects. The nurse (SuperLee: she moves at twice the speed of
light and never stops) gave me some anti-sickness concoction first, and said
that it wasn’t likely the first doses of chemo would make me sick but perhaps
cumulatively it might. We shall see! Funnily enough I felt a bit grotty before
lunch yesterday (BEFORE getting the chemo), but had a bit of a doze and felt
fine afterwards, as I have done ever since.

Today is Day 2, and I’ve had one of the drugs intravenously again, as I will
tomorrow and Saturday. Then I get two days off before the cycle starts again
(intrathecal on Tuesday and intravenous Wednesday-Saturday). Oh, and I’m
getting another drug in tablet form (Days 1-28), which I have before breakfast
every day: I wondered yesterday whether that was why I had a bit of a tummy
ache, but it wasn’t repeated today so hopefully it was just because I was tired
due to getting up early on Monday (Day -2?) morning and taking a bit longer to
sleep on Monday night.

The great news about the way this phase is timetabled is that Christmas Day and
Boxing Day (and New Years Day) I’m not having any intravenous OR intrathecal
chemo, which a) is very pleasant and b) means they may well let me out to
celebrate Christmas en famille. Hurrah!

As I haven’t been told I’m neutropaenic again (yet?), I’ve been making the most
of being allowed out my room. Admittedly that’s just involved strolling down to
the newsagents in the hospital to buy the newspaper (I was getting a bit fed up
with The Times, so am now trying the Guardian) and wandering up and down the
corridor on the Ruth Myles Unit annoying the nurses and trying to peer into
other people’s rooms. It’s nice to feel slightly less isolated, and good to be
keeping my legs going a bit more than I did last time.

Good TV

I hardly watch any TV, but did anybody see 'The Magnificent Seven' or 'Songbirds?' I thought both were excellent. 'Space Cadets?' Very entertaining, though Johnny Vaughan's a bit of a prat. Oh, and don't get Freddie started: I'm not sure what he'll do now it's finished...

(Posted by Freddie for George!!)

By Rainer Maria Rilke

Be patient to all that is unsolved in your heart ...
Try to love the questions themselves ...
Do not now seek the answers,
which cannot be given because you would not be able to live them.
And the point is to live everything.
Live the questions now.
Perhaps you will then gradually, without noticing it,
live along some distant day into the answers.

Are you in? Or are you out?

Well… We got up early and trundled up to Tooting, I gave some blood (exciting to be in daycare: it’s much more populated than isolation…) and had my dressing changed, and then waited for the results. And, to everyone’s complete surprise, my counts are up, high enough for Phase 2! The doctors were surprised, the nurses were surprised, I was surprised and you, too, sir, might be surprised. They really didn’t expect me to be coming in today, so much so that the doctors had to go and work out just what the plan was for kicking off Phase 2 – they hadn’t expected to have to think about it until perhaps Thursday.

That gave us time to go and get some food, though, and I had the most delicious lunch in a lovely Italian restaurant. This was an unexpected bonus, because I’d written off the chances of going out for a meal for a good long time (because I have to be so careful about what I eat, how things are cooked etc), but the nurses and doctors were fine with me going to a good, reputable restaurant. And it tasted soooooooooooo good. Eating nice food was one of the best things about being at home, and hospital food was probably the thing I was looking forward to least about coming back in. So it was great to make the most of good food before coming back in.

My old room was empty, so I’m back in Number 3, and that means I have the same phone number too. I’ve brought back some of the stuff I had in here before, but not everything, as it would have just been silly. If you gave me a book and it’s not here with me, it is just because I can’t read all of them at once: I may not have a chance to start it during this four-week stint, but rest assured I’ll get to it at some point! If you lent me anything, want it back and I don’t have it here (again because there’s only SO much stuff you can bring into hospital), let me know and I’ll get someone to bring it up next time they visit.

So, the four weeks of Phase 2 start tomorrow, because the doctors registered to give chemotherapy intrathecally aren’t in today (perhaps they thought about coming in but said “well, no chance George will have got his counts up yet, so I shan’t bother”). I get intrathecal one day, followed by intravenous each of the next four days, then a day off, then the same cycle, approximately. Oh, and chemo tablets every day, too. All fun.

My neutrophils are actually up to 1.1, which means I’m not neutropaenic (<1), though that’s still well below the normal level of 1.8. It does mean I am allowed out of my room, and they’ll let me know if that changes. I am still tired and don’t have enormous amounts of energy, and having more chemo is unlikely to help that, but it’s nice to know I can be a bit freer. They might be able to let me out on Christmas Day, which would be nice, though my family are going to be staying just down the road, so even if I can’t escape the hospital they’ll certainly be around.

Interestingly, tomorrow is Day -1. I’m not sure why Phase 2 starts in the minus, but will ask.

What I'm hoping...

I'm not sure whether to hope that my white blood cell count is high enough tomorrow or not: on the one hand, it would be lovely if it wasn't, and I could come home again for another few days / week, but then on the other hand I'll still need to get this four weeks of chemotherapy done, and so maybe it would be best to get it over with asap. Either way there are bonuses, so I guess I'll just enjoy the benefits of whichever way it turns out!

I think I'll faint if I see a hospital potato, though.

Ah, the sea

I just went for a lovely lovely walk down by the beach. It wasn't very long, as I'm pretty pathetic, and now I'm exhausted, but it was so nice: the sun set while we were there, and though it was cold the crisp air was so refreshing. The tide was out, but the colours were gorgeous and I really should have taken a camera. In fact, I almost did, but saw my fat face in the mirror before I left and decided that I don't like it very much and therefore didn't want to encourage any photos of that. Here's an old photo of Prinsted beach anyway, though it looked a bit different this evening, what with there being no water, but a lovely orange tinge to the rocks.

My legs are weak at the moment because I haven't used them much over the past 6 weeks: I'm not sure whether during Phase 2 I'll be able to make more effort to keep the muscles a bit stronger, or whether again I'll mostly be too weary. I did try to wander around my room every evening for a bit at the beginning of Phase 1, but as it went on I didn't really have the energy to do so. I know that when I come out again I'll be able to build up their strength, but I wonder whether to really try and keep them up anyway. On the one hand, if I'm weary I should rest because my body needs it, but on the other hand it would be nice to remain as 'normal' as possible.

On another note, Alice (of Tomandalice fame) has fallen asleep on the sofa, which is sweet. She's marrying my brother! How cool's that?

The individuality of pain

I was thinking about suffering, and the fact that I don't want people to worry that I am in pain, because I'm generally not, and in fact if you're sitting there with a headache, then actually I might be more comfortable here right at the moment, even if your body is likely to be in better shape than mine overall.

It's interesting to think that nobody can know how something feels to someone else - this is a point that struck me whenever the nurses gave me my asparaginase jabs. They hated having to give the jabs, because they knew it would hurt me, but even if they had experienced intramuscular jabs themselves, they still actually had no idea how much or little it hurt me, except by what I told them. The doctor who gave me my first bone marrow test had one himself once (that's dedication) so knew how much it hurt him, but we all have such different experiences, pain thresholds, philosophies, bodies, everything really that there's no way he could know where on my scale of pain it slotted in. So I think I'm fairly comfortable here, though my hands are annoying and my lower back is a bit sore, and I'm weary, but I don't know whether exactly the same symptoms in someone else would have them declaring themselves fully fit, or incredibly unwell.

But I don't like to look at happiness/sadness or comfort/pain as a sliding scale, whereby a broken arm is worse than a cut finger, but leukaemia is worse than a broken arm, and therefore I am worse off than a person with a broken arm, but the person with the cut finger is the luckiest. We all have trials, and they're all different: it would be impossible to count them all up and work out whether we're luckier or unluckier than others, and there'd be no point anyway. I'm also against the idea that good things and bad things balance each other out in some way - the belief that if you get a dose of good luck there's probably a dose of bad luck around the corner. Indeed, I just don't look at life that way: it's not about how/why things happen, but about dealing with what does happen, and making the best of it. A couple of people have said that they approve particularly of one of the ten things I mentioned ages ago in 'some thoughts', the one about the happiest people not necessarily having the best of everything, but making the best of everything. The way to be happy isn't to wait in hope that everything will go well, but to make the most of what does happen, whether it seems tough or not. I've realised this is absolutely key to my philosophy.

The 'Argh Peterty!'

I hope you didn't miss this post, as it deserves more attention... Particularly as I've posted lots of stuff recently, little of which has been of amusement!

The tale of the 'Argh Peterty'.

Steroids

Tomorrow is my last day of steroids, and I won't be getting much (their dosage has been scaled back each day since Monday). I wonder whether I'm missing a bit of the boost they were probably giving me, as I have felt more worn in some ways. I don't seem to be losing my appetite, though. I wonder whether I'm still eating a lot because I'm making the most of being able to do so or because of the effects of the treatment. Whatever, it's good to eat, and thus keep my strength up.

Oh, it would be nice to...

...feel things properly with my hands. The peripheral neuropathy is getting boring now: apart from pins and needles in the end of my fingers and thumbs (and now it tingles a lot all the time, and has spread further down my fingers and sometimes tingles in the palms too), it feels as though it's stiffened my hands, as though they might seize up completely at any moment. Grrrr.

Why I've been quiet on religion...

I think that explaining some of the reasons why I haven't posted about religion/faith/God might be a good start to actually doing so now. Naturally if you don't want to hear it, look away now!

I doubt many of you will ever have heard me talk much about my faith, in fact, because it's always been something I've kept more to myself than explored more openly with others. That's not quite right, because in practical terms I went to a Benedictine school, go on pilgrimage to Lourdes, like to spend Easter at Downside, go to Mass, and happily declare myself a Roman Catholic, for example: these are all experiences I share with others and that have obviously played a major part in developing what I believe in. But when it comes to actually talking about what I believe in, and particularly discussing theological issues, I've generally kept my thoughts to myself.

So (and I don't know which is cause and which is effect) I've always thought of religious belief as a very personal thing. Far from being an evangelist (and I never felt comfortable with the aggressive Christianity you see so much, and get thrust in your face too much, I felt, at university), I've always felt that my faith is something for me to explore in private, and certainly not force on anyone else. If someone asks me about what I believe, I prefer to say 'I'm Catholic' and move on (there are exceptions, of course) than to actually go into a description of what I believe.

A lot of this is probably because I, like most people, am not sure what I believe. Faith, by definition, relies on believing things you can't be sure about (in a scientific sense), and it would be a rare believer who never questioned their own beliefs and faith. In any sphere it's generally good to share ideas and debate, to help discover what you believe, but I have never felt confident enough about what I think to feel at ease arguing it. I never had any desire to talk to the CU lot at Oxford, because they were so confident in what they believed, or at least seemed it, and I knew they could easily argue why they believed it. Equally I had no desire to talk to non-believers, who could happily line up arguments against anything I had vague notions of... Religion is a source of such differing ideas/beliefs, none of which can be proven either way, that many people love to argue about it and are very good at doing so: I don't and am not!

Partly that's just me being non-confrontational - I don't like arguing with anyone, or even disagreeing. I often have to stop myself from ceding to people's points of view simply because I don't want to put them off. And that's probably a major reason why I haven't brought up religion here. I know many of my friends don't believe in God, and I don't want a) to argue with them and b) put them off me! Which is crazy, because these friendships aren't conditional on having the same religious beliefs, but I just don't like to cause a fuss... I do think some appreciate the fact that I have never tried to force my beliefs on them, but I know that actually as a Christian I should be trying to spread the Word. I don't have the confidence in my own judgement, however, particularly when it comes to such an enormous issue such as theology, to assume that I am right, so I could never try to persuade a friend that they, too, should be Catholic. Or Christian. Or believe in God. Or whatever. Because they are equally or more adept at making their own minds up.

For these vaguely-explained-and-not-very-well-described reasons and probably many others I haven't mentioned, I've avoided mentioning God. Until now. I have thought a lot more about religion and my own faith since being ill, as I have about lots of things, and I guess I've realised that it is very important to me. I think it's silly for me not to to talk about what I believe, particularly as it may help me to clarify things, and it may help friends/family to know what's going through my tattered brain, and perhaps help you work out what you think (not that it's about finding answers, necessarily: working out the questions is hard enough sometimes).

I will therefore be posting about my religious thoughts, and of course you are welcome to ignore such posts if you'd rather not know what I think. But please do feel free to add your own views, questions, anything: I've always been very open generally, but not about religion and so I do feel a little more naked than usual (and that's saying something, considering the fact I've been loafing around in hospital in little more than a pair of boxer shorts).

Thinning, fresh air, laziness

My hair's definitely starting to fall out. I first noticed on Wednesday, and now if I run my hand through my hair it'll usually have a couple of hairs on when I look at it. It's most noticeable when drying my hair after the shower: lots of hairs in the towel! It's not very apparent looking at me, but as it's started to go, that's likely to change over the next few days...

I got up fairly early today and was fairly active this morning, including wandering outside for some fresh air, which was very pleasant. Lying in bed thinking last night, I was feeling a bit guilty for making the most of the fact that I'm ill by not bothering to clear things away after myself, for example, which I can easily justify by claiming to be tired, but actually often is just because I'm lazy. So this morning I was more active, and didn't just leave everything for everyone else, and it was good.

But then I was knackered, so clearly I don't have so much energy after all! Have been reading through Leukaemia Care stuff, which is interesting.

Tidying up...

Have just been fiddling with the blog a bit: I've made it so only the most recent 10 posts will be on the front page, as it was getting far too unwieldy. If you want to read any old posts, you can find them in the archive section (link on the right), or particularly important posts I've put links to above, as you may have noticed. Technophobes fear not, new posts will still appear here!

I've also been cleaning up a few posts where the line breaks were funny, even though I was simultaneously pushing them off the front page and thus making it less likely people will actually read them again... But I'm like that. I'll probably at some point add punctuation and correct any spelling mistakes or dreadful grammar, too. Apologies for all those errors, particularly to my colleagues at Literary Review (still stuck for Christmas presents? How about a subscription? Ideal!), because they've been rumoured to care about such things.

What this week was like...

Monday was of course Day 29, and the last day of Phase 1, so I had my last asparaginase injection, as well as another bone marrow test. Kindly they offered some sedation this time, so it wasn't nearly so bad... Actually, I think it probably was still very painful at the time, but a) I was relaxed enough by the sedation not to worry (and thinking about it is the worst) and b) I couldn't remember it afterwards (though I think I remember thinking, 'ah yes, it does still hurt a lot, doesn't it?'). I even dozed off when it was over, and was probably quite amusing until the effects of the sedation wore off.

Tuesday I was confused, as my brain had given up counting beyond 29, but the doctors came in and I chatted to my consultant about the plan. Phase 2 was explained to me: it is basically another four weeks of chemo, mostly intravenous but once a week intrathecal, too. It will start when my white blood cells are back at an acceptable level, as I've mentioned before. It could be done with me as an outpatient, though coming in for five days out of every six, but because I do not live locally I'll do it as an inpatient again, though they might let me out occasionally, for a day or two. At some point I need to talk to the transplant consultant about Phase 3: we still do not know what it will be but at some point I might have to make a serious decision about whether, given the option, I'd go for the allogeneic transplant option (bone marrow from an unrelated donor), which has better chance of cure but higher risks than the autologous transplant or longer term chemotherapy options.

Wednesday I was in a complete daze: I barely slept at all on Tuesday night, perhaps due to being excited/nervous/worried about being let out the next day. I had strange pains in my knees, and then was worried that would stop me from going home, and all in all I just couldn't drop off. As a result, I was so sleepy on Wednesday that I almost remember it as though it were a dream - Harriet had half-packed my room, and doctors and nurses kept drifting in and out with added info etc, and the usual routines were confused by the fact I was leaving, though I didn't know when. I was still in a daze when I left the room and went home: but it was lovely to put clothes on, breathe in fresh air, wander down (propped up a bit as my legs are pretty hopeless after five weeks mostly in bed) to the car and then come home. Surreal when you haven't really slept, though...

Thursday I was on better form, having slept brilliantly on Wednesday night: perhaps too much, as last night my dad did find me making toast at 2:45am! I was a bit hungry, and think I had a coffee a bit later than I should have done last night, and I was getting excited thinking about what to get certain people for Christmas (had a couple of flashes of inspiration: hurrah!).

Today I was very sleepy, perhaps as a result of that, and had a funny dozing couple of hours after breakfast, where I was having strange dreams, but was aware I was dreaming, and still in touch with the awake world. My steroids are being steadily reduced, and I guess they're not keeping me awake so much (though my appetite's still on good form!), hence I was able to half-sleep during the day. I didn't really get going today until about 4pm, therefore, and haven't been very energetic at all. But I'm feeling ok otherwise!

Supper time - must go. Lamb chops: yum!

Bacon

Mmm, bacon.






Bacon bacon bacon.

God

[I wrote this back on Monday] Some of you may have wondered at the lack of any mention on my blog of my religious faith, and this is a lack I have been well aware of. There are a number of reasons why I haven’t brought up religion at all, and I’ll probably explain some of them before going on to a very long exploration of how my faith fits into how I’ve been dealing with things, and how it has been a support. This will probably not be until I’m at home (hopefully soon!) and have a little more chance to really concentrate on getting my thoughts in order, but I wanted to just let you know it is something I’ll be talking about soon. For those who have been praying for me: thank you. For those who haven’t because they don’t believe, rest assured your support is no less appreciated.

Republished without permission: grin…

I had to share this message with you all: I hope the author doesn’t mind me passing it on in the hope it’ll make you grin as much as it did me! Author, I salute you.

“I should start by saying that I've found out how to make George feel better- Much better. Listen carefully. Back in the days when I used to be a pirate, I had a bit of trouble with Lymphocytes and Myeloids. Well, to be perfectly honest, it wasn't really them, but their little immature brats, which we called "Blasted Lymphoblasts". They used to get in every part of our Pirate Ship, the mighty "Argh Peterty", and reproduce like buggers- quite out of control. They got in our way, the bloody blasted blithering bloated blasts, and quite literally prevented our entire ship from functioning properly at all. For months, there were no attacks, no looting (therefore no booty), no comely buxom dames, and no merriment dancing around the ships mast, as was usually customary. Our diet also suffered, and we became weak with the scurvey for lack of vitamins from fresh provisions. So you can imagine we were a bit out of sorts for quite a while there.

Then, over a few whiskeys in the jar, I came up with the master plan that would rid us of the "Blasted Lymphoblasts" forever, and get our ship back on track. It seemed the main problem was a massive overcrowding of Blasts, severely inhibiting any other activity, which was necessary for the normal running of our ship. So- "Get the Blasts of ship", I says to meself. It was simple. My master plan was like this... I called a meeting of all Lymphoblasts, on shore. Then as you can imagine, it wasn't too difficult then (once they were ashore at their "meeting") to sail off into the sunset.

However, as we were so weak with the scurvey, we could barely lift anchor. Anyway, by this time, word had gotten around of our predicament (and our secret plan to rid our ship of blasts). So it was an amazing sight and inspiration to see 100's of small little dingys rowing out to our aid. You may not believe this, but its true. They each attached a rope to the bow of our massive 15th century oak panelled galleon, and rowed their little hearts out, and eventually to our astonishment we were moving freely, slowly sailing further and further away from the hoaxed Blast meeting on the shore. It didn't take long before we sailed out clear of the heads and we were on our way again, all of us waving our heartfelt thanks to little folk in row boats, which by then had gathered in the hundreds. We knew we couldn't have done it without them!

Wow, what a story. Sure does take me back to those pirate days. So, what I've done to help cure George is this...shhh....come closer, I don't want the Blasts to hear...what I've done is this. I've arranged another hoax "meeting" for the Blasted Lymphoblasts and Lymphocytes (cos they're as bad as the others) in a small town in Falsenameshire in the north of England, for Sunday the 27th November. shhh, not a word OK.

Oh yeah, and I'm pushing off from Yokohama, in my little dinghy as soon as I send this George.”

Home... sweet, sweet home

I can't tell you how lovely it is to be home.

Mmmm, mmm mmmmmm. Am loving the food (oh, how I'm loving the food), the bed, the not-being-woken-up-at-2am-and-6am, the quietness, the lack of jabs, the comfort, the family time, the SO much else besides.

Oh, and I'm on the internet! I shall post a lot more soon, as my wonderful father has just set up wireless broadband chez nous, so I am now able to get online whenever and wherever I like! Hurrah! As I can type stuff and not worry about there being a delay in getting it posted, I expect I'll be putting up quite a lot...

I've also seen this blog for the first time since getting ill, and look forward to re-reading everyone's comments: really thank you again. And do keep commenting, particularly as I'll be receiving the comments more regularly now!

The last post (The Escape Plan) was actually written by my father, in case you were confused by the different literary style, but he made lots of excellent points, such as the fact that I am still very tired and it's lovely to have a bit of quiet at the moment, so I do echo his request that I not be bombarded by phone calls etc. For that reason, commenting on here, or perhaps emailing, is best, though please don't expect personal replies, much as I'd love to reply individually to everything everyone has written.

Plan now is to enjoy these few days at home, avoid bugs entirely (am still neutropaenic) and go to St George's on Monday to see whether I'm ready for the next phase. That depends on whether my blood count is high enough (my white blood cell count needs to be 3), and I won't know whether it is or not until then. The doctors seemed inclined to think it may well be, but the nurses seemed doubtful it would be there by then, so I really don't know: we'll just have to see, and make the most of the time I do have out!

Right, finding it harder to find the right words, so I'll sign off for now. A dopo!

The Escape Plan!!

Well, it looks like I will manage to get a short break at home at last. Breakout is planned for early tomorrow afternoon (Wednesday 7 Dec) when Dad will pick up Harriet and me and drive us home - cannot wait!! So DO NOT ring my room after midday, or you may get a surprised new resident! While not wishing to appear churlish, I hope that you will understand that this will be a chance to relax with family and get away from the routine of hospital. Much as I enjoy all your calls and visits, I would like to take a breather now and so would ask you not to ring home or my mobile unless you really must!  I will probably be able to spend some time uploading to my blog and catching up on emails - please don't bombard me with lots of new ones or I shall never get my rest!! But thank you all for your contact and support which have helped me get through this first phase. I'll be back at St G's on Monday 12 December and if my white cells have recovered enough, they will start the next treatment. Next update from HOME!

Day 29...

Post: ...29! Hurrah! Have had my last asparaginase, and my bone marrow test, so that's nice. One phase done! More later...

Moonface

I have a moonface! Perhaps as a result of the steroids and eating funnily, my face has become round like the moon. What fun!
P.S. I hope that like the spongmonkeys you like the moon.. [http://www.rathergood.com/moon_song/]

Day 26

Well, it's been a bit of time since I wrote something myself to go up here - at least, I think it is..... I'm feeling a lot more weary now, so my brain isn't on top form! But anyway, a quick update on the past few days, which have been pretty full in terms of chemo: today is the first day in 6 that I haven't had any. Sunday, Tuesday and Thursday were the intramuscular (as the song goes "Asparaginase, aspariganase, Gets jabbed in my buttocks/ Every two days" - trust me, it's catchy), which are never ENORMOUS fun, but not too bad really. The last intravenous was on Monday, and it was fine (though fingers are definitely still tingly), and on Wednesday I had the intrathecal [lumbar puncture], which is a lot worse to think about than to have done! Pain was minimal, but lying on my side knowing what the doctor was doing was odd..... But really, it was fine: it's much harder for the doctor, who actually has to do the work [and had a number of spectators!]. But that's the case for all the treatment: my part is easy! I just get it done......

So now just two intramuscular jabs left and this course will be over.... Doesn't time fly when you are having fun? Monday I'll have another bone marrow test (though this time with sedation: hurrah!), and will have to wait on those results before going home, perhaps on Wednesday...... All depends, but that's the current hope.

Will sign off now to send this with my darling father to hopefully go up tonight. Continued thanks to everyone! Will post again very soon. [hopefully from home, Dad]

[By Dad - George is definitely wearier - if you are visiting, be happy just to be there and accept that he may not wish to talk (or listen) a lot. He still appreciates you visiting. Plan for home is to let him build up his strength again at his own pace plus a bit! Good food, rest and TLC. He will probably not want too many visitors during that period.]

Bone marrow testing

George has written about this - here is the update.  Basically the cost, complexity and length of time to get results of the test means that they are not willing to test people (apart from siblings) just to see if they match George.  You can get onto the registers though - they prefer people between the ages of 18 and 40/44 when you first register - all it requires is a simple blood test to register.  Details can be found at:

http://www.blood.co.uk/pages/marrow_info.html or ring 0845 7 711 711

http://www.anthonynolan.org.uk or ring 020 7284 1234

By Monday 28 Nov they had found 7 possible matches internationally.

It's good to talk, as Bob Hoskins was telling me a few years back...

[this, too, was written a few days ago! Comments still much appreciated]

I love comments: thank you so so much to all the lovely ones people have left so far. I have been reading them regularly, and again wish I could reply to them individually. Rest assured I appreciate each and every one massively.

So keep posting comments! I’ve no idea how many people visit the blog, and am not so vain as to want to keep a tally, but it makes it all the more worthwhile to know I’m managing to communicate to people who care. Obviously I don’t mean whenever you check the blog everyone should post a comment to say ‘Hi George, I woz ere and have read this post’, but don’t hesitate if you want to reply.

What'’s more, don’t feel you need to comment directly to me! I’m quite keen that people use the comments system to add their own thoughts/ideas/news: perhaps if you’ve visited me and have strong views on the pattern of boxer shorts I was wearing (it’s too warm in here even for a sarong at the moment), the world ought to know. I’m keen partly because I worry about the aesthetics of my underwear, but also because that way the blog will be updated not just when I manage to foist my witterings on a kindly visitor with internet access, and the updates will not just be by me. Feel free to disagree with anything I write, too, or question my dodgy philosophical logic. Or add your own take. Or write nonsense (I’m often quite good at that, too). Or correct my Inglish, though I see that already needs no encouragement…

A blog is like a conversation: so much more interesting when it involves more than one person talking; and as I’ve stated many times, I’ve really realised how very important to me my friends and family are. Your support is vital to me, and I consequently value your opinions massively. So please do share them. Oh, and do post comments to each other, if you want. This blog is at least as much yours as mine, and I’d love my long-winded prose to be brightened up by your own additions.

<sits back and waits for the comments to flood in, while glancing nervously at the clock as they fail to do so, and simultaneously worrying that actually this whole idea of encouraging people to post more comments is terribly egotistical and demanding…*>

*It really does mean enough to me already that you’re here. Thank you.

Bone Marrow Testing (written on Sunday)

I'’ve been meaning to talk to a doctor about the bone marrow register, as I know some of you have been wondering about getting yourselves tested in case you might be a match with me. I haven’t had a chance yet to query with the doctor, but I’ll give you my understanding of it anyway to tie you over until I can check. The probability of any individual (apart from my siblings) being a match with me is minuscule. It isn’t like blood where there’s a limited number of types. There might be someone out there who is a match, and they are searching the international donor registry to see whether anyone on it is. I am touched, and grateful to anyone who does want to see if they’re a match for me, but because the chances are so tiny that you will be, I don’t want you to go and get tested simply on my behalf: as it is I am very doubtful that you could get tested just for me. The way I assume it, the search can only be done through the registry – I’m sure the chances of an individual being a match being so small would make it impossible to do it any other way. However, I am very eager that everyone I know gets put on the register, because it might help someone! In an ideal world, the entire population of the earth would be on the register, because that way no matches would be missed out. It’s very unlikely you personally can help my treatment, but you might be able to help someone, and that’s why you should do it, even if my illness is the inspiration. If I knew that one of you registered, came up as a match for someone somewhere with leukaemia, and helped them, that would make me enormously happy. So yes yes yes please do get yourselves on the bone marrow register: not because it’s likely to help me (though if it only takes 6 degrees of separation to get the entire world registered, let’s try!), but because it might help someone. Incidentally, the doctor said they have far more urgent need for more blood donors, so if you aren’t one, please consider that as higher priority. I think the Anthony Nolan Trust is the main organisation in Britain for the bone marrow register: perhaps somebody else could post details of how to get in touch with them?

The other important thing is to remember that a bone marrow transplant is only one of the options for the third phase of treatment, and not proven to necessarily be the best option anyway, so if they don’t find a match on the register, it doesn’t mean my treatment’s in jeopardy! Yes, a match would be great, but it’s definitely not the be-all and end-all. At all. For my ALL treatment. Y'’all. All right.

As I say, I’ll check with a doctor that I’ve got it right: I’m fairly certain the only way to potentially be discovered as a match for me (and of course, though the possibility is minuscule, it IS still a possibility) or for anyone is to get yourself put on the bone marrow register, and I urge everyone everywhere to do so, as it might give someone somewhere a better chance of a cure. And I’m a big supporter of that. To get on the register might just be a simple blood test, though again I expect you lot with your internet access will be able to find out more quickly than I can…

Me vs the chemo (written on Sunday)

 

Message: [note: I wrote this a few days ago and haven’t checked it since, so might give a bit more of a  update soon]

 

Having given lots of information on ALL and my treatment, I’m aware that I haven’t really written much about how it’s actually going, or how I’m reacting to it. So here’s a list of the main effects I’ve encountered…

 

Weariness

This is definitely the most noticeable thing: I’m a lot more weary than I was and don’t have much energy. The first couple of weeks this wasn’t so much the case – though I was sometimes quite tired by evening, part of that I think was down to not quite getting as much sleep as I’d have preferred, and generally during the day I didn’t feel my energy levels were much down on normal. This past week, however, I’ve felt pretty tired most of the time, meaning I’ve been happy to just lie on my bed with my eyes shut, rather than picking up a book or putting on a DVD, for example. The weariness comes from the chemo and steroids knocking out so much in my blood, and it is no surprise that it’s been cumulative as I’ve had more treatment: I will probably be even more tired by the end of this phase. In terms of sleep, I’ve generally been sleeping very well at night (though my brain wouldn’t shut up and let me drop off last night), but am unable to sleep during the day because of the steroids, but the weariness isn’t so much a sleepiness as a lack of energy. Apologies if my conversation sometimes lacks!

 

Sore and icky mouth

My mouth is a bit sore; I think this is because it hasn’t so much ability to keep itself clean and tidy. I use a mouthwash four times a day, which not only helps, but is necessary to ensure my mouth doesn’t become a bug haven. Bugs, of course, are currently pretty high on my dangerous enemies list (though, interestingly, a few days ago the doctors told me I was only just neutropenic – I’d been expecting to be very neutropenic by now). Everything tastes a bit ickier than usual, too, and that’s not just because the hospital food is icky anyway. Eating isn’t really much of a joy, therefore: I was hoping the change to my taste buds would mean I wouldn’t even notice how bad the hospital food was, but sadly it just makes it worse. Ho-hum!

 

Peripheral neuropathy

I’ve mentioned this before, but guess I should be systematic. It’s the pins and needles at the end of my fingers and thumbs, and hasn’t spread, though hasn’t decreased either. Changing one chemotherapy from vincristine to vinblastine hopefully means it’ll not get any worse and eventually go away, but it’s not too annoying anyway. Just means my digits are tingly, which feels a bit funny, particular when typing etc. It’s only if it affects my ability to move/use my hands/fingers that they start to worry, and that’s definitely not the case.

 

Philosophy

They didn’t mention this side-effect.

 

Pain?

Generally, day-to-day pain is minimal: I’m not really in physical discomfort at all. The asparaginase jab hurts when it goes in (I think because fluid is injected where it’s not really expected, and chemotherapy is pretty hardcore stuff) and for a bit of time afterwards, but then it’s over with and my buttocks soon recover. The other chemotherapy makes me feel perhaps a little woozy a few hours after it’s gone in, and has been known to give me a bit of a headache, but again that’s minimal. If we want to talk in relative terms, compared to the pain I was in a couple of days before coming into hospital, I feel great! Compared to a general feeling of wellbeing, maybe not so great, but all in all it really could be a lot worse.

 

Mild unpleasantnesses

I have a bit of a headache sometimes, and feel a bit woozy sometimes, and occasionally I’m a bit sore in the chest area where my beautiful blue tube is probably confusing my insides. My hands are pretty permanenently dried out, despite my best New Man efforts to smear them in Nivea at every opportunity. Oh, and a not-so-mild unpleasantness: hospital potatoes. Aaaaagggghhh! I look forward to hospital potatoes even less than I look forward to my asparaginase injections. I’ve not felt nauseous at all from the chemo, but the sight, smell or thought of hospital potatoes almost makes me throw up on the spot. Gah.

 

So there we go: that’s pretty much how I’m getting on up against the chemo and the steroids. There are plenty of side-effects (some really nasty and even life-threatening) that I’ve been lucky enough to avoid, partly due to the wonders of drugs. I have anti-nausea drugs, drugs to make sure my gut is working, painkillers, anti-pneumonia drugs, drugs to make sure my kidneys are working, and so many more that I can’t remember at the moment. Clever stuff, though interesting to think of the chain. I have leukaemia -> I get chemo and steroids to knock it out -> they also knock out good stuff -> I have drugs to keep the good stuff working -> the drugs probably have their own little side-effects -> where does it end? I’m in awe of Medicine.

 

Medically speaking, the doctors have always expressed approval at how I’m doing: they even used the words “sailing through”, which are nice words, though I never fail to tag on the caveat “so far” before accepting them. There’s plenty that could have gone wrong by now and hasn’t, so that’s very pleasing, and they’re happy that the chemo and steroids are doing just what they should. I think, though, that we just won’t know how successful the treatment is until it’s all done: this is the carpet bombing stage and we won’t be able to see until the smoke’s cleared whether there are any buildings still standing.