Woo-yippididoo-la-la!

Je suis chez moi.

Hurrah! After a tough second half of Phase 2 ('twas pretty horrid), then that blasted infection (even horrider: the Monday it kicked in was probably the most unpleasant day I've had), an even stronger aversion to hospital food, much bed-swapping, nasty side-effects from the antibiotics and a great difficulty in sleeping well (the antibiotics often didn't finish til 1am, and until then needed to be replaced and flushed a couple of times at least; observations still happened at 2am and 6am; then the new cleaner had a propensity to switch on the main light at 8am so she could replace the bin liner, and would then leave it on; I often needed to dash to the bathroom several times in the night; my room was noisier - though this was nice in many ways as I felt much less isolated), it is brilliant to be out. It was all a bit rough, though fortunately not quite so rough as to dampen a stout young fellow's spirits too much.

It's good to be able to blog again too - sorry I've failed to do so for a while but thank you so much Daddy for keeping everyone updated. My energy levels were very low and the thought of picking up my computer, turning it on, loading it up and typing wore me out in itself... I managed to get out of the room and get a bit more exercise towards the end of this stay (many thanks to Gobby for forcing me to get out of bed when I was terrified it would hurt), so am feeling stronger than I did when I got home last time. My neutrophils are pretty high - around 3 I think (apparently normal is between 4 and 11, not 1.8 as I formerly thought) - so bugs aren't quite such a danger as last time; my white cell count is up to 4, well above the 3 necessary for the next stage; I can't remember what my haemoglobin level is, but think and assume it's ok; my platelets are still very down, though, somewhere in the 20s, and I need to be up to 100 before the next lot of chemo.

I'll explain over the next couple of days about the next stage; I'll tell you my autograft vs chemo dilemma; I'll ask Adam whether I can post a link to some cool photos on his site of me and some of my beautiful friends; and I'll try to make up for my recent lack of posts...

I hope everyone's well - thank you again so much for comments, letters, cards etc, which really do help so much to keep life looking cheerful!

Urgent

Please do not use George's hospital telephone number with immediate notice as George is being moved to a different room. His specialist room is required for a bone marrow transplant patient who probably does not want you all calling him and asking for George!

Ease up cowboy..

It's Fred here, and just a quick update on Georgey. Since having this infection he's been up and down, but never really feeling great. Doing anything tires him out and he can be short of breath sometimes as well, due to the infection affecting his chest. Because of this could people please refrain from calling him over the next couple of days to give him a chance to rest and because his communication skills aren't too great at the moment over the phone. He does however read all the comments on this blog daily, so if you are desperate to tell him how "the other night when you got wasted was" or how "essays are mean" or just want to say hi, then pop a comment on the end of this.. He also apologises for the lack of updates at the moment, but I'm sure you can understand...

Urghhh...

...Hi everyone, Jo and Rachael here. George has asked us to let you know that he is still in the green room but that he is currently looking a similar colour to the walls as a bug has invaded via his intravenous line and so he is feeling a bit ropey. The bug is giving him flu-like symptoms and making him feel queesy so he is not really well enough for visitors at the moment. And if you call him and he gives you short shift, please don't take it personally! However the doctors know the bug's name(!) and are giving him the right antibiotics to kill it off. We will keep you posted!
Lots and lots of love, Jo and Rach x x

Oh bug-ger…

...It seems I have picked up a bug. Unfortunatley, what with having no neutrophils, I haven’t got much to fight it. However, the nice doctors with their nice antibiotics are fighting the good fight for me. Hopefully, with their help, I can shake it off in time for when I’m allowed to go home! Otherwise I think I’ll go crazy, perhaps.

The National Inter-Hospitals Belly Championships

George has asked me to post a bit of info regarding the National Inter-Hospitals Belly Championships. He is delighted to be able to inform you that he has been chosen to represent St.George’s in the annual finals. In preparation for this task the lovely nurses have been giving George injections of growth hormones into his abdomen. A happy side-effect of these drugs is that they tend to encourage proliferation of his neutrophils which will, we hope, help the half-neutrophil target to be reached sooner! Oh, and by the way that elusive half-neutrophil actually refers to 0.5 x 10 9 neutrophils, which means there are only 500,000,000 to go. Let’s start ticking them off! Currently we’re still on 0…

Rachael

Oh, the tedium...

Obviously, the exciting news is that Phase 2 is over. Done. Completed. No more. Etc. Hurrah! The less exciting news, however, is that I need to get my neutrophils up to 0.5 before they'll let me out, which might happen next week, perhaps. "Half a neutrophil?" I hear you cry, that can't be hard. Well, so you'd think. I do have good prior form on getting my counts up, but we shall see... Feeling weary and at the moment just want to get out, especially as I have no chemotherapy lined up. I will update you on future plans soon.

Eloquence

I had the funniest ten minutes the other day... My very ginger friend Charlie was visiting, and we were discussing, erm, potassium and the Periodic Table - bear with me! It's because I've been getting potassium, which fizzes happily in water, and I find it terribly exciting that potassium has the chemical symbol K: imagine! K: potassium! That's just crazy talk. But anyway, not nearly as crazy as what happened next... I completely lost the ability to say complicated words for about ten minutes. I utterly forgot the words 'potassium' and 'periodic', for example, and even if Charlie repeated them to me several times, I just couldn't say them properly. Example:
C: Potassium.
G: Erm... forgotten it.
C: Potassium potassium potassium.
G: Palitiuc... Plefanioop... Oh.
It was just bizarre. I also failed to remember the names of some good friends of mine, and occasionally got completely the wrong word halfway through a sentence. Then, ten minutes after it had started, it stopped... I think it may have been because I'd thrown up my breakfast and not had any lunch, and hadn't had any supper by then, but I'd had a decent whack of drugs in that time... Probably best not to repeat the experiment, then.

White Knights Ball

Tonight (Friday, 6th January) is the enormous fundraising ball for the Order of Malta Volunteers, so many of my friends, and some of my family, and even a couple of people I don't know, will be converging on Grosvenor House for an evening of fun, jollity and hopefully lots of charity giving. It's always enormous fun and a great evening to catch up with OMV friends, and I was meant to be helping out in my own humble way by singing a bit of barbershop with The Quiffs, but sadly of course can't make it - I nevertheless hope that everybody has a wonderful evening (and I have no doubt they will after the brilliant job the organisers have done). I'm having an alternative party in my room which will probably be far more interesting, though - not wanting to make you jealous or anything, of course.

UPDATE: Now it's Saturday evening, and I've had lots of visitors letting me know that the WKB was absolutely brilliant, so that's great, particularly as it seems to have raised an enormous amount of money for the OMV. So hurrah! Oh, and thank you to everyone who looked after my siblings, who were apparently on excellent form, too.

Phase 3

The transplant consultant came in today (my consultant is away at the moment, so he was doing filling in for his patients), and explained that as I'm almost at the end of this phase of treatment, he reckons it would be best to wait until I get through it, and then we can sit down and chat about possibilities / risks / procedures when I'm up and about and dressed and have a fully-working brain. So that's the plan for now: get through this lot, then find out all the facts and decide what to do next. In case you've forgotten (keep up, children!) today, Friday, is Day 24 and I finish on Wednesday, Day 29.

When the little things are nasty...

...I can fall back on the big things! For example, things have still been pretty grotty quite a lot of the time, as my back is still giving me grief (particularly in the morning and just before I go to bed) and I've thrown up again once or twice, as well as feeling very weary and generally not on best form. So this morning my back was really hurting and I was worried about whether I'd be able to get up to let the nurses make me back, and about how difficult it might be to eat my breakfast, and then I was brought my morning post, which had some lovely letters from lovely people, and I remembered how lovely they all were and that they care about me. So I was cheered! Oh, and I had proper coffee, too, which is nothing but a joy.

In the meantime, a musical interlude

(To the tune of 'Knees up Mother Brown.')

Needle in the spine,
Needle in the spine,
Intrathecal, intrathecal,
Needle in the spine.

Whew… long and hard days

Well, on Day 15 I promised to expand on just why that day was so long, and at last I’ve got around to it. It started gently enough, with a trip down to chest x-ray (a weekly routine), though I did manage to forget my wallet, so ended up making another trip downstairs straight afterwards to buy the newspaper. Anyway, back in my room I was swiftly plugged into the drip to receive my scheduled chemotherapy: two lots because it was Day 15. It was only once I’d had that that the doctors could order my intrathecal, so as to prevent there being any chance at all of any of the drugs going in the wrong way. The intrathecal had been postponed from Day 14 because it had been a Bank Holiday and thus there weren’t enough doctors around. Anyway, the intrathecal chemo now having been ordered, the nurses took a bit more blood, as one of the samples from the morning hadn’t been as full as needed to be. Easypeasy. In came the anti-fungal and I was plugged into that while I awaited the intrathecal chemo of joy… But alack! My platelets were down! Platelets are good at clotting, so since the doctors were soon going to be stabbing me in the back (in the least sinister way possible), some platelets were ordered in, the anti-fungal was paused and I started getting the nice yellow platelets dripped into my arm. However, a PICC line is somewhat narrow, and the doctors needed to do the intrathecal by 5pm (I think because it’s a complicated procedure, so they like to have the rest of the hospital still working at full capacity in case anything goes wrong), which was looking a bit tight at the speed the platelets were going in. Never fear, they stuck a cannular in my right arm and plugged the second bag into that, so I was getting platelets in both arms. At about 4:45 they finished, so a bit more blood was taken and rushed away to check that my platelets were now sufficient… They were, so the intrathecal could progress, which it did. Unfortunately it is a tricky business, and it can take a while, particularly when your spinal fluid is as difficult to find as it is in my back. It took two doctors and about 40 minutes in total, but we got there in the end and I could lie back for 4 hours and finish off the anti-fungal drip. When that eventually ran out, I bullied the nurse into taking my new cannular out (she wanted to leave it until the morning in case it was needed again for more platelets, for example; I argued that it was hurting, and that platelets could go in my PICC line if they were really necessary again, provided I didn’t have a deadline), and my day was finally over.

Days 16 and 17 weren’t much fun either; the former due to unpleasant bowel actions and general weariness; the latter for a number of reasons. First I woke up at 4am with my back in agony: I had the doctor in, who poked around but didn’t find any clues as to what was wrong; I was carted down to x-ray for another chest scan; I had a jab in my stomach – ouch – in case it was a PE; had some painkillers and eventually got back to sleep. Then when I woke up feeling grotty, I had my breakfast, only to rush to the bathroom to break my throwing-up duck (first time since my diagnosis!). At that point a porter appeared to take me to the nuclear scanning place (sounds cool, and the machines definitely looked cool), but I had to make him detour halfway there so I could throw up again – I was very shivery and had an awful headache too. I made it to the nuke scanner, where I sat feeling absolutely terrible for a few minutes before they got me in for the scan: remarkably as soon as I was lying down I felt much better. They did the scans, which were mostly painless (only one jab, into a vein in the hand), and sent me back again. I was sat in the general scanning waiting room, clearly in a lot of discomfort (as the headache/nausea/fever came back as soon as I was back in the chair and had my mask back on again, being neutropaenic by now), and fortunately one of the staff noticed and managed to grab a porter, who whizzed me back to the Ruth Myles Unit. I reached my room just in time to leap into the bathroom and get rid of the last of my breakfast… Then I staggered out and curled up on my bed, still feeling awful but the nausea relieved a bit once I got to lie down again. I was a bit teary and feeling grotty, so the nurse comforted me a bit and got the doctors to come and see me first (they were about to start their ward rounds). Now the headache and fever were ok, but the back pain had returned with a vengeance, so they asked lots of questions and poked and prodded to try to find the problem. They ruled out a few things, and made a couple of changes to my drug regimen, and then left me to sleep. That I did on and off for the rest of the day, with my back sometimes fine and sometimes agony. All in all it was a horrible day: Day 15 was just long, whereas Day 17 was tough.

The past couple of days (18 and 19) have been much better relatively. My back has sometimes been pretty painful again, but now I have painkillers prescribed for when it has been, and they seem to help. Strangely, I have also at certain times got a real headache when I’m standing or sitting, but I get around that by, erm, not standing or sitting too much. My appetite’s definitely been down, but my snacking seems to have kept my weight fairly stable nevertheless. Unfortunately even lovely ready meals haven’t been much to my liking, so I think it’s not just the hospital’s fault.

The chemo certainly seems to have kicked in, then, what with my neutrophils dropping so dramatically (they were 1.9, ie normal, on Christmas Eve, and are now 0.1, ie negligible, and have been thereabouts for a few days now), me being so weary since Christmas, and my body working at less than 100%. Apologies if I’ve turned you away as a guest recently: I’m sure you appreciate that sometimes I’m just not up to it! However, I was quite pleased to be on top banter form today, so don’t hesitate to ring if you do want to pop in. Oh, and my spirits haven’t drooped, except perhaps when feeling so awful on so many counts on Friday…

Last night I raised a (small) glass of bubbly at midnight with Gobby, Nelly and Angella to see in the New Year: I do hope it turns out to be a wonderful 2006 for all of you. I also watched Jools Holland, but had to switch off because James Blunt came on.

10 days of Phase 2 to go!