Decorated or what?!?!

Some more photos for all your viewing pleasure.. So here they are..
1+2) These are Georges doors, and as you can see, he is not short of decorations.. Every other part of the room is also covered in cards etc.. He is almost running out of space there are so many things!
3) A roll up piano?!? Who'd have thought it!?!
4) Our lovely sister Harriet, down from Edinburgh.. I'll accept any offers..

Show us yer bone marrow!

I typed a long post about the bone marrow register, but can't get at it until my new laptop power supply arrives (hopefully in the next couple of days). In the meantime it basically says: yes please, get yourselves on the register. It's the only way to be tested for a match with me. They won't do specific individual tests because the chance of a match is very small unless you are my sibling. If you are on the register you may get to help someone else with leukaemia and that would be amazing. Don't worry, to register you just need to have a normal blood test. The first check of the register has found 7 potential matches for me - they need to make further tests but thedoctor is optimistic.

Plan A

I have a clearer idea now of the plan from here. Today's Day 23, and I've got intramuscular chemo today, D25, D27 and D29, and intrathecal chemo (lumbar punctuar)tomorrow. D29 another bone marrow test (ow), then hopefully home for a week to rest and recover. Back in probably the next
Monday (12th December?) for second phase, lasting four weeks, with intravenous and intrathecal each once weekly. Potentially allowed out occasionally!

Fittie...!

This was taken by my elder brother, after George's latest appointment with the hairdresser.. What do you think?

Just briefly...

I typed up plenty of stuff yesterday, but my laptop power supply unit has broken, so I'm not sure when I'll be able to get it posted. In the meantime, I'll try to put some brief pieces up, mostly by dictation.

Hair today...

...gone tomorrow? There are plenty of potential side-effects to my treatment (some of which I’ve had, some not), but the most noticeable one to other people is that my hair may well fall out, or at least thin. In readiness for the possibility, I had my hair clipped short the other day: this way at least it won’t come out in clumps and won’t be such a big change. I’m actually quite excited by the possibility (which is quite high), as I’ve always wondered what it would be like to be bald, and no doubt it would be a good conversation piece. Indeed, I’ve got myself so ready for the idea I’m almost willing it to fall out now – it’s almost frustrating waiting for it to do so and not knowing for sure that it will.

However, a word of warning: it will still probably be a bit of a shock, to me and to others, as it will be the first really obvious physical sign that I am actually unwell (though the direct cause is the treatment, not the disease, and it is just a side-effect). Visitors have commented (and rightly, I think) on the fact that I actually look better than I did about a month ago – the danger
is to subconsciously translate that into thinking that I’m ok really. Which of course I’m not, even if I’m not feeling too bad and I’m not looking tooooo unwell. Being bald will show that something’s different and so will prevent any self-denial, which is something I don’t recommend anyway. So my hair is very short now and as a result I do look a bit more like a cancer patient, but that’s not necessarily a bad thing, though I thought I’d warn you as it might be a not-entirely-pleasant surprise otherwise. I’ll try to get a photo up if and when it does fall out.

To return to the joys of baldness, though: what fun! I’d qualify for a free NHS wig, which I’ll probably get since it’s free and could be amusing, though in general I’d definitely far rather just be bald. I’ve never been a big fan of my hair anyway, and am independently-spirited enough to be happy to look as I am rather than try to ‘look normal’. What’s normal, anyway? I look forward to exploring hats, though, as I’ve always wanted to anyway and otherwise my head will get cold. Rachael, having cut my hair, balanced that out by giving me an absolutely beautiful sky blue beanie she knitted: it’s a little too warm in my room for it at the moment but I can’t wait to show it to the world! (That is my one concession to individual thank-yous: I wish I could individually name and thank everybody who has given me anything, sent anything, done anything, but I hope you’ll all understand that once I start, I’d never want to stop. I am truly so very grateful to all of you individually and sincerely, as I am toeveryone who cares enough to be reading this.)

I’ll keep you updated on the hair situation.

A few thoughts

1. If it can happen to anyone, it can happen to you.
2. The human body is amazing, but frail.
3. Being glum makes you less happy.
4. If something isn’t dealt out on merit, it can’t be unfair.
5. The happiest of people don’t necessarily get the best of everything, they just make the most of everything.
6. People are so important, and so special.
7. Being sick and not being sick are not really different at all. We all have obstacles to overcome every day, we all take delight in small daily joys, and we all gain strength from the bigger blessings such as friends.
8. Every cloud has a silver lining; some have many; and anyway, we can learn plenty from clouds.
9. There’s not much point in crossing bridges before you can be sure they exist. It’s sometimes okay to wonder about how you might cross them if they do, but there’s no point in worrying too much about them.
10. Ho-hum.

Sometimes...

...It seems a pretty enormous thing, this getting leukemia buisness. But only sometimes. Generally I take each day as it comes, and the philosophies broadly stated in my 'A Few Thoughts' post help it seem almost everyday or mundane. Just at this moment, though, it almost seems absurd in its magnitude and effect on my little life. Leukemia, eh? Who'd have thought it?

[I wrote this in the middle of friday night when my brain was too alert for me to get to sleep. But don't worry, I would have rung someone if I wanted a chat!]

Another picture for your pleasure

Asparagus: Not related...

Le supercool

If you’ve not seen the short ‘Je t’aime John Wayne’ (it appeared in 2000), try and make sure you do one day. If you have seen it, you don’t need me to tell you anything. It might be available on the TCM website (www.tcmonline.co.uk) if you have a fast computer and connection. I saw it today (it was an extra on a free DVD that came with a newspaper) and it’s absolutely brilliant. How can anyone be sad when there are such joys in the world?

Treatment

Having told you all about ALL, I’d better explain a bit more about the treatment. Again I’ll probably borrow heavily from my handbook, though as everyone’s treatment is individual I’ll be giving a lot more information that websites etc won’t be clear about.

Treatment
The aim of treatment for ALL is to destroy the leukaemia cells and allow the bone marrow to work normally again. Chemotherapy is the first and main form of treatment given. The chemotherapy is carried in the bloodstream to nearly all parts of the body, but does not reach the brain and spinal cord, and in men it does not reach the testes. For this reason, additional treatment may be needed where chemotherapy is given into the fluid around the brain and spinal cord. This is sometimes combined with radiotherapy to the brain. Men may be given radiotherapy to the testes.

Chemotherapy can get rid of the leukaemia cells in up to 8 out of 10 people with ALL [statistics shmatistics… will post about them about some point]. This is known as remission. In some people the ALL will come back (relapse), usually within a few years of the treatment. If ALL does come back, further treatment can be given either with standard-dose chemotherapy or high-dose chemotherapy. This treatment can give a further remission in about 1 in 3 people.

In some people with ALL, certain factors make it more likely to come back after treatment. This is known as being at high risk of relapse. In this situation a bone marrow transplant from a donor may give a better chance of curing the leukaemia than standard-dose chemotherapy and may be recommended as a treatment option [I mention this as the book does, though I haven’t been told I’m at high risk].

Chemotherapy
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy the leukaemia cells. These work by disrupting the production of the leukaemia cells. The drugs circulate all over the body in the bloodstream. As some of these drugs cannot get into the fluid around the brain and spinal cord (cerebrospinal fluid) they need to be injected directly into the fluid through a lumbar puncture. This is done even if leukaemia cells cannot be detected in the cerebrospinal fluid, since research has shown that there will almost always be some leukaemia cells in the cerebrospinal fluid which need to be destroyed..

When chemotherapy is given for ALL [as indeed it is to me] it is divided into three different phases.

1. Induction
This is the initial intensive treatment, aimed at destroying as many leukaemia cells as possible. It usually achieves a remission  of the disease, which means that the leukaemia cells can no longer be seen when a sample of bone marrow is examined under the microscope.

…For me: this is of course the phase I’m on at the moment, and the drugs I’m getting are daunorubicin, vincristine/vinblastine (the former I had the first two times, but now I’m getting the latter because I’ve got a little peripheral neuropathy, ie tingling at the ends of my fingers and thumbs: expected and not worrying, but obviously preferable not to have!) and asparaginase. The daunorubicin and vinblastine I’ve had three times (days 1, 8 and 15), and will have once more, on day 22. They go in intravenously: one is just a syringeful and the other comes in a drip which takes about an hour. As they go in the PICC line and straight into the bloodstream, I don’t even feel them go in. The asparaginase I will feel go in, unfortunately, as it’s injected intramuscularly. I haven’t had any yet, but as it’s Day 17, I’ll now be getting it every other day, starting today, until Day 29. I actually just had the test dose intradermally to make sure I don’t have an allergic reaction to it, and though it stung I don’t seem to have reacted against it, so will be getting the proper injections (it’s strong stuff so half the dose will go in different sides… it’ll probably be a pain (two pains) in the ass, if you’ll forgive my openness). Also part of my treatment for this phase is steroids, which I get every day and started a few days before Day 1: the book says ‘Steroids are drugs which are often given with chemotherapy to help destroy the leukaemia cells. Prednisolone is the most commonly used steroid for ALL’ and is indeed what I’m having. I’ll also get a lumbar puncture on Day 24 (I think). Day 29 (5^th December) marks the end of my Induction phase.

2. Intensification (consolidation)
A second, third or occasionally fourth intensive course of chemotherapy is usually given to increase the chance of a cure.

…I’m not sure yet exactly what this’ll be for me, but it has already been plotted: I think it’ll be more chemotherapy, some radiotherapy and some lumbar punctures. It’s probably best to concentrate on getting through Phase 1 before thinking too much about Phase 2! I do know that I’ll be back in hospital for at least four weeks, from whenever my blood recovers to a certain level after Phase 1 (the doctors have estimated between a week and two weeks).

Continuing therapy (maintenance)
This is a less intensive course of chemotherapy given over a prolonged period, mainly as tablets. It is aimed at killing any remaining leukaaemia cells. Steroids and antiobiotics may also be given.

Instead of standard-dose chemotherapy some people may have high-dose chemotherapy with stem cell rescue or a bone marrow transplant, as part of research trials, at this stage. The high-dose treatment may include radiotherapy to the whole body and high doses of a chemotherapy drug such as etoposide or busulphan.

…At the moment there are three possibilities for this phase: autologous transplant, allogeneic transplant or standard-dose chemotherapy. In short, the first is high-dose treatment and stem cell support, whereby my bone marrow gets knocked out and replaced with my own ‘clean’ stem cells. The second is the same but it gets replaced with someone else’s stem cells or bone marrow. The third is chemo via tablets for a while, (?a couple of years?). While my first two phases are all set and planned, the third is not, as it depends on various factors. If a match is found for my bone marrow (and I’ll post again about that, as I know a few people have wondered about getting tested), then they’ll go for that option. If not, one of the other two options will be randomly chosen, as they don’t actually know which is the best option and I’ve signed up to be part of a trial to find out. Of course, if in the meantime they discover one option is best, or would be best for me, then I’ll get that. I’m not too curious yet about Phase 3, as again I’ve plenty to get through before then anyway!

As Daddy Norton mentioned, none of my siblings is a match, but it is very important to note that that is not a big blow to my treatment: though siblings have a far better chance of being a match than anyone else, that was only one option anyway, and even that’s not disappeared yet, as there’s still a chance there may be a match registered somewhere in the world. As my registrar, Kevin, put it: ‘it’s not good news, but it’s not bad news. Just ho-hum.’ Ho-hum is a great philosophy.

Though I’m concentrating on getting through bits as they come, I am aware that this is going to be a bit of a long haul. If I have a transplant, the book tells me ‘It may take up to a year to recover from high-dose treatment and you will be carefully monitored during this time’, and that’s once I’ve got through the actual treatment itself. The standard-dose option for Phase 3 might take a couple of years. Furthermore, there’s this mention in the ‘What is remission?’ section: ‘However, once you are in remission there may still be a very small number of abnormal lymphoblasts left. To destroy these, your doctor may prescribe maintenance or continuation chemotherapy which may last for several years. These drugs are mainly taken as tablets and you will need to have regular check-ups to monitor their effect.’ Patience is a virtue etc… A more cheerful note to end this post on, though: ‘For many people with acute lymphoblastic leukaemia the remission lasts indefinitely and the person is said to be cured.’

Another novel experience

Over the past few weeks I’ve had a fair few new experiences, but one I’d never considered for my ‘things to be done’ list was ticked off yesterday. I have a weekly chest x-ray, just to make sure everything’s OK in there (particularly as I have a PICC line – basically a long thin blue tube – in one of my veins leading almost as far as my heart), and on Monday a little mark showed up on one side. Naturally the doctors wanted to check out what it might be, and couldn’t be sure whether it was something to worry about or just the shadow of my nipple… So I had to have another x-ray yesterday, this time with, ahem, ‘nipple markers’! That’s as technical as they get, too: the form said ‘chest x-ray with nipple markers’, and the actual markers were pieces of wire bent into triangles and taped to my nipples. I felt like Madonna. I don’t think they do many x-rays with nipple markers, as the x-ray team were as amused as I was (and faintly embarrassed, I think)… I’d love to see the picture! Oh, and the doctor thinks it probably was just a shadow, which of course is good.

Pictorial Interlude

Blastoise: Not related, but probably immature too...

All about ALL

I might get someone to find the exact link to all the info in my ‘understanding acute lymphoblastic leukaemia’ book, because it’s very informative and what I tell you about ALL will mostly be coming straight from there. But in the meantime, I’d better give you a bit of an overview of what’s wrong with me. I will actually type stuff straight from the book, so I’m afraid there might not be many jokes. But thass ok! Plenty of time for jokes later.

What is leukaemia?
Leukaemia is a cancer of the white blood cells. White blood cells are produced by the bone marrow. Bone marrow is a spongy material that fills some of the bones and produces the cells (stem cells) which develop into the three different types of blood cells:
- red blood cells, which carry oxygen to all cells in the body
- white blood cells, which are essential for fighting infection
- platelets, which help the blood to clot and control bleeding
All these cells normally stay inside the bone marrow until they are mature enough to perform their functions properly. They are then released into the bloodstream so that they can circulate around the body.

White blood cells:
The bone marrow produces two main types of white blood cell: lymphocytes and myeloid cells (also known as granulocytes). These cells work together to fight infection. As some myeloid cells and some lymphocytes only live for a few days, the bone marrow is constantly making new cells to replace the old ones in the blood. When they are mature enough to leave the bone marrow, the white blood cells are released into the bloodstream to circulate around the body. Lymphocytes, unlike the myeloid cells, also circulate in the lymphatic sytem.

What is acute lymphoblastic leukaemia? [here’s the badger]
Acute lymphoblastic leukaemia is an overproduction of immature lymphocytes, called lymphoblasts (sometimes referred to as blast cells). Normally, white blood cells grow and divide in an orderly and controlled manner but in leukaemia the process gets out of control and the cells divide too quickly, but do not mature.
These immature cells fills up the bone marrow and prevent it from making blood cells properly. As the leukaemia cells do not mature, they cannot do the work of normal white blood cells, which leads to an increased risk of infection. Because the bone marrow is overcrowded with immature white cells it cannot make the right numbers and quality of red cells and platelets.

Approximately 600 adults are diagnosed with ALL in the UK each year. It occurs more frequently in children (under 15 years of age) than adults. When it occurs in teenagers or adults, ALL is most common between the ages of 15-25 and in people over 75 years of age. It is slightly more common in males than infemales.

What causes acute lymphoblastic leukaemia?
The cause of ALL is largely unknown, but research is going on all the time into possible causes. It is thought that ALL is due to a series of genetic changes in a particular group of immature blood cells. It is not fully understood what causes the genetic changes, but some types of infection may be involved. ALL, like other cancers, is not infectious and cannot be passed on to other people. It is not caused by an inherited faulty gene so other members of your family are unlikely to develop leukaemia.

Symptoms of acute lymphoblastic leukaemia
The main symptoms of ALL are caused by the increased number of ‘blast’ cells in the blood which reduces the number of normal blood cells. The main signs and symptoms are:
- unusual bleeding; caused by a reduction in the number of platelets. This may include bruising, bleeding gums, and frequent nose bleeds [nope]
- feeling very tired, even breathless, at the slightest effort [not really, I think]
- looking pale; this may due to anaemia caused by a lack of red blood cells [ah!]
- aching joints and bones; bones are affected by leukaemia cells [ow]
- feeling generally unwell and run-down; perhaps with a sore throat or sore mouth [I guess so, but no sore throat/mouth]
- having various infections one after the other, caused by a lack of healthy white blood cells [maybe, maybe]
Symptoms of ALL may appear very quickly over a few weeks, and treatment needs to be given as soon as possible. Remember, these symptoms are common to many illnesses other than leukaemia.

Right, that’s an overview of ALL and describes what’s wrong with me better than I could. I’ve cut bits that don’t seem so relevant, but it’ll all be on the web. These websites are recommended by my handbook; I’ve no idea which is best:
www.cancerbacup.org.uk (CancerBACUP, from which my info comes);
www.cancerhelp.org.uk (Cancer Research Campaign);
www.leukaemia-research.org.uk (Leukaemia Research Fund);
www.leukaemiacare.org (Leukaemia Care);
www.nelh.nhs.uk (UK National Electronic Library for Health);
www.nci.nih.gov (National Cancer Institute ' National Institute of Health ' USA); www.intelihealth.com (drug and medicines information).

I’ll post about treatment soon.

Not even omnipotent

When I’m especially weary, my vocabulary is pretty hopeless, and occasionally recently some of you may have had some terribly amusing conversations with me where I’ve either run out of words, or chosen the wrong one. I’m quite happy to blame the chemo (it’s a great excuse for anything…), but I fear it might be contagious. Over the weekend, one dear friend told me that I am the catechist. I’m not quite sure how to take that. Then again, it was the same friend who accused me of being “not even omnipotent”, which, I’m sure you appreciate, wasa real blow to my self-image. Not EVEN omnipotent! Ah well.

Update - Monday 21 November

Actually this is from his father, Andrew, who was with George today. George had his third dose of chemo today and is responding well without discomfort. On Wednesday, they add Asparaginase which is administered every other day by injection. It currently looks as if George will leave St George's on 5 December for a spell at home of around 1-2 weeks - he would like to spend that time resting with family - before returning to St G's where he will almost certainly be for Christmas! It transpires that none of his siblings have compatible bone marrow (though they did confirm they ARE siblings!!) - so any of you who would like to offer yourselves for test (it is only a small blood test) would be welcome to do so. I would advise that there is only a small chance of matching (even within the rest of his family) - but then you might make someone else's day! Look at http://www.anthonynolan.org.uk/index.php?location=3.1.2 if you are interested. Incidentally, it is not the end of the world if no match is found - there are other treatments he can have.

How did I end up here?

One story I’ve been asked a few times is how I found out I had leukaemia, so this is probably a good place to set it down for those who are still wondering. Medically, I don’t know how much is relevant, because the causes of leukaemia are still pretty much unknown and therefore things I mention may have had nothing to do with it, but anyway.

 

Some people may have known that back in May/June (starting just before my Finals), I had a few isolated incidents of leg pain that kept me awake for one night but then went away again. I can’t remember whether it happened with my arm, too, once, but it was pretty painful each time before vanishing completely. I think it happened about three times, and the third time I ended up ringing a doctor on call (having previously been told to take ibuprofen and paracetamol by NHS Direct, which just about let me get to sleep eventually each time), who suggested it may have been the sciatic nerves and recommended seeing my GP. Unfortunately, due to my sleep patterns being very disturbed, and what with term ending and packing up out of Oxford, I didn’t manage to get to the college doctor or her affiliated practice, but again the pain had disappeared anyway, so I hoped that was the end of it. Looking back, that could well have been a precursor to the leukaemia, as bones can hurt due to the bone marrow being filled up with cancerous cells. I don’t think it can have been very developed, though, because (warning: scary fact approaching…) ALL is usually fatal if not treated within a few weeks.

 

Moving to London at the beginning of July meant registering with a new GP, but at first I was living temporarily in Denmark Hill, so didn’t want to go through the whole kerfuffle just to move on again a couple of months later and have to start again. I started work and everything seemed ok, though when I went to Lourdes a couple of people did think I looked tired (before the week started – by the end EVERYONE looks and is exhausted). I came back and foolishly went straight back to work, so didn’t catch up on sleep until a week afterwards or so (exactly one week after getting back, I slept until 5pm – mmmmmmmmmm). Later in August, though, I did get a pretty bad persistent and specific headache (ie it hurt in a very specific part of my head) and took a few days off work to try to rest it off. That, again, may have been something… I went to an NHS drop-in centre in Soho, where they weren’t too worried about it, suggested all sorts of possibilities and recommended particular drugs.

 

It seemed to clear up (though was noticeable again occasionally), but then my left shoulder started hurting a lot. Back to the drop-in centre I saw a GP (who happens to also be GP at the Chelsea Practice, where I am now registered), who decided it was an inflammation of the deltoid muscle and prescribed Sodium Diclofenac (an anti-inflammatory) and some painkillers if necessary. They were necessary, and it took a good couple of weeks for the shoulder to stop being agony. This was September; all these niggles were obviously frustrating, but didn’t in themselves seem so serious as to point to anything bigger, though I was aware I needed to get a proper check-up. Remember, too, that this story is ignoring the other facts of my life, so these minor ailments weren’t at the forefront of my mind as they at the forefront of this tale; I was busy trying to get on with my new London life...

 

By now I had moved to Chelsea and set about registering with my local GP, a process that took a bit of time (needing proof of address, which is difficult when you’ve just started lodging somewhere; waiting for them to find a slot for the pre-registration check-up; etc) but wasn’t too bad. I had a check-up with the nurse at the end of September, and mentioned the niggles (‘they don’t seem serious in themselves,’ said I, ‘but I just wonder whether there’s anything underlying’). She told me the blood-test guy was there that day, so I was welcome to have a blood test if I wanted, so I did.

 

Six days later I got a letter from the GP requesting I make an appointment “at my own convenience’ (ie no rush) and did so, to hear the blood test results. The main thing to be learnt from it was apparently that I had glandular fever. Here at last was a reason for being a bit run-down and picking up a few niggles! And though glandular fever isn’t to be desired, it usually just needs rest, and the doctor thought I was probably already on my way to recovery anyway. The worst thing, of course, was that snogging was off the menu, so I had to completely change my lifestyle. (Now: the doctors here think it may well have been a false positive and I probably didn’t have glandular fever at all; that ties with the fact that I never actually had a sore throat, which normally kicks it off… and anyway, I hadn’t been kissing lots of girls at all, despite everyone’s immediate assumption that I had… so there.) Yet the glandular fever wasn’t the only result: there were a couple of other bits that weren’t right, so the doctor told me to have another blood test two weeks after the first.

 

In the meantime, I was off work (to rest and recover from the glandular fever), and had started to feel a bit worse. My leg started hurting again, and the persistent headache returned a bit more persistently. I saw a GP again, and was prescribed stronger painkillers. Then I had my second blood test. This time there was no letter and ‘at your own convenience’. the Big Cheese GP of the surgery rang me on Monday (I did the blood test on Friday) to say she had my blood test results and how was I feeling?! I told her that I wasn’t feeling great, that I was tired and still had this joint pain, and she said that she wasn’t surprised I wasn’t feeling great, as I was very very anaemic. However, my iron levels were fine, and so they were a bit confused as to why I was anaemic, and the results also showed a couple of non-specific inflammations. These all pointed to something being wrong, but not what, so she wanted to refer me for more tests, and had decided a haematologist would be the best place to start. There was no link between glandular fever and anaemia, so the former was no longer a good red herring to explain away my ills.

 

Thus I was referred to a brilliant haematologist at the Cromwell: I made an appointment with her asap, though unfortunately that still meant waiting a couple of weeks. During that couple of weeks I continued to feel very tired very easily (though I now had the double excuse of glandular fever and anaemia) and my shoulder started hurting too. The pains definitely weren’t getting better, and came to a head the night of the OMV Autumn Drinks Party (Friday 28^th October), where I perhaps stood up for a little too long: I abandoned ship when I realised I was in too much agony to even really make conversation. Clive very kindly took me back to Chelsea, and with me not feeling any better (shaking quite a lot and with shoulder and leg really hurting), got me to A&E just in case. They checked up on me and made sure there was no immediate danger, and by the time they let me go I was feeling better. I stayed at Clive’s, and staggered back to Chelsea after lunch: that night again I was in so much pain and spent ages on the phone trying to get hold of a doctor – by the time I got one, who could give no new useful advice, I had started to feel a bit better and the pain had abated enough to be able to sleep.

 

Monday was my appointment with the haematologist, and my father texted me to offer to come along. I told him I was quite happy to go on my own so not to worry (I had wondered whether there might be something a BIT serious, though hadn’t really considered anything like cancer, and was still hoping it would just be a case of lacking something in my blood that could easily be supplemented), but he wanted to be there, so I was equally happy for him to come up.

 

Of course, I’m so glad he did, as it suddenly all got very serious. The haematologist was great, and took lots of blood, asked lots of questions, sent me for a chest x-ray and rushed around getting the results as quickly as she could. Then she brought us back into her room and told me she could see blast cells in my blood: I probably had some form of leukaemia. Kaboom! That was quite a big moment, particularly as leukaemia was something I knew very little about, but knew was very serious. As most of you will know, my mother died of ovarian cancer a few years ago, too, so a form of cancer was especially not the most hoped-for diagnosis. The doctor did say that it may not be leukaemia, due to a couple of factors that didn’t fit with that (my sore shoulder showed some corrosion in the bones, which isn’t a symptom of leukaemia, for example), but if it was I needed to get into hospital asap to find out what type and start treating it, and if it wasn’t I needed to get into hospital asap to find out what WAS wrong. She had rung around to find a bed, and found one here in St George’s, so she told us to come straight here, which of course we did.

 

Doctors came and took blood out (lots), stuck things in (such as a cannular), asked questions, observed and poked and sent me for more x-rays, and kept me updated as to what they were doing. They knew that having the word leukaemia hanging over me without knowing for sure was not much fun, so were trying to clarify as much as possible as soon as possible. On Tuesday they came back in and told me I had Acute Lymphoblastic Leukaemia, and I started treatment one of the following days. Treatment is steroids and chemotherapy: the latter I didn’t start until the next Monday, which was 7^th November and is now enshrined as Day 1.

 

It may look as though I really ought to have been more worried sooner, but remember that this is all the little bits and bobs brought to the forefront and everything that seemed much more important at the time (such as the rest of my life) completely ignored. The doctors seem happy to have caught the leukaemia at an early enough stage, too, so there’s no “if only I’d insisted on more tests sooner’ or anything like that. Looking at the symptoms in my fact book, you might also think ‘why didn’t anyone think of leukaemia?’, but they were all fairly vague and don’t necessarily mean leukaemia at all. The necessary tests are very complicated, of course.

 

There’s a long story, erm, kept long so you now know hopefully how I got here. I’ll type up some stuff about ALL itself, and my specific illness and treatment. In the meantime, cancerBACUP is where most of my info comes from, and what my handbook tells me is probably online at www.cancerbacup.org.uk if you want to do your own research.

 

Thanks for listening! Will be back soon.

Love

Geeeeeeeeeeeorge

 

Some practical stuff

I was going to just get Fred to post a few basic details about where I am, but since I have his computer I can save him the trouble. I’m staying at St George’s Hospital, Tooting, which they renamed specially when I came in.

 

Address

Ruth Myles Unit

St James’s Wing

St George’s Hospital

Blackshaw Road

Tooting

London

SW17 0QT

 

Visiting

That’s also obviously where to visit me if the urge takes you, and there are no specific visiting hours (though they’re discouraged after about 10/10:30pm, for the nurses’ sake). However, do let me know if you’re planning to come, for your sake as much as mine, in case lots of people turn up at the same time and I can’t give my usual degree of love and attention to each of you… that would be too sad. IMPORTANT RULE: no bugs. I’m neutropenic, which basically means I have no (or almost no) immune system, so any little coughs or colds that you might deal with quite easily I won’t be able to swat away. Unfortunately, then, if you’re at all under the weather it’s just not worth coming to see me. But thass ok (as Papa Lazarou might say). When you’re healthy you’re welcome (hey, when I’m healthy you’re welcome anyway!!)! I have had lots of gorgeous visitors so far, including some in short skirts: I haven’t been worn out too much yet but it’s possible I might put you off if I’m ever a bit knackered or just want some peace and quiet… If I do then apologies, but I’m sure you’ll understand.

 

Bringing me stuff…

You really definitely don’t need to bring gifts, as I have everything I could possibly want or need here (my library is rivalling the Bodley; I could probably watch DVDs constantly between now and Christmas without running out; etc)… And anyway, it’s not like it’s Christmas. Thank you so much to all who have given me anything, and to those who have lent things as well. I am uber-grateful. But I don’t need or deserve any more (I haven’t actually achieved anything, after all). Food gifts have especial reason to not be brought/sent now, what with me being neutropenic an’ all. I have long lists of foods that can’t be brought in, because they might have bugs. You’d be amazed at what that includes, so safest not to bother. If I do have a craving for anything I’ll let someone know – at the moment I have an excellent stock of satsumas (ok because they’re peelable), crisps (ok because they have a long shelf life and come in individual packets) and chocolate (though with no dried fruits or nuts in) to get me through peckish moments. I was losing quite a lot of weight but these extras have helped that to level out. Oh wait, definitely NO flowers. Ward rules..

 

Telephones

It is requested that mobile phones are turned off in hospitals, so I’m not using mine. That’s also partly a selfish thing, because if I used it regularly I’d want to constantly be getting in touch with you all, which would be great but tiring. I haven’t explained that very well, but anyway… I do have it here so if I NEED to get in touch with someone I can (those of you who worry that if I want someone to talk to I can’t do anything about it need worry no more), but please don’t generally send me messages that way – I might occasionally receive them but don’t want that to be a constant communication source. I do occasionally sneak it on to check my emails, as well, but only on WAP very slowly, so don’t use that either as if I have any it’ll take forever to read them. I get emailed the comments from this blog and hopefully that’ll be quite enough! I do have a direct phone line into my room: if you need the number Fred or someone can give it to you, though do remember it’s direct to my room so don’t ring tooooo much. I’ll try to be blunt and tell you if I’m tired/busy. Letters are good :-).

 

Dates

I’ll explain more about treatment in another post, but here are some basic details of dates and things… I’m on Phase 1 of treatment, which is four weeks and started almost two weeks ago (as I type this on Saturday 19 November it is Day 13 of 29). Then I’ll be allowed out of the hospital, potentially as early as 5^th/6^th December, though it depends on what state I’m in. Then I’ll probably be home for about a week or so (or as long as it takes my blood cells to recover to a certain level) and then back in for another four weeks (?) for Phase 2. Those two phases are certain; Phase 3 will exist but we don’t yet know what it’ll be (contrary to rumours, we don’t know about bone marrow matches yet). I’ll keep you updated, but that’s approximately what the plan is at the moment.

 

Hang on…

I just realised a lot of what I’ve said sounds as though I might be trying to put people off ringing and visiting, which isn’t the intention at all, as visitors are the best thing that happen to me every day (to be honest, it’s often the ONLY thing that really happens) and I LOVE people coming to see me (there’s that attention-seeking tendency again); similarly it’s always brilliant to hear from people on the phone. But I was a bit worried I might post this and suddenly dozens of people would pour in the door and the phone wouldn’t stop ringing: hence the caveats. So do visit (though let me know first if possible), do ring and do definitely send letters if you remember how to use a pen and paper. Hurrah! I might not even complain forever if you absolutely insist on bringing me anything…hehe…

 

Think that’s it for now, but will try to write more while I’ve got Fred here with his computer this weekend – certainly about medical matters, as it would be good to get that info out. Hope it’s not all as dry as these practical matters, though.

 

Love,

George in St George’s

 

Freddie's beautiful montage!

Now, this is great. I’m sitting in my room typing on Fred’s laptop, so he can take this away and whizz it online – maybe even tonight if he finds a wireless hotspot. I’ll tell you what else is great: Freddie’s beautiful montage of cards on my bathroom door. I ran out of space to put up cards around the room, so he’s very kindly and artistically stuck lots up there. Hurrah!

 

Right, first things second

Before I write a bit about such exciting matters as leukaemia, life and peppermint green paint, the most important things I have to say is : thank you. Thank you everyone for sending letters, cards, messages, for phone, visiting, bringing things, lending videos and, in short, all the LOVE. I really and sincerely feel overwhelmed by the support I've had: and I'm so touched to think of the wonderful people thinking of me, praying for me or worrying about my family. For all that, I am so grateful, and wish I could thank each and every one of you individually. Friends and family have always been such a central part of my life but now I appreciate even more how fundamental they are. You are! Thank you thank you thank you : your support means so much.
And of course it's great to be the centre of attention...hehe...

So let's all sit around and talk about me, as Lord Flashheart might have said. A blog is egotistical at the best of times, so I'm afraid there's going to be a lot about me, but I guess if you didn't care
then you wouldn't be here. So no more apologies for the self-centrism around these parts.

I thought of four main things I might write about, and shall now try to remember them, to potentially give my thought-wanderings some kind of structure. What with the drugs, the treatment and the peppermint green paint, my mind hasn't been at its more focused, so anything thatmight help...Right.

1) Practical stuff. That'll include how I ended up in here; where I am; how to smuggle call girls in; when you shouldn't phone becausesomebody's managed to smuggle call girls in; etc

2) Medical stuff. The magical interweb can tell you as well as I can about what ALL is, but since the treatment varies from person to person, you'll have to rel on me to find out how they're making me better. This is good justification for blog; keeping you updated onhow it's going!

3) Philosophical stuff. Getting leukaemia can make you think a bit. It can probably make you re-think a lot of things, though interestingly I've found it's confirmed most of my general philosophies / ways of seeing life. Though I never necessarily thought of them directly before. A warning: I might talk quite candidly about quite profound things, so I apologise if I'm ever tooopen or blase about anything you're less comfortable with.

4) Day-to-day stuff. Generally my days all look fairly similar, but I have LOVELY visitors, some very entertaining nurses, a TV, lots of books, a newspaper usually...so hopefully something a bit more'normal' to write about on occasion.

Hurrah! I remembered all four. I shall leave it at that for now, particularly as the lovely Sheila is going soon and I've been an appalling conversationalist so far,,,I'll try to write again soon (I have plenty to say...hehe); in the meantime please circulate the address of this, and do comment if you feel the desire: I'moccasionally managing to check emails and they come through on that.

Lots of love!
George

This Blog may even become useful..!!

Very few people read this blog anyway, but even fewer since I haven't updated it for ages. However, I am now being detained for 28 days (without trial) at St.Georges Hospital, Tooting. If you haven't already heard, I have acute lymphoblastic leukemia (ALL)- apologies if that's a bit sudden. I have no internet access but have set this up so other people can post for me. Big thanks to my gorgeous beautiful wonderful brother Freddie who is typing this. Once I let people know that this is here, hopefully I can keep it updated through friends and family so that everyone knows how I'm doing and can benefit from my worldly wisdom (which is increasing at a rate of knots, maybe). The comments will still be open but as I have no internet myself, I will rely on other people to pass them on if they are for me. If you didn't know and now have lots of questions do post a comment and someone will hopefully be able to answer you. Apologies for the staccato elegance of my prose, but I am dictating this over the telephone, soon, hopefully I will become more adept at getting my words from my hospital bed to the blog.

That's all for now but I'll be back as soon as possible - am very excited that my blog might actually serve a useful purpose..fancy that!