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