Lymphoma

And I lived with these lumps in my neck for a number of weeks, and it was probably about three months later that I started getting these odd fevers. And it would start as a cold does, with a sort of slight sort of shiver, and then you'd get a proper fever and you'd be sort of literally sort of, your teeth would be chattering. And I was munching Paracetamol and Aspirin like it was going out of fashion. And these fevers used to last for about nine days, and it would always be nine days and then they'd go away and then I'd get another one, and my partner said to me, 'This isn't right, you must go and see somebody about this.' And I said 'Well what sort of test are they going to do?' And she said 'Well don't get stroppy with me love, I'm not a doctor but I really think you ought to get this sorted out.' 

Anyway by about the fourth bout of this nine day fever I was composing an email to my infectious diseases consultant to say this is clearly something infectious cos there's lumps in my neck and I keep getting these fevers, and what sort of blood tests do I need to sort out what it is? Anyway I was looking on the Internet and I was looking for relapsing and recurrent fevers and it didn't sound like anything to do with farm animals or foreign travel because I hadn't been anywhere, and then I came across this rather obscure sort of fever call Pel Ebstein Fever, which is precisely what I said' it was a clockwork fever, a timetable that starts with a nine day, or however many days, it depends on the individual, but it's always the same number of days, and it just vanishes at the end of that period to reappear usually about the same distance or a bit longer ahead, and then you get another nine day fever that would then disappear again. And if you have lumps, it said the lumps do get bigger when you've got the fever and they get smaller when you don't. And I had one of those Pauline moments, I just knew what I was reading on the screen was what I had, Pel Ebstein Fever. 

But my particular lymphoma with the Pel Ebstein Fever is actually quite unusual, the consultant I saw said he didn't think he'd seen one certainly in the ten years he'd been working in that unit, it's a rather unusual presentation. 
 

Well I suppose the beginning has got to be before, you know, there's a period that one knows with hindsight was the signal that something was afoot, and for me it started originally, I guess, sort of quite a long time before diagnosis where I was, thought I was just fed up with work, and I thought it was work that was making me tired and listless and all the rest of it. And so I rather foolishly, as it turns out, because I could have got, been a lot more financially stable in illness, but I asked for a sabbatical and I wasn't given one so I just said, 'Sod it, I need the time out' and I took a year off work thinking, 'Well I'll quit my job' and thinking that I'd get something else a year later. 

And so I set off, I think I was, I quit work just before Christmas in 2002 and went off travelling, went off to New Zealand and Australia. And one of the weird things when you're travelling is you never look at yourself in a mirror, I mean I sort of travel like a back packer really so in hostels you never look in mirrors, you're always wearing sort of slightly elasticated comfortable clothing, so I didn't notice I was losing a frightening amount of weight. So I travelled all round New Zealand, got to Australia, stayed with friends and they were sort of looking at me a little bit strangely. And I guess round about sort of early March 2003 I realised that something was a bit wrong and it was just from the weight loss. I had no lumps or bumps or anything so there was nothing to sort of give me a clue as to what was going on. 

And I only had a couple of weeks left of the holiday and I thought, 'Well there's no point in going to a doctor here because they'll run a load of tests and send me home and they'll run a load more tests', so I finished my trip, came home just before Easter. And by then I'd sort of realised how much weight I really had lost, and I'd dropped something like, I think it sort of, I'm still trying to think of how weights work out, so I think I lost something like 20 kilos in about six weeks. I mean I really, and I couldn't sit, you know I sort of was so skinny I had to have pillows put under my bum sitting on hard chairs and everything. 
 

And on the Saturday night and the Sunday night I'd found when I lay down to go to sleep I couldn't breathe properly, I had to sit up. This seemed to me very funny. I'm asthmatic so I took a bit of extra asthma medicine, that made no difference and it didn't seem like asthma anyway. 

So I was very puzzled by this and on Monday morning, the day before the due date of the biopsy anyway, I rang the registrar at the hospital who said, 'We've got a bed, come on in.' So I came on in, went on the bus carrying a little holdall, slowed down a bit by my breathing. And it turned out that I had something, they recognised this straight away, called pleural effusions. And that is, normally your lungs aren't attached to your rib cage but they abut closely, there's no spare space. Well there's a minute amount of space and that's normally washed through with lymphatic fluid that go, comes in at one end and is drained off at the other. And what sometimes happens in late cancer is that the drainage duct that siphons it off gets blocked with a tumour, and when that happens, or partially blocked, fluid builds up and your lungs can't expand. 

And so they drained my pleural effusion, which was an extraordinary thing, it's, incidentally it's very painful and they routinely don't give you proper pain relief so my advice to anybody is put your foot down about proper pain relief. Say, 'No, no I'm not letting you do this unless.' Because when the little, they put in a sort of coarse grain needle with a plastic tube attached which drains into a jug, and when that tube goes through the membrane that lines your ribcage and lines your lungs, it's called the pleura, when it's inflamed you get pleurisy, when it goes through the pleura it hurts absolutely, it's so painful. But anyway they put in the little tube with local anaesthetic, which isn't enough, you need a bit of morphine going in a vein, and the fluid spurted out and filled up a jug, two pints of this opaque creamy beigey liquid, like weak milky tea came out, which was a great relief. 

When they kept draining your pleura did they have a catheter or something in permanently or did they have to keep putting one in?

Oh they had to put one in each time. It's a sort of wide bore needle and a plastic tube into a jug. And you have to stay sitting up so even if you're exhausted you can't lie down. They do it with you sitting up on the edge of the bed with your chin on your elbows resting on the bedside table which is adjustable in height. In fact when I had that crisis in hospital after the lung operation the very nice anaesthetist who sorted me out said he thought the way they did pleura drainage on the ward was on the border of barbaric. And I thought, 'What a nice chap, he realises that', and it was after that that I started insisting on pain relief, said I'd rather not have the treatment, and of course they want to give you the treatment. So after that I had a morphine infusion going into the other arm, which made it bearable.
 

I think my story started in earnest about December of 2000. I had six weeks where I had a pain in the middle of my back and I spent those six weeks trying to fathom exactly what the problem was. For most people that I saw, which included a chiropractor, probably about four or five GPs, an osteopath and various other people, for most of us we thought it was a referred pain from a lower back problem. And I'd certainly had a history of sacral ligament problems so back problem was not totally out of the question. Although with hindsight I realise now that the middle of the back, or the thoracic area, those sorts of severe pains are probably it's a warning sign that there might be a tumour there. 

During those six weeks the pain got worse, we did start to consider that it might be a kidney stone problem or some other sort of possibility. I started just taking painkillers, and I'm not the sort of person who generally believes in pain killers at all, I always believe you should try and find out what the root of the problem is. But I started taking them, and, I mean I had lists of three or four things that I was taking at the same time, and my life started to become, you know, I'd go a little bit out of control really because I wasn't sleeping because of the mid back pain, and I was then regulated as to when I qualified for taking the next dose of painkillers, of four or eight hours intervals. And I think I was on everything from Ibruprofen to Tylex to Voltarol, Diazepam, Solpadeine, I think I tried most of the things that were going. I also tried arnica, hot water bottles, ice - I used so many packets of garden peas that I wore out the labels on them. 

What happened was I had been living in Wales and I phoned up two friends in the south of England and said could I come and stay for two or three days in order to see my chiropractor who I used to see years ago for another, for a, you know, I was going to say second opinion but it was probably, by that time it was probably about a twelfth opinion I think. And it was very, very difficult to make that journey because I really was in a lot of pain. A friend gave me a lift part of the way and then I caught a train and I don't think I sat down on the train, I think I stood up. And then I went to see the chiropractor and the chiropractor said, you know, he actually phoned me back after a visit, after my first visit and said, 'I've been talking to my boss, we think this might be a medical issue rather than musculoskeletal.' They suggested I go to an A & E department, which I did. 

I was examined there, in fact it was, that was just after Christmas so it was during this period, it was the first day of the winter snow and ice and the A & E department was full of teenage girls with 4 inch heels and broken arms. And so I waited about seven hours there and eventually the doctor sort of examined one or two x-rays and various other bits and pieces and they thought it was a musculo-skeletal problem, so I was trapped in going backwards and forwards. And then two or three days later I was still talking to the chiropractor but, well maybe it was about two days later, it was sort of New Year's Eve at the time, when suddenly other things started to happen. My legs started to buckle and I lost control of them, and I lost bladder and bowel control, and I became an emergency patient then. 
 

The majority of cases of lymphoma arise out of the blue and we really have no idea what the cause is. And in fact in most cases there probably isn't a specific cause. One of the features of the immune system is that it has to be ready to fight off thousands upon thousands of different types of pathogens that are in the environment. And to achieve this the immune cells have a special system when, when they are developing, there is a series of enzymes in the cell that come along, chop up the DNA controlling the production of antibodies and receptors on T-cells that recognise pathogens. It chops them up, changes them and sticks them back together in a different way to create unique entities, this is how the immune system creates diversity. But actually chopping up DNA, altering it and putting it back together is a recipe for creating cancer, and so one could argue that lymphomas are the cost of mankind being able to cope with infections, and that the real issue is not why do people get lymphoma, but why in fact so few people get lymphomas. 

Now, in any system where the immune system is chronically stimulated, the immune cells will undergo more divisions, and as a consequence of that, they are going to be more prone to random changes that could cause lymphomas. So it's well recognised that some chronic infections can lead to an increased risk of lymphoma. And probably the most notable of those is individuals who have chronic gastritis from a particular organism, heliocobacter, and in those individuals there is a greater incidence of getting a lymphoma affecting the stomach. Likewise in Rheumatoid Arthritis and some allied conditions, particularly Sjorgren's disease, which affects the parotid gland, there is chronic immune stimulation, you tend to get slightly swollen glands, the lymphocytes are turning over more frequently, and this leads to an increased risk of lymphoma. It's not a great increased risk, the vast majority of people with Rheumatoid Arthritis, for instance, will not get lymphoma, but there is a statistically increased risk.