Well May started off well, I spent three weeks, cycling holiday, came home May 20th. May 28th I was sitting reading and I couldn’t get my neck comfortable, it was aching and I thought, ‘Oh I’m not sitting right’ and ‘I’ll put a cushion behind my neck. And when you’ve got an ache you tend to touch the part that’s aching, don’t you? And so, on Saturday May 28th I found this lump. I went to NHS Direct and read that any lumps or swellings in the neck report to your doctor immediately. Of course it was a bank holiday wasn’t it? So that was Saturday, I was outside the doctors’ before they opened on Tuesday morning. And the doctor explained it could be what I think the proper name is a gland, lymphatic gland which had swollen up to fight off an infection that I had, and I was to go back in two or three weeks if it got larger or if it hadn’t gone away. Well I like to think I don’t dramatise things, I take things calmly, so I thought, ‘Oh I’ll give it the full three weeks and then we really know where we are. So I left it the full three weeks, went back, the doctor immediately said, ‘I think it’s getting larger, I need blood tests this morning. I thought, ‘Oh gosh.

I’d had a lump on the side of my neck for some time, some years I would say, and I had mentioned it to the GP who’d said it was nothing to worry about. But I noticed, it was getting bigger and I was aware of the fact that other people could see it. And in the course of one week I was somewhere where I saw a poster which said, ‘I had a lump on the side of my neck and it was cancer but it was treated. And two days later I heard of somebody who had, someone I knew who’d been diagnosed with non-Hodgkin’s. And I thought, ‘I’d better do something about this lump.

So I went to another GP in the practice and realised immediately that I was in trouble. Her reaction was so marked that I think I knew right from that moment that there was something really wrong. And she arranged for me to see a haematologist within a couple of days. I had a phone call suggesting that I might go through early in the morning and he would see me before he saw his ward rounds.

I was at a church barbeque in September 1999 and we had some visitors to the barbeque whom I’d never met before. They’d come down to [place name] my town from [place name] Scotland for a day conference and I just happened to be talking to one of them and he said, ‘I hope you don’t mind me saying this but you’ve got a lump on your neck just here, and I’m a GP and if I were you I would go and see your own GP. So I thought, ‘Oh I wonder what that is?’ And so I wasn’t particularly apprehensive when I went to see my GP a few days later. Anyway she had a look at it and gave me a thorough examination. And at the end of it she said, ‘All your lymph glands are swollen and I think you must have some serious disease, possibly cancer, and I would like to admit you straight away to the hospital.

So that was 5 oclock on the Wednesday, at 6.30 on Wednesday I was admitted to hospital, which was amazingly fast, and in a bit of a state of shock.

And presumably you hadn’t noticed the lump on your neck, or if you had you thought nothing of it?

No I hadn’t noticed the lump on my neck but I had noticed that the top of my thighs seemed to be a bit swollen and I just thought it was the muscle bulging out, and I didn’t realise there were lymph glands down there so I hadn’t thought anything of it.

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 theres 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 hed seen one certainly in the ten years hed been working in that unit, it’s a rather unusual presentation.

Well it all started because I had some very severe itching. I’d always had very sensitive skin that very easily itched but I ended up having very, very uncomfortable itching. I described it as being any time, any place, anywhere, basically. And it was so bad that it was debilitating in one way and very embarrassing, and it stopped me from sleeping. I remember in October 2000 we went on holiday to Bronte country and I just couldn’t sleep at all in this hotel. And I remember thinking, there must be something really wrong with me, or my skin or whatever. So I tried all the normal things of changing my washing powder and changing, having naturally made fabrics for my clothes and all the obvious things that I knew that the doctor would suggest if I went to see her. But basically it didn’t make any difference.

Oh, we also had a very expensive water softener put in because I thought maybe it’s because weve got such hard water. And again that didn’t make the slightest bit of difference. It’s nice to have soft water but it didn’t stop me itching.

So, in the end, after a lot of persuasion by my husband who was sick of sitting with somebody who constantly scratched ‘Like a chimp’ he said, I agreed that I would go to the doctor. And so I sort of told her all my symptoms and, true to form, she suggested about washing powders and things like that. So, anyway, I told her that I’d done all those things and that it didn’t seem to make any difference. So she said, ‘Well well have some blood tests because, she said, ‘If you’re very anaemic or whatever you can itch. And various things. So, I agreed to have these blood tests.

In the meantime she gave me lots of things to put in the bath and creams to put on, some of which did a bit of good but it used to be so bad that I was desperate to have my bath by the end of the day. It was like the one bit of comfort that I had. So it became a sort of a ritual, which is why now I hate having baths because it has an association with them. I do have showers, I hasten to add.

Well I suppose the beginning has got to be before, you know, theres 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 theres 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, ‘Weve 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, theres no spare space. Well theres 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.

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.