So I went back and saw my normal GP who referred me to the hospital. And went there and there they saw the specialist and the specialist arranged for a biopsy and they did a biopsy under local anaesthetic, they took a small incision, took the lump out of my neck.

Did they do that under day surgery?

Yes it was very quick. When, it was arranged to see the surgeon for the biopsy, I actually, I was in hospital three times that day, I saw the rheumatologist in the morning, I saw the surgeon at 2 oclock and the surgeon actually, whilst we were in there he said, ‘Well hang on, I’ll make a phone call,’ and he went into the next room, came back and said, ‘Right, well do the biopsy 4 oclock this afternoon. So the biopsy was done the same day. It was done under local anaesthetic. Luckily were within walking distance of the hospital so we actually left the hospital, came back home, had a cup of tea, went back to the hospital, had the biopsy done and took about half an hour, an hour, I think it was a very, very quick process. They just, he literally just made a small incision on my neck, took it out, a couple of stitches and done. It was remarkably quick and painless.

So on the Monday it became clear there was additional complications associated with the lymphoma. Normally one of the things they have to do is to take a biopsy of the tissue to establish exactly the specific type of lymphoma it is. And it’s, at first the, I was led to believe that they would be able to do that using, I’m trying to think of the word, keyhole techniques. But it became obvious that it could entail an operation because the lymphoma was deep within the abdomen. So I was, I got a little bit worried about that because I was now facing abdominal surgery.

But fortunately while I was in hospital one of the consultants noticed that there was evidence of lymphoma on my neck and he thought it likely that they might be able to get the biopsy from my neck and therefore I wouldn’t have to go through the operation. So I went down to the radiologist again and he had a look at the abdomen, he had a look at the neck, and he said, ‘Well yeah I think I can take a biopsy from your neck. And I was quite relieved.

It started with UTIs, urinary tract infections, and having had three and being male, the GP thought that was unusual, and I was referred to a specialist urologist who spent some months putting me through a whole load of tests, some very peculiar tests, I have to say, along the way. And eventually the decision was taken, because I was still deteriorating and they hadn’t yet found any particular reason why I was so ill, they decided to remove my left kidney, which apparently from birth had been pretty small anyway and not of great use, and they deemed that to be the likely source of the infection. So in early January 97 I was taken in for an operation to have that kidney removed.

As I recovered from that in hospital I awaited the results of the biopsy, which seemed to be coming through fairly slowly, and then the consultant surgeon returned and said to me that when he opened me up he discovered that the problem was not the kidney and in fact the kidney and around that area was surrounded by tumours, which were, with a biopsy to demonstrate that it was some form of lymphoma.

You said you had a bone marrow biopsy done. What was your experience of that?

Well I’ve actually had several now over the course of the years. Someone said at the hospital recently I was kind of going for the record. I think I’ve now had probably close to fourteen or fifteen bone marrow biopsies and it would be easier just to leave a little tap in there really wouldn’t it? It was fine, the very first one, again not quite sure what to expect. I was given heavy sedation and so I just basically nodded off for fifteen / twenty minutes. Woke up, all was done, a small plaster stuck on the puncture mark in my back, a day or so of an aching back and then it’s OK, it’s not distressing.

I’d had one where because of a mix up in communications I had actually eaten on the day they were going to do it, because they hadn’t, they’d told me the wrong day, and so I had one under local anaesthetic rather than sedation. Which was slightly more difficult in so much as the local anaesthetic certainly numbs the pain but it’s still fairly distressing, you have to grit your teeth. But it’s fifteen seconds, I counted, fifteen seconds and when it’s finished there is no after effect, no recovery, you’re OK.

But generally I always, with all of the other ones I’ve had sedation, which is simply a needle in the back of the hand. It’s done in operating theatre. I generally, because the hospital know me well, because I’ve been going to so long, I walk to the operating theatre I just kind of follow the bed down, hop up onto the bed, chat to the nurse whilst the injection goes in and wake up some time later recover and go home. And it’s, again it’s one of these things you tell people you have a bone marrow biopsy and sort of alarm bells, they assume that it’s awful and it’s dreadful and that you’re going to be in pain, and simply you’re not, it’s very well managed.

Yeah sure, I think I had the CT scan first and that basically involved going to the hospital and you had to, you basically have to get, I remember not having, not being able to eat for kind of 24 hours before and basically turning up and it was a pretty horrific experience at first really. You kind of get used to them over time but they’re still not my ideal way of spending a day. You kind of have to drink this fluid drink which they tell you tastes like orange squash but it doesn’t. And you have to get through kind of four cups in like over two hours and it’s like a big litre and you’re just kind of forcing it down and it doesn’t taste particularly nice. It’s not the worst experience you’ll ever have in life but it’s not the greatest drink you’ll ever have either.

So I remember kind of forcing that down and then they basically put an injection into you and they inject this kind of, it may, iodine I think it is and that kind of all shows up the areas of cells which are affected by the Hodgkin’s, by the disease, when you get passed through this kind of, it’s like a big kind of round doughnut basically I suppose. You kind of come through, you just lie down on this kind of bench and it just passes you through slowly and you kind of breathe through. And the worst part of the whole thing basically is when they put this injection into you, it kind of feels like you’ve wet yourself in a funny kind of way, you get this kind of funny warm feeling down by your groin and it’s quite, cos you’re not really sure if you have or you haven’t, it’s kind of, the embarrassment factor of it is quite bizarre. And each time you kind of, you know you haven’t but you still question it because of the feeling, it’s like it’s so strange so it’s more of an embarrassment feature than any kind of physical pain. It’s just you don’t really expect it and you kind of think, oh have I or haven’t I? You kind of see the nurses approach you and you think, oh my God don’t check. So it’s kind of bizarre kind of feeling when this injection goes into you.

But other than that it’s pretty harmless really, and that’s the CT scan and that gives you a kind of rough feeling of where the illness lies sort of on your chest and on your pelvis and you know, it basically runs through the whole body.

Oh right. I had to go up to a London hospital for my PET scan and I, they gave me this huge tub of Valium and I took several of those and stayed in this very boring room and just had a really nice relaxed time. And then I had to go and lay on this bed, and because you’re on Valium you’re just so completely relaxed you don’t move. And it was like an all-over body, it’s the heat, and I just laid there. And I can’t really remember a lot about it because I think I was so on Valium, just completely knocked out by that. I can remember being conscious but not really aware of what was going on. And I didn’t realise that when I went that I couldn’t, I wasn’t allowed to go home unless I had someone with me, because they said that you could’ve gone under a train or, the way that. So I, they were very nice and they let me phone my sister and my sister came up, because she works in London, and she came and collected me and brought me home. But it was, you know, it was not an intrusive, you just lay there and completely fine, yes. It was bizarre, this huge pot of Valium.

So I went and had my scan and that was fine. I’m a bit claustrophobic so I was sort of wondering what it was going to be like but it was absolutely fine because it’s open at both ends, so, that wasn’t scary. So it was a matter of just going home. Of course it was a Friday so I had to wait over the weekend. I remember going out with the girls to some gardens and trying to sort of pretend it was all fine and we were having a lovely day. And that was really hard because always in the back of your mind you were thinking, ‘I don’t know what it is. And obviously they were treating me very kindly at this clinic and I just thought, ‘I bet they’re looking at me thinking, ‘Shes so young, or relatively young, and not smoked and what a shame shes got lung cancer. Because that’s what we were assuming. So I had to wait for the results. I don’t remember quite how long it was but it seemed like forever.

So I then went and had the bronchoscopy a week later, which was uneventful. And but then I had to wait a good while. I don’t remember exactly how long but it was well over a week. I think it was up to about two weeks before I knew. So the first time I turned up to the hospital, our local hospital, for the results they couldn’t find them, they didn’t know anything about them. And so I’d waited for about two hours, waiting for this, you know, thunderbolt and it never happened.

So I had to go back again, waited three hours this time, on my own, waiting for these results and again there were no results but they said that what they would do is really try and sort them out, and that they would ring me. And depending on what it was either the chest specialist would ring me or it, they said it could be lymphoma, in which case the consultant haematologist would ring me. So it was kind of a matter of seeing who rang me as to what it was.

And how long did you have to wait for the results? You said you thought everything happened quite quickly?

It was all very quick, I think it was the following week and that was, it was Tuesday, all the hospital appointments seem to be Tuesdays, I don’t know if they have six times the number of staff on a Tuesday in the hospital or something, but it was the Tuesday that the biopsy was done, I think the following Tuesday I was back in and given the diagnosis.

Did you have any idea what it might have been while you were waiting?

We had an idea yes from the first time I was referred to the consultant, when they examined me and they did say that in all likelihood for age group and symptoms that I was showing, it would, the most likely thing was a lymphoma, be it Hodgkin’s or non-Hodgkin’s. So based upon that we knew that was the most likely outcome.