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Interview 28

Age at interview: 57
Age at diagnosis: 44
Brief Outline: Was diagnosed with non-Hodgkin's lymphoma in 1993 after finding an abdominal lump. He had chemotherapy and interferon, followed by a stem cell transplant for a recurrence. In remission.
Background: Photographer, married with three adult children. Ethnic background: White British (Scottish).

More about me...

He went to his GP with a sore throat and also showed him a lump in his abdomen which he had had for a while assuming it was a hernia, and which had previously caused him some dull pain. He was referred to the hospital for tests that showed he had non-Hodgkin's lymphoma. He was given six chemotherapy treatments at monthly intervals. After that he had Interferon three times a week for 2 years, which was injected by himself or his wife. 

This reduced the size of the swellings in his abdomen and groin but unfortunately after about two years he was told his lymphoma was returning and he would need a stem cell transplant. Unfortunaltey the first attempt at harvesting his stem cells was a failure because as a result of a communication breakdown he had not had sufficient growth factor injections. The second attempt was eventually successful after several sessions on the cell separator machine. The transplant itself was preceded by high dose chemotherapy and whole body radiotherapy. He contracted pneumonia during his recovery and continues to suffer with recurrent chest infections, although his lymphoma is in remission. 

He managed to work throughout his initial treatment but went off sick for the stem cell transplant. Afterwards he didn't feel he had it in him to continue in the same job and there were difficulties with his employers. So he took up a new profession once he was in remission. 

Looking back, he realised that the night sweats he had experienced some years earlier could have been symptoms of his lymphoma although he hadn't known it at the time.
 
 

Enjoyed the radiographer's joke about being held in position for his whole body radiotherapy.

Enjoyed the radiographer's joke about being held in position for his whole body radiotherapy.

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And I had I think it was about a week of whole body radiation at a nearby hospital. But this involved actually being tied up in a position, I imagined you'd be lying under a machine, you're actually against a wall and it was projected onto you. And you're turned over like a chicken so both sides were equally done. 

I loved the sense of humour of everyone I met in the hospital. That's a fairly typical thing in that part of Scotland is their sort of very sharp sense of humour. And when I was being tied up and before I could object I was told it was the only place in that city you got tied up for free. But they might charge me to untie me if I didn't behave. I felt pretty woozy at this stage. You were driven backwards and forwards by a volunteer. And then you went into a period, you were on diamor-, you know, a low dosage of diamorphine, and it was a very sort of fuzzy period. 

 

His 1st harvest failed because of insufficient injections and his 2nd produced only just enough...

His 1st harvest failed because of insufficient injections and his 2nd produced only just enough...

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Something did go wrong at this stage unfortunately. I discovered when I went down to the city, where they actually do the apheresis as it's called, that the growth factor injections should have continued all the way through to and including when I was down in the city. And unfortunately they had stopped prior to that. So the harvest was a failure. 

They were quite upset at the hospital and I was quite upset too. But I think in my mind you have to accept that this was a very new procedure at the time, and I think there had just been a communication breakdown. And I have nothing but high regard for the people that were involved. The procedure had to then be repeated. And I think I'm right in saying in '97 around about August / September the actual harvest was planned. And they got some, but I had to go back more than a couple of times. And they really were sort of sweeping the floor to get a number of cells. The lowest moment was the night before the last attempt, when it was indicated that they didn't think it was going to be successful. I remember being extremely angry at being told that. And when the next morning I was told that the counts were OK I was over the moon, highly elated. 

The lady who was in charge of the apheresis unit had a great sense of humour, put you at your ease. And the whole process, which looked very scary when you read the documents, being connected up to the equivalent to a kidney dialysis machine for four hours at a time, and the description of some side effects etc, and possible this, possible that, all looked very scary. But in fact the reality was I was sitting there having my lunch and watching videos, one of which was 'Dumb and Dumber', and everyone in the whole room was having a hoot. In fact they brought people in to see me who were potential donors for their siblings, for example, to see that it wasn't such an awful thing. 

So it, from being something that was alien and scary, in actual fact that aspect of the process was relatively benign. And I have to say I enjoyed the people I met very much. They were very kindly, very humorous and kept somebody who's not particularly brave going through it all. 
 
 

His central line was replaced when it became infected a month before his stem cell transplant.

His central line was replaced when it became infected a month before his stem cell transplant.

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I did in fact have a, it was a Kemal line the first time into this side, for the introduction of chemotherapy and also for blood testing etc. It did get infected, in fact, and had to be taken out a month before the stem cell transplant. And they put another one on this side, which they used during the actual transplant procedure. My wife very kindly actually did the job of flushing the lines, I think it was every two or three days, from memory. And apparently some nurses weren't too happy to do this function, because of course it goes straight to the heart. 

And I did on one occasion have the heebie-jeebs. It was a reaction to the bugs had flushed into my heart, and I was just shaking and shivering and had to go to hospital. And at that point they very shortly afterwards said, 'Yes, it's become infected. We'll have to remove it' and then they put another one in the other side, which lasted long enough for the stem cell. But they are renowned apparently for being sort of favourite spots of infection. You know, they just gather in the tube.

 

Uses a homeopathic remedy in the hope that it will prevent him from catching infections.

Uses a homeopathic remedy in the hope that it will prevent him from catching infections.

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Have you thought about or used any complementary remedies at all for your illness?

Nothing in terms of direct treatment of lymphoma as such or, at the moment hopefully. But in terms of the infections since the treatment, I have actually consulted a GP homeopathist and I've tried various treatments aimed at different things at different points. We have tried a, it was a sulphur drug base for the chest. I'm not a hundred per cent sure how good these things were. I continue with something called lycopodium, which is a sort of a general feel-good type of thing to try. And it's just taken once a month. It's six tablets virtually at once. So, yes, I have done that. But I haven't been able to say, 'I was there. I took that and I became, you know, I moved to there'. 

 

Found it difficult to deal with being told his life expectancy might be greater than originally...

Found it difficult to deal with being told his life expectancy might be greater than originally...

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The only time I was actually shocked, and this is many years later, there was a new consultant who arrived and he was the one who said to me, 'You seem to be doing very well. We'll put you onto a six-month visit, not three months'. And he said to me, 'If this had been an aggressive form of lymphoma, we would say you're cured'. And I had a huge problem dealing with that. I actually spoke to Macmillan again and to somebody through my GP, just to talk through the whole business of somebody who had been working very much on very short-term views of life to possibly having a greater expectancy. And strangely that was very hard to deal with. Because I think you conditioned yourself, steeled yourself to the fact that this may not last for very long, and to, as the initial Macmillan nurse had said to me, 'Take everything day by day. Enjoy every day as you can. Use your faith if you have faith', which I have, 'And your family. And enjoy the life that you wouldn't have had'. And that's how I lived. 

And then suddenly you had to think about planning. I mean, am I going to retire? You know, what's going to happen? And it was a very very dramatic moment in the recovery process. He didn't say I was cured, but he mentioned the word 'cured'. And because of the length of time that I've been clear of disease and you say, 'Well, is this actually going to be the case? Is it ever going to come back now?' You know, because no one really made big promises in that direction. And as I mentioned to you I'm a member of the [Lymphoma Association's] 'buddies' organisation. Even now with improved drug regimes and treatments, no doubt they're not given over-optimistic promises in terms of the outcome of the stem cell transplant. And that's one of the reasons that it's valuable for me to speak to them I think, so that they can see an example of somebody who has lasted a good old while.

 

His wife went with him to treatment sessions, gave him injections, flushed his central line, kept...

His wife went with him to treatment sessions, gave him injections, flushed his central line, kept...

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But without a shadow of a doubt having somebody, in my case my wife, fully supportive, I don't mean just at the time of the treatment, which she was, as mentioned actually administering injections and flushing my lines, you know, the physical aspect, being present with me during the treatment, but since, putting up with an awful lot of nonsense. You know, you could become very irascible at times, and I know that. She knows I know that. And there's no point denying it. But she's been there in every sense. I mean she has a part-time job. She also works in the business. Runs the home. We have three children, we have grandchildren, we've got more grandchildren on the way. She's a very, very busy lady. And it's just invaluable that kind of support. I think without it, it probably is quite easy to sink into a bit of a morass of self-pity at times, particularly in the recovery period. But basically she doesn't stand any nonsense. She's very kind but doesn't stand any nonsense. And if something's wrong she'll want something done about it, but otherwise she keeps you going, keeps your spirits up, which is wonderful.

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