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Interview 30

Age at interview: 55
Age at diagnosis: 52
Brief Outline: Was diagnosed with non-Hodgkin's lymphoma in 2003 after 2-3 years of occasional abdominal pain. Treated with CHOP chemotherapy and rituximab. In remission but suffers from lymphoedema.
Background: Engineer, single, no children. Ethnic background: White European.

More about me...

For 2 or 3 years he experienced occasional abdominal pain. Nothing his GP tried helped, nor did acupuncture. Eventually he asked to see a specialist and went private to avoid a long wait. He saw a gastroenterologist who suspected bowel cancer but test results were normal. The symptoms worsened and he developed backache. His GP detected an unusual heart rythmn so referred him to a cardiologist, who found nothing wrong but suggested a blockage. Further tests at a private hospital revealed enlarged abdominal lymph glands possibly caused by lymphoma. 

He was quickly admitted to the haematology department at the local NHS hospital. A biopsy of his abdominal lymph glands was scheduled but eventually done on a swollen lymph gland in his neck instead. He also had a stent inserted in his ureter as his tumour was putting pressure on it. It was also suggested that he might have testicular cancer but that was proved wrong. The growing tumour caused him considerable pain in his abdomen and legs, affecting his mobility.

The definitive diagnosis was high grade, large diffuse B cell non-Hodgkin's lymphoma, and he was immediately started on a course of six sessions of CHOP chemotherapy with rituximab. After the fifth treatment his stem cells were harvested in case he needed a transplant in future. After treatment some of his lymph nodes were still slightly enlarged but a PET scan showed it to be scar tissue. 

Although his lymphoma is in remission, during treatment he developed lymphoedema in his left leg and still has to wear a compression stocking, take plenty of exercise and have periodic physiotherapy.
 
 

Was initially told that abdominal surgery might be necessary to biopsy his enlarged abdominal...

Was initially told that abdominal surgery might be necessary to biopsy his enlarged abdominal...

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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. 

 

Felt frustrated at having spent such a long time trying to find out what was wrong with him but...

Felt frustrated at having spent such a long time trying to find out what was wrong with him but...

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In fact I think that is one of the problems for GPs. He didn't really, the symptoms are so vague you don't normally think cancer. In fact I read somewhere that the average GP will perhaps only see one or two non-Hodgkin's Lymphoma patients in his career. So I mean this is a problem for the GPs to diagnose. 

But the only thing, my only complaint was that perhaps over, if you have any sort of symptoms that they perhaps should have referred me to, for scans a little bit earlier. That's, I had, eventually I had to actually go private to get, basically to get my diagnosis. And once I got the diagnosis the NHS took over and I really got good treatment after that. But I did have a problem with that initial diagnosis, and there was false leads, like the irritable bowels, bowel cancer, the false heart murmur, you know, all those sorts of things.

How did you feel about having been round the houses such a lot and taking such a long time to get the diagnosis?

Well it's frustrating but probably a little bit understandable because the symptoms can be vague. I mean some people can get a lump on their neck and it's maybe more obvious like, 'Oh that could be lymphoma.' But other people just have vague discomfort in part of their body, maybe feel a bit tired. I mean I didn't get all the classic symptoms that sometimes you get with lymphoma. I mean one of the ones they always ask you about' night sweats and hot flushes and stuff like that, and I never really got that. But a lot of people don't get abdominal pain or back ache or swelling of the legs that I got so I suppose lymphoma is a whole sort of raft of conditions that the root cause is lymphoma but it's different in different people.
 
 

Had first line treatment of rituximab with CHOP chemotherapy because it was available earlier in...

Had first line treatment of rituximab with CHOP chemotherapy because it was available earlier in...

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And eventually they said after four weeks, 'We think you can go home now and you need at least six doses of chemotherapy but you need to come back to hospital for your next chemo because we're going to give you rituximab in addition to chemotherapy,' this is what they call R-CHOP treatment, CHOP being the chemotherapy, R for rituximab. 

The thing about rituximab is that it can cause problems, you know, with your, side problems, so they need to monitor your heart on the initial treatment in the hospital just in case, so that everything is available in case the worst happens, which is not likely but it's just a possibility. So I think about two weeks after I came out of hospital I was readmitted for just one night so that I could get the second dose of chemotherapy under hospital conditions, and that seemed to go quite well. 

Yes well I must admit when I saw the consultant I was very worried because I didn't really know anything about lymphoma at that time and all you knew 'cancer', you know. But she did assure me that nowadays it wasn't the end of the world, you know, there were treatments available now that weren't available previously and the prognosis was much better than perhaps it was in the 50s or 60s, or even the 70s, because the rituximab treatment, which has been available over the last five years, increases your chances again from just straightforward chemotherapy. And I believe actually even since I was diagnosed that has become accepted as the gold standard now, whereas it wasn't even when I was getting treated. In fact I was lucky, in Scotland rituximab in 2003 was freely available to everybody, but I believe in certain areas of Britain at that time it wasn't. So there was a bit of a postal code lottery in that one.

 

At monthly support group meetings he learns from other people's experiences of lymphoma and...

At monthly support group meetings he learns from other people's experiences of lymphoma and...

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I know you're active with the Lymphoma Association now. How did you find out about them?

I think, no it was just one of the websites that turned up. Actually somebody put an advert in the local paper, which I just happened to notice by luck that somebody was, wanted to start up a lymphoma support group and so I went along to the meeting, and basically that's how I got involved in that. There's not many in the group, I mean it's just a small group but, you know.

Did you go more than once, do you go regularly?

No, no they have it every month. So it's just, it's not too far way from where I live, so I just pop down most months.

What sort of things do you do at the meetings?

Well I mean sometimes it's just discussions and you might get somebody new who's a bit curious about the chemotherapy or something, so some of the people that have had chemotherapy could explain to them, 'Oh this is what our experience was.' We even, one of the sessions actually got along the chemo nurse and who's now actually the Haematology Macmillan nurse, and he explained his role and how, a little bit more about how the ward worked, how your case is dealt with by the doctors and so. Things that you might not know that, when you're actually in hospital, but you get a little bit of the background to start. So, that was one of the sessions we had, so.

At what stage in your illness did you start going to that?

That was post-chemotherapy. In fact it was probably, maybe it might have been six to nine months following chemotherapy.

And do you find it useful?

It's sort of interesting but I don't pick up many amazing new facts that I didn't already know. Sometimes it's me actually telling other people what I've picked up. So, but it's sort of interesting because I mean I had one particular type of lymphoma and there's people there, it's made me realise that some of the other lymphomas are a little bit, it's slightly different in their situations. So you do learn a little bit more about other lymphomas. So I think that's the main sort of reason. We did a little bit of fund raising too. We had a, last year we did a, we all got together and raised a bit of money for the Lymphoma Society, doing one of these charity walks and so on. So there's a little bit of a social aspect to it as well.

So do you see the benefits of going along to groups as being for yourself or for the others?

Marginally for, a little bit of both, but I mean I don't get anything radically new for myself. But it's quite interesting to see how other people are coping. And I did promise that if I became well again that I would try and help other people as much as I could. I also do that, the buddy scheme at the Lymphoma Association, so there's one girl in particular who last year I was the buddy to, and she seemed to think that was useful, so it was reasonably rewarding.

 

Learned about foods that have anti-cancer properties, changed his diet accordingly and thinks all...

Learned about foods that have anti-cancer properties, changed his diet accordingly and thinks all...

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The other interesting feature about cancer is that it doesn't really get, it's difficult to get from hospital or doctors is the connection between food, if you start reading about cancer a lot of the research nowadays is connected with eating certain foods can minimise the risk of getting cancer. For certain cancers, I believe for example prostate cancer there's a link to eating broccoli' broccoli is good for you, taking selenium tablets or brazil nuts is good for you. Lycopene that comes from cooked tomatoes is good for you, drinking a glass of red wine a day is good for you. Presumably the anti-oxidant effects in all of these chemicals could help fight any particular cancer, I don't know. 

But I think it's important that people should know, should eat correctly if they've been diagnosed with cancer and been treated successfully but have the risk of it coming back, just to minimise the possibility of it coming back, eat the right foods, plenty of fruit and vegetables, and sort of minimise certain things in your diet, perhaps red meat and so forth, so on. That's I think one aspect of cancer that perhaps some cancer patients don't get enough information on. So stop there.

OK so I take it you have altered your diet have you as a result of your illness?

Yeah, yeah I actually even bought a book, 'Eat to Beat Cancer'. But basically these were just sort of like vegan recipes but I think it's quite an interesting aspect. I mean eating chocolate, or eating dark chocolate now is considered to be possibly good for you from a cancer point of view. So I mean I think all of these things are interesting and people should know about them.

Yes and you were saying that you don't necessarily find this stuff out when you're in hospital?

No, no, I think you start finding this out perhaps when you come out of hospital you're a bit curious as to how you got this condition, and you're a bit worried, 'Oh I don't want this condition to come back, what can I do to prevent it?' And that's when you start exploring the internet or get the odd book and find out about these things. Anyway to me possibly it's a scientific sort of approach to things, so I like doing research to find out. And the internet is a pretty good tool actually that perhaps wasn't available say ten years ago, so you can get this information more readily available than it was previously.

No the only complementary thing, which isn't really complementary, was investigating, well what foods are potential anti-cancer agents. And that ends up basically fruit and vegetables, eating plenty of fruit and vegetables. And one important thing is try, if you're going to try and eat five portions of vegetables to make them different colours because you're probably getting a slightly different chemical in each fruit. So you're getting, you're trying to hit it with an array of different chemicals rather than, you know, don't eat all greens but eat coloured fruit like beetroot, red peppers, green peppers, tomatoes, all the different colours.

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