Interview 04

Age at interview: 58

Age at diagnosis: 49

Brief Outline: Non-Hodgkin's lymphoma diagnosed in 1997 treated with chemotherapy (CHOP). First recurrence treated with high dose chemotherapy and autologous stem cell transplant. Second recurrence treated with intensive chemotherapy and rituximab.

Background: Chartered accountant, married wth three adult children. Ethnic background: White British.

More about me...

He had three urinary tract infections in late 1996 that the urologist suspected was caused by his left kidney, which was small and found to be barely functional. During surgery to remove the kidney the surgeon found it surrounded by tumour, which he biopsied. This and other tests proved the tumour to be a non-Hodgkin's lymphoma. He was started on a chemotherapy regimen called CHOP, which forced the tumour into remission.

Three years later he experienced pain in his right arm. After a course of physiotherapy that had no effect, he was referred for tests that revealed a recurrence of the lymphoma at the top of his spine. An operation was performed to remove one of his vertebrae that was surrounded by tumour. Unfortunately he acquired a type of MRSA infection in the spine as a result of the surgery and received treatment for the infection at the same time as chemotherapy for the lymphoma. High dose chemotherapy was followed by a transplant of his own stem cells which had been harvested earlier. Altogether he spent four and a half weeks in hospital in a special isolation room under strict conditions of hygiene.

After a remission of four and a half years he discovered a swollen lymph gland in his neck. A biopsy of another lymph gland in his back proved that the lymphoma had recurred again. He was put on a course of eight cycles of a chemotherapy regimen called PMitCEBO accompanied by a monoclonal antibody called Mabthera (or rituximab). At the time of interview he had just completed treatment and was awaiting results of tests to find out whether the tumour was in remission.
 

Had surgery to remove a kidney thought to be causing his persistent urinary infections but was...

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. 

Blood was taken at his GP's surgery the day before each chemotherapy treatment was scheduled; at...

But the process is the same where you go in, by and large you get the blood test first of all, then discussion with the doctor on how you're feeling and what your blood cells are like and how things are going generally. I got into the routine of getting my bloods taken at the surgery in the village the day before, so that saved maybe an hour-and-a-half getting blood results on the Tuesday morning. 

So that was for eight cycles, provided your blood counts were up, and there was at least the two occasions where I had to be deferred, one because my red count was far too low, and the second one because the neutrophils were falling too low below their recommended level for chemotherapy. I also had a chest infection apparently as a result of pneumonia I had just under a year ago now, so I spent last Christmas in hospital as well with pneumonia. But it came back in the April which deferred the start of chemotherapy, and it came back in August when they stopped chemotherapy while they dealt with the infection. So what should've been sixteen lots of chemotherapy took five-and-a-half months to give to me.

When his lymphoma relapsed several alternative treatments were discussed and he accepted his...

How were your treatment decisions made, did you ever feel that you were party to the decisions or was it a question of your consultants just saying this is what you've got to have, end of story?

I never felt that I was somebody being told this is what I had to have. Clearly I've grown over the years to put a lot of trust and faith in senior medical staff, but they do sit and talk you through it, and as I said to you earlier, that on all those occasions my wife joined me for those discussions, so that she feels she is inevitably part of that discussion. They've taken me through not just for that but what the alternatives are. And one of the alternatives this time was we do nothing, but they don't recommend that, and clearly that's not something I'd buy into, but at least he went through three or four different alternatives as choices I had in terms of treatment. So I wasn't left to say this is the way it will be. Clearly there was a recommended course of action and that's the one that I have followed. But it has come through discussion to be honest.

Good.

But we have to recognise that I'm not a doctor therefore my understanding is more limited and I've grown to trust them, not dictated to. I think that's part of it.

Has had a lot of information via the clinic; he and his wife plan their questions for the...

So you mentioned leaflets and things, did they give you lots of written information when you were first diagnosed for you to take away and digest?

They gave me some. A lot of them I collect when I attend the Haematology Clinic. There's no shortage of information but, and well I suppose given my background I'm inclined to sit and read things and digest information that way, so yes I made good use of them. I think it's getting better, I mean it proves, as I say I've had it for nine years now and there's a wealth of information really. 

I think generally I would say the staff have always been very good in answering my questions. I think as a patient it's sometimes difficult to think what the right question is, and indeed my wife and I were just talking last night that before I see the consultant in a week or ten days' time, that we'll sit down and think through the sorts of questions we may want to ask. But clearly as he talks through the prognosis and so on there may well be something you think afterwards you walk away and think, 'I wish I'd asked him that'. Having said that, I know I can lift the phone and ask the question, so I don't feel I've walked away from getting the answer. You do sometimes feel you walk away and think, 'Oh I should've asked what the implications are'.