Interview 20
Age at interview: 53
Age at diagnosis: 47
Brief Outline: Diagnosed with Mantle Cell non-Hodgkin's lymhoma in 1999 after a stranger pointed out a lump in his neck. Treated with chemotherapy, a stem cell transplant, and rituximab. In remission.
Background: Retired IT manager in local government, married with four adult children. Ethnic background: White British.
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One day, at a church barbeque, a complete stranger, who was a GP, approached him and pointed out that there was a lump in his neck and recommended him to go to his GP. A few days later his GP examined him, announced that he had lots of swollen glands suggesting he possibly had a serious disease, and that he should go to hospital immediately. He went home to tell his wife and family and then on to hospital. He was examined by a consultant who said he probably had lymphoma but needed a biopsy on the lump in his neck to confirm it. The pathology results showed that he had Mantle Cell lymphoma, a relatively newly-recognised and quite aggressive type of non-Hodgkin's lymphoma. A CT scan confirmed that the lymphoma had spread to all of his lymph glands. He was told that his disease could have killed him at any time so he was lucky to have been diagnosed when he was.
He was given six doses of CHOP chemotherapy administered intravenously, during which he was hospitalised five times because of infections. He then had a stem cell transplant with high dose BEAM chemotherapy administered through a Hickman line. He also had blood transfusions to try to build up his immune system. After being discharged from hospital he had to adhere to a neutropenic diet for two months. After three months he was given a course of a monoclonal antibody called rituximab, delivered through his Hickman line.
After being off work for 11 months he returned part-time, but eighteen months later developed shingles and went off sick again for about two months. He returned to work part-time again but tiredness prevented him from being able to resume full-time working so he took early retirement.
He was given six doses of CHOP chemotherapy administered intravenously, during which he was hospitalised five times because of infections. He then had a stem cell transplant with high dose BEAM chemotherapy administered through a Hickman line. He also had blood transfusions to try to build up his immune system. After being discharged from hospital he had to adhere to a neutropenic diet for two months. After three months he was given a course of a monoclonal antibody called rituximab, delivered through his Hickman line.
After being off work for 11 months he returned part-time, but eighteen months later developed shingles and went off sick again for about two months. He returned to work part-time again but tiredness prevented him from being able to resume full-time working so he took early retirement.
His lump was pointed out by a doctor he met at a social gathering.
His lump was pointed out by a doctor he met at a social gathering.
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So that was 5 o'clock 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.
Describes the 'neutropenic diet' that he had to follow for 2 months after having a stem cell...
Describes the 'neutropenic diet' that he had to follow for 2 months after having a stem cell...
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And were you still vulnerable to infection when you came home?
Yes I was, and I was on the neutropenic diet for two months.
That sounds like a terrible fag, how did you and your wife cope with that?
Once you got into the routine it was alright but, yes, it was a bit of a bind.
Was in remission and had just returned to full-time work when he developed shingles; the...
Was in remission and had just returned to full-time work when he developed shingles; the...
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So tell me a bit about how the shingles made you ill, in what ways it made you ill?
The shingles itself didn't seem very bad, I just had a rash across my stomach and I felt very tired for about six weeks or so, and I think I was off work for about two months with the shingles, and I went back part-time again but it soon became clear that I wasn't able to resume full-time working.
You said you're still suffering the after effects, is that tiredness or anything else specific?
Yes, yes the tiredness really.
The rash went presumably?
Yes.
Gained peace from his trust in God; he believed that God had a plan and purpose for his life, so...
Gained peace from his trust in God; he believed that God had a plan and purpose for his life, so...
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I was under no illusions as to what cancer was all about. My brother had been given a terminal diagnosis in February and they told him he had six months to live, and sure enough he lived six months. So I watched him die and yes, so it was, yes, quite traumatic in a way because I know the full effects of cancer. But at the same time I have a faith in God and know that He's got a plan and purpose for my life and so it was a matter of taking each day as it comes really and trusting that things were going to work out, which they have done, so yeah.