Interview 32

Age at interview: 49

Age at diagnosis: 39

Brief Outline: Non-Hodgkin's lymphoma diagnosed in 1996 after developing swellings in his neck and face. Treatment' chemotherapy, radiotherapy and a stem cell autograph. Two recurrences. Treatment included an allogenic bone marrow 'mini transplant'.

Background: Unemployed, living with partner, two adult children. Ethnic background: White Scottish.

More about me...

One day he felt what he thought was a couple of strands of tight skin in his throat, which he assumed was due to a slight infection. A few weeks later he felt a large lump in his neck, showed it to his GP, who suspected an infection. Two weeks later he felt that something was pushing his eye out, for which his GP gave him Sudafed and pain killers. After another two weeks he had difficulty breathing and his GP treated him with decongestants and more pain killers. His partner persuaded the GP to arrange an appointment with a visiting Ear, Nose and Throat specialist, who referred him to the local hospital for a biopsy, the results of which showed he had non-Hodgkin's lymphoma.

He was given 6 doses of CHOP chemotherapy followed by 10 sessions of radiotherapy to his neck and 3 doses of methotrexate chemotherapy. After a two month break from treatment he was given a stem cell autograft. He had a remission lasting about 11 months then he experienced fatigue and felt lumps on his neck again. He had more treatment and was in remission for 8 - 9 months. Then the lumps recurred in his neck. He declined immediate treatment and instead went abroad for a holiday, starting treatment on his return. He was given a 'mini transplant' using bone marrow from his sister. After 3 - 4 weeks in hospital he was sent home and within 4 days had a heart attack caused by an infection of his pericardium with cytomegalovirus, and spent another 4 weeks in hospital. He had another cytomegalovirus infection affecting his eyes 18 months later. His lymphoma is in remission, although he suffers from other health problems.
 

Had 2 relapses of his high grade NHL and the 2nd time was told he would die but was later offered...

And then it was like, it was actually one day walking the dog round the airfield and it was like running into a brick wall, you just couldn't go any further. And I thought, 'There is something severely wrong', and I started coming up with little bumps on my neck again. And when I saw the consultant he told me, 'It's bad news, we haven't even dented the cancer. It's the exact same the only thing now is it's probably got a resistance to the chemotherapies that we used'. I was then given a choice of managing the disease without chemos, keeping pain under control and things like that, or they had some other chemos that they could try but these chemos would do lasting, well permanent damage to some of my vital organs, my heart, my lungs, things like that. 

I decided to take the treatment because of promises I'd made to my daughter and my partner. The treatment was quite hard, it made you feel pretty yuck but I got another, I think it was about another eight or nine months out of that. Then all the lumps started coming back, I had lumps on my neck here. 

Two years, from 1998 till 2000, I was told, 'You're not going to survive this, this is going to kill you, we cannot stop it with the technology and the medicines we have now.' So I felt sorry for my partner because I mean technically she was living with a dead man, and it didn't matter what she did, in two years time she was going to be on her own. And luckily the something else popped up. But when I was told they'd got something else that could possibly help, it was kind of hard to say, it's not, it wasn't a let down, it was just something very different, it was harder to deal with that than it was to deal with being told you're going to die, because when somebody tells you you're going to die, your pension, bollocks to that, you don't have to care about that any more, you don't have to care about savings. If they're going to send you a thing through the post saying 'Do you want a '25,000 loan?' you immediately say yes. But when they tell you you're going to survive you've then got to deal with all this crap again, and that was quite hard, you know. Well I think it was quite hard for me, I think my partner coped with it better than I did. I think she's coped with just about everything better than I did.

After having radiotherapy to his head he found it difficult to talk, eat or drink; he developed...

But I learned the, I suppose the truth of understatement. The consultant haematologist said to me, “You may feel a little discomfort in your throat”. I think it was after about a week I couldn't talk, I couldn't drink, or I had difficulty drinking, I certainly couldn't have eaten anything, I couldn't speak, my mouth was so sore I couldn't even have a cigarette*, everything hurt. It was so, you felt great otherwise, but the pains all round here and down your throat were absolutely incredible. And to make matters worse I got a dose of thrush and it was clinging to the roof of my mouth like fur, and just trying to get one of the nurses at the place where I was getting the radium to take me seriously and have a bloody look. And they wouldn't do it, so I took a teaspoon out of the café one day, one of the little plastic teaspoons, and I went [scraped the roof of his mouth] down in front of them and they had a quick look then and gave me some stuff to sort it out. 

So the radiotherapy you just had to your neck or was it your chest?

It was through about here, went through. The actual tumour was in the cavity behind my nose. It's taken away, the only real lasting effect of the tumour is it's taken away quite a bit of my sense of smell and a bit of my sense of taste. But I think the sense of taste that was probably burnt off with the radium. I mean I had a line along my tongue which looked like a suntan line. Everything at the back of it was bright red and it was just normal pink at the front. But it felt like, on your tongue it felt like somebody had pulled your tongue out and went urgh, urgh, urgh with an open razor and you had all these little nicks in it and it was just so, I threw a plate of, was it tomato soup? I think it was tomato soup I threw across the floor because it was too crunchy. And I've never found any crunchy tomato soup since, which is a shame because I'd like to try it. 

* Patients having head and neck radiotherapy are usually advised not to smoke as it may increase the toxicity of the treatment.

 

Had long hair and a beard before his chemotherapy - used humour to cope with the hair loss.

And I forgot to ask you earlier about the hair loss, you lost your hair, that would have been with the CHOP, would it originally?

Yes.

How did you deal with that?

Originally it was the main thing that I thought about because I hadn't had my hair cut for just over 18 years, and to think, 'Christ, I was going to go bald', that was a bit freaky. I mean when I lost the beard and the hair everybody said, 'My God, you look a lot younger'. And the amount of folk that said, 'It's strange because some people when they go bald they've got a funny shaped head'. Well apparently I've got quite a nice shaped head so I was OK about it. I didn't like people saying to me, 'My God, you look a lot younger with short hair and clean shaven'. But the biggest problem is when your eyelashes go, is the dust you get in your eyes is incredible. But you don't actually look, you can look in the mirror and you still basically you're looking at yourself until your eyebrows disappear, then you're looking at Bob Geldof in the wall and it's just strange. 

But no it bothered me up to a point where it didn't, which was once I'd lost it all. I mean I used to crack jokes with the local laird. He used to say to me, 'It's quite warm today isn't it?' And I said, 'Quite right,' take my hat off and pull two handfuls of hair out and put my hat back on. But I don't know, I think along with everything else it was going to grow back so keeping a sense of humour about it, you know, you just had to do something. 

But somebody, and I'm trying to remember who it was, somebody gave me a bottle of this stuff, and it's a mould. I gave it to someone in the haematology unit to check it out to see if it was OK. And they said, 'Yeah it's OK, it won't do anything but it's OK'. So I was drinking this stuff, I mean you shake it up, break the mould up through it and drink it. And it was growing hair during the chemotherapies and you thought, 'God this is brilliant'. But when the hair got to about this length you could go and just pull it out. And I mean I've often cracked jokes about 'puberty is a piece of cake, I've been through it three times'. But when I was in the big hospital, to wind one of the nurses up I had a little bit of a moustache before I went in, and you could actually sit and just pull it out, so you pluck it down to Hitler size and then goose step up the ward and it just wound the nurses up, it was good fun. So I mean you can do lots of things. I mean I'm a firm believer you can either get on with it or sit down and squeal about it.

His daughter was OK about his illness until she learned that cancer could kill, after which he...

I remember thinking to myself way back in about 1999, I mean my daughter she's been aware that I've had cancer and been getting treatment for cancer since before the treatment started, she was just under three at the time. It only became tricky, to say the least, when she asked why she didn't have any grandparents on my side of the family and I said, 'They both died.' 'What did they die of?' I said, 'They both died of cancer.' Then she suddenly realised that cancer wasn't something like a cold or the flu, it was something that could quite seriously do you a lot of damage. 

But she's been coming with us to various hospitals and consultations, if there's any consultations that I have to go to that the outcome of which could affect our lives she's there, and she's, as far as I'm concerned she has as much right to be there as anyone else, and she can ask questions. She can ask questions of me, she can ask questions of the consultants, of the nurses, the doctors, whatever it is that she needs, the information she requires. Because I mean I'm a firm believer that she can only deal with the situation if she has all the information available. And up in our local hospital the haematology treatment room, one of the nurses has got all the little pictures of her son and daughter on the wall, and then there's all my daughter's paintings. And her first painting was her interpretation of a blood test, which was a lot of red, which she saw, and green, which was what she felt. And she knows all the nurses, all the doctors, the consultants, everybody. So she's as at home there as I am, because I mean when things, I mean my health isn't perfect and when things go a bit wrong for me the place I feel safest is the Haematology Unit in the local hospital. It's, I don't know, it's like my place to run back to. I feel safe whenever they get hold of me I feel safe, that's just the way it is.

How have you explained to your daughter what it's all about?

I basically told her I had a cancer of the blood. The doctors were going to try and do what they could for it, they couldn't guarantee it, but I may die. The upshot of which has been I can do no wrong. I can shout at her, swear at her, throw things at her and she'll forgive me like that, and turn round and take it out on her mum, which isn't fair. So I'll sit down and I'll explain it to her, that she can't be like that. But she uses my partner, her mum as, I suppose like a whipping boy. When she needs to take something out that's who gets it. And I feel quite sorry for my partner then. 

But no I mean my daughter is in full, she probably knows more about haematological cancers than most people do. You know, she's taken part in, I think she helped give me a dose of chemo, she's helped them down on the radium table, sort of get me bolted down and shifted about, she's been in a bone marrow transplant, she's been there when they took stem cells, she's seen blood tests, she actually saw a blood test go from my arm to the machine, to the piece of paper, back to the doctor, and I thought that was quite interesting for her. 

Since his illness he has become quieter and calmer, more understanding of others and prefers...

And it does change you, I mean really, the change in people I suppose from the time they're diagnosed, it makes you think differently. My partner has always said that since we've been moving in these kind of circles, if you like, we've met a lot of people who've survived and they're different' they think differently from other people, their priorities aren't what you'd expect. And I think for quite a lot of, I was going to say normal people, it's a very difficult thing to get your head round, but we're managing OK.

Do you think you've changed?

Oh yeah, oh yeah, yeah, yeah.

In what ways?

I'm quieter, I'm a lot quieter. I'm a lot less trouble than I used to be. When I was diagnosed I had hair down to here, big beard, I wore steel toe cap boots and drove a Harley Davidson and I would have a go at anybody, you know, I'd put somebody in hospital for looking sideways at me if I didn't like the look on their face. And now, not now I'm, I'd rather speak to people now than take a punch at them. I'm more understanding, a lot more understanding, I'm calmer, I'm calmer in myself.