Interview 08

Age at interview: 53

Age at diagnosis: 42

Brief Outline: Diagnosed in 1995 with Hodgkin's Disease following breathlessness and arthritis-like symptoms. His doctor also detected swollen lymph glands in his neck. Six cycles of chemotherapy put him into remission.

Background: Office/Admin Manager, living with female partner, no children. Ethnic background: White British (Jewish).

More about me...

His illness began with shortness of breath, which didn't respond to antibiotics and gradually worsened. This was found to be caused by fluid in the lungs and around the heart, which was drained off. After this his breathing gradually improved and he had regular lung function tests and chest x-rays. 

Eleven months later one of his fingers swelled up and felt stiff. The stiffness became progressively worse, extended to other fingers, and his legs felt heavy. He had investigations for possible arthritis but this was eventually dismissed. A chest x-ray then revealed shadowing around his thymus gland, which it turned out had also been visible on the previous x-ray taken 6 months earlier, but not noticed. A biopsy confirmed that he had Hodgkin's disease. His doctor pointed out that there were swollen lymph nodes in his neck, but he had never noticed them himself.

He was treated with six cycles of a chemotherapy combination called VEEP as part of a clinical trial, as it was a new treatment at the time. Towards the end of treatment he needed a blood transfusion to restore his blood cells to normal levels. The chemotherapy put him into remission and scans taken after his final treatment showed no evidence of cancer cells, suggesting that the disease was very unlikely to recurr. He has been attending regular follow-up appointments since and remains in remission. Neither the breathlessness or the stiff joints has ever recurred.
 

Had a blood transfusion after five chemotherapy treatments because his red blood cell count had...

So as you go through these sessions of chemotherapy the red blood count goes down because of what you're having. Now the red, as the red blood count goes down you get more and more tired. Before each session of chemotherapy they check your red and white cells to see what your count is. If the white cells go down too low it means you're too likely to get an infection and they won't do the treatment, they put it off for a week. I actually went through each treatment exactly on time so I never had to stop the treatment, but after about five treatments I did have to have a blood transfusion because my blood count had got below ten, I think it was 9 point something, the red blood count, so they had to give me a blood transfusion, which takes about four or five hours, you lie on a hospital bed and they put this blood into you and when you come out of there you feel a lot better, you feel a lot more energy and it's actually, you just feel better all round. 

Precisely followed the instructions he was given about how and when to use his medication and...

Do you feel you were involved at all in the decisions over your treatment or was it always the case that the doctor was just saying, this is what we're going to give you, that's it?

Really you're in their hands because they know what they're doing and you may think you know what they're doing but you don't. As far as blood transfusions were concerned I suppose I could've said, 'No I don't want the blood transfusion', but apart from that really you just have the treatment. I did exactly what they wanted me to, even down to the things, they give you one or two things I've forgotten to mention, one thing is that the chemotherapy causes the mouth, you can get mouth sores and ulcers inside your mouth, so they give you a mouthwash which you have to use all the time, every day. You dilute it down and you swill it around your mouth. And that, I used that exactly the way they said. I did everything exactly the way they asked it to be done. The tablets were taken precision timing, to exactly the time of day, because to have the maximum effect it's no good leaving them for two or three hours, 'Oh I'll take them later today.' Everything was done at exactly the same time, the mouthwash was done every day and that prevented the mouth ulcers which a lot of people get from this treatment, you can get nasty mouth ulcers. If you do the mouthwash at the right time exactly as they say then it should be OK. 

The hair, when the hair drops out, you have to still wash, sort of wash what's left of it, of your hair, and they told me you have to use a very, very mild shampoo, a baby shampoo. So I went out and bought the baby shampoo and used that instead, not wash the hair too much, about twice, not more than about twice a week, because the scalp can be affected by the treatment as well. So that's what I did, used the baby shampoo throughout the period, little things like that. Everything was done exactly to order, I had a sheet with what to do and I did it. There's no point in thinking, 'Oh I won't do this, I won't do that, it'll probably be alright', because if they're saying you need to do it, you do it, and it's for a certain amount of time, and at the end of it all you hopefully come out alright.

Became hypochondriacal about checking his symptoms during remission and had a change in his bowel...

But after it was all over you get the paranoia creeps in, the hypochondria, and every time you've got an ache, a pain etc., you think it's come back again. And that's apparently natural, in my case I'm more hypochondriac than some people probably. So the hospital is there to support you. I go along there and they do tests and this and that. 

About two or three years ago I had a problem with the bowels, just a change in the bowel functions and things like that, and pain. Unfortunately they put me through an enema, nothing wrong but they want to be thorough. So you go along there, the symptoms were that I could've, I mean I could've had bowel cancer, I had something, I had rectal bleeding etc., but that was piles, but they weren't taking any chances, you know, up the old enema and away we go. And I wouldn't recommend enemas if you can avoid them but they are essential so they can see inside the bowels. And everything was fine but that's the sort of thing, yes you sweat, you're OK, it was diet, I had to change my diet, more Weetabix and stuff like that, more fibre in the diet, and that's put it right. But you go to the hospital and you're still under the hospital and so therefore they investigate anything you come up with, especially with the history they will look into it in more detail and very quickly.

Tries to make the most of life since his diagnosis and does things now that he only thought about...

Have you thought about any changes to your lifestyle as a result of having Hodgkin's, things like exercise, diet, smoking?

I didn't smoke before so I certainly wasn't going to take it up. I'm not a great Guinness drinker so I've stopped drinking the Guinness, although I still enjoy the odd half pint. The exercise' not really, but what it does do is it opens up your eyes to, you don't know when you're ill like that how long you're going to have, and you've got to make the most of your life when you're out there. So things that I thought about doing before I would now go and do, like if I was going to have a holiday, if I wanted to go to a particular place on holiday I would go on it. And I went on holidays during my chemotherapy, I actually went to Amsterdam during my chemotherapy and the doctor had to give me a letter, he told me I couldn't go swimming or anything like that in a swimming pool, gave me a letter with some drugs' names written on there to give to the local doctors in case that I got taken ill. Very strong drugs, one of them apparently could've damaged my hearing permanently if I had to take it, but that was emergency drugs, if something went wrong when I was away from the country. But he said, 'No don't not have a holiday'. 

And so I did everything as I would before, just opens your mind to what's out there and the fact that you've had a serous illness, you got through it, you've got to make the most of life because you never know what's round the corner for anybody, nobody knows what's round the corner, so make the most of life. You don't appreciate life until you've been ill like that. I think people think they appreciate life but they don't until they think, 'Well I'd love to have done this, love to do that'. Go out and do it, enjoy it. Don't wait even till the end of the chemotherapy if you can walk around. I did struggle a bit, mind you, going on the holidays and walking around a strange city having diarrhoea and things like that, but I was determined to do everything and go to work every day. The only days I missed were the days, the actual treatment days, and if I had an appointment to see the specialist, but all the rest of the time I was at work.