Marion - Interview 28

Age at interview: 73

Age at diagnosis: 66

Brief Outline: Marion was diagnosed with bowel cancer in 2003, and received surgery and chemotherapy. The chemotherapy left her with long-term nerve damage, which has resulted in burning sensations in her hands and feet. She sometimes worries about the cancer coming back, and wants to have regular checkups.

Background: Marion is widowed, with three children. She is a retired doctor's receptionist. Ethnic Background: White British.

More about me...

Marion was diagnosed with bowel cancer in 2003. She received surgery, and had to decide whether or not to have chemotherapy. She decided to take chemotherapy, but felt that there wasn’t much information provided about long-term side effects. While she was having chemotherapy, she started experiencing burning sensations in her hands and fee, which she still experiences nowadays. It can feel very uncomfortable, and her doctors have told her it is likely due to nerve damage. She has tried taking amitriptyline for the pain but it hasn’t made much difference. 

 

Her surgery has left her with a few long-term effects such as persistent wind, for which her doctor has suggested pelvic floor exercises. Foods like brussel sprouts, leeks or cauliflower can sometimes upset her stomach now. When she gets symptoms like constipation, she sometimes worries that the cancer might have come back again. Marion can find herself worrying before a colonoscopy, however, she wants to continue with her follow up to ensure that her cancer is clear. 

 

She thinks that going to a support group may have helped when she was having chemotherapy. However, her children have been very supportive and helpful throughout her experience.

 

Marion says she wasn’t told that the burning sensation in her hands and feet caused by...

Anyway I had chemotherapy, at which I was told I was to have twelve sessions and I had ten in all because I had a lot of burning sensations in my feet and in my hands and they thought after ten I should stop it because they were really red. And since then I’ve had, not so much burning in my hands, but my feet have been terrible. And it’s seems to vary from, I can go two days and then it comes back and I have it for the whole day. Another time I might go three days or four but no more. Someone gave me, a pharmacist gave me some cream to see if that would help but it hasn’t really helped at all. But I don’t know whether if I have it sort of a gap of a day or two and then I get it so quickly back again, whether it may be because I’m tense or rushing around or whatever. But, on the whole, I get it every third or fourth day.

 

So when you were having the chemotherapy, can you just describe a bit more about what the redness was like and what it felt like and your…?

 

Well, it was almost like you’d got sore chafed hands from winter and you, they were sort of cracking and that. I had to put lots of cream on them and also on my feet, and my feet I found very difficult to walk with. I mean though I get the burning sensation now, I can walk with my feet, but my feet were so red and hot that it seemed, you know, I did find it difficult to walk with them. And it’s difficult to explain it really but other people that I know that have had chemotherapy don’t seemed to have suffered with the redness of the feet or the soreness, or if they had it during their treatment, their treatment was stopped for a month or so and then they went back to having it, whereas mine continued on once a fortnight, I used to go to the hospital and have it intravenously put in.

 

And what did they say about that at the time? Did they say that this was an expected side effect and…?

 

Yes, I was told it was a side effect of it but they didn’t say you would have it persisting when you’d finished your chemotherapy. But I think they realised that it was very painful, and after ten, instead of having the twelve sessions, they stopped it because they stopped another man. He’d stopped at eight so he obviously was experiencing the same thing as I did.

 

And nowadays you said that you don’t go more than three or four days…

 

No.

 

…before having it, and how, when does it happen? Does it happen during the day or when you’re walking about or…?

 

Sometimes I can get up and get this sort of, I could go an hour or two and then suddenly I can feel sort of tingling in my feet, and it even goes up into my legs slightly, and I feel that this is going to be a day when I’m going to get it again. And another day I can almost get up with it, but once I’ve got it I never get rid of it until I go to bed and wake up the next morning. And then occasionally, when I wake up the next morning I can feel it a little bit but not as bad as I’ve had the day before. Like yesterday I had a dreadful day of it. In fact, all I kept doing was taking my shoes off and walking round on the cold lino or whatever.

 

And does it keep you up or does it restrict you from walking around, or is it just uncomfortable?

 

It’s very uncomfortable. I’m not one that gives in, so consequently I don’t just sort of sit. I did actually last night, it was so bad I did sit with my feet up and I thought, “Now, I wonder if that will help.” But it didn’t help at all.

 

Marion doesn’t describe herself as a ‘cancer survivor’ because she cannot be certain that her...

People sometimes use this phrase cancer survivor to describe people who have lived past a cancer diagnosis. What do you feel about that? I mean do you think that that applies to you?

 

What, that I’m a survivor from it?

 

If someone said, “You’re a cancer survivor.” How does that make you feel, or do you feel that that’s not really your favourite term for that?

 

Well, no because you never know if it might recur again. I wouldn’t like to say, “Well, I’m a cancer survivor and I’ll never have it again”, because you could quite easily, or you could have it, it could come somewhere else in the body. I mean that’s one of the fears that I think when you’ve had something like that, that you think, I mean I never thought I’d have it, but I mean when you have had it I would never like to say to people, “Well, I’ll never have it again”, because you never know, it could recur again in another form, another way, you know, another part of the body. I haven’t, touch wood, I hope I don’t, but I mean you can’t say that.

 

So the term cancer survivor doesn’t really cover that because it’s something that suggests that’s sort of in the past?

 

Well, I suppose, yes. I mean I can say, “I’ve survived bowel cancer”, but I always keep my fingers crossed that I’m not saying something out of place because next week I might go down, you know. And then I should bite my tongue and say, “I should never ever have said that”. The times we’ve done that and then somebody, you know, goes down with it. You can say somebody is so healthy and well and then, or they can say they’re so healthy and well and they never have anything and then the next thing you hear they’ve got an awful illness and you think, “Oh, I wish they’d never said that”. 

 

Not to tempt fate.

 

No, yes, that’s right, not to tempt fate. You’re very right there.