Claire - Interview 14

Age at interview: 46

Age at diagnosis: 16

Brief Outline: Claire was diagnosed with Hodgkin's disease when she was 16 and 22, and more recently with colorectal surgery 6 years ago. She received surgery, radiotherapy and chemotherapy for her Hodgkin's disease, and surgery for bowel cancer.

Background: Claire is a marketing manager, and lives with her partner. Background: White British.

More about me...

Claire was diagnosed with Hodgkin’s disease firstly when she was 16, and secondly when she was 22. She also had bowel cancer 6 years ago, which may have been caused by the radiation therapy for Hodgkin’s disease when she was younger. Nowadays, she feels as healthy as anyone else her age. Although she knows that having had cancer is in her mind, it doesn’t rule her life and she doesn’t mind talking about it. 

 

Her recent bowel cancer was treated with surgery, which removed part of her stomach. This has affected what she can eat, as some foods upset her stomach and she can get reflux. Her spleen was removed as a treatment for Hodgkin’s disease which means she still has to be careful to avoid infection or viruses that are in the general community. She has to take penicillin every day. Sometimes, her scar tissue from the operation she had for bowel cancer aches or gets painful which sometimes makes her worry that her cancer might be recurring. 

 

Having had cancer has led to some positives in her life. Claire feels that she has a very relaxed outlook on life which means she doesn’t get too stressed or anxious. She thinks that being positive really helped her through each cancer diagnosis, even though it was sometimes difficult to stay positive, especially when feeling very poorly. 

 

She is currently working as a marketing manager, and has been in the company for 10-15 years. Her employers were supportive about her taking as much time off as she needed to recover. The second time she had Hodgkin’s disease she was passed over for a promotion because her employers thought that as a result of having had cancer, she might not be able to deal with the pressure. She was disappointed as she felt fit and capable of doing the job, and subsequently, the following year, left her position. 

 

She’s not sure if the term cancer survivor is appropriate, because sometimes whether you survive or not isn’t always to do with your own ability to get through it, it can also be down to the kind of care that you have received. 

 

Her message to other people with cancer is to try and stay relaxed and not get too stressed. Her advice is to do the things that make you feel good and try and do things that make you feel positive. 

 

Claire had colorectal cancer 7 years ago and Hodgkin’s lymphoma before that. She believes that...

There’s a term that some people use and it’s, you’ve probably heard it but it’s this term cancer survivor. What do you think of that term? I mean would you want that used to describe your situation?

 

It sounds like you can either choose to survive or you can’t, and I don’t know necessarily is that right? I think you can help yourself. It’s like I was saying before about being this positive about looking after yourself, about how you eat, how you keep yourself well etcetera. That can definitely I think help not only your physical, but also your outlook on life etcetera. So possibly survival from that point of view is a good term. I don’t know whether from a medical point of view, I don’t know, are you in the hands of the people that are dealing with you? Because I used to feel that, you know, I was in the hands of a good surgeon. I was in the hands of a good doctor and I had a good team of people around me etcetera. 

Claire doesn’t worry about her colorectal cancer on a day-to-day basis except when she...

Okay, and just in terms of whether you think about cancer. Do you ever worry about recurrences? I mean is that something that bothers you on a day-to-day basis?

 

Sometimes I do, yes, if I have got some twinges in places that I think either shouldn’t be there or are related to scars or tissue that I think is where they had operations before, I’ll think, “Is it coming back? Isn’t it?” I’ll just sort of monitor it for a while. I’ll keep an eye on it. If it gets painful, or if it gets bigger, or if it’s something that’s there after a couple of weeks and I am still noticing it. Because often these things will come along for a day or two and then you forget about it, and then you think, “Oh, well, that’s wasn’t that, was it. I’ve obviously overdone it or whatever”. If it’s still there after a week or two weeks and I’m moaning about it and my partner says, “Are you still moaning about that? You said that about a week ago about this, that and the other”. Then I think, “Perhaps I ought to go and see somebody”. 

 

And that’s when I’ll go and see somebody about it, and invariably when I’ve been, luckily, so far it’s just turned out to be nothing, or they’ve just said, you know, “It’s most probably a bit of scar tissue”. You know, it does move about apparently, or it can, you know, as you change, you know, as you get older your body shape changes etcetera, it could be just it moving about. If it’s in the way they’re quite happy to open me up and move it about but I think I’d rather just leave it and just get on with it really. So no, apart from that, that’s the only time I tend to think about it. I don’t tend to on a day-to-day basis. It doesn’t worry me from that point of view.

Claire had Hodgkin’s lymphoma as a young adult and colorectal cancer almost 7 years ago. She is...

Recently I was in a trawl for redundancy at work and there was an option to go for a, to take that, therefore meaning that I would then have to go and get another job. 

 

And you have to think about by leaving somewhere that you’ve been for ten, fifteen, twenty years, to start again somewhere that you haven’t got that background and that they may have not, especially for two years, pay you sick pay and a) may not be prepared to take you on anyway if they knew about anything. It’s something you have to think about, so it does mean that you do get tied to places or organisations or places just because you have to think about what the risks are if you don’t.

A few years after treatment for colorectal cancer, Claire was assessed by a corporate doctor who...

What then happened was, after about two or three years of me going back full time, ‘being normal’, working hard in my mid-twenties, I went to go for a promotion and because I’d been ill they sent me to the corporate doctor, not my doctor, their doctor. And he said that he, in his view, he didn’t think that I would be able to cope with the pressure of a promotion that would give me because I’d been ill. 

 

And in retrospect I think that was to do with them being worried about if I did get, if I did take on the role and it did give me stress and then I went sick and then I, possibly, I wouldn’t say I’d have sued, I wouldn’t have sued them but they might have been thinking I might have gone back to them saying, “You’ve given me too much to do and because I’ve been etcetera etcetera”. I think they were covering their back, if you like, and I was very disappointed in that because I’d said all the way along that I felt I was fit, which I was at the time actually. I was very fit because I was playing squash two or three times a week and I was quite capable of doing the job. I was doing quite a responsible job at the time and it was the next step up and it would have just been a natural progression. 

 

And because of that, I got very resentful of the organisation, so therefore left and went on and did something else. Fortunately, after a couple of years I then went to the job that I’m in now, and I’ve been with them nearly twenty years, so it worked out okay in the end, but I could have then gone job hopping. What I do tend to do now is, if I get asked on a form whether I’ve had any treatments, sometimes I won’t say because I think that does hold you back or they will ask lots of questions or they’ll send you for a medical.

Claire feels ‘uninsurable’ after having had three bouts of cancer and can’t get house or health...

Oh, yeah, yeah. Nobody will insure me, so, you know, I can’t get house insurance, you know, for mortgages and things, which used to be, you used to have to. I don’t think you have to so much now but, so again, lucky for me because I had a partner and he was prepared to take it all on, that was fine, but if I didn’t have someone that was prepared to do that I would have had to have either not got a mortgage or I’d have had to have gone somewhere that was prepared to take me without insurance. Because I’ve now, especially now it’s three times, I’m now, I think after two times and after about ten or fifteen years I most probably just about, but now I’ve had it three times I’m most probably totally uninsurable. So, yeah, that has made a big difference, but that’s usually for anything money related. 

 

Things like car insurance is fine. Things like, what was the other one, as I was saying before, if you go somewhere, like, for beauty treatments and stuff, they want you to either sign a disclaimer or they won’t even take you, so there are things like that. There was another one recently I went for. Oh, health insurance. Obviously, they won’t touch you with anything to do with cancer related, but if I’ve got a broken leg I’d be fine, but I don’t know, anything else. So yeah, it does mean that if anything does happen I have to rely on the NHS, the State or my job to back me up with regard to pay. So you do have to think about that.

Claire feels that she needs to stay living in her local area as her doctors who know her medical...

I know some GP services you have to, you can’t always see the same one, but I think it’s always important to try and see the same one so they’ve got a continuity of your history and what you are going through etcetera, because otherwise you have to explain it all again and you get, because I think the notes will say things but they’re not necessarily, you know, someone can’t, they’re not going to read the whole load of, I think mine are about this thick, so they’re not going to go through all those every time. So it’s good to try and keep to the same GP and try not shift about, but I know that’s difficult when people are moving around the country. 

 

I mean I’m fortunate, or not as the case may be. I mean this is one of the things that I said earlier about one of the effects has been that I have not moved away, and one of the reasons would have been because I would have been concerned about going to another hospital, another GP. Because by moving about you lose that continuity, and I think that’s really helped me and the service, and the support I’ve got. I think if I’d gone to lots of different hospitals and GPs they’d have all had different ways of dealing with me and I wouldn’t have got the consistency. So in one way it’s good that I’ve stayed, but in another way what it’s done is restrict my movement whether it’s for work or pleasure or…

 

I’ve gone on holidays but I’ve just not moved away. So I know a friend of mine recently went on one of these sort of seven week, like, you know, worldwide tours type thing, because she never did it when she was younger. And again, that would have been something I’d have done as a youngster but by the time I could afford to go I’d already had it once and my mum just wouldn’t have let me out of the country for a week to France, let alone round the world for seven weeks. So I’ve missed out on that. I might do it later, and most probably will, but I didn’t do it then, and I think a lot of things I didn’t do because people were worried that I would fall foul of something, whether it was, you know, an odd disease in another country, or the stress of travelling, or whatever it was. So that coupled with not moving away from home is, as I say, a two edged sword. It’s meant that I’ve had consistent treatment, which has been great, but there are certain things I’ve missed out on from that point of view, but I’ll make up for it I’m sure.