Interview 86

Age at interview: 49

Age at diagnosis: 41

Brief Outline: Diagnosed with cervical cancer in 1994. Wertheim's hysterectomy. Both ovaries and some lymph nodes removed.

Background: Researcher, married, no children.

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She had an abnormal cervical smear test, followed by a colposcopy, which showed that she had cervical cancer. She was devastated when she received this diagnosis and found it difficult to take in the information she was being given. She had appreciated her GP’s straight-talking attitude but wished that she had been able to talk to someone who had been through a similar experience and survived.

 

She found it difficult and physically draining telling her family and friends, especially her husband who was very upset. She received invaluable support from friends and family but still found it an isolating experience. She explained that her husband was brilliant and very good at helping with practical things but that he found the emotional support very difficult as he felt frustrated that he wasn’t able to fix anything. She found it useful talking to people outside of her family and circle of friends. It was a difficult time for her as she felt she had to be strong for her loved ones when all she really wanted was for someone to comfort her. Her work had also been incredibly supportive and flexible. She explained that you try to carry on one day to the next because it is ‘normal’. 

 

She then underwent a Wertheim's hysterectomy where both ovaries and some lymph nodes were removed, which meant she was thrown into menopause. She and her husband had not planned on having children so she felt that a total hysterectomy wasn’t a big issue. Although she was happy with this decision, she experiences a little regret along the way. She was relieved to get the operation out of the way and had a sense of euphoria and happiness when she found out she no longer had cancer. She explained that this also led her to experience feelings of guilt. She said that she had felt upset when she didn’t recover as quickly as she had anticipated physically and found that her emotions were very up and down after her hysterectomy. She also found having a cancer which has negative sexual connotations can be difficult to deal with. She describes how she has found complementary approaches and hormone replacement therapy useful in coping with her post-operative pain and fluctuating emotions. She explained that the hysterectomy initially affected her sex life and feelings of femininity, but that she adapted to the physical changes. She believes it is important to recognise that you don’t always get back to exactly how you were before but that it is not necessarily a negative thing. 

 

She had found information leaflets from Cancerbackup (now merged with Macmillan Cancer Support) were very informative but difficult to understand in terms of the hysterectomy. She explained how Cancerbackup also had nurses who helped answer a lot of questions about her cancer and the operation. She also found Jo's Cervical Cancer Trust a helpful source of advice about dealing with her on-going post-operative pain. 

 

Her advice to others is to not overdo things, to take your time and let people look after you. She recommends having a friend present at appointments as you don’t always take in what is being said. She strongly believes in the benefits of complementary therapies, such as reiki and yoga. She has also found solace in being part of a scattered support network, where she has been able to share experiences and have a laugh. Having cancer was a life changing event and one that allowed her to re-evaluate her priorities and realise what is important. She takes one day at a time and believes it is important to enjoy life and not let stuff get on top of you. She feels that it has had positive connotations for her as well as negative, and inspired her to compile a book on people’s experiences and attend the national conference of cancer self-help groups. She explained that symptoms can often be masked by lifestyle, accepting that’s just how you feel or that’s the way things are. She emphasises the importance of going for regular check-ups, knowing your own body, not being embarrassed and recognising symptoms. 

 

This woman found it difficult to return to and travel to her full-time job after having cervical cancer. She set up a home office and still finds it distressing when her pain returns.

So how does the pain affect your daily life?

 

To start with, if I sort of back track, I went back to work full-time. I started from home, because I had a very understanding employer, and I started from home sort of part-time and then I went back to the office part-time but worked full-time, some from home, and then in October, had the operation at the end of May, in October I went back to the office full-time. But I was in a terrible amount of pain and I don't know why I put myself through it now because I should have realised I'm on sort of maximum doses of pain killers and in agony all the time, but determined to get on and do my job and ignore it. I went back to the consultant and she recommended some treatment, which was a sort of heat treatment thing called Curapuls, I went to the local Physiotherapy Department for that quite close by. And they warned me that might make it feel worse to start with, which it did, it made it feel a lot worse but it didn't start feeling better, so in the end I stopped that before the end of the treatment because it was just too much for me. And around that time I actually rang up one of my colleagues in the morning and said I couldn't come into work that day, and she sort of made me realise that I was, you know, doing too much, and so I actually had to take another six weeks off sick leave from work. Because the first time, when I had my operation, the company were very good and kept me on full pay, which was wonderful, but on the other hand I felt very much obliged to get back to work as soon as possible. So the second time I actually took sick leave, which meant the pressure was off a bit. Following that I arranged to work, I set up an office from home and I arranged to work from home more or less all the time rather than try and go into the office. I went in two days a week instead of five days a week, and that helped because I found, even now driving is one of the things that really brings on the pain, and it's a very hard thing to understand unless you're familiar with pain cycles. If you do it one day it's fine you can cope with it, if you have to do something like that three days in a row it builds up and then takes quite a while to subside again, so it's a question of managing it really. I mean even now, nearly eight years later, if I overdo it I get really bad pain again, which is very distressing after all this time because you think you're over it and then it brings it all back again.

 

A TENS unit, acupuncture and other complementary therapies helped her manage the pain she has experienced since having a hysterectomy to treat her cervical cancer.

Whereabouts is the pain?

 

It's in the operation area, because the hysterectomy I had I've got a horizontal scar but it feels like it's vertical, so I just assume that a lot of the surgery was done that way on the interior, sort of the stomach wall and that sort of thing. And I've had it all investigated and I've been back to two different pain clinics, had various investigations done. Short of further surgery, the only thing left really is to have a laparoscopy to find out if anything was going on inside, which I didn't want to have further surgery as there was no guarantee it would make any difference, I just didn't fancy that at all. It was probably, the pain is probably caused by adhesions and scar tissue and/or scar tissue, apparently it's not uncommon, but of course you don't realise that until afterwards. It's not, not everybody will get it by any means. I've spoken to lots of women who don't feel a thing, they're fine. So I'm just unlucky basically.

 

So how did it make you want to change your life?

 

I think one thing I did while I was on sick leave the second time was I started looking at complementary therapies. The first thing I did was went to have acupuncture, specifically for the pain, which I went to see somebody who was very local, which was great because it's close, and he's a GP as well, so I had the confidence in his judgement.  I'm not implying that other acupuncturists aren't, you know, very good and very well trained, but that’s how it helped me. And it did actually seem to help the pain, and it wasn't, sometimes acupuncture can have a very good effect for back pain and things very quickly but my pain it didn't do that, it was too complicated I think. But it did help me to reduce the painkillers, and I think if any sort of complementary treatment is holistic, and it's helped me on other levels as well I think emotionally and that sort of thing, and of course one of the reasons why this person doesn't work full-time as a GP is he likes to have time with his patients, and you're sort of lying there for an hour or so having your treatment and you talk to him as well about all sorts of things, and that has a great benefit in itself I think. And since then I've looked into all sorts of other types of complementary therapy, herbal therapies and things like Bach Flower remedies, and I've started learning Reiki myself, I went to a Reiki healer who helped a lot and I started learning that, and things like meditation and relaxation and the whole sort of thing that can help people really.

 

You've found that helpful?

 

I have very, yes.

 

In what way?

 

I think it's, a lot of it is sort of stepping back from things a bit and being able to, I mean meditation is helpful for pain anyway because you can remove yourself from it a bit, and it's all the thing, you know, about trying to still the mind and take yourself off to somewhere else and relax, because when you're in pain you don't relax at all very often, you realise when you start doing something like that that you've been tense for months on end almost. You don't even relax at night if you're in pain. 

 

She had not had children and didn't want any before her cervical cancer diagnosis; however, knowing that decision was now final gave her a little bit of regret sometimes.

I was, how old was I? 41 at the time, and I didn't want, I hadn't had children but I didn't want children, so having a total hysterectomy wasn't as big an issue for me as it is for some women; I was very lucky. Obviously a lot of people it's absolutely devastating if they can't have children or can't have more children if they want to, so that wasn't a huge issue for me luckily. It all happened so quickly that I didn't really have to time to think about it, to be honest.

 

I suppose emotionally even though I'd already decided not to have children, it's final now, obviously, even though I'm getting a bit old for it anyway, but there's always a little bit of regret along the way, but anyway I made that decision. But once there's no going back there's a little bit of regret there every so often. But then I've got nieces and nephews and I've now got a great-nephew, so I've got lots of children around me, except half of them are in New Zealand, but I've got lots of children and other people's children to enjoy and get to know and things. 

 

She was glad that it was not obvious to other people that she'd had a hysterectomy for cervical cancer but she felt different inside.

I'm lucky that with this sort of surgery that people can't see it, if you have surgery on the face or something, hugely difficult for people for different reasons really. But you do feel so different even though nobody can see it, which of course has its own problems, as I said before, you know you look fine, but may not necessarily feel that way inside.