Interview 85

Age at interview: 46

Age at diagnosis: 36

Brief Outline: Diagnosed with cervical cancer (Stage1B) in 1991. External Radiotherapy (30 sessions), followed by Internal Radiotherapy. Radical hysterectomy after radiotherapy. Both ovaries and some lymph nodes removed.

Background: Support Group Volunteer; divorced, 3 children.

More about me...

She first realised something was wrong when she was having more frequent and heavier periods, which were becoming progressively worse. She made an appointment with a locum GP who told her that she was experiencing early menopause. She accepted her doctor’s diagnosis and continued with her life as normal. She eventually found that she was unable to leave the house or attend her smear test due to continuous bleeding. She decided that she needed to do something and made an appointment with her GP who conducted a smear test and referred her to a gynaecologist. At her first gynaecologist appointment they informed her that the smear test had shown abnormalities and they had found pre-cancerous cells. She was grateful that a friend had accompanied her and was able to note all the important information and ask questions, as she had felt too frightened and shell shocked. She underwent investigative treatments - a dilation and curettage, and a biopsy - and was diagnosed with cervical cancer. She found information leaflets from Cancerbackup (now merged with Macmillan Cancer Support) were very informative and useful, and helped to answer a lot of her questions about the cancer and its treatment. 

 

She then had 30 sessions of external radiotherapy followed by internal radiotherapy. She feels that they underplayed a lot of the possible side effects of the treatment. Initially, she found radiotherapy was quick, straight-forward and bearable. She eventually started to experience fatigue, diarrhoea and horrendous soreness which she managed with painkillers. She felt short-tempered and found that her sleep patterns were severely affected. She found it very helpful to speak to other women on her treatment regimen that were going through similar experiences and encouraged her to stay positive. Her soreness disappeared when she finished her radiotherapy but she has subsequently had problems with Irritable Bowel Syndrome. She believes that this is a small price to pay. She then underwent a radical hysterectomy where both ovaries and some lymph nodes were removed, which meant she was thrown into menopause. 

 

She had found it difficult telling her family. It was not an easy time. In particular, she felt it was important to tell her children, who were 4, 5 and 16 at the time, as she felt it was something the whole family would have to get through together. She was given useful advice from nursing staff on how to break the news to her younger children. She received invaluable support from friends and family but still found it a difficult and isolating experience. It wasn’t always easy to keep things running smoothly but she explained that her eldest daughter had been excellent and a great support throughout the whole experience. She only felt comfortable talking to close friends and family about it. However, she found it difficult to say what was on her mind and felt a sense of responsibility to protect her loved ones. She also explained that there was a lot of stigma attached to cervical cancer and that it held negative connotations of sexual activity and history. 

 

Having cancer was a life changing event and one that allowed her to re-evaluate her priorities. She feels that she is more optimistic and has a lot to be grateful for. She took the chance to slow her life down and now takes time to appreciate the ‘silly little things’ in life. Since her diagnosis she has had other health problems, such as lymphoedema. However, she feels fortunate and is able to do most of the things she wants to do. She has also set up a patient support group, which now has a national helpline. She finds great comfort in being able to help others. 

 

Her advice to others is to stay positive and be hopeful. She recommends having a friend present at appointments as you don’t always hear what is being said and it’s helpful to have another viewpoint. She emphasised that it is important to know your own body and don’t be afraid to ask questions. At the time she had felt naïve and uninformed and unquestionably accepted what her doctor said. She now believes that you should feel comfortable challenging your doctor. 

 

 

Since her cervical cancer she has had occasional 'down days' when she worries about what the future may hold; she says that people are entitled to having 'down days' and should not feel guilty.

How do you view the future now?

 

I'm very much more optimistic. I'm not saying I'm always positive and always optimistic because nobody can be like that all the time. I do have down days sometimes and I do sometimes have doubts and sort of think, “Oh what if”, and if I get an unexpected ache or pain sometimes I can, you can, your mind will take over and play tricks on you and read more into something than is there. But that's the way it is. I have, I don't have very many really down days but I do have, but it's very difficult sometimes when, you know, you're very conscious of having a down day and yet by the same token you think, “Well I should be more positive”. And I don't like the ‘should’ word because everybody is entitled to have a down day, and I would be one of the first people to tell somebody phoning the helpline if they were having a really awful day or group of days when their partner or whoever is telling them everything is fine and trying to give a boost to their morale or when the consultants said that everything is all clear or whatever, I'd be the first to tell them, you know, everybody gets it and sometimes it's, like, the result of, like, delayed shock, that it comes out like that. But I suppose it's a ‘do as I say’ not ‘do as I do’ syndrome. Everybody gets down days and has doubts and thinks what if. But by the same token I can look around me and think, “Well there's always somebody worse off than I am, I've got a lot to be thankful for, I've got a lot to be grateful for, I'm not as badly off as a lot of people”. So I tend to be quite happy with my lot really. 

 

As well as other changes in her outlook since having cervical cancer she has become more laid back and is more patient and tolerant towards other people.

But it does change your outlook on things, and many people say it and I know it sounds very corny, but when you, anybody that's faced with a potentially life threatening illness of any description, your priorities change radically, and I haven't yet come across anybody that doesn't say this is one form or another. Things that seemed important before, all of a sudden your priorities change and it was no longer of any real great importance if a red bill came in. You know, it was okay it will get done but let's not worry about this, this is not something to have a major flap about. It does, as I say, it sounds very corny but you begin to notice things, you begin to appreciate silly little things. I mean I noticed all sorts of weird and wonderful things from flowers and plants and trees and things to different people. And you do learn to appreciate, it's not learning, you suddenly do wake up to the fact that, hey actually this isn't too bad at all, there's some good stuff out there. And it’s a great eye opener, it's very, very strange. I don't think I was ever an impatient person before, but I did become very patient. I mean I don't, once I'd sort of got over my snappy period I did become almost too laid back for my own good I suppose in some respects, very tolerant of some things that some people would just not have tolerance with. Certain elements of things, I don't know, it might sound like a religious experience, it’s not a religious experience, I've never been a religious person as such, I've never particularly followed any particular religion, and I mean my family were sort of Church of England and so on, I mean but I've never followed anything, so it's not a religious experience, I didn't suddenly have that sort of enlightenment. And I would like to think that I'm a spiritual person, which is I feel on a different level but, you know, it's not that sort of thing, but it's just different priorities and different ways of looking at things. And sometimes I see people running around like headless chickens, and thinking why, why are you doing that? You don't have to do that. But they have to find their own way.