Interview 53

Age at interview: 44

Age at diagnosis: 38

Brief Outline: Ovarian cancer diagnosed in 1997 in the course of infertility treatment. Treated by surgical removal of ovaries and womb followed by chemotherapy.

Background: Civil servant, married, no children.

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She and her husband had been trying for a family for some time. They had decided to try IVF and were on their sixth attempt when the doctor noticed a cyst during a scan. Her doctor wanted to investigate the cyst further and took some fluid. She had been reassured that she shouldn’t worry. She rang the hospital regarding the outcome of the IVF and was informed her consultant wished to speak to her about her test results. She was unable to get an appointment as soon as she would have liked so the consultant agreed to a telephone consultation. Her consultant informed her that they had found some cancerous cells in the fluid they’d taken. She felt devastated as the thought of cancer had never entered her mind. She was referred for a biopsy. She felt numb and unsure as to whether she had cancer. She explained that questions came flooding in once she had hung up the phone. She tried to ring back but was unable to get through, however she was able to speak to another doctor. She and her husband hadn’t known much about cancer, and what they did know hadn’t been positive. They found the wait agonising but tried to stay positive. 

 

She soon underwent a full hysterectomy. The doctor felt it had been a successful operation and was confident that the cancer had not spread. She felt relieved by the outcome and that it was the right time to tell her family and friends. She was home within 3 days. She described how the surgery had affected her more physically rather than emotionally. She explained that the thought of not having children was overtaken by something bigger and that it just didn’t seem that important at the time. She started chemotherapy to eradicate any remaining cancerous cells. She was able to speak with the oncologist at her first treatment session and found being able to ask questions invaluable. She had been aware that chemotherapy was likely to make her feel unwell and that there was a good chance she would lose her hair. She decided to have her hair cut before she started chemotherapy and bought a wig. She explained that her decision meant she avoided any added stress when her hair fell out after 2 weeks. She eventually felt comfortable without the wig. She felt extremely sick after chemo and was unable to eat and sleep. After the first 2 to 3 days of treatment her energy would come back. She had a lot of ups and downs during chemo but tried to make the most out of the experience by making new friends. She explained that knowing she would see friendly faces at treatment each time made the experience easier. She found that her side effects worsened throughout the treatment and she was relieved when it was over. 

 

She was happy to have had such great support and regular visits from her husband, friends and family. She found that the relationship with her husband was strengthened by this experience, and that they are still able to have a normal and happy sexual relationship. They faced it together and he was an invaluable source of support. They had initially been unable to adopt due to her diagnosis but she contacted a journalist and petitioned for those with cancer to be able to go forward for adoption. They went through an appeal procedure and the decision was overturned, so they were able to go forward 5 years after diagnosis. She decided it was important to go on holidays to recuperate and have something to look forward to. She felt that after her illness she needed to take time to come to terms with it all before heading back to work. She found her employer supportive and was grateful that she was able to have a phased return to work. She had always been an active person and was even more so after having cancer. She took up golf and running, and has done several charity runs. 

 

She is happy to share her experiences with others and has talked at conferences and on nurse training days. She believes it is important for health professionals to understand the patient’s perspective and how the little things that health professionals can often overlook matter. She found that openly talking about her experience helped her come to terms with it. She found information on ovarian cancer was too medical and statistically quite depressing. She would have liked to talk to someone who had been through the same experience. She found it useful to talk to cancer charities/foundations and has become involved a number of organisations. She also joined a support group with other patients from the hospital which she found a great comfort. 
 

She explained that her experience increased her confidence and that she is extremely lucky. She feels that she has faced a lot and come through it with a good outlook on life. She believes that things can only get better and looks forward to seeing what the future holds. She explained that it is important to have a positive attitude and that you shouldn’t treat each day as if it’s the last but take each day as it comes, and face how you feel on that particular day. She believes it is important to get back to some form of normality and not to worry.

 

 

She was always active but since her ovarian cancer she has taken up running and golf and is addicted to exercise; she eats more fruit and vegetables and drinks water instead of fizzy drinks.

Have you changed your lifestyle at all as a result of your cancer?

 

Well I was always a very active person and I would say as a result I have probably become even more active because I get such a buzz from being active. Before I had cancer I would have played hockey, squash, as I was growing up, going to aerobics, and I always walked the dogs. After cancer I took up running, I took part in a few women's runs, the ‘Run for Life’ for the charity, running at that stage just three miles, increased that then to take part in the relays for the marathon in [town] running six miles. I took part in a women's run again for charity in London, and took part this year again in the marathon, not the whole thing now, just the six miles, five or six miles. I started to walk more than before and I think for a while I became nearly addicted to exercise. I found that it made me feel so good and again I felt that it was doing me so much good physically and psychologically that I find that now a very important part of my life. I then took up golf and have a great love for the game and play that very regularly, so again on the exercise plus the social aspect of it. So I would say in life changes that’s probably the thing that I have changed the most, is my attitude to exercise. 

 

I always ate a fairly balanced diet, my career was down that path of food, food science and technology, so I wouldn't call myself an expert by any means but I always believed in a balanced diet and I would eat more fruit and veg now. I would never have been a great lover of chips, apart from that time I was very hungry in hospital, and fatty foods, you know, very fatty foods, I never was a great lover of those anyway. So you know, I haven't really had to adapt my eating habits terribly. 

 

One thing that, you know, when you're in hospital you have to drink a lot of water, and I know that drinking water is very, very good for the body. I try to drink water, and so I probably replace some of the fizzy drinks that maybe I used to drink with water now, and keep a constant supply of chilled water in the fridge, and that helps as well. 

 

Talking openly about her ovarian cancer has helped her to come to terms with it; she has offered to talk to other women who have it because she would have liked that opportunity after her diagnosis.

I think talking about my experience has all helped me as well to come to terms with it, and I have no qualms about telling anybody that I had cancer. And if anybody through any of the charities that I'm involved with, or organisations, feel that they want to talk to somebody, I'm willing. I know it’s not always possible to compare feelings because everybody is an individual and they're different, but I know at the time when I was diagnosed I would have liked to have talked to somebody who had been through the same experience.  

After ovarian cancer treatment left her infertile she tried to adopt but was rejected; the local policy was then changed to allow cancer survivors to adopt after 5 years, so she has reapplied.

The decision then to try adopting children really just came once, you know, we'd sort of come to terms and dealt with cancer and the fact that I wasn't going to die and so on just then. We thought, well maybe we could think about this again, and so we went back and unfortunately when my medical information was put to the panel we were rejected. 

 

So we went off on another holiday then and started to feel a bit sorry for ourselves again and tried to come to terms with that, which again was quite difficult because it was then another blow, and at that particular time while I initially accepted it, then maybe another year down the line I started to think, “This is the only negative thing in my life, nobody else seems to have a problem with the fact that I had cancer, I don't, my husband doesn't, friends and family don't, you know, I’m sort of back to normal and work and, you know, people are treating me the same as they ever did. Why have we been turned down because I was diagnosed with cancer?” 

 

So we decided then that, an opportunity came when I saw an article in a local newspaper covering a similar type of story, that I would contact the journalist and let her know what happened, and we went public. And after that we were contacted by a local MP who decided that this maybe wasn't very fair and contacted the particular health Trust. And we went through an appeal procedure, we met the Chief Executive and my medical history then was gone into again, and a few years down the road the decision was overturned and the policy was changed that anybody diagnosed with cancer applying to adopt children in that particular area would be free to go forward five years after diagnosis. 

 

So I reached my five years six months ago, the medical information has gone to panel again and we've been given the go ahead to start the assessment, which that's the stage we're at the minute. So it’s back to the positive from what was, as I say, the only real negative part left in our lives. So we're starting off an assessment at the minute.

 

Since having ovarian cancer 6 years ago she is able to put things in perspective and not worry about things that are unimportant.

I suppose cancer is something obviously which, you know, makes you focus on things in a different way, and therefore if I had a problem before that maybe vexed me a lot, and you do, I mean you do still have problems, you still do worry about things, and probably even worry about things that you know you shouldn't, but if they get too much you can draw the line now and say, "Right hold on a minute, this is not really that important", and so I think you can get things into perspective more where, you know, beforehand you would have let them maybe worry you too much.