Experiences

A bridge too far

I was sitting at my desk at work when my phone rang. As soon as I picked it up and heard the silence on the other end I knew it was Sally and something was very wrong. Through her tears I understood that she had been phoned by the Consultant's secretary and that an appointment had been arranged for Sally to see her at noon. Sally had recently had emergency surgery for an ovarian cyst and was at home recovering. We are both nurses and although we both knew exactly what sort of news the Consultant would give us, we still tried to jolly each other up, saying that perhaps they had lost the biopsy or wanted to award Sally the "patient of the year award"!

I headed home from central London to the wilds of Essex, a small part of me thinking that it was probably nothing to worry about (who was I trying to kid?). The professional nurse inside me was revisiting situations where I had been the nurse breaking bad news to patients in my care.
Sally was calm but terrified by the time I arrived home and we drove to the hospital in complete silence.

We were shown into the office where Sally's records lay open on the other side of the desk. Years of practice of scanning notes at speed, from all different angles enabled me to home in on the word ADENOCARCINOMA. It leapt out of the page like a scene from a cartoon. The only thing was, this was not at all funny.

The Consultant came in and began to talk to us. I can't remember a word she said because I was planning Sally's funeral and trying to work out how I would bring up our two children as a lone parent. I did not realise it then, but two years down the line I know that this is the exact point when I began to disengage from Sally. I know that it sounds incredible callous to be burying your spouse when she is still alive and kicking, but "self preservation" is a powerful psychological tool and I was using it.

Later, at home, I phoned my mother and wept down the phone. I was scared. What was I going to do alone? What would I tell the children? How could Sally do this to me? It was all right for Sally, she'd be dead and I'd be left to pick up all the pieces. I had to survive and to do that I had to protect myself and that meant distancing myself emotionally from Sally.

So for the next few weeks I was on automatic pilot. Sally went back into hospital for further surgery. In hospital, I looked after her postoperatively, looked after the children, cleaned the house, went to work and visited Sally twice a day. I was exhausted, but being that tired meant that I was not thinking about the consequences of the diagnosis. Sally came out of hospital just before Christmas and we spent a quiet time wondering if this would be the last Christmas we would spend together.

The good news was that all the biopsies from the second operation were clear and the Gynae/Oncologists were confident Sally would be fine. One even said that she was "cured". Such faith should have been reassuring but the constant round of bloods for Ca125, CT scans and follow-up appointments just kept affirming and re-affirming that Sally had been diagnosed with Ca Ovary and that she might die.

So we got on with "life". Physically, Sally recovered well from the surgery and was soon able to do all the things she needed to do. Emotionally she was labile and had dreadful problems sorting out her hormone levels due to the bilateral salpingectomy. After numerous creams and patches, this was sorted out and she felt much more normal. The joint pains that she began to have we put down to her surgery and the fact that she had not been as active as usual. These, however, got worse and her joints started to swell and she had 'flu-like symptoms. As nurses we were considering some sort of reaction to the HRT but were stunned when the GP referred Sally to a rheumatologist and she was diagnosed with rheumatoid arthritis. We felt so cheated. Sally had just got through cancer and now she was to be tortured by a chronic disease that could confine her to a wheelchair and ultimately shorten her life span. Just as I had begun to think that Sally would not need to be dependent on me, this happened, and straight away all I could see was another long road ahead where I would have to be the "strong" one supporting the family. Any "closeness" that we had started to re-establish dissipated at once. I needed to get on with caring for Sally and the children. The relationship began to feel more like the relationship I have with a patient at work. I was kind, supportive and professional, but there was no closeness or intimacy. We continued to be best friends and were too scared to be lovers. This is how the relationship has continued over the past two years and, as you can imagine, it has caused stress and upset at times.

This may seem like a tale of gloom and hopelessness, but it is not. The important thing is that, through a process of personal reflection, I recognised what the issues are for me, and therefore Sally. I had the most incredible guilt that manifested itself emotionally in outbursts of temper, depression and tears, usually at really inappropriate times! A very wise colleague took me aside a few months ago and told me to sort this out. She pointed me in the right direction and for that I will be for ever grateful. I have started to talk to Sally about my feelings and in doing so have given her the opportunity to express her suppressed feelings. The relationship is changing again. We are closer, we laugh a lot more and we are not harbouring all the feelings that we felt unable to share, because we wanted to protect each other. My advice to any partner out there is to communicate your feelings. It is painful and there will be tears and tantrums, but in the long run it is better to cross that bridge at the beginning, rather than spend months or years trying to build that bridge only to find that you have no idea how to join the girders together.

In many ways Sally and I are more fortunate than some other couples who have faced the diagnosis of cancer. We have had time to realise the problems in our relationship and do something about them. Talk to each other, listen and take a short course in emotional "bridge building".
Christopher Birbeck

Complementary therapy heals Lynne

Thank you for sending me the Ovacome magazine. I really do enjoy receiving it and hearing all the comments and stories, I find it very informative.

I had ovarian cancer in 1998 and underwent chemotherapry (Taxol and Carboplatin): luckily I am at present cancer-free. As I felt fit prior to my hysterectomy (when they found the cancer) I thought foolishly that I probably would not have too many side effects and would be able to return to work. Unfortunately that was not the case, as I became progressively very tired and had severe sleeping problems. I would go five days without sleep and so had to take sleeping tablets, which I always vowed I never would.

Anyway, to cut a long story short, about three months after my treatment finished, I decided to stop taking the sleeping tablets and to try herbal remedies, but without any success. By last November I was getting desperate, I had tried everything to help me sleep: herbal remedies, lavender oils, milky drinks at night, soothing music, long walks, working harder, etc., but nothing seemed to work.
I was struggling to get back to work full time as I found that my head was too busy/whizzy after the effects of the chemo. When I tried to concentrate too much, I would get worked up and so I guess at night I just could not switch off. It always felt as if I would just fall asleep only to feel as if my head was pushed awake again.

Eventually I was so desperate, I was getting to the point where I knew I'd have to go back to the sleeping pills when I visited my local health food shop and met a lady who discussed complementary therapies with me. I then went to her for aromatherapy, reflexology and reiki/seichem treatments - which I found wonderful. I only wish I had received this treatment while I was on chemotherapy, as I am sure it would have helped me deal with it. It helped me to relax so much, but more than that it helped me to admit to myself that "yes, I had had cancer". Instead of believing it was happening to somebody sitting on my shoulder, I was able to believe that I could deal with it and, even more importantly, that it might come back, but if it did I would deal with it again. I certainly make the most of my time now.

Earlier this year I wanted to find out more about reiki/seichem and have now taken my reiki I and II. It is a hands-on healing energy and it is so simple and safe. It is non-religious and can be accepted by anyone of any faith or creed. It is a natural, holistic and safe system of healing - even for babies, pregnant women, the elderly and after surgery.

It is also a powerful tool for self-development. It helps you to move through the blockages that prevent our lives from flowing as they should. The energies enhance our natural ability to heal ourselves. Primarily I took this course for myself as my way of dealing with the cancer now and in the future. Most importantly I feel it has changed my way of thinking and my life. I know cancer has changed the way I feel about things but reiki has really opened me up to a new way of living and given me a new direction.

I have also read a lovely book by Bernie Siegel called Living, Loving and Healing and I found this very helpful; perhaps other people would like to read it. He is a doctor who started a support group. It describes how people come to terms with their illness. It contains good and bad stories but I found it very inspirational. I can really relate to the part where it says "I have had cancer but it did not have me" and "give yourself a new birth date, a new beginning". He also explains the difference between healing and curing, which I had never thought about before: I now realise that you may not be cured but you can be healed. Please think about reading this book.

Several years before I had cancer, I had problems with my neck and hips and I had never realised that I had become so tense. This is one thing that aromatherapy, reiki and reflexology has helped me with.

Just to finish, we are going away for Christmas and the New Year to Nepal trekking for six days. I have just started my walking programme to help make sure I am fit and can enjoy this holiday. We were just going on this holiday for my 50th birthday when they found the cancer - so this became my goal - it really is something to look forward to and achieve.

Although I have never managed to get back to work full time, I really do feel that having the complementary therapy enabled me to stay in work longer than I did. So I cut my hours at work and now enjoy the extra time at home and have been able to do a bit of voluntary work. I really do realise what is important in life now.

If others have benefited by using or receiving reiki or any other complementary therapy I would love to hear from you.
Mrs Lynn Neal
Bedworth, Warks

Judith Wheeler's story

I have wondered for some time why it is that the doctors treating me are not more interested in my previous medical history. As it seems that no one as yet knows what causes ovarian cancer, surely more research should be undertaken to see if a link can be established between this and other previous illnesses and/or symptoms? Also, such research could assist the current screening trials to identify early warning signs in those at higher risk.

I am suffering from Stage 4 ovarian cancer, diagnosed last November. I had suffered from bloating and acid indigestion for at least 10 years prior to this, but no one ever suggested that I might have cancer and I was blissfully unaware of the symptoms until recently. When I complained about my disproportionately large stomach, I was told I needed to 'tone up' and watch my diet. I spent years hunting for clothes that fitted me around the middle, wearing comfortable support underwear, dieting and generally feeling ashamed that I had somehow let myself go!

I'd also experienced several unusual illnesses in the past, which I believe could be relevant to my present condition, and I pointed this out to my doctors, but they did not seem at all interested, and I did not wish to keep pressing the point, as after all, they are the experts! However, I still feel more notice should have been taken, and I wonder if any other readers feel the same.

The conditions I thought might be relevant are as follows:

• When in my early twenties, I had a 'dermoid' ovarian cyst which I was told contained teeth and hair, and my right ovary and fallopian tube were removed. I have been told that this was a completely benign condition and has no connection to my present cancer.
• Several years later, I developed glandular fever and was hospitalised for four months with unusual complications including severe anaemia, jaundice and extreme fevers. I was treated with high doses of steroids, and told I was lucky to survive.

 
During this illness, I understand a considerable amount of investigative work was carried out as the doctors were very puzzled by my case, and my family were asked to give blood samples to see if any genetic link could be established. I was also informed that I had a rare immunity disorder - something to do with 'T cell dysfunction', I believe - whereby my white blood cells were attacking my red blood cells. I was told to get in touch with the hospital if I ever developed any strange symptoms.

All of this took place at Northwick Park Hospital in Harrow in 1977, and I was treated by Doctor Hillas Smith of the Infectious Diseases Department. Of course, he has long retired, and my medical notes have not been found as they are either on microfiche or else disposed of. It seems that all the work that was carried out has, presumably, been forgotten when it could perhaps be of use now.

More generally, from what I have read, it seems there is a connection between ovarian cancer and frequency of ovulation, hence childless women are considered to be at higher risk and those on the contraceptive pill at lower risk. Perhaps I am dim, but if this is so, then surely those having a shorter monthly cycle (say periods every three weeks on average, like myself) should also be regarded as high risk. There seems to be a complete silence on the subject, and I cannot understand why there is not more publicity about the advantages of taking the contraceptive pill either.

When I was a teenager in the early sixties, no-one talked openly about periods or the menopause as it was considered too embarrassing, and the pill was denied to single women due to the Family Planning Association's then policy of treating only married women. It seems that this legacy of unfairness is still with us because ovarian cancer more often strikes women over 50, and it has taken all this time to reach a younger generation of women who are not prepared to stay discreetly dumb!

I congratulate Ovacome for raising the profile of this "women's complaint" and I sincerely hope it won't be too long before a satisfactory screening method can be found.

Incidentally, I have recently finished a course of Taxol and am waiting to see how effective it has been. My last blood test showed that the cancer is probably still active even though my scan was clear. I am still planning to holiday in the South of France next month as I feel OK. Perhaps I will surprise everyone again.

My best wishes to all Ovacome members and thank you to the committee for all their hard work on our behalf.
Judith Wheeler
Harrow, Middx