Experiences

Ovarian Cancer ... and Beyond

Some 35 years ago I worked as a secretary in a large catering company. To reach this busy and challenging role was not easy for me since I had to learn to type. Untypically, I grasped shorthand very quickly but what is the use of this if one cannot type? I came upon these lines: "There is a long way to the journey’s end, and strength and courage often fail, but do not give up". They provided the motivation and determination I needed to pass my typing exam, and many years later I obtained a first-class pass in word-processing.

I reached the Gold level of the Duke of Edinburgh’s Award. As part of the course I learned to drive, which didn’t present too many problems except that I could not master reversing around corners! The adventure section of the Award entailed camping in Scotland for five days. Our tent was not pitched too well and by morning the sides had parted company with the base. Thank-fully it did not rain. We cooked in billycans over a fire, obtained water from a stream and had to find a private spot in the woods for our daily ablutions. The site was high on a hill and once, after a gruelling day walking miles with knapsacks on our backs, we still had to climb to the top. I felt I was not going to make it, due to near exhaustion, and found myself reciting my lines: "There is a long way to the journey’s end, and strength and courage often fail, but do not give up".

Moving on from the 1960s to about 1993, I was tired most of the time and up in the night "spending a penny" four times. During the day, uppermost in my mind was the location of a loo because every hour I would need one. This made life very difficult and the problem would not go away. After taking sleeping pills for three years, being thoroughly run-down due to lack of sleep and succumbing to every cold and virus circulating, I had a scan of my abdomen. It was decided that I had a bladder weakness which could be corrected by a small operation as a day patient. I was told that no cancerous cells were present – and was delighted that such a small operation would see an end to my need to urinate so frequently. It was decided that the area should be rescanned after six weeks. At that time I knew something was wrong since the radiographer dropped the handset and ran down the corridor – returning with a doctor. A blood test confirmed that I had ovarian cancer. I knew this was a serious issue. My cancer was advanced stage III. A hysterectomy found two tumours: the larger, stuck to my bowel, had been the cause of my bladder problem.

I lost my mother to breast cancer at age 68 and decided that, if I had reached the end of my life expectancy at the age of 53, I had to be grateful for the good life I'd lived. I could not believe this was really the end of my life and again kept reciting my lines: "There is a long way to the journey’s end, and strength and courage often fail, but do not give up".

Then five and a half weeks after my operation I started carboplatin chemotherapy. My blood was tested weekly to monitor my white blood cell count and before the third session was too low for me to undergo treatment. I rested for a week and ate foods with a high iron content and then proceeded. Again before the fifth session my level was low but the consultant decided to go ahead regardless. The side effects of the chemo I can only describe as not as bad as I thought but 10 times worse. Contrary to popular belief, all chemo does not involve hair loss, but I did suffer severe constipation and had to take medication to help this. After each session of chemo I took steroids, which produced side effects that were frightening and clouded my judgement. I set off to post a letter with no thought of checking the traffic and also temporarily became excessively aggressive. I was tired most of the time and began to pick up at the end of the third week just when the next session was due. During these months I put myself on a self-devised course of convalescence which comprised of a short walk each day, a sensible diet, a relaxing bath and determination to conquer this. Subconsciously I recited my lines two or three times a day.

I had eight counselling sessions, although together we decided I was mentally strong with a positive attitude and did not especially need to be counselled, but I enjoyed the experience. I then enrolled for an introductory course in counselling and spent 10 weeks at Cranford Community College with eight other people. I have since enrolled for aromatherapy, Alexander Technique and word-processing. I am also making in-roads into writing a book on the subject of hand-made rug making and am enjoying the research.

Most people have been wonderfully supportive, with just a few behaving strangely. Some find it difficult to deal with the "Big C" and avoid mentioning the subject, but I have found that the best way to deal with this is to leave them to their own devices.
Some people who have family members who have lived to a ripe old age seem of the opinion that ill health will never afflict them and that those who do have the misfortune to fall by the wayside stand in the way of the busy lifestyle they lead.

I have made a remarkable recovery due to skilled surgery, the support of my husband, sons, friends and caring neighbours and also with my determination to "make it" -– and perhaps a bit of luck. This made me realise that one never knows what fate lies in store. Since being diagnosed myself two neighbours (in their late 40s/early 50s) and a friend from primary school days have passed away and another long-term friend has had a major operation and is showing great fortitude in what will be a long road to recovery.
Although not completely out of the woods I attend the hospital quarterly for close monitoring and am grateful to live in an age when we have a National Health Service. Tremendous advancement in the medical field over the last half century has enabled many more people to enjoy their lives happily and healthily into old age.
I count my blessings daily ... and continue to recite those lines ... "when strength and courage fail do not give up".
Valerie Gross
London

Jeanette Winter

I was diagnosed with Stage III ovarian cancer in March 1997 at the age of 32. As will be so familiar to many of you, my only symptoms were a swollen abdomen and bowel problems for a week or so. Apart from that, I was fit and well, with one of the best sickness records in my company. I look after myself: don’t smoke at all or drink excessively, exercise regularly and eat what I thought was a healthy diet.

I had an initial emergency hysterectomy, followed by Taxol and Carboplatin chemotherapy, and a second operation midway through my chemotherapy. Since then, apart from having a high CA125 count and getting very tired if I try to undertake anything like my previous level of activities, I have felt and look very well. I had an extremely insightful and helpful week at the Bristol Cancer Help Centre and changed my diet and regimen in line with much of their philosophy. I would highly recommend a visit to Bristol to anyone suffering with cancer. It is so good to feel there are concrete things you can do to help you in your goal for survival.

Being diagnosed with ovarian cancer is, of course, terrible for anyone, but for a younger woman in her fertile years the diagnosis is even worse. You feel so cheated of life and your capacity for motherhood. I strongly believe that my emotions in the two years leading up to this diagnosis were inextricably linked to it. My husband and I had been trying without success to start a family. We both desperately wanted children, and our difficulties in conception inevitably put a terrible strain on us. I have heard it said that stress goes to the weakest part of our bodies: I feel it is no coincidence that my cancer was of the ovary.

For much of the time, my enforced infertility is a much greater pain to bear than having cancer, especially since I am at the age when friends all around me are having children. That can really hurt. Other young women with the same disease have expressed similar sentiments.

Meanwhile, we are trying to rebuild our lives. We have brought a VW camper and are planning to travel extensively around Europe in it this summer. Good things can come out of bad. Since the diagnosis, I read the Ovacome newletter avidly when it arrives, especially people’s experiences and Diane’s complementary therapies section. Some of the most worthwhile things I have done since the diagnosis are having counselling and finding an inner peace and strength which I never knew I had. To any of you recently diagnosed with this disease, I wish you all the luck in the world for your new journey.
Jeanette Winter

Fund-raising update

Three Peaks Run

Mike Evenson sadly lost his daughter Annabelle, aged 27, last January. She died of ovarian cancer and he is forging ahead with fund-raising. He is a fire officer and is full of energy and is organising the Three Peaks Run (on 23rd June) as well as raising awareness for Ovacome.

Mike’s son, a police officer, is planning to run with him and has written an article in the Police Gazette about Annabelle and ovarian cancer. He will also publicise Ovacome in his area which is Hampshire. If you would like to sponsor Mike and his son please send cheques to Ovacome or call the editor on 01992-446306.

During March there was a woman’s’ conference in the north, where Phillipa Clark, a Fire Brigade Union Research Officer, distributed Ovacome leaflets.

Wortley Hall, a Trade Union Educational Centre, dedicated a room to Fleur Lombard, a female fire fighter who died last year. Mike has been asked to write about Annabelle in the memorial book and to supply a photo. He also plans to leave literature on Ovacome. He is currently in the process of writing an article in the Fire Fighting Magazine which will highlight ovarian cancer and Ovacome. This is widely read.

We would like to thank Mike for his enthusiastic and inspiring approach to ovarian cancer and Ovacome since the death of Annabelle.

Charity Flowers

OVACOME is currently in the process of setting in motion an agreement with the above company. Once this is completed they will donate 15% of the cost of all flowers ordered, less postage and packing, to Ovacome. If you are interested in ordering flowers through them please call Charity Flowers Direct quoting OVA and reference number P38739.

London Marathon

Ovacome has now taken the step of buying five marathon places over the next five years. They cost £200 each and anybody interested in running in this event should contact the editor stating why they wish to run and how much they feel they could raise through sponsorship, which will obviously include the £200 that it costs to participate. Debbie Howells has recently completed the 1998 London Marathon and would highly recommend it: "when you finish and the medal is placed around your neck it makes it all worthwhile," she said.

Your help please

As you are all aware, Ovacome relies solely on the public’s generosity and we would like to ask for your help to raise money for us. It can be raised in the simplest of ways, for example here are some ideas which we hope will inspire you: tea parties, clothes sales, car boot sales, a sponsored walk, in fact anything can be sponsored.

Debbie Howells still has ribbons, collection boxes and posters and if anybody feels that they could help with this project please contact her on 01992 446306.
Margaret Yarwood
Raising Awareness Task Force Leader