Experiences

Ann Hipwell's story

1997 was to be a memorable year as I celebrated my 65th birthday. A holiday in Malta, seeing Phantom of the Opera combined with a day out in London, and a day in Boulogne with my French class were just some of the activities between March and May. There were even thoughts of combining visiting a friend in Perth, Western Australia, with a coach camping holiday: the older persons' 'back packing!'

My family presented me with a belated 65th birthday party which was a complete surprise, I/thought it was going to be a lunch out with my eldest son and his family, but they'd hired a hall and invited family and friends, the latter ranging from infant school days and someone who has proved herself to be a really good friend since last September. With an age range from 1 to 81 it was a lovely atmosphere, the excitement lasted well into the following day, and indeed the shock of it took my breath away. As you can imagine I enjoyed it far more than a 'lunch' and to top it all it was lovely to see the family's pleasure in being able to do this for me.

Then I felt again the lump, which I had put down to constipation when in Malta. A visit to the doctor proved it to be more serious than I had thought. Within a fortnight I had had a hysterectomy and ovarian cancer had been confirmed.

I had just paid the deposit to see the Passion Play at Oberamergau in 2000. When offered this back I said 'no thank you' I'll travel hopefully! How glad I was that I'd said this, it was a fantastic holiday in good company. Then last year I did get to Perth to see my friend (minus the camping).

By this time I knew all was not well so it came as no surprise to hear the cancer had returned. Back to the regime of chemotherapy and avoiding germs as much as possible. Family and friends sounded worse than I felt when they rang to tell me that they had fallen victim to the latest virus.

During the treatment I thought about my growing grandchildren, the eldest of whom is 15. There are going to be years ahead when one or the other will be studying for important examinations. A time of stress is not only for them but also for their parents. Should I have accepted further treatment and maybe added to this burden? On reflection it was the right thing to do: I was not giving in.

The three months scan showed encouraging signs of shrinkage but by six months the tumours had started to grow again even whilst still on treatment (they must have developed a taste for carboplatin!)

My oncologist explained the situation and offered me more chemotherapy, but what were the chances that further treatment would make any appreciable difference to my condition? The reaction to the last two doses of chemotherapy was so different to the previous ones. Well, odds between 10 and 20% were too low; it seemed better to have a few months feeling more myself and enjoying the company of family and friends and hopefully giving them some happy memories.

The decision did not seem difficult to take; in fact there was a great sense of relief that I could now be back in charge of my life. To this end I spent a happy and fairly lively Easter with my youngest daughter's family. They have three boys aged seven, four and one. Yes, I did get tired but it was worth every minute! My youngest son and his wife are taking me to France for a long weekend, we are going to Monet's garden, a trip proposed when I began treatment back in September 2001. My nephew is getting married, so there is another event to look forward to. In between there is the pleasure of going out and having friends visit. My older son and daughter are involved in day-to-day help as they live closer to me. Another benefit from refusing treatment is that I am able to sort out my affairs. Looking at my will, made only nine years ago, has shown me that there are some minor discrepancies and also one or two changes which I would like to make.

I realise that not everyone has the freedom to make this choice because of their family commitments, if my children had been much younger or my husband still alive my decision might have been different, but we must take the course which is best for each one of us.

How much is one's attitude to life attributed to nature or nurture? My father died when my brother was two and I was ten, which left my mother a single parent in the days when the difficulties of this group of people, both emotional and financial, were not recognised. Despite this she put a smile on her face and set about the task of rearing us, and I can look back on a happy childhood, even through those turbulent teenage years, Oh yes I learnt a lot from my mother! Then I was fortunate to marry Alan who was not only my husband but also my soulmate. We were blessed with four children who have grown to be a source of great joy and comfort especially since their father died. They in turn married four lovely people and I now have nine grandchildren to enjoy. Last but not least there are friends also. It is a privilege to share the joys and sorrows and problems of their lives too. Yes there are lots of blessings for which I give thanks.

My faith is also a powerful factor in my life. I firmly believe that God will be with me whatever lies ahead. This was definitely proved to be true when my husband Alan was dying; there was a deep sense of peace. This is the peace I have, now that I know I have not much longer to live.

So, all in all, what is my philosophy for life? It is your life and only you can live it. Enjoy as much as possible through the storms and setbacks and accept the things you cannot change. Now I can add I am going to do my utmost to help those I love and myself to enjoy every moment we have left together.
Ann Hipwell
Wantage, Oxon

Editor's Note: Sadly Ann passed away shortly after writing this tribute to her family and friends. I would like to thank her family for allowing it to go to print.

Reflexology and me

On 16th December 2002, it will be my 5th anniversary, although it has taken a while to get over not being able to have children and struggles with HRT, I'm glad to say that I am happy and well (I was diagnosed at the age of 32).
During chemotherapy, I experienced reflexology for the first time at a local cancer centre where I lived. At the time I didn't realise how beneficial this wonderful therapy was, as being so relaxing!

The concept of this therapy intrigued and fascinated me, so little by little I started to read books from the library about it. The more I read the more I wanted to learn. I went on to enrol at college and I qualified in April 2000 with the Association of Reflexologists. I work in a health clinic three days a week and in the Ovacome office along with the 'A' team!

So what is reflexology then?
Well it's a therapy in which pressure and specific massage techniques are applied to reflex points on the feet and hands. It is based on the principle that these reflex points correspond in their arrangements to the structure of the body and relate to the organs, glands and systems within.By accessing these reflex points reflexology can be used to restore and maintain the body's natural equilibrium.

Is this a new therapy?
No, reflexology has roots in many cultures. The earliest recording of a therapy in the form of reflexology is found in an Egyptian tomb drawing, dated 2330 BC. Reflexology was introduced into Europe in its present form in the early twentieth century.

Does it work?
Since reflexology treats the whole person, not just the symptoms of the disease, most people benefit from it. It brings relief to a wide range of conditions, and is suitable for all ages. Reflexology is not a cure for a specific illness and no such claims as such are made. Go out and try for yourself, the next time you have a headache press the top of your big toe, you'll be surprised what happens!
Lisa Beardow
M.A.R.

Veronica needs help with diet

Ovarian cancer visited me in January 1991. Here we are nearly 11 years on and life is for living. That is what I learned from being given a second chance. I never forget how lucky I am but try not to let it get in the way. I have no complaints and lots of energy; !'m still working with my husband which necessitates a lot of travel particularly to the USA. We have a daughter and her family in Virginia - another reason for travelling. We have a son and his family close by - which give us a chance to be active grandparents. We play golf regularly and I have got my handicap down to 25 - not bad as I only started about seven years ago, and I'm 67 years young too.

My treatment for ovarian cancer was surgery followed by radiotherapy - no chemo. It must have been in its early stages and my two surgeons were marvellous, working together to make sure every last trace was removed, as far as was possible to tell. I had to recover quickly as my husband had just moved north to a new job and I had a house to sell, pets to care for and life to get on with. My married children and their spouses were wonderful and I found out who my true friends were very quickly. It is amazing how many people do not want to know - it is another lesson I have learnt and now jump in with all feet when any of my friends fall on more difficult times.

Every day for six weeks I drove over 60 miles for my radiotherapy, which surprised my oncologists, but gave me something to do. With my husband up north I did not have to come home and cook meals or do more than walk the dogs and clean the house ready for the next potential buyers. All in all I was lucky.

Where I would like help, from anyone who has had similar experiences, is with diet. Owing to the burning of the intestine from the radiotherapy treatment I now have difficulties with diet. It took me ages to discover what a disaster oranges were - only when I met a lady who had had the same treatment, but unfortunately had been left with a colostomy due to the damage, did I learn that - and I was an addict before.

I cannot manage red meat - no worry here, as I'd prefer to be a vegetarian but cannot digest the required pulses and nuts to achieve enough protein intake. Everything I read from Ovacome insists on a high fibre diet with plenty of fruit and vegetables. I have to keep on a LOW fibre diet with very few well cooked (i.e. over-cooked) vegetables, and just a hint of fruit or I am in trouble - in fact it is referred to in the family as mum 'borrowing' her food (meaning that it hardly touches the sides!). Fatigue seems to alter my ability to digest too.

This is all very well when I am home, or can pace myself, but it becomes a problem when travelling with clients or entertaining etc. I cannot counteract the effects of 'borrowing food' with Imodium, for example, as this is too drastic and then I get into all sorts of trouble. I get bored with living on boiled rice - though a trip around China required that, and who knows what delights await me when we travel to India in February. I finally got to see a dietician, just the once, after trying for several years. She just said "if it causes you trouble avoid it" - not a lot of use really. If anyone can give me any tips, ideas or thoughts on the problems of post-radiotherapy diet, please write: I would be really grateful. I am aware that treatment is much more precise these days, but I have no complaints if, perhaps, I was given too high a dose. That was in 1991 and progress will have been made in dosages etc. I would have accepted twice the dose to make sure that this thing was destroyed. And I am alive and enjoying every moment of it. I must say that a supportive husband and fantastic children, their spouses and grandchildren have all given me the spur and support I needed, just by being there and treating me as though nothing different had happened. Life is good, thank God.
Veronica Mosely
Address available from the office

Editor's Note: I think Veronica's last point is so important: it seems that many women just want to be treated as if there was nothing wrong (unless we say otherwise of course).

Volunteers needed

Why not share your experience of ovarian cancer via an award-winning website?

DIPex is an Oxford based charity with a unique website - http://www.dipex.org/ - based on in-depth studies of patients' experiences of health and illness. It links video, audio and written interviews with evidence-based information about health problems and treatment options. It aims to identify what matters to people with a health problem, show what it is really like for the patient, and provide support, accessible evidence-based information and answers to patients' questions.

On the site you can watch, listen to or read clips from their collections of interviews with people talking about their own experiences of illness. They gather together and summarise what people say about signs and symptoms, diagnosis, treatment options, side effects, and impact on the family. You can find reliable information about the illness itself, answers to questions raised during the interviews and links to other websites, support groups and publications.

DIPex offers 24-hours a day support for patients, families and carers, a patient-centred perspective to researchers, managers and those who commission health services and an excellent educational resource for health professionals.

The DIPex website contains modules on hypertension (high blood pressure), prostate cancer, breast cancer, cervical screening and cervical caner, and testicular cancer. Volunteers are currently being sought to contribute to a module on ovarian cancer.

If you are interested in being interviewed please contact Julie Evans, Senior DIPex Researcher at Oxford University Department of Primary Health Care, Institute of Health Sciences, Old Road, Headington, Oxford OX3 7LF; tel: 01865 227134/226672 or e-mail julie.evans@dphpc.ox.ac.uk

About Fone Friends . . . and Lorna

Our system has changed so that we don't have our duty rota these days, so there is no occasion to use my counselling skills on an initial call. I have tried phoning the odd person marked 'willing to talk to others' but I find it very uncomfortable … almost like a sales person 'cold calling'. Might I suggest that it would be so much better if someone wanting to talk were encouraged to make the first call?

There are not many of us in Scotland, especially in the far north like me. More women who have ovarian cancer than are willing to appear as members of Ovacome: this is, I suspect, because we are psychologically/sociologically different … more inclined to stick to our 'independence' and our families. Lorna Calder and Laura Adam are two people who got in touch with me, and it has been a rewarding friendship for all of us. I meet Laura from time to time, as we sometimes call in at Dundee on our way to Edinburgh.

I miss Lorna very much. Though there were a couple of 'near misses', we never met, but perhaps that's not important, given that we each knew what the other looked like, on the inside. Over two years' worth of phoning, we became friends, close friends, supportive, inspirational.

"You're inspirational, Barbara!" "Only because you are, Lorna!" Cards, messages, flowers, tapes passed back and forth … affection, understanding, perfectly timed. Once, I said "I wish we'd known each other before all this happened." She didn't hesitate: "Maybe we did." And I like to think that we shall recognise each other in some future state, too. I'll still be the lazy one (intuitively responsive, but lazy) and she'll be the lively, inquisitive spirit, loving and giving and constantly evolving … after all, she was the one whose quest took her and her rucksack from Caithness to Bristol, and to Edinburgh, seeking a Right Way for her final chapter … during her final chapter!

Perhaps it all sounds like exaggeration. After all, we were 'only' Ovacome Fone Friends. But when her husband Steve phoned to tell me she had died, the only thing I managed to say was "I love her," which had to include all the sorrow for Steve, for children, for Lorna, for me, but also the feeling that she was free now. She had worked hard for that freedom.

We did enjoy our long chats … lots of laughter, whimsy, courage, wisdom (we're all fast-forwarded into wisdom after we're diagnosed are we not?) I miss them now, but I still hold the essence of them … perhaps more powerfully for not actually having met the physical Lorna who wrote to me, during my own chemotherapy, "I send you rainbows, seaspray and golden rays." All this spirit and strength from a Lorna in the late stages of her own journey.

I feel privileged to have known this brave beautiful spirit. At the end, I felt able to 'help'. Steve's phone call alerted me and I was 'on duty', to be there 'with' her and the family as she worked her way through the final stages: a candle, flower and open window to echo arrangements in her own home, and supportive messages independent of any phone!

I still have the rainbows, the seaspray, the golden rays - all fruits of the Fone Friends tree?
Barbara Saunders
Aberdeenshire