Experiences

"I want, and can't and nobody will"

Feeling helpless, want to change the world but you can't make your voice heard?

I have now been involved with OVACOME for nearly two years, since I finished my chemotherapy. My Macmillan nurse talked to me then about my cancer journey and I had no concept about what she really meant! BUT I do now. Everyone reacts to the news of their cancer in different ways but one thing is sure - not one of us want to be in the position of having to deal with our cancer. We worry, or we are angry, or we want to change the situation for all women. None of us knows how our bodies are going to cope. None of us knows how our brains are going to cope. We ARE frightened, or we deceive ourselves. My reactions have moved from wanting to raise money to fund the research work to wanting every woman to be educated so that she can protect herself against ovarian cancer. While we are waiting for a screening test to be perfected, it is important to reach out and raise awareness. Important to talk to as many people as possible. Always be VISIBLE with OVACOME merchandise. Educated so that we all listen to our bodies and not fill them full of baddies that do us no good (see Patrick Holford's SAY NO TO CANCER (reviewed on page 9). Educated so that if we, or our fellow females, have a series of medical problems we can cope with the situation. My journey has come to a milestone. I have come a long way. I can look back and measure my ability to cope as a result of being involved with OVACOME. It has opened doors to real friendships - people who have found the importance of life and living. I have my support groups, my "fone friends" in the Midlands, my "adopt-a-hospital" gynae nurses, other committee members and my local ladies groups. I represent you all when I meet or write to important members of the public. I have my life and I am not going to waste it as I have done in the past. I so enjoy reading the letters and articles in the Newsletter, especially memorable have been the ones written by spirited ladies.

We can't all be the same but we can stand together to show the public we are here and want our voices to be heard. We can make a difference.
Helen Bayley

Hair today,gone tomorrow!

Since being diagnosed as a Stage III ovarian cancer patient in April 1999 I have gained the impression that, apart from the deep-rooted worries about the disease itself, the next major concern seems to be the loss of hair due to chemotherapy. I thought that by jotting a few notes, I could share my feelings on this subject.

My illness was diagnosed very quickly once I'd seen my GP with slight pain in my left side and abdominal swelling. I was referred to a gynaecologist, who sent me for a CT scan, which showed pockets of fluid in the abdomen. Further tests showed cancer secondaries and I was referred to a cancer surgeon. The laparotomy revealed a 'frozen pelvis', which meant that the ovaries, pelvis and all surrounding organs were stuck together and total hysterectomy was ruled out as too dangerous.
It was agreed to try a course of Carboplatin and Taxol and I was advised that I would probably lose my hair. In anticipation of my hair loss and not wanting to find my pillow scattered with hair every morning I asked my hairdresser to cut my hair very short. This actually looked very good. Three months later the chemotherapy was working and I had lost all my hair apart from a little tuft on the front of my head, so I looked rather like the All Black rugger player Jonah Lomas who had also just recovered from cancer.

To tidy myself up I had the tuft trimmed and selected an NHS wig with a chum. We had a very jolly session at the wig shop, collapsing with laughter as I tried on some weird and wonderful creations, eventually selecting the best of a bad lot from the non-NHS wigs. I also tried the turban headgear on offer but between the two I didn't feel comfortable. It was fashionable at that time for young pop-stars and others to shave their heads. So although I am well into my 60s I thought let's go for it! It was a most interesting experience. Now and then people did stare, and in one restaurant in Ireland I seemed to create quite a sensation, and realised that I'd been confused with Sinead O'Connor, the pop-star, whom I did slightly resemble.

A couple of months after the treatment finished my hair started to grow again. But, oh horror, it came up in thickish grey curls. My normal hair had been very fine and more or less straight. I hated my new look so I made another visit to the hairdresser and had it cut very very short again. The hair grew soft and straight but very grey. I felt I looked very old, tired and ill.

Right, I thought, I'll colour my hair and instead of selecting a sensible colour like brown or black, went for bright gentian red. As you can imagine this caused a sensation in the family, but really did suit me, made a great conversation piece and cheered me up no end. I thought I am old, tired and ill but being red-haired was a real morale booster.

Feeling rather better and in remission we went to Paris for a few days and the new colour really made people stare, especially on one evening when we went to a delightful restaurant just off the Champs Elysees, which was full of Japanese tourists who all looked amazed at my hair colour. In Japan red hair is as rare as being an albino in this country. Another day we were having a quiet drink at a sidewalk café when a couple of young men passed by with bright green and blue hair. They pointed at my hair and we all laughed. Paris is a great place for losing one's inhibitions. I didn't care for the purple hair a young girl was sporting when we went to the Louvre, but each to their own.
My remission unfortunately only lasted three months and it was back for several operations to remove gut obstructions and a further course of tablet chemotherapy. But no hair loss this time. Now two years on I am in sort of remission, the tumour is still growing albeit slowly, and I haven't decided what to do with my hair which is now a soft texture and a pale grey.

I think I'll go for a soft brown for a change. I can always wear a hat if I don't like the colour until it grows out. But that's another story.
Judith A Roberts
East Yorkshire

Inspirational Diane loses her battle

I know many people will be saddened by hearing of Diane Chapman's passing in February this year.
Since I first met her five years ago I have been greatly inspired by Diane's approach to her illness. I know I was not alone in my regard for her as she was nominated on four occasions for CancerBACUP's Patient of the Year award. Her positive outlook and wealth of knowledge encouraged many women to look into alternative approaches to their illness. She was always willing to listen, encourage and share her own experience of ovarian cancer even when she was unwell herself. Her book Choices, which covers an extensive range of complimentary therapies, has been used in hospitals throughout the country.

Her daughter Hannah said: "I do not want people to feel sorrow for me. Some children spend a lifetime with their parents and never form a successful relationship. My mum and dad were my best friends and I spent 18 wonderful years with my dad and 21 with my mum. I feel very lucky."
Ruth Payne

A tribute to Diane Chapman

Ovacome members will be very saddened by the news of the death of Diane Chapman in February this year. We have all come to know her through her regular articles in the Ovacome newsletter, the terrific effort she put in to produce the With Complements book in 1997 and, of course,, her tireless work with the Fone Friends network.

I first got in touch with Diane in 1996, through Fone Friends. At that time we were both in remission after surgery and chemotherapy. All too soon, however, we both suffered relapses, which started us on a rollercoaster of chemotherapy and self-help complementary therapies, which many Ovacome members will identify with. I, like many other members, shared experiences with Diane over the phone, and exchanged information on treatments and new research which is something that epitomises all that is good about the Fone Friends network.

She was a remarkable lady and was an inspiration to many of those who came into contact with her. She battled ovarian cancer for over six years against the odds. Twice she was at death's door but managed to turn her condition around. So what are the lessons we cancer sufferers can learn from Diane's life?

I believe that positive thinking is of major importance, for Diane the glass was always half full and never half empty. Having the right balance of accepting what is happening in the present with hope and determination that things can get better in the future. Diane believed that target setting was a vital part of her survival and I agree. There can be long-term goals and even short-term goals if you are going through a period of tiredness and ill health. Doing and appreciating the things that give meaning to life. Counting your blessings can always change your mood - things can always be worse. Trying to understand the spiritual side of your nature can be of enormous help and comfort. Diane had a great capacity for giving and I believe that in the midst of our suffering if we can stretch our hand to help someone else we can gain as much as we give.

Diane lost her husband three years ago and her dearest wish was to see her only daughter Hannah through university. Hannah is due to graduate this summer and we wish her all the very best of luck for the future.

I do miss my Fone Friend Diane and her support as I am currently undergoing yet another regime of debilitating chemotherapy. I have had over 50 sessions of chemotherapy and 20 sessions of radiotherapy during the last six years, but like Diane it has not stopped me living life to the full and being grateful for every day.

I thought at times that Diane was invincible, but realise that she was something much more important which is inspirational, because that inspiration can carry on helping others even after she's gone.
Mavis Sabit
Bournemouth

Year 2000 - What a year!

On New Year's Eve 1999 my friends Glennis and Andrew came as usual. As we toasted the New Year little did I know what it held for me.

I had an operation for glaucoma on 11th January 2000 and just nine days after that I began to vomit. I remember one night so clearly not being able to bend my head, kneeling by the toilet all night. A few days later I had to go for a check-up on my eyes, thought I'd wear a skirt for a change, and to my dismay found I could not get into a single skirt as I was so swollen. Later I went to the doctor, who gave me tablets to stop the vomiting, all to no avail. Finally I went to see Professor Grace on 26th February, and he wanted me in hospital the next day. I had a scan and on 29th February a Mr Murphy came to see me, asked if he could do an internal and then told me he was 99.9% sure that I had cancer. What a shock!!! The next day a woman came in drawing round my stomach and having me practising how to use colostomy bags. That evening I told Mr Murphy did not want a colostomy - as he was operating the next day. Mr Murphy did the operation and was I came round he was by the bed. He said that he had taken away the ovary but he hadn't done the colostomy. He said that it should have been done but he hoped that chemotherapy would do the trick. Dr Allerton (the oncologist) came to see me on 13th March and told me that there was over 50% of the cancer left. I was so frightened. I came out of hospital that day and went to stay with my aunt and uncle. I went to Wordsley Hospital on the 21st March and was told that I was suffering with Grade IV ovarian cancer. My chemotherapy commenced on 24th March.

For about six weeks, every night from that date I used to go to bed at my aunt's house at 6.30pm and when they had the TV on I would shut the bedroom door and scream my head off under the sheets. I was petrified. However, one night when I was screaming as usual someone spoke to me. This voice said "What on earth are you screaming for? If you die it won't be so bad, you'll be with God - or you'll get better." (My mum died when I was 2, and my dad remarried, so I was reared by my aunt and uncle). I don't know what it was, but from that moment on I had an inner peace and began to get better.

I remember Kirsten (the sister in the unit where I had my chemo) saying to me "You know, Pat, you seem to be better every time I see you!" I had another scan in June, saw Dr Allerton and Mr Murphy and was told another operation was necessary as some more lumps had shown up around the colon. However, when I had the operation, to the joy of everyone the cancer had all gone and the lumps were all abscesses. I had more chemo when I came out of the hospital and so far I am in remission.
What more is there to say than "Praise God"!
Pat James