Experiences

Ruth Forbes Story

On 24 February 1996 I started bleeding fromthe vagina even though I had had a hysterectomy 20 years before. I was 66. My doctors seemed to think it was hormonal, though my first thought was cancer. I had an ultrasound scan in April 1996 and, since something needed investigation, a laparoscopy two weeks later. It was after this operation that ovarian cancer was confirmed.

My ovaries, the top part of my vagina and my omentum were removed at the beginning of May. A CT scan showed secondaries in the liver and I began Carboplatin chemotherapy at the end of that month. The chemotherapy made me very tired and after the fifth session I had to have two units of blood transfused. A CT scan in November showed no sign of the cancer and my CA125 had come down to 13.2.

I then had nearly a year of feeling very well looking after my health with diet and exercise. I went to the Bristol Clinic and liked some of their ideas but was not prepared to go on a vegan diet; nor did I like their ideas about HRT, which I had been on since my hysterectomy. I loved it, if it shortens my life, then so be it.

My attitude to cancer is that I grew it so somehow I have got to ungrow it (with help, no doubt). I have been an antenatal teacher for over 20 years, run a course called "look after yourself" and taught yoga.

I think of myself as a very healthy person who happens to have cancer. I was very shocked and frightened when I first saw the bleeding but since then I have come to terms with the fact and I am trying to enjoy life and keep as healthy as possible.

On 1 February 1998 I started to bleed again, and an ultrasound scan showed a small mass in the pelvis. I was referred to the Royal Marsden where a CT scan showed a mass in the pelvis, something in the liver and, I think, something in the abdomen. I still felt very well. I underwent a course of Caelyx to reduce the tumours. They have told me that this is not a cure just treatment and we are buying time what time and how much they do not say. My side effects were quite extensive as far as my skin was concerned. Tingling and swollen feet and hands, backs of heels very sore, under my arms, tops of my legs and waist and elbows all looked and felt as if they had been burnt. The skin peels, but the effects wear off eventually except for the tingling. I also suffered ulcers. So there was one week out of four when walking and eating were very difficult. However, I still continued with yoga, have lost weight and think I look really well.

In November 1998 I was offered radiotherapy in order possibly to eliminate my vaginal discharge which was coming from the tumour in the pelvis. The side effects seemed likely to be worse than the symptoms and so I turned it down. I was offered radiotherapy again in January 1999 in order to prevent a fistula (a hole between rectum and vagina). At the same time I was told that if the treatment shrank the tumour it might reveal a fistula. I went by my gut reaction and turned it down. I have decided to have no more treatment. I am getting increasingly more tired and my rectum can feel very uncomfortable from the tumour pressure: but I am looked after by an excellent palliative care team from a local hospice and they work in close cooperation with my equally excellent GP and consultant gynecologist.

I hope you find this story useful.
Ruth Forbes
East Susan

Rachel Solemani

We are very sorry to tell you that Rachel Solemani
died on Saturday 13th February. She had written several articles for our newsletter and, with the kind permission of her family, we shall continue to print them.

We extend our thoughts and sympathy to her husband, Akiva, and daughters Sarah and Anna

Zoe: from the Greek for Meaning of Life

I know many of you are trying to get pregnant when you have tumours on your ovaries, and so I write this for you. I've attempted to write many times over the past months, but where do you start to describe a few weeks which changed your life? At the beginning? Well, a bit before that.
I had two children, Alex and Abigail, and I wanted four. At the beginning of 1998 my husband and I decided it was time to go for number three. I fell pregnant immediately. I went for my ten-week scan and was told my dates were wrong: I was due at the end of October, not the twelfth. I thought “We’ll see”, I had not got my dates wrong before. A small cyst was noted on my right ovary, but there was nothing to worry about, I’d had them six years ago, and they had disappeared.

Everything was progressing well, I was getting bigger, and having to go to the toilet a lot, but this just went to show that my date was correct. The whole family went along to the twenty-week scan. The baby was checked over and then everyone joined me in the scan room to have a look at her. After the scan was over, I asked about the due date, and was told it was still the end of October. I didn’t believe it, I was too big. I don’t know why, except that a friend had just had a cyst removed while pregnant, but I asked the scanner to check the cyst. Let's be honest, what is the probablility of two friends being due within days of each other, both having pregnancy-induced cysts? But there it was, as large, well nearly larger than the baby. The following Friday “it” was removed and I later found that it was a tumour and not a cyst, but called a cystadenoma. What on earth did this mean, and more important, could I keep my baby?
Well this thing I had was so slow-growing that I could continue to full term and, if I really wanted to, have more children.

Zoe eventually arrived on 9 November, after an induced labour, weighing in at 8lb 13oz. Now I sit six weeks after having a full hysterectomy feeling astounded that I ever managed to get pregnant, let alone have a baby with all that going on inside me. Don’t get me wrong, there have been some great and funny times, not just Zoe’s birth. The first time Abi saw me breast-feed Zoe, she cried “Mummy, she bite you, she bite you” and some of the things my husband and I have laughed about are not printable.
After all, how many 34-year-olds can say they’ll never have another period or cervical smear test?
Nicola Spicer
Peterborough

Don’t give up!

A recent Watchdog Health Check programme highlighted the non-availability of Taxol as a treatment for ovarian cancer in some health authorities. I have had a personal experience of this.

I was diagnosed with ovarian cancer in April 1996 and was treated with carboplatin, which at the time was the favoured first-line treatment. Initial success was short-lived and by July 1997 my CA125 had shot up and another small tumour was detected by a CT scan. My consultant told me that the best treatment available was Taxol, but that my local health authority was not funding this drug at the moment because it was too expensive. I was horrified that I was being discriminated against because of financial considerations and where I live, especially when I was told that if I had private medical insurance Taxol would be available for me at my local private clinic – it was simply a question of money. I wrote in the strongest terms to my MP and the Chief Executive of the local health authority, but to no avail.

My family and friends were all set to raise the money for me to have the treatment privately. However, my GP refused to accept the situation and asked that I be referred to The Royal Marsden Hospital in London for a second opinion.

To my great relief, I was taken on as a patient there, participating in a case study being conducted on the use of Taxol in the treatment of ovarian cancer. My course of chemotherapy is just coming to an end, and although I have to travel up to London every three weeks, obviously I am getting the treatment I need and the results so far look encouraging. At The Royal Marsden, which concentrates on cancer treatment, I know I am getting the best possible care for my disease.

I consider myself very fortunate to be getting Taxol, but why should it be available in some areas and not others? I would say to anyone who is refused it locally – DO NOT accept that decision – as Anne Robinson would say “complain, make a fuss!”: it may literally mean the difference between life and death.
Jane Thomas
Hampshire

Gianine O’Shea’s story

I thought it was time to put pen to paper and tell other ovarian cancer sufferers how I went from rock bottom three years ago, at the age of 46, to how I feel now sitting writing this letter.

It all started in the summer of 1995 whilst living near Marbella in Spain. We had a serious drought for some months and during that time got what could only be described as very bad water through the pipes. Over the next year, I and many other people went down with very aggressive cancers.

At our local hospital I was diagnosed with a 10 cm ovarian tumour which sent me straight into a state of shock as I had lost three close members of my family with cancer. I couldn’t eat and quickly went from a healthy 9 stone to a very weak 7 stone.

We decided to go back to our home near Hastings, where I had the usual hysterectomy and six months of chemotherapy. Because I was already very weak this was when I hit rock bottom both mentally and physically. Fortunately my wonderful husband was a pillar of strength and nursed me through the many months of my illness, and I began to think we could put this behind us and start enjoying life again.

That was until the second shock came in October 1997 when I got a phone call from the hospital to say that my previous tests had shown the cancer cells were active again. I remember just going to my room and feeling that this was the beginning of the end. But through the tears I managed to say a little prayer asking for a miracle. Strange as it may seem, I’d always believed that angels were looking over me: because all the good things that I’d wished for had come true in the past. This was to be no exception, as within a couple of hours there was a knock at the door and a woman whose husband had recently died of cancer passed me a leaflet entitled Calling of an angel. I read it with great interest. It was all about a herbal cure called Essiac. Although I am usually a bit of a sceptic, I phoned the number in Wales and this lovely sounding lady gave me my first bit of hope by saying “take the Essiac I will send you and you’ll be fine”. This was music to my ears as the doctors at this stage just classed me as terminal.

Well, I started taking the Essiac and a few weeks later returned to England for my second six months of chemotherapy. I finished this with very few problems in July 1998. We returned to Spain in October for the winter months where I have been studying alternative cures with the help of Diane Chapman’s book, which is, by the way, the most informative book I have ever read. Then a couple of months ago, I met another wonderful lady here in Spain who was interested in helping people with cancer. Although her studies and remedies are a bit too complex to go in to, she has helped me to understand much more about how cancer behaves and how to cure it the natural way. I have been following this route with an almost vegetarian diet, and yet another person was helping me for no financial gain.

I was due to go back to England in December for the dreaded CA 125 blood test, but just before Christmas I found that I could have the test done here in a local laboratory. After just one week I went back for the results, knowing that a simple printed number would make or break my Christmas, let alone my future. Well, after reading the number 7.4 I felt better than someone winning £10,000,000 on the lottery. So now I feel it is time to tell other cancer sufferers of my story. If it helps just one person it will have been worth my time writing it.

By the way I would be very interested to hear from anyone with a similar story involving any alternative cure.
Gianine O’Shea
Malaga, Spain