Experiences

Pat Bradford, My story

First I would like to say thank you for the Ovacome newsletter. It is so good to be able to read about everything and everybody who is concerned with ovarian cancer. It is so difficult to get information from other sources.

I have not written before as I possibly had a court case for medical negligence outstanding, but this has now been resolved with an out-of-court settlement.

I was ?5 years old and in good health. Most weekends I went out with a rambling club and walked 10-12 miles. In early October 1994 I awoke with severe pains in my stomach and was in such pain that I collapsed. My stomach was so bloated I looked at least six months pregnant. My husband took me to our local hospital, St Helier in Carshalton, as it is only five minutes away by car. I was examined and had x-rays to see if it was a blocked bowel or appendicitis. As it wasn’t and I was still in a great deal of pain I was admitted to a surgical ward. The surgeon decided that I had gallstones and the registrar decided I had a virus.

I had an ultrasound scan and the radiologist told me that I had large ovarian cysts that would need urgent referral to a gynaecologist.

When I saw the surgeon he told me that it was good news. I did not have gallstones so it must be a virus. I asked about the ovarian cysts and he just laughed, told me that everyone has them and that they were nothing to worry about.

I was still in pain and my stomach was very bloated, but I presumed that the consultant knew what he was talking about. I was then discharged and my GP was told that I had a virus.

About six weeks later I again collapsed whilst out shopping and was again taken to St Helier. I was admitted under the same surgeon. He still did nothing and some days later decided that I should be referred to the gynaecologist. As soon as I saw the gynae consultant he told me that I needed an urgent hysterectomy. The next day he performed a hysterectomy and bilateral oopherectomy. The pain had been caused by a burst ovarian cyst. The diagnosis was ovarian cancer and the findings were as follows: "pus was seen leaking from the ovarian cyst and the bowel was adherent to both ovaries. The pathology report showed a 10 x 8.5 x 5 cm moderately differentiated papillary adenocarcinoma of the ovary and the ascitic fluid showed mucinous carcinoma cells. The other ovary had a benign mucinous cystadenoma". (I only have this information as I put in a complaint about the refusal of the surgeons to act upon the first ultrasound.)

I was told that I would need chemotherapy and probably radiotherapy as well. I was later told that the hospital had decided not to give me the chemotherapy and that I did not need radiotherapy either. I was referred to the joint Royal Marsden/St Helier clinic which is held in St Helier Hospital. I had a CT scan at the Royal Marsden and was told the cancer had not spread and was graded 1c.

At no time whilst I was in the hospital was I given any information or advice. I was not referred to a specialist nurse, although I must say that all of the staff in the gynae ward were very supportive and they could not believe that I had been discharged without any treatment on my first admission.

When I was discharged I contacted the Sutton Community Health Council and they helped me to put in a complaint about my treatment. It went to a tribunal in London and the consultant was found to be negligent in not acting on the first ultrasound and not referring me to a gynaecologist. I was then advised to claim compensation from St Helier, and have just received a small out-of-court settlement from them.

Since my original CT scan I had a scan at six months and again at 18 months. I also have CA125 blood tests every six months. I have had no other treatment whatsoever. I have now heard that St Helier is refusing to treat ovarian cancer patients with Taxol.
It seems unbelievable that a large teaching hospital can treat patients in such a way. You think surgeons know what they are talking about – but I now know that I had all the classic symptoms of ovarian cancer – and they were completely ignored. I thought I was lucky that I did not need any further treatment: now I find it is just cost-cutting!

It is nearly four years since my operation, so I count myself lucky to be fit and well, but if taking some medication would enhance my chances of keeping cancer-free then I would like to know about it.

In memory of my wife Sue

My wife and I have been receiving your excellent communication for some two years. Sadly Sue died in January 1998, almost three years to the day after she was diagnosed as having "the silent disease".

Sue and I met at a reunion of friends in January 1995. Sue was a widow and I was divorced, we were both in our late 40s. We had known each other for some 35 years. We instantly hit it off and spent the whole evening talking about old times.

At the end of the evening I plucked up the courage to ask if I could come and visit her some time. After some agonising days we actually made contact and arranged to meet on 17 February.

On 15 February, however, Sue phoned to say that her stomach had swollen up and she had been rushed in to hospital for tests. Ovarian cancer (stage 1c) was diagnosed and on 17 February she underwent an oopherectomy. I visited her in the evening and, whilst the operation had gone well, she was very poorly indeed.

Sue was a great fighter and after only a few days she returned home, and I visited her the day after. This was the start of many such visits, all of which were satisfying because each time I saw her she looked that little bit better.

A month passed and the prognosis was looking better and better all the time. Her consultant and surgeon were very pleased with her progress and decided that chemotherapy was needed to complete the job. Sue sailed through the treatment and was improving constantly.

By early April we started talking about my resigning from the bank to look after her full-time and before we knew where we were we decided to get married. This we did on 19 May 1995: a wonderful but very modest wedding with just a few friends.

Our love for each other just grew and grew and we started looking forward to Sue continuing her improvement with only the inconvenience of monthly chemotherapy which she continued to take in her stride. We went on a cruise through the Panama canal into the Caribbean – a truly wonderful experience. Later in the same year we went to Marbella in Spain. The world was our oyster!!

By September the consultant could not find anything wrong with Sue and proclaimed that she appeared to be going in to remission. We were, of course, elated and that Christmas was a true source of celebration and thanking God for saving Sue’s life.

Another holiday in Cyprus followed and then after a CA125 blood test we were told the disastrous news that the marker had gone up from below 50 to a seemingly massive 3500. Our lives again were in fear and under threat.

Monthly hospital visits resumed, as did a new chemotherapy treatment, this time in tablet form. Sue again responded very well and the marker declined. 1996 passed with some disappointment, but again Sue was doing all right. 1997 came and in May we went to a wedding in Malaysia, visited Singapore and Bali, the holiday of a lifetime!! We came home in June tired but feeling great.

In August Sue again felt her tummy swelling up and after a short stay in hospital had 13 pints of fluid taken off. The same thing happened again in September, when 10 pints were taken, and yet again in October.
After this visit it was decided to leave a drain in Sue’s stomach. This proved to be very harmful. After only a few weeks her body was trying to rid itself of this foreign body.

Over Christmas and in to the New Year Sue was constantly sick. Consultants were informed and after a visit from our excellent GP Sue was admitted to hospital again, this time to have the drain removed and to be put on a new regimen of anti-sickness tablets.

The sickness did not stop and we all wondered what was happening. A CT scan was carried out and then the shocking truth was discovered: the disease had spread up the spinal cord and entered into her brain. The chance of this occurring was only 0.5% and so nobody had ever contemplated it.

Nothing could be done. Sue’s reaction was that she wanted to spend her last few days in our lovely home with her family. She died three days later.

Many questions go through our minds constantly. Sue’s children had to come to terms with their mother’s death only five years after losing their father.

For my part, Sue gave me so much pleasure over the last three years and hopefully I too gave her a reason to fight on. Our anguish of losing the battle never seemed real. All the time we thought that Sue would come though – we had so much to live for and yet it was all in vain. Sue never gave up hope to her dying day: now we that remain have to pick up the pieces. As a carer you feel that you are coping, the love for your partner sees you through. You do not realise what is happening to you. Such turmoil.

But life must go on. We must be positive and seek new beginnings.
The last three years took a lot out of me without my realising it. The stress and anxiety are now telling. I have joined a gym to get out of the old routine and to try to get fit again. You only think of your loved one when times are bad and never about yourself.

Ovarian cancer is the silent disease. Are we all going to remain silent and let it kill so many women?
Tony Spencer
Nottingham