Experiences

Joan Hadden

In November 1994 I moved into a ground floor apartment in Helens Bay, a village on the shores of Belfast Lough. I was delighted to settle in this tree-surrounded area, mid-way between the homes of my two married daughters - my son works in France, great for Mum to visit on holiday!

I had an operation on my neck ten years ago for cancer and four years later a coronary. I now was having slight pain on my left side and losing weight. After three visits to my GP I was told I had irritable bowel syndrome. I got the impression he thought 'another middle-aged lady with nothing to do except worry about her health'.

My younger daughter is a Staff Nurse on the gynaecological ward at one of our main hospitals. She, recognising my symptoms, spoke to the consultant on her ward and he kindly arranged a scan for me. Within two days I was having my ovaries removed and was home for Christmas. (I then transferred to another GP!)

In January I started chemotherapy (carboplatin) - I went into hospital each month for a day or two for a blood test (isn't it amazing how painless or otherwise some staff are at taking a blood sample?). Sometimes I needed a transfusion, sometimes my platelets were down and I was sent home until they recovered themselves and sometimes they didn't have a bed! Despite the pressures they were under, the staff at Belfast City Hospital were wonderful - always ready to stop and talk. I have regular check-ups and so far everything is OK.

I am now the Fone Friend in Northern Ireland. Talking to someone who has been there and to be able to ask questions is so important. For example, I have had a very painful back since my operation - does anyone else suffer from this? Also I have put on quite a bit of weight - has anyone else, or am I just over-indulging?

I don't want this to be all doom and gloom - I have been able to enjoy my five grandchildren, aged between five years and three months. Amateur drama is my hobby and last year I was delighted to be able to act in two plays our society produced. I was worried the chemo might affect my memory, but with a lot of hard work I was able to learn quite a big part.

I look forward to hearing from local people and to getting Ovacome known in Northern Ireland.
Joan Hadden
Northern Ireland

Sheila Cullen

Looking back I now realise it was on holiday in Lanzarote in September 1996 that I developed unusual heartburn which I put down to holiday overindulgence. By the end of October I had to give up step classes due to sharp pains and signs of a prolapse.

My usual doctor was on holiday so I saw a locum. By this time my tummy was bloated but I put that down to holidays and middle-age spread. The locum agreed that it was definitely a prolapse and made an appointment for a consultation. By the middle of November no appointment was forthcoming. I was more concerned with getting a consultation before Christmas as I needed to have an operation early in the New Year in order for me to recover in time for two staff leaving in April (we run our own shop).

I then decided to go via BUPA as my husband has a company membership. I asked the surgery to refer me but again there was no response by the first week of December. Chasing them up, I was told that the letter had got lost. By the time I contacted BUPA Gynae, they could not give me an appointment until January. I felt desperate and was beginning to feel really unwell. I kept saying to myself 'Don't be such a baby, your mother has a prolapse and she struggles on with it'.

By the time the consultation day arrived, my waist had swollen by five inches and I felt really poorly. Even though I said I had a terrible pain in one side which felt like my ovary, the doctor did not pick up the symptoms. His response was that since my ovaries were not working (five years ago I had a partial hysterectomy), problems with them were out of the question. Surgery was agreed for the end of January.

Numerous cancer cells were found - but no primary tumour. My ovaries and vital organs were clear. I started carboplatin chemo two weeks later and all went well (my CA 125 count was back to normal after three sessions). However, after the fourth session I became really ill and my count shot up again. I was devastated to be told that the treatment was no longer effective as I had thought that I was home and dry.

I commenced a course of Taxol and after two treatments my count halved. After a very wobbly stage in the middle of the course where the consultant was unsure of the effectiveness of the chemotherapy, I have now finished eight sessions and am awaiting results. Fingers crossed everyone. I was very fortunate to have few side effects from Taxol (except for hair loss - rather chilly now) and felt extremely energised during my treatment.

I am sensitive to the issues of misdiagnosis that have been raised in some of the other accounts I have read. Initially I felt that the prolapse highlighted my problem as I would not have gone to the doctor so early had it not occurred. Now, however, I feel it masked the real problem and that the prolapse was as far as the doctors were willing to look.
Sheila Cullen
Hampshire