Experiences

Marilyn's story

In March Marilyn's family held a party to celebrate her mum's 80th birthday. Because of Marilyn's ovarian cancer experience, her mum requested no presents but asked people to make a donation to Ovacome, and Marilyn sent us a cheque and her story. Sadly, Marilyn passed away unexpectedly shortly afterwards and we are grateful to her husband for his permission to print it.

2002 began sadly for us. My husband was recovering at home after having a prolapsed disc removed. Then we had a call to say that a very dear friend, my husband's schoolmate and best man at our wedding 33 years ago, had died suddenly while on holiday abroad. We were unable to attend the funeral, as my husband could not sit for the long car journey. We were so upset that we could not be there. Two more friends died in January and we found it hard to believe, suddenly feeling very aware those lives can be cut short too soon.

We were looking forward to a gentle walking holiday in Yorkshire in March before my husband returned to work full time. But the week before, I had started to feel a dull ache low on the left of my abdomen and across the pubic bone area. I'd put on a little weight and felt bloated. My GP who examined me and looked concerned. He said that he could feel what might be a large ovarian cyst. He sent me straight to our local hospital, where I was admitted and blood tests and scans were carried out. Three days later I had an urgent hysterectomy. Both ovaries, the fallopian tubes, uterus and cervix were removed. Although cancer had been discussed as a possibility, after the operation, the surgeon was initially reassuring. The cyst on my left ovary had been large; it had felt and looked like a dermoid cyst. It had been mobile; there were no adhesions, no fluid in the abdomen and the adjacent organs looked healthy. The surgeon explained that most dermoid cysts were benign and he hoped the biopsy results would confirm this.

Physically I recovered well from the surgery but after discharge from hospital, physically very tired and emotionally fragile, I began to have panic attacks, became confused, could not concentrate on anything and very worryingly started 'hearing voices'. A concerned friend rang my GP and asked him to call after she had found me in a confused state.

My GP asked me if I would agree to be admitted to the psychiatric ward of our local hospital as a voluntary patient. I did not want to go, but knew that I needed help. I spent five days there and they were the worst days of my life. For the first time I had come face to face with the reality of mental illness. But it is an experience I have learned from, but still find very difficult to talk about. Fortunately I recovered quickly from what had been an acute nervous breakdown, probably triggered by post-operative shock and anxiety.

Five long weeks later we saw the surgeon for the biopsy results. Against all his expectations the cyst proved to be cancerous. I had stage 1a ovarian cancer. The tumour had been confined to the cyst, but had been poorly differentiated, because of this he recommended a course of chemotherapy. I was referred to an oncologist at another hospital, as our local hospital does not offer cancer treatments. By the time I had started my chemo I had joined Ovacome and visited the various web sites.

I chose to have Taxol and carboplatin chemotherapy. My hair fell out two weeks after the first treatment, which was very distressing even though I knew it was going to happen. I was well enough to continue working through the treatment, only having to have the actual chemo days off work. Further surgery was recommended after my fourth chemo, as the omentum hadn't been removed during the first operation. The surgeon explained that the omentum and the nearby lymph nodes are often the first site of any spread of the cancer. It meant a second operation, but I was willing to agree to anything that gave me a better chance of long-term survival. The biopsy results from the second operation were clear and I had my fifth chemo session two weeks after the operation. Having 'sailed through' four chemo sessions, my fifth and sixth sessions affected me much more, with more pronounced side effects.

CT scans and a CA 125 blood test since finishing chemo in October last year have all been clear. I am feeling well and have just returned from a week's holiday in Tenerife.

The statistics for ovarian cancer make depressing reading, but the women who tell their stories to Ovacome are a source of inspiration to us all. Life has become very precious. I look forward with optimism and am so thankful for my close family and steadfast friends who have supported me when I needed them most.
Marilyn Haigh
Buntingford, Herts

Our very special Ellie

Before she died Ellie Oughton said that "although she had only been alive for 41 years" she had had a wonderful life and she would not have changed it because of all the precious moments she had spent with her family.

Ellie didn't want everyone to dwell on her illness, but instead to celebrate the very many happy times we had with her, times when she was healthy and full of laughter and life. She was always full of energy and she really did make the most of her short time that she shared with us.

As everyone who knew Ellie would agree, she was a fighter and was always positive. You could put her in any situation, and where most of us would have given up and thrown in the towel, Ellie never would be beaten.
She was even born six weeks premature weighing only 5 lb 5 oz, so from the very first moment she came onto this earth she had to battle.

When I say Ellie was a fighter I also mean literally: when we were children at primary school I was being bullied by a huge boy. Ellie, my older sister heard about this, so what did she do? Tell the teacher or maybe go home and have a word with my parents? No, not Ellie! She walks up to this boy, grabs him by his tie, pulls him down to her level and tells him in no uncertain terms that "if he bothered her sister again he would have her to deal with". The boy, who must have been smart, never bothered me again.

This is how I feel she faced her illness, she grabbed it by the throat, looked it in the eye and told it that she was going to fight it and she did, all the way. Ellie even made sure that when she left us she would pick the time and place. She wanted to spend Christmas morning with Richard who she adored, Nicholas, Tanya and Jamie, watching them opening their presents.
I will always remember Ellie for how caring she was with people. She obviously realised this and decided to go on to have a career in nursing: it suited her down to the ground. After a time working in hospitals in this country she went to work in Zimbabwe, where she worked in a mission using her nursing skills for the benefit of others.

Ellie was the type of person who always saw the best in someone and many people would go to see her about their problems for advice: I know I did. She was never judgemental which is such a good virtue.

In all relationships there is always the policeman, the sensible one who pulls in the reins and keeps the family in check: that was Ellie, whether it was Richard being told "to turn the music down" yet again, or Nicholas to do his homework, Tanya to feed the guinea pigs or Jamie to get off the Playstation. These are just a few of her quotes that will sadly be missed. But this is not to say Ellie did not know how to 'party' and have a good time, many a summer evening would be spent in her back garden drinking Pimm's, laughing and joking probably to the annoyance of the neighbours as we watched the sun go down, and Richard being told to turn the music down AGAIN.

Ellie had a wonderful marriage to Richard, and her three children are a credit to her in every way and I hope they will take on board all the wonderful virtues that she possessed with them throughout their lives. They must remember that, although Ellie is not with us any more, she will always be watching over them through the good times and bad times and through every important milestone in their life's journey.

Ellie was a beautiful woman, a loving wife and mother, a wonderful daughter, a caring sister, sister-in-law, auntie and daughter-in-law. To all of us she was a friend whom we loved very dearly, she will be greatly missed by us all. Some people could live to be one hundred and they might never have shown the courage, bravery and love that my sister showed in her short time with us. We should all take comfort in the fact that Ellie is now at peace and she will always be there in our hearts and memories and they will never leave us for the rest of our lives.
Karen Baca
Enfield, Middlesex

An opportune rallying cry

At diagnosis it had seemed a very grim outlook indeed, cancer spread to the omentum, the pouch of Douglas, the peritoneum, and small seedlings on the liver. I didn't feel too hopeful at first; indeed once the initial shock began to wear off I sank fast into despair. I felt terrified and very despondent.
About the time that this emotional descent was beginning - after terrible, desperate tears - along with tremendous support from the nursing staff at Taporley War Memorial Hospital where I had gone to recover from the effects of surgery, a letter arrived from Japan. It was from my daughter-in-law's father, a man whom I have not yet met because I can't afford the trip, and he and his wife are not yet able to come to England although we share a three-year-old granddaughter.

It was a momentous letter. Shiro Harada wrote to tell me of his own battles with bladder cancer, twelve years of battling. I quote from his letter, because it helped me enormously and may help others:
"Dear Mrs Gill," he wrote, "I heard you have heavy ill. Please listen to me: you must conquer the ill, have strong fighting spirits against the Devil-ill… fighting spirits coming up from anger at the ill."

He went on to tell me about his three operations and several chemo treatments: "whenever I have bad troubles, doctor said to my wife 'he is going to death' but great strong energies came up into my heart not to give up. Listen, from now you must become selfish person - you have to face only devil ill; a patient has not a lot of energies. You must put all your energies at the ill. Get fight, Gill, good fight, Gill!"

He told me how he seemed to be in the clear at last and said "I guess the ill was tired out in fighting at me!" and continued that I must "live long for your children and grand-children - do you want to look your grand-children running around you with lovely laughing?" and lastly apologised for his poor English.

But I thought his English was wonderful. It was a real, rallying battle cry. It was exactly the spur I needed. I cried over it, for it was heartfelt. I showed it to all my friends. I marvelled over it. I read it again and again. And I have never forgotten it. We could all do with a letter like that when we are facing the worst. It gave me huge encouragement, great strength.

And so I am offering it to be shared with everyone out there who has cancer and is finding the going hard.

I have a daunting family history of ovarian cancer (my mother and four of her sisters all died of the disease) but I am not, absolutely not going to give in. No, I shall listen to Shiro and I shall make sure to "get fight, Gill, get good fight,Gill!"
Gill McEvoy
Chester

Editor's Note: Gill intends to raise money for Ovacome in September this year by holding an evening of poetry and mime. She is also doing a sponsored abseil with a friend.

A tribute to Helen Bayley

Helen Bayley who died recently will be greatly missed by all those who knew her at Ovacome. She was a real ambassador for all those affected by ovarian cancer.

I first got to know Helen when we were involved in a large exhibition in Birmingham for health professionals to raise awareness of ovarian cancer. Her ability to get the message across was amazing (woe betide anyone who tried to avoid our stand!!) and this together with her hard work, real dedication and concern for others were Helen's hallmarks.

In her role as Fone Friends co-ordinator for the West Midlands she was constantly putting others first, supporting and encouraging them throughout their cancer journey, even when she was going through treatment or dealing with bad news herself. "Give me a day or two to have a good cry and then I'll bounce back" was something I heard her say on several occasions, and bounce back she almost always did. Her enthusiasm and energy were contagious wherever she went and whomever she was talking to - whether women's groups or health professionals - she was responsible for telling hundreds of people about Ovacome and ovarian cancer. She had several imaginative merchandising projects which ensured that what she had said remained with those she had spoken to.

Evidence of the impression she had made on so many people was apparent at her funeral when I joined a huge number of others whose lives she had touched. She was a remarkable woman and a special friend who I feel privileged to have known.

Our love and thoughts are with her husband Stuart, and daughters Fran and Eleanor.
Ruth Payne