Experiences

Talking to the Press

In the Spring of last year I was asked if I would speak to the press about my experiences of ovarian cancer. Like most people, I am naturally wary of anything involving the press, as what you end up with is not necessarily what you d said! However as it was the run-up to Ovacome Day and meant some badly needed publicity, I agreed. I had two requests of the interviewer, the first was that, if there should be any financial remuneration, it should go to Ovacome. Obviously ovarian cancer does not come in the same league as ‘life with the Beckhams' , so that one bit the dust. The second was that Ovacome got a good plug. I asked for the same for Tenovus, the local cancer charity which had given me a great deal of support, but even though I spelt out the name, they still managed to get it wrong in the article.

The interview was conducted over the telephone by a female freelance journalist for the Mail on Sunday features magazine. The interview took about 45 minutes. Believe it or not, it s quite difficult to know what is of interest or relevance, and what is not. What ended up was more or less what I said "but not necessarily in the right order" in the immortal words of Eric Morecambe! Essentially, it highlighted the subject matter, and that was the primary aim.

The results were quite surprising. From Ovacome s point of view, the week following the publication of the article, the office was besieged with phone calls, and I'm not sure that I was flavour of the month with the office staff! Still the aim was to raise awareness of ovarian cancer, and it certainly did that. On a personal basis, I had calls from relatives and acquaintances countrywide who were unaware that the article was going ahead. The other thing was that some people locally who had avoided me since my illness was diagnosed seemed to find me socially acceptable again. I am sure there will be people reading this article who will be able to relate to that.
Was it worth it? As far as the publicity and raising awareness of ovarian cancer are concerned, a very definite yes; but on a personal basis, I have no future plans to engage an agent and go in for guest appearances!
Rosemary Williams
Wales

I feel lucky

"I feel lucky" I said to a friend on the phone recently when talking about my experience of living with cancer. My comment was greeted by silence, I could almost hear him thinking "is this woman for real?" Given that five years ago I had been diagnosed with Stage 4 ovarian cancer, had surgery, two bouts of chemotherapy and a recent check for a lump in my left breast....

Rational thought and blind faith.                                                             I feel lucky because the coping strategies I employ today are the result of rational thought and blind faith. I have arrived at a point in my attitude to life which I could not have previously imagined possible; like most people the thought of getting cancer filled me with fear and dread - that is until I got it.
Initially my ignorance of the condition was spectacular, I went to my GP and thence to the hospital blissfully unaware of the seriousness of the situation. I can still see the bemused expression on one doctor s face when I asked "what comes after stage 4?" Then the process of dealing with the illness took over, my friends and family were a revelation to me, for instance a friend from childhood insisted we go to Lourdes last year. I knew she was secretly hoping that I would improve, but I pointed out that I was happy to accept what Lourdes had to offer.

Life, fun and spectacle
Needless to say I was not cured but I did have a great time. I thought Lourdes would be stuffy and very religious, but not at all; on the contrary it was full of life, fun and spectacle. The result of that trip was that I finally decided to move to a lovely flat nearer my relatives. I am busy at present making changes to my new home, and developing new interests.
I was lucky in my dealings with the NHS; much is written about the difficulties encountered by many people, but I did not experience these. From the beginning all my needs were dealt with promptly, efficiently and sympathetically. My GP had me admitted to the Royal Brompton within 24 hours of my first visit, and I was diagnosed immediately and referred to the Royal Marsden next door. In both hospitals the staff were kind and the support services most helpful, from rehabilitation through to the Social Services. Given that this was the first time in my life I had been admitted to hospital as an inpatient, I feel really lucky to have come across these two hospitals.

During this period of my life I engaged in a steep learning curve, one does not always appreciate how much knowledge, skills and experience each of us has that can be brought into play when dealing with new situations. Retirement allowed me to take life at my own pace, what a luxury! Having spent all my life from the age of four years in an education setting, this was the first time in my life when I was not subjected to the hectic routine of school either as a pupil or teacher. Now when I am well I take great pleasure in seeing friends and visiting places I would not have had the time to do before.

I do not want you to think that I am home and dry, far from it. Cancer still continues to challenge and forces me to continue with my personal development. I have always known that the most treatment can offer is a remission. My CA l25 marker continues to rise. In November 2000 I received more chemotherapy which was partially successful and I know that I will have to have more treatment in the future. As one of the nurses said to me "regard your condition as chronic, which means having treatment from time to time."

Experience can help you
It is amazing how experience can help you through a difficult time. On the last course of chemotherapy I had to have a line inserted into my arm. The line and its supporting drugs meant that I spent an awful lot of time attending the hospital to get problems sorted out. Thank goodness I was single and could afford the time. I had made a promise to myself that I would not allow the endless visits to get me down. I had also learnt distraction techniques which lessened my memory of pain. Both of these approaches helped me to put the inconveniences of treatment into perspective.

As I have said before cancer continues to challenge. In January 2002 I found a lump in my left breast which luckily turned out to be non-malignant. The prospect of having to deal with two cancers left me - to say the least - downcast. But only for a few days. Then I made another discovery about myself, I discovered that I could exert a degree of control over my feelings and attitude. I came to the conclusion that whether I was miserable or positive neither were going to change the outcome of my cancer. It is advances in medicine which will provide the answer.

Label the boxes
If I was to enhance the quality of my daily life, I would prefer to develop a positive attitude rather than being unhappy. So I visualised two boxes, one labelled ‘misery' and the other ‘positive' . In the former I put all those fears, doubts and anxieties which bubble to. the surface and which have to be acknowledged from time to time. Into the other I put happiness, contentment, friendship, sunlight - in other words those things which I find uplifting. I believe that if depression can adversely affect health, then positive thinking should enhance it.

Personal coping strategies
I feel incredibly lucky to have found personal set of strategies which help me cope at present. That is not to say that the day the doctors tell me that there is no more treatment they can offer I won t collapse in a heap. But that is for the future and hopefully when the time comes I will again find more strategies and people to help me cope.
Mary Doyle

My feelings

Why me? Why me? My body cries
As tears well up into my eyes.
I want to live, don't want to die,
Please help me God, my soul does cry.

It only seems like yesterday,
I waited for the Doc to say
‘Your scan is clear, your fine and well'
But it wasn't what he had to tell

I'm sorry to tell you this my dear,
It's not good news, your scan's not clear.
You've got the great big dreaded ‘C'
Was the dreadful news he gave to me.

It's just not true, my body cries,
But the proof is there before my eyes,
I know now, what this means to me,
A total hysterectomy.

Three weeks later off I go
To the theatre down below.
In the doctors I put my trust
To beat this thing. I know I must

Scared and lonely I go to sleep
Praying the Lord my Soul shall keep
I come around back in my bed,
It's all over now the nurses said.

Four days later home I go,
Feeling down, sore and low.
My wound bursts open, what a mess
Back to the hospital, is my guess.

But thankfully that's not the score,
The district nurse comes to the door
We'll sort that out, she says to me,
We'll get it healed, just wait and see.

Daily dressings, tender care,
Don't you worry, we'll get there.
Six weeks later as she revealed,
Diane left, my wound completely healed.

Back to the hospital, I do go,
What future treatment? I must know
Chemotherapy, I have to face
In a strange and unfamiliar place.

But the nurses there are caring and kind,
They know what s going on in my mind,
Will I be ill? Lose my hair? Will I die?
Not if we can help it!, they all cry.

My husband is great, washing pots and pans,
But how I feel he doesn't understand.
He's loving and caring and supportive to me
He cooks all the meals, and makes all the tea.

But at night, when I lie awake in my bed,
Tossing and turning - things going round in my head.
There's really one thing that I'd love,
I just want my husband to give me a hug.
 But he's fast asleep in a world of his own,
I try not to grumble, I try not to moan.
The chemo is making me depressed and quite low,
The next one's on Tuesday, I don't want to go

Then I think of my friends and my family,
What would I do if they didn't love me?
My son's getting married in July of this year,
That I won't be there is my greatest fear.

Of course I'll be there, you wait and see,
This ovarian cancer won't beat me!
I've now got a wig, ‘cos I m losing my hair,
But I m positive and determined that I shall be there.

Eleven weeks gone since I had my op,
Some days I'm down, some days on top.
I think of the future, and what it will be,
I think of what s happening to my body and me.

Will the treatments work, that I don t know
There are still five more chemo s left to go.
I'll put my trust in the Lord, he's my destiny,
God willing, I pray that he'll spare me.

If the cancer I've got cannot be cured,
Again I'll put my trust in the Lord,
I'll not give in, I'll fight to the end.
I've got faith, my family and lots of good friends

So what the outcome of my life shall be
We don't know, we'll have to just wait and see.
I thank all those people who've given me time,
I'll make the best of this life of mine

To the doctors I offer my sincerest thanks,
And to all of the nurses, whatever their ranks,
Without all these people, what would I do?
So doctors and nurses I praise and thank you.

Thank you again for all you have done,
With your help, we hope, the battle is won,
If the doctor tells me my cancer is cured,
I'll give praise to the doctors, nurses and to the Lord.

That the battle is won, I d just like to know,
But we're just at the beginning, a long way to go.
It would be nice to know a cure is to be,
And my life and my body, again belong to me.

I'm really all right, I've accepted my fate,
I'm a little bit sad, but not full of hate,
So forgive me, my friends, if you ever find me
Sitting and crying and not full of glee.

Life's full of surprises, that we all know,
I'm down at the moment, but up I shall go.
Maybe later you'll find me happy and bright,
Determined once more to fight the good fight

Gill Bond
Staffordshire
 

Editor's Note: Thank you, Gill, for having the courage to share your feelings with us, many of whom I m sure can identify with you. What especially comes across is your sense of anguish and isolation, and in recognising this, your determination to rise above your fears and get on with your next treatment. I m sure many of us have partners who can still sleep so soundly when we're wide awake! Nothing wrong with giving them a nudge to let them know that you might be feeling lonely and frightened, and need a hug: they probably need one too.

Gwyneth Baker's story

I hardly ever cry now. It is a little more than two years since I was diagnosed with cancer, stage 1, contained within the ovary. This cancer is usually found at a much later stage because there are no symptoms. Mine was discovered because I had an ovarian cyst. The surgeon thought he had removed all the disease but the cyst had burst during the operation. He could not be sure. Surgeons and oncologists, working together, decided I should have a course of chemotherapy because my cancer was aggressive. Treatment was just a preventative. It gave me a year of illness; nobody takes well but I took it badly. I couldn't face the sixth and last treatment, the cancer retreated and I felt safe for a while. Talking with a counsellor at my local hospice helped a great deal. Afterwards, at three-monthly checkups, it became apparent that it was consistently creeping back, not in a steady, level way but snowballing. I was offered a choice of three chemotherapy drugs: I refused. My husband John, so dear to me, was horrified, but from that day has not pretended that I might recover. This was a relief because nothing would have changed my mind.

Now I see my doctor at monthly intervals. Every interview marks a step downwards. I take painkillers. I rarely feel ill and I look well but am so extremely tired that I can do very little. This means that there is no time for anything I don t want to do. Each night I assess how good the day has been; if not good then useful. I aim to do the cooking and washing, John helps me when I run out of steam. I am fortunate in having so much support from my family. I still drive along quiet roads but not in the evening. I am too tired then.

I have rung handbells for twenty years. It is a lovely hobby and I give it priority. The team practises one night each week, when I become tired at practice I sit in the corner and shut my eyes. The team takes notice and they continue ringing without me. Bless them for that!

December we have seven engagements. I am prepared to rest all day to ring at a concert in the evening. This winter, for the third time, I have joined a writing class. Finishing my homework each week is sometimes considerable effort a but it gives me goal to achieve and keeps me focussed. I am writing a nativity and short stories.

It is a joy to see friends. In July I absailed to raise money for the hospice. Four months later I would not have been able to do it.I have written a book of Christmas is limericks which on sale in the shops. It has given me a lot of satisfaction. Chemo kills off cancer cells but it damages the immune system too. I am going the other way round. I am keeping my immune system as healthy as possible. I am in charge of everything except the cancer, I fancy that within reason, it doesn't matter which ones you choose. They all improve your chi, life force and therefore quality of life. All medical people who look after me have approved (perhaps it would be to say, not disapproved) of the choices I have made. I am lucky. I use homeopathy, my therapist is very caring and competent. I am fortunate to go to the hospice for acupuncture with lovely caring, qualified and enthusiastic practitioners. Sometimes I feel woozy afterwards and I sit for a while before leaving but the treatment raises my energy level. Also there I have access to a dedicated doctor who specialises in palliative care. The Hospice is wonderful.
Quite accidentally I found a healer. The first time she put her hands on me, a tremendously powerful healing happened, which took us both by surprise. I try to see her fortnightly. I take essiac nightly. This Red Indian herbal tea, thought by many to help people with cancer, feels very clean. I don t know what it does but it seems right to continue with it. I am being mothered by a friend who brews it for me every three weeks. Then there are vitamins. I take a supplement every day, including the usual ones but also things like zinc and selenium and apricot kernels which contain Vitamin Bl7. The supplement varies in content from day to day.

I go to a meditation group whenever possible. It feels good to contact the subtle energies surrounding us. It is part of my healing plan. Occasionally I have an aromotherapy massage which includes reflexology. This is quite a bundle but if I could only have one it would be difficult to choose. My recent blood test was satisfactory and the tumours have hardly grown in the last six months, however cancer is full of tricks, I can never predict anything. Faith comforts many people including me. I do not go to church but the church members pray for me. I am humbly grateful. My expectation is that life will continue after death and be good, I am aware of spirituality and have a belief in reincarnation.

This is my philosophy of life and cancer. Even now it has good aspects. There is no ideal time to leave my husband, sister, children and grandson. Therefore it doesn't matter when. I am afraid of becoming very ill, perhaps it won t happen. I expect the tumour in my liver will be the cause of death. If I am lucky it will suddenly become impossible.

I have been told that, when the time comes, drugs will help to shut down my systems so that I can pass peacefully into a last sleep. It sounds manageable.
I have chosen where to die. Not at home! That would be too hard for John and perhaps I will feel safer in the care of the medical establishment. I expect also that John will find my death a little easier if I have already left the house. I have made a list of people to inform and their telephone numbers. John would have argued against it but it is one of the few things I can do to help at a difficult time.

I have chosen bell music for my funeral. I hope a team will be available to ring it when the day comes. Naturally I have made a will.
Honesty is best. I feel trapped by my family's distress. I cannot make it any better. I don t pretend. Honesty is the best way. I have one problem and those I love have another. I thought that leaving this life was all my own affair so I have been surprised to find how many people wish me to continue. In some ways this is a special time. My death feels too early. I am mid sixties but the advantage is that I will be spared aches and pains of old age (that s a blessing.)

This account seems too rosy for reality. I did not mean that. I am not being brave and if there were any choice I would not be in this situation. It is in my thoughts all day and every day. I would prefer a swifter death. I tried to find a comfortable means of suicide but nobody gives such information and I am assured that no medics would help. I would not like to hurt my family, although I think it possible that I could be driven to bringing about my own death. Occasionally a black mood takes over. Its intensity is frightening but it doesn't happen if I keep up the calories. That's a bonus, slimming can be forgotten. I find that I need lots of food for my body to do running repairs from the havoc caused by cancer. I consider my meals are sensible. By no means would I adopt a severe diet. It s too late for that. I carry chocolate in my handbag as emergency rations.

I feel deep gratitude for all the professional people who have given their expertise and care so generously and to volunteers and carers in every field and loving friends. Macmillan nurses are wonderful and the ladies of Ovacome who have all had ovarian cancer, are always at the end of the phone. Cancer is a lonely affair but it is made easier by a host of friends and kindly people. Although usually at peace there are just a few times when I am distressed. One has to get over the word ‘cancer' before one can look at the illness.

I found it difficult to think in the short term. I don't buy clothes now though I may need different sizes. I still buy plants. The last time I bought toothpaste I wondered if I would need to buy more. (I will.) I m continually seeing people and doing things for the last time. If I get more chances I will happily repeat. I feel grief sometimes or anger and resentment because of all the things I cannot do. Can you believe that I cried for my bike? All the things I planned to do sometime are sorted into two heaps. They are things to do now and things to forget forever.

Recently our cat left a dead mouse on the doormat so I left it there for our three year old grandson to find. ‘Who do you think caught that?' I asked, and from the bottom of his experience he answered, ‘Grandpa'. It was the first time he had seen anything dead. He touched its furry head and its stringy tail. The next week he spoke of death. Will that help him? Will he remember me?

Editor's Note: I'd like to thank Gwyneth for writing in and sharing with us her really frank account of her thoughts and feelings for her future, including the very touching way she helps her grandson to anticipate death, by showing him the dead mouse.