Regular features

Letter from the Chair

At the time of writing, it’s just before Christmas and I’ve had a chance to reflect on things past and on what the New Year may hold for Ovacome.

With only a few short weeks to organise an important Fone Friends and Raising Awareness weekend workshop, Karyn Connor, Louise Baines and and their teams pulled together to help make the weekend in London a resounding success. For me, it was a chance to put faces to some of the very dedicated women who make themselves available to callers in need of an understanding and supportive ear, and who continue to build awareness of Ovacome locally.

From your feedback, the talks by Professor Hilary Thomas, a consultant oncologist, were extremely enlightening. With an additional presentation from Cancer BACUP we found new ways of providing even more support and services to our members. With the success of the London meeting, we are looking at ways of opening up this kind of seminar to more of our members in the year ahead.

At our last Committee Meeting we happily wished Alex Whates, our tireless administrator, good luck and all good things as she goes on maternity leave for the birth of the first child to her and her husband Bernard (at the time of writing they do not know whether it will be a boy or a girl, and do not want modern technology to spoil the surprise!).
With Alex turning her attention to smaller things, Debbie Howells will be Ovacome’s new voice at the other end of the phone, becoming the new administrator in Alex’s absence. She’ll be doing this on top of her duties as newsletter editor, which means we’ll be keeping her quite busy in the new year!

I attended a European oncology conference where I saw that there is a great deal of research and development going on in ovarian cancer (see page 13 for more details). The research includes drug trials with new agents that target cancer cells in different ways in an attempt to slow or halt tumour growth. Although much of the research is in preliminary phases, it was encouraging that a great deal of work is being done to improve treatment of ovarian cancer.

Finally, we are making plans for OVACOME DAY on 8th April 1999, which will include local raising awareness and fund-raising activities which we hope will help our central efforts to ensure that women who need Ovacome are made aware of us through their local hospitals, and that we have the ongoing funds needed to ensure that Ovacome can continue to serve its 1500-plus (and steadily growing) membership.

I hope the holiday season has been a good one for all, and that the New Year brings Ovacome members happiness and well-being.
Madeleine Gold

Letter from the Editor

Happy New Year. I hope you enjoy the first issue of the New Year. I am thoroughly enjoying editing the newsletter and, as Madeleine mentioned in the Letter from the Chair, I have taken over the administrator role as well. I am very busy but I have never enjoyed a job more. Having survived ovarian cancer twice myself I find it so inspiring to read your letters and stories and love relaying interesting information to you all.

You will notice on the index in future that certain articles are marked with either a J or an L. It has been mentioned that some people find some of the readers’ stories distressing, so we have decided to mark these with the above symbols. So if you are feeling a little low and not up to a sad story, avoid those marked L and read them instead when you feel strong and positive.

I am sure you will all be intrigued by the article on screening for ovarian cancer. It is good to know that work is continuing to improve screening for this silent disease. Following the article regarding ovarian cryopreservation in the Autumn newsletter, I received a letter from the Chelsea & Westminster Hospital stating that they too are undertaking this procedure in the Assisted Conception Unit. Their phone number is 0181 746 8000.

I am hoping to go on improving the newsletter and would appreciate your input. What would you like to read or learn about? Can you offer advice? If so please write to me at the Ovacome address or send an Email.

Unfortunately Karen Summerville has not managed to complete her article for this issue but has promised an article on the possible links between ovarian cancer and fertility treatment for the Spring issue. There has been lots of media coverage on this issue recently (including a new research study in the UK designed to investigate any possible links).

Finally as Madeleine mentioned, 8th April will be Ovacome Day and I am hoping to publish a special edition newsletter in the middle of March. If you are planning a fund-raising event, please write to let me know, because the special edition will be comprised of YOUR FUND-RAISING AND RAISING AWARENESS stories. If you would like ribbons to sell at your event or posters to display please let me know. And don’t forget to let me know how much you raise so we can thank you in the newsletter.
Thanks again and Happy New Year. Best wishes.
Debbie Howells

Raising Awareness Update

The Raising Awareness Team has been busy again. In October we had a wonderful study day together in London, sponsored by Bristol Myers Squibb. We were very lucky to have some excellent speakers from the field of ovarian cancer. We all came away charged with fresh enthusiasm, eager to get on and spread the word. It was great to meet up and put faces to so many names, and I hope we manage a get together again soon.

One of the key changes to our current set-up is the development of regional co-ordinators. This a voluntary post which would involve co-ordinating the raising awareness efforts for your area. The role would include overseeing the local Adopt-a-Hospital scheme, holding a list of willing local Ovacome members who would be able to man exhibitions, and providing encouragement and support to those wishing to raise awareness in your area. Areas are quite large, covering several counties, but if this sounds like your kind of thing and you would like to know more please call me on 01444 416410.

The Adopt-a-Hospital scheme is moving along, with good response, but we need a lot more of you to get involved. If you are willing to visit your local hospital and ensure that they know about Ovacome, and hand out some literature, then give the office a ring and join our team.

As many of you will be aware, the OVACOME DAY will be held on 8 April each year from now on. This was the birthday of our founder, Sarah Dickinson. We have been busy thinking of ideas for local and national events, to raise both awareness and funds. There are several in the pipeline but none confirmed at the time of going to press. Do you have something planned? Do you have any ideas, or need any help/posters etc for a local event? The editor of the newsletter is hoping to produce a special edition newsletter for the Ovacome Day and would appreciate your letters to let her know what you are planning or have undertaken so that we can convey this to our readers before the big day.
Wishing you and your families peace and happiness in 1999.
Louise Bayne
Task Force Leader

Fone Friends

London away-day

At the end of October our Front-Line Fone Friends and Area Co-ordinators gathered from all parts of the country to London for a training weekend. Our arrival on Friday evening celebrated the first time most of us have met, although many have spoken often on the phone!

On Saturday we enjoyed a speaker from CancerBACUP and an excellent and thoroughly interesting talk from Professor Hilary Thomas, an oncologist specialising in ovarian cancer. We finished the day with a productive meeting giving us the opportunity to exchange ideas and experiences.

On the Sunday, Cancerlink facilitated a day of telephone counselling skills training. It was a tiring but extremely beneficial session. All in all it was a stimulating weekend and I extend my thanks to all who attended, both speakers and members. A special thank you also goes to Bristol Myers Squibb who sponsored the accommodation expenses.
Area Coordinators

A big thank you for such a good response to my appeal for Area Coordinators in the last newsletter. We now have three brave new volunteers: Linda Chapman in Area 10, Val Webster in Area 14 and Jo Wright in Area 8. Good luck to you all.
Best wishes.
Karyn Connor

With Complements – Diane

I am delighted to announce that I have just celebrated the fourth anniversary of my "life after cancer". Wow! I want to shout it from the rooftops and say a huge thank you to everyone who has been involved in my care. From a poor prognosis with third stage disease, I have come a long way, not only physically but spiritually and emotionally too. I cannot pretend that the path has always been smooth but it has been interesting, even rewarding, for it has brought me into contact with some wonderful people. I have made so many new and valued friends: fellow sufferers, medical people both traditional and holistic, and the whole Ovacome Fone Friends network. Everyone who has touched my life has enriched it and this desperate disease, paradoxically, has provided me with so much of value. I stride on towards my fifth anniversary with an even longer-term target of being present at my daughter’s graduation ceremony in three years’ time.

Visualisation
I need targets and visualising them is part of a survival programme which helps me live positively in the present and gives me a sense of the future. Last issue, I wrote about the value of relaxation techniques and meditation as part of my post-diagnosis lifestyle. An extension of these is a technique known quite simply as visualisation, pioneered by Carl and Stephanie Simonton at their clinic in Texas. Visualisation works in the belief that the mind has the power to influence the physical body. If everything we are and do can create disease, then we have the power within us to use the mind as a tool to help restore the body to health. The Simontons’ approach recognises that integrating patient participation with conventional care can improve health and well-being.

Images
Visualisation begins with relaxation and meditation techniques of the type I described last issue. It is important to begin in this state of deep relaxation so the unconscious mind is receptive to the creation and acceptance of healing images which aim to overcome the cancer.

Each of us will develop our own favourite symbols which seem right for us, but in the early days the Simontons used very literal ideas. One asked the patient to imagine piranha fish attacking and eating a cauliflower which was the cancer. Another idea had our white cells as the white knights fighting and overcoming the cancerous cells represented by the black knights.

The Simontons’ pioneering work has been accepted by many therapists, but increasingly a gentler, less aggressive approach is advocated with, for example, the body being flooded with a healing white light creating feelings of being, whole, purified and healthy. Other images take the patient on a healing journey through beautiful countryside, meadows and gardens which relieves the body of stress. Purifying water is usually a part of such a journey, with the body being washed clean and made healthy by clean flowing spring water.

Other people imagine their feet having roots which travel deep into the earth and from which the healing colours of the chakras are breathed in through the feet and up through the body, giving fresh life and healing with each breath. The ideas employed can be as rich and varied as your imagination will allow and the technique requires that positive visualisation become part of your daily routine, as natural as brushing your teeth. Do not allow yourself a moment of negative thought and believe totally in your ability to restore the body to health.

Biofeedback
Quite a tall order, isn’t it? But, there is much evidence that neuropeptides, released from the brain as a result of this type of positive thinking, lock onto the immune system and boost the body’s ability to fight disease. Experiments with biofeedback machines confirm that the mind can affect the body. For example, biofeedback has shown that the temperature of the hands can be raised or lowered by focusing the power of the mind. But, at a more basic level, and without the use of equipment, we can all remember experiencing butterflies and palpitations in response to excitable thoughts, or the prickly feeling in the scalp when we are suddenly shocked, fearful or nervous. Our language is littered with expressions which confirm the mind/body connection: we all know what is meant to have a sinking feeling, to feel the skin creeping, or to hear someone describing joy with a metaphorical "my heart soared". These mind /body sensations and associations have been expressed at some time by us all. If the Simontons are to be believed, what we must do is learn to harness this to improve our health.

Some people have found it worthwhile to join a support group which uses positive visualisation as part of the group therapy. This mutual self-help can be a good starting point, or why not enlist the help of a qualified hypnotherapist? Your local hospital may be able to help with this. Whatever you do, and however you choose to do it, do be consistent. Visualisation, like relaxation and meditation needs to become a part of your daily routine for positive living.

Epitaph
Those of you who regularly read my articles know I like to leave you with an upbeat quip, but this time I have to share news of a very tragic event in my life which has left me bereft. Some of you already know that in late summer my wonderful, supportive and caring husband died suddenly of a heart attack. For four years, he had been my rock, always there no matter what approach I chose in my search for ways of restoring my health. My one consolation is that he did not suffer. We had a wonderful summer together, enjoying our garden and the company of family and friends. We happily anticipated my four-year survival and he lived to know that our much-treasured daughter had been successful in her A levels, confirming a place at her first-choice university. He was very proud.

So, I would like to leave you this time with thoughts which are a little more profound than my usual signature:

The past is history,
The future a mystery.
God’s gift is the present
That is why it's called the present.
LIVE FULLY IN EACH MOMENT!

Diane Chapman

From our postbag

It is with great regret that I have to inform you that Marjorie Halewood died on 2 October at Rowen’s Hospice, Waterlooville. Marjorie was loved and cared for by her family during the last stage of her illness. Some readers will have known her as a Fone Friend. Marjorie was always positive and bright, a good friend to many, and her cheerful voice and sense of humour will be greatly missed.

Good news to share
I read the summer newsletter from beginning to end, as I have done since I was diagnosed with ovarian cancer in November 1997. I have had four operations and have been told that the cancer was caught at stage I. I’ve been given the go-ahead to continue fertility treatment before a hysterectomy. I hasten to add that at this stage I am not taking any fertility drugs. I have been offered IVF to speed up the process and will need to make a decision by the end of the year. Obviously there is a lot to think about, having taken clomid prior to diagnosis, and knowing that the drugs used for IVF are a lot stronger, yet the desperation of having had cancer and the relief and joy of being given my life back. This a mind-blowing decision. It would really help to talk or write to anyone that has had this dilemma.

I have another reason for writing. After reading the financial information article in the Spring issue I felt compelled to write about the strangest light we discovered at the end of our tunnel. Two years ago we bought a house and part of the mortgage included a critical illness policy. It didn’t even cross my mind that I would be covered until a friend suggested I make a claim. To our amazement the insurance company paid us the amount of our outstanding mortgage, which we paid off immediately although they stressed we could use the money however we wished. I’m 33 and was working full time, the difference this has made to me is indescribable. Both my partner and I felt we needed to let people know how important this type of policy can be. It covers various critical illnesses including Parkinson’s, Alzheimer’s, stroke, heart attack, MS and, of course, cancer. Someone from the insurance company said "you hope you never need to claim on a policy like this", but what happened to me shows you never know what is going to happen: after all one in three people are diagnosed with cancer.
Jo Wright
London

Three Peaks Run - Update
Leyland fire fighter Mick Evenson presented a cheque for £5,000 to Margaret Yarwood (Fund Raising Task Force Leader) for Ovacome in October. Mick and a team of fire fighters completed the Three Peaks Challenge to raise money in memory of Annabelle Evenson, Mick’s 27-year-old daughter, who died last Christmas from the disease. Mick and his colleagues set out to scale Ben Nevis, Snowdon and Scafell in 24 hours. In fact they achieved this feat in 19. Mick, in an effort to deal with his feelings of grief and powerlessness at the death of Annabelle, rallied friends, colleagues and relatives, collecting sponsorship for this event and also setting about raising awareness. His amazing efforts and courage have raised the profile of ovarian cancer within the fire service and beyond.

Editor’s note: On behalf of all of the committee I would like to say a very big thank you for your hard work and commitment in raising this £5,000 for our charity.

My story
I am a recent reader of your newsletter and would like to say how grateful I am for this. It has given me a great insight into ovarian cancer and its treatments and linked me with other sufferers. I was first diagnosed three weeks after my first operation, a hysterectomy and partial removal of the omentum. I had paid £1300 to see a specialist as my GP said there was nothing wrong with me.

I had been complaining with chronic indigestion for six weeks and just was not satisfied, never having suffered any kind of illness, not even ‘flu. for the last 40 years (I am now 59) and I knew there was something wrong. My surgeon, who was an ovarian cancer specialist, told me after my operation that I had ovarian cancer, stage III. I was given Taxol as a second-line treatment after Carboplatin failed to work after four doses and to my great disappointment Taxol didn’t work at all. After nearly three months without treatment, on seeing my oncologist I was informed that my CA125 level had come down by 300, so something is working although we don’t really know what.

Is there anyone else who has had this happen to them? If so I would love to hear from you. Thanks again for your newsletter.
Joan Whitehouse
Dudley, West Midlands

I felt I must write to say how much your newsletter has helped me in the past year since I was diagnosed with ovarian cancer. Cancer is such a general term but to know that there are people "out there" the same as myself some how helps.
Mrs J Harrowire
Norfolk

TACT
The Talking and Caring Together support group was mentioned in the Autumn newsletter. Ann Grundy has sent me the following letter to tell our readers more about the group.

We are just a small group who set up three years ago because we were so ignorant about cancer and its treatment. We felt we needed more information on the subject, hence the group which was set up with three ladies to start: myself, Sue Culshaw and Joyce Murphy. We invite partners and family to the meetings so they feel more informed about the treatment each one receives. We have some good times together organising trips and social events, and certain people talk on different subjects which we feel would interest us. We do not have only good times, the bad times are terrible: last year (1997) we lost six members including Joyce, one of the founders. We also feel we are helping their partners: three of them still attend our meetings. We always have at least two ladies at the hospital when patients go in for chemo in case they feel the need for someone to talk to. I was very grateful to one of the nurses when I had my treatment. She was so helpful and is now a member of our group and keeps us informed medically. Kind regards.
Ann Grundy
Wigan

Be aware
I was diagnosed with cancer after being scanned twice and then turned down after I asked for a third scan. This was six months before things became so uncomfortable I could not sit upright, breathing became difficult and my abdomen became very large. The first scan showed nothing, the second was read as fibroids, but my intuition told me this was wrong. After being taken into hospital very quickly in October 1994, I was packing to go home on the fifth day when the specialist came to me and asked me to go to the matron’s office. It was here that I was informed that I had a malignant tumour. I also had groups of malignant cells in my abdomen. I started chemotherapy very quickly the next week and after three sessions they informed me that they had discovered I was suffering for a very rare cancer named Serteli Leidig (cancer of the sex hormones in the ovaries). I therefore had a full hysterectomy in February 1995 and then more chemotherapy. My symptoms were that my periods stopped for a year and then returned normally and I had an extremely high oestrogen level. I am now all clear.
Mrs Smith
Herts

Hair loss: good news
It is with great regret that I must inform you that my wife Caroline died on 6 July 1998, some months short of five years since diagnosis. You may recall she wrote a diary for the newsletter some time ago. She was the founder of the Headliners Organisation, which in particular, raised money to provide the prevention of hair-loss equipment for the Christie Hospital in Manchester, the Paxman Cooler. In addition media publicity ensured that patients undergoing chemotherapy throughout the UK (and abroad) were made aware of the availability of the equipment. As a result many hospitals have acquired these cooling machines with the benefits which accrue to patients, including the psychological uplift of retaining their hair as well as the practical aspects. If any readers require details I will be pleased to pass on the relevant phone number or send a brochure.
Tony Wolfson
Manchester (Telephone 0161 448 7228)

Editor’s note: Tony kindly sent a donation, for which I would like to thank him on behalf of the Committee.

Stop Press!

Great news! Our administrator Alex gave birth to a beautiful little baby girl, Tabitha Daisy Lee on Monday 28th December, 1998. She weighed in at a healthy 7lb 15oz and is truly admired and loved by her mum and dad, Alex and Bernard. Alex and baby are both at home and doing very well.

BOOK REVIEW

C - Because Cowards get cancer too...
by John Diamond

When John Diamond turned his weekly column for The Times into an account of his cancer journey, he was stunned by the response. He had expected "a couple of anonymous letters telling me I wasn’t the first bastard to get cancer": instead, he got a giant postbag containing hundreds. The book contains a few of the columns and is a frank, up-front account of how he got through excruciating surgery and radiotherapy for cancer of the tongue.

Don’t think for one moment, though, that this is a depressing tale: it made me laugh rather than cry. There are terrific descriptions of people’s reactions to his cancer such as: "People would say, in that reverential chapel-of-rest voice, How are you?’."

One of the reasons I liked John Diamond’s account was that his attitude to the disease in lots of ways mirrors my own. He despises all the battling and fighting cancer talk; he says this implies that only those who fight hard enough against the disease deserve to survive it. The message is, cut the crap; we have cancer, we don’t need a lecture on morals as well!
He is astonished that people are so ignorant about cancer. That vast postbag he received contained lots of letters from fanatics advocating weird and wonderful remedies. He quotes statistics: in 1930 only one person in five diagnosed with cancer survived five years; at the present time 50% survive at least that long. He gives thanks for modern medical advances.

To those arguing against orthodox medicine he says: "Where I stand on alternative medicine is roughly where the Pope stands on getting drunk on communion wine and pulling a couple of nuns". Or another classic: "No wonder the alternative quacks get away with their fairy dust treatments, you die just as quickly as with the real thing but you feel better about it."

C is part of a new wave of cancer writing, breaking down taboos and dismissing much of the nonsense talked about the disease. Depending on where you’re coming from you’ll probably either love or hate it. Either way, don’t ignore it, or you’ll miss one of the most witty, readable books on the subject.
Rachel Solemani
London

Poem

The Legacy of Love

I miss her most in the morning, when the sun from sleep does arise,
When I reach out my hand I remember, and wipe off the tears from my eyes.
I go to work and I miss her, she’s not there to kiss goodbye.
As I walk through the rain I can picture a time there was no need to cry.
I told her I loved her quite often, and she said that she love me as well.
She would never have left me here grieving; in this sadness, I’m living in hell.

I miss her most at the noontime, when the sun is so high in the sky,
I gaze at her portrait before me, and I yearn for the time that’s gone by.
When the children were happily playing, and we planned for the future ahead,
Just when the future looked brighter, I’m alone and without her instead.
Each day I am trying to face it, a life that’s so bleak and so cold.
I thought we would stay here together, till all of our dreams unfold.

I miss her most in the evening, with the work of the day at an end,
We’d sit there together just closely, she was my life, my very best friend.
She’s smile and ask how my day went, as I told her, she’d give me support,
A laugh, a joke and a cuddle, in her trap of sweet love I was caught.
I felt so safe in her presence, she wanted to give me the best,
Our lives were one for the other, and now she’s at peace and at rest.

I miss her most in the night-time, when I wearily slip into bed,
I feel her spirit beside me, my love transcends all that is dead.
No-one can know how it’s hurting, this grief I carry alone,
Though all those around me are caring, this pain is the worst I have known,
With those that I love here beside me, to comfort and help me to cope,
I know my own future’s uncertain, but I face each new day with fresh hope.
Cecilia Skudder