Regular features

Letter from the Editor

Welcome to the Winter edition of the newsletter (as I type it is snowing heavily outside!). I hope it will encourage you all to think about what we can do to advertise Ovacome on April 8th, as we need to work hard this year to 'raise awareness'. Let's put a lot of effort into our fund-raising too. I know we can't all organise runs and bike rides but I'm sure there are many simpler fund-raising activities which can raise money for Ovacome. Some people ask relatives and friends to donate to Ovacome in lieu of birthday and anniversary presents - even a Sunday lunch or dinner party might be paid for instead of being free - you just need to let people know in advance. What about an Easter egg competition: children I know love to paint eggs. Or, instead of having unwanted Easter eggs, ask for the money to be donated to Ovacome. We have fact sheets in the office full of other ideas so please ask us, there's sure to be something which you think you can do.

Some of us are manning stands or tables in shopping centres on either Tuesday 8th of April or Saturday 5th (as it will be busier) in order to 'raise awareness'. If you feel that this is something you might be able to do please contact the office for ideas and help for the way forwards.

This year we have eight people running in the London Marathon. These men and women go out in all weathers and raise a significant sum between them because they believe in Ovacome: please think about sending a small donation to support them, as this can be a tremendous boost to their morale.

And don't forget the Flora Light Run, last year we had a really good turn-out with at least 20 participants so I'm hoping this year that we'll be able to increase our runners/walkers to at least 50. The date for your diaries is 14th September (my daughter will be getting married the previous day but I'll still be there!). Please contact the office for application forms which will be available in March.

If you aren't sure you will be able to take part, don't worry: just encourage a relative or friend to apply as well and on the day you may feel encouraged enough to take part too. Last year one lady was prepared to take part in a wheelchair (she also had to drive from Manchester!) and on the day she was able to take part on foot, a proud moment for her and the friends who accompanied her. All the staff and committee members take our hats off to her too! The Flora Light Run will be taking place in Birmingham as well as Hyde Park this year. We have many members in the Midlands, so pick up the phone today and place your name on a waiting list for places. Let's make it a day we'll all remember.

You'll see on page 4 that we have arranged a member's weekend in London on 10th and 11th May. Members and health professionals are invited for the weekend or just Saturday or Sunday. Saturday will have a very varied programme on all aspects of ovarian cancer, with some eminent speakers. We have arranged accommodation for those who would like to stay over, so please let us know as soon as possible how many will be attending and if you need accommodation. Sunday is a training day for Fone Friends and anyone else interested in improving counselling/ listening skills. Sheila Dainow, DCS FBAC will be our skills training co-ordinator for the day and I'm sure it will be really rewarding and enjoyable.

I'm so pleased we were able to produce the calendar in time for Christmas. Well done to those of you who exhibited, you should feel really proud of yourselves. It's a risky business worrying that maybe your photos are not good enough, but they reproduced extremely well, and many people have written in to congratulate us. We will be holding another competition this year, so get snapping or just look through some old pictures for one that you just love. The closing date is Friday 16th May. (We still have some calenders for sale at a reduced price.)

In the next newsletter I would like to propose a pen friends club and I know many of you would be interested in a book club. If you have any ideas on how we can go forwards with these ideas please let me know.
I'd like to thank those who replied to my invitation to take part in my research project, I was overwhelmed and really touched by the response. I'm sorry I haven't been able to contact you all in person (over 40 responded and I can only use six) but it has made me realise that there are a lot of women who want to be heard, so please put pen to paper and write in the newsletter instead! The deadline for articles to be in for the next newsletter is 20th March.

In this issue we have one or two sad articles, so please remember to refer to the smiley/sad symbols on the front page should you want to avoid them. The newsletter is for all those affected by ovarian cancer, whether they be women who have been diagnosed, relatives, professionals or the bereaved so that we can all 'have our say'.
Until the Spring, keep well!
Frances

Letter from the Chair

I hope this latest newsletter finds you well, having enjoyed a wonderful Christmas and New Year. The past few months have been busy for Ovacome. There have been some significant advances in the charity over the past year. In the summer we welcomed three new staff members to the team, and those of who have spoken with Lesley, Lisa and Nicci will know what valuable contributions they are making.

With this expansion has come the need for a new office. We were fortunate to be welcomed into our first office by the team at Barts. We were saddened to decide to leave, but have realised for some time we had to find somewhere a little larger. A few months ago we were thrilled by an offer from University College to move to the Elizabeth Garret Anderson Hospital. Final preparations are being made, and we hope to announce details in the next newsletter. We anticipate making the move in the spring, so our contact details remain unchanged for the time being. We have also been busily making other plans for the spring. Two main activities are planned. The first is a Members' Weekend. We know how much you value and enjoy opportunities to meet, as well as interacting with experts in the gynae oncology field. The weekend will also offer training for our existing FoneFriends, and those wishing to be further involved with the charity. Speakers are being finalised as we go to press, and it promises to be a very interesting time. Please come if you can.

Our second activity this spring is Ovacome Day. This year we've been collaborating with Wellbeing, the charitable arm of the Royal College of Obstetrics and Gynaecology. They fund research in to many areas, including ovarian cancer. They will be selling ribbons in Boots and British Home Stores, as well as running a press campaign in March. Whilst we will not benefit directly from the money raised, those of you who have very kindly agreed to be interviewed for articles will be significantly raising our profile.

In the last newsletter you will have noted our plans to appoint a Director. After a great deal of thought I decided to apply as well. Those of you who have been interviewed by colleagues, and friends will know it's not a pleasant experience, but I was surprised and thrilled to be offered the post. This, then, will be my last Letter from the Chair. A new chairperson will be elected at the next trustee meeting in January. I know what a fulfilling and enjoyable time they will have. Over the past two and a half years I have learnt so much. There have been significant changes in the organisation and structure of cancer care, with new trials and drugs coming to the market. Mostly, though, I have learnt of the power of you, our members. Cancer teams, and the health service in general, are genuinely interested in your experiences. Standing in an auditorium facing distinguished doctors and nurses, preparing to give a presentation, is something which makes me feel ill; but I always remind myself that our members need a voice, their experiences need to be heard. The committee and staff in the office know the mantra well "What would our members want us to do?". I promise to continue in my new role, mantra firmly in place.

So, I sign off sending love and best wishes for a peaceful spring, and hoping to see many of you at the Ovacome weekend,
Louise

From our postbag

Sunny side up
I have just sorted out a massive stack of cancer related papers as I do belong to an Oxford O.C.S.A.G. and the Cochrane Gynaecological Cancer Collaborative Review Group, and receive information from MacMillan cancer relief and others!

I've received several friendly phone calls from a charming lady from Glastonbury and have failed to put her telephone number into my address book. It seems there aren't too many members in Oxfordshire, but I have encouraged a few ladies who were undergoing chemo with me to keep in touch, and I've also spent a lot of time keeping up with women locally who have ovarian cancer.

We'd hoped to retire to Sidmouth in Devon before I was diagnosed, and on visiting this summer was delighted to join their jolly 'living with cancer' support group. The committee all wear bright yellow tops with a smiling sun and it is hoped other members will join in. We've had a skittles evening, and other social gatherings are planned. Sidmouth has raised £4 million which has bought a small house in the town, with three MacMillan nurses. The house is used for meetings, and drivers are encouraged to ferry older patients to and from Exeter for their treatments.

I'm delighted with the Ovacome magazine and would certainly be willing to be a volunteer Fone Friend.
Audrey Phillips
Abingdon, Oxon
To contact Audrey please phone the office

Found in cyberspace
I found your site today on one of my frequent trips into cyberspace and I must say that I've found it interesting and informative. The answers to your frequently asked questions are helpful. I am 54 years old, live in the USA and was diagnosed with Stage 11 clear cell ovarian cancer last June (2002). I had a radical hysterectomy and a six-course chemo treatment of carboplatin and Taxol. My last treatment was in November (CA 125 was 7 at that time) and this month I make my first post-chemo follow-up visit to my oncologist. Wish me luck!

Your site is wonderful - women throughout the world appreciate your efforts. In the future I'll be a regular visitor - you've already been added to my bookmarks.
Christine P Crosbie
United States of America

Feelings in verse
I was diagnosed with stage 3 in November 2000, after a hysterectomy I had high dose chemotherapy as part of a clinical trial at St James Hospital in Leeds throughout the spring and summer of 2001. I have been very well since and have enjoyed a very special year with my family and friends.
I was very disappointed to find in November last year that the tumour had started to grow again and it took me a while to come to terms with the change in my circumstances. I think the words in the poem on the right sum up how I feel. Maybe they would be of interest to others.
Sally Humphries
Honley, Holmfirth

Determination wins out
Hi, everyone, still buzzing and feeling really well, working full time, kids home and family, it's hard to believe that I have been off for 11 months but I am back and determined to stay. I just wrote to say thank you for publishing my article: I have spoken to many people who feel very isolated as I did and still do at times. One lady gave me great advice on filtering my water, which I always do now, and another just spoke about how she was feeling, surprisingly just as I did, and I am sure all of us do at certain stages. I have also been in contact with Sue from Southport who I feel has become a great friend and confidante, we have chatted for a long time and it has made me feel stronger for it, and I hope I have been equally as supportive to her, I feel that I have known her forever.

This time last year I was in a terrible state looking at chemotherapy on the 31st December but this year I am looking at life and living. Thank you and a Happy New Year to you all.

I would like to start a coffee morning/meeting in order to meet other women with ovarian cancer, if you are interested please contact me (my number is available through the office), I look forward to meeting you.
Joan Mechen
Seaford

Editor's Note. Joan wrote about the ups and downs of her life since her diagnosis, it was not difficult for her as she writes as she speaks, and she's had a warm response from some of our members who have identified with her in some way or just enjoyed the 'chatty' way she writes. Thank you, Joan, can we look forward to another article?

This is a wake-up call
Having read Jane Viney's account of her ovarian cancer, I agree wholeheartedly that the CA125 blood test should be given routinely, when symptoms occur which could be those of ovarian cancer.

I had a very similar experience after repeatedly visiting various GPs at my group practice and being told 'it's your age, there is nothing wrong'. I subsequently visited a female GP hoping she would understand my symptoms and take them seriously. These were a bloated feeling, fatigue, passing urine frequently, a cough and a feeling of nausea, particularly in the mornings, and intermittent pain similar to a period pain. This female doctor, who I thought might just listen, said "Have you tried Yoga!"

It wasn't until I saw a locum lady doctor who was replacing one of the regular doctors that anything was done. I said, "I feel pregnant" but at 52 didn't think I could be! She examined me and said "there was definitely something there."

She did a pregnancy test to rule that out! And sent me off to have a scan. I waited another six months for this appointment, and finally after 12 months of knowing something was wrong I was told that I had a cyst on my ovary.
An appointment was booked for the following week to see the surgeon who informed me that I would need a hysterectomy. I remember saying "that seems a bit drastic for a cyst" and he said "I strongly recommend you have it done."

I finally had my operation in February 2000 and was found to have a large tumour on my ovary which had also spread to my bowel and omentum. I had to have 50% of my bowel removed, fortunately I did not need a colostomy but had to have a subtotal hysterectomy which removed everything but the cervix. I was diagnosed at stage 3C. Why, oh why could they not have given me the CA 125 test on my first visit a year previously.' It is such a simple test and could save many lives. If this test had been given sooner the cancer would almost certainly have been found at an earlier stage with a better chance of recovery.

I know we are in the minority compared to breast cancer, which is much more common, but we do exist and so does our illness and more GPs should be aware of it. It does mimick the symptoms of other less serious conditions but when a woman presents with four or five of those symptoms at the same time, it should ring some kind of alarm bells!

Please, please, medical practitioners, I implore you to wake up and take notice of us and carry out this simple blood test when a woman keeps returning to your surgery with these symptoms!

I have just completed my second course of Taxol and Carboplatin at three weekly intervals, my CA 125 is still at 128 and I am longing to have some hair again. I live in hope of a miracle cure as many of us do, but for now live from day to day trying to make the most of life. Before my illness I was really looking forward to my 50s and doing all the things I've wanted to do.
Although a lot could have been done prior to my diagnosis, the medical profession since then has been wonderful. I would love to go back to that GP and say "I didn't know yoga cured cancer!"
Lots of luck and good health to you all.
Christine E Smith
Grimsby, N.E Lincs

Editor's Note: Christine's address is available through the office

More funds from Linda's book
I am pleased to enclose a cheque for £150 from further sales of Fighting the Silent Killer. We still have a few copies left but this sum takes account of those, which we anticipate will be sold in due course.

According to our records the book has raised nearly £1400 for Ovacome since we published it, a sum well in excess of our original expectations of around £800.

Linda my wife continues to do remarkably well. She has just had a five-session course of carboplatin, to which she has responded well, and next Monday she will start a three-week (15 session) course of radiotherapy, designed to 'blast' the residues. It is now over five years since she was diagnosed at Stage 3 and, however things develop from here on, her experience so far should serve to be an encouragement to those newly diagnosed.
Roy Cecil

You don't have to be positive
At last it's official - study reported in medical journal - you don't have to be positive to fight cancer! I've been told so many times that you have to fight this disease. If you have heart problems or other diseases you may be advised to relax and take things easy. However when people hear the word cancer, they tell you to fight it - how does wearing boxing gloves help?
What some people forget is that you do not want to be ill - you want to get better. Sometimes this illness has progressed too far and no matter how hard they try being positive will not help. If they don't get better they just haven't tried hard enough, have they? Just getting through daily life can be difficult, you don't need to be made to feel guilty too!

A lot of treatments and alternative medicines do help and many of us try to explore all facets. Nevertheless we should be able to worry or rest without feeling we're not trying hard enough. Yes, it helps to talk through your fears, but you need someone to listen, not to give unsolicited advice.

So can I please make a plea that we stop using this outdated expression. When my own situation improved I thought I had the answer. However after talking to many people with cancer I realise that everyone has to deal with this illness in their own way. They have to do what's right for them - whether its denial - healthy eating - chemo - alternative medicine -doctors advice or hopefully go on holiday. It's your illness - so no guilt it's not your fault. Love to hear all your stories and feel a connection every time the magazine arrives. Thanks to everyone for all your efforts.
Pat Dawe

Stephanie and Peter reply
The review of Icon 3 (Autumn 2002) conveys the complexities of clinical trials of new drugs. Existing treatment regimes, of which the paclitaxel-carboplatin combination implemented in advanced ovarian cancer is typical, are also re-examined as in ICON 3. Statistical analyses add to the difficulties which lay people encounter If they attempt to draw conclusions about treatment from one of these innumerable clinical trials.

The paclitaxol-platinum combination aims at averting the risk of potentially emerging cancer cell resistance to either drug given separately or serially. This principle has been long established in the multi-combination drug treatment of tuberculosis.

New drugs and treatment systems are continually undergoing clinical trials. When any new drug or treatment shows promise, its effects will be very thoroughly checked and critically studied. It is from these premises that hope of success with cancer treatment arises.

Marked success is presently seen in some leukaemias. The solid tumours, of which ovarian cancer is typical, present greater treatment difficulties, but, even so, achieve treatment successes in a significant number of cases treated.

Oncologists naturally wish for success in every case treated. But among the aspects of cancer treatment are drug-related side effects (hair loss, tingling fingers and toes) which disturb the patient, and others of a more difficult nature which disturb the oncologist aware of the problems and their significance for the patient's wellbeing.

Clinical trials are complicated by several factors, among which the ethical factor is easily understood. If a drug is successful should its trial result in denying its benefits to the obligatory control group matched for disease, age and sex control group? The pharmacological factors are complex. Every person is so constituted that individual reactions to the drug(s) can complicate the details arising out of the clinical trials. Then there are the variables related to the condition being treated. Ovarian cancer is one disease but the individual tumours may display features, which make them, however slightly, uniquely constituted.

For those who have had chemotherapy, whatever treatment regime, and those about to undergo chemotherapy, 'hope' is the intimately personally sustaining force, linked to the assurance that every oncologist wants and needs success for his/her patients.

So much has been, and is being achieved; it prompts and justifies 'hope' for worthwhile life-long extension. Yes, it is not simply to live, but to have quality of life.

Is the sentence "yes, it is cancer" more distressing, more life-threatening than stroke, heart attack, multiple sclerosis?

The drive to overcome cancer appears greater than those splendidly coping with stroke, heart disease, MS, diabetes etc. research. Difficult though it is to remain objectively calm about one's diagnosed cancer, let us all recognise the treatment available, the support that exists, the determination to manage all malignancy.
Peter Walsh
Chingford

In response to 'in limbo'
I remember walking out of the chemotherapy unit and one of the nurses saying "Well, that's you done then! Good luck!" and I thought 'please God, I never have to come back'. I tried to celebrate the end of treatment by having dinner out, but I'd rather have gone home and slept, quite frankly! But I did celebrate my first haircut after treatment by ringing up all my friends to share the good news, circling the date in red on the calendar, and writing a poem for what I called 'my new face'.

Joy's letter refers specifically to the end of treatment, but from speaking to other cancer sufferers, I think the limbo that can follow treatment is worse. During treatment we are looked after, our calendars full of appointments, no time to think about the realities of having been diagnosed, and the uncertainties of life ahead. But once treatment was over I felt a great sense of anticlimax: the previous stress of hospital appointments, coping with side effects, the sheer effort to keep going, had fully occupied all my faculties and now I was starting on the rest of my life, etc.

Of course it is right to be positive, but you can't live life in the fast lane for ever; the euphoria of simply being still alive vanishes and life comes down to earth again: what now? I've tried to gather in such threads of my life as could be picked up again, have gone on writing - more slowly than before - and have at last begun to get things published again after what has seemed a very long silence. But at the back of my mind there always lurks this sinister question of "What if…?" I was overjoyed in October to come across a very sensitively written article in the weekend Times about this very issue; an article called "Staying alive" by Kate Carr. She expresses very articulately the peculiar difficulties of coping with life after cancer: the effort to survive, the anxiety about recurrence, how it feels when you're not really fine but, as she puts it, "your pants are on fire". It takes a lot of courage and mental effort to come to terms with what has happened, to grapple with the uncertainty of the future, to find a way of learning to live within whatever limits the disease/treatment may have imposed on you.

I do wish Joy good luck in grasping the nettle of the future, and I hope she manages to include many, many happy reasons to celebrate. But most of all I wish her courage.
Gill McEvoy
Chester