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Sarah's Bit

Well, I have to admit that I gave up on Taxol. After three doses I decided that it really was too bad, and my doctors agreed that it was making no impact on my cancer. It's really disappointing when chemotherapy fails - all that sickness and pain for nothing. Still, it was worth a try.

Before Christmas I was quite poorly and experiencing abdominal pain. Now, thanks to the symptom control team and my GP, we've got the better of it, and I've bounced back. I wear a skin patch which maintains a constant level of pain killer, and is a lot easier and more effective than tablets.

Adrian, Michèle and I have just returned from two warm, sunny relaxing weeks in the British Virgin Islands. The Caribbean is definitely the place for me! We spent a week sailing, and a week in a quiet guest house. The islands are lush, tropical and very beautiful. We found some gorgeous beaches and did lots of swimming.

Having been so ill, I was a little daunted at the thought of travelling so far. However, my doctors were very supportive, and fixed us up so that Adrian could give me an injection if the pain became too bad. I thought Adrian would be squeamish about stabbing me with a hypodermic, but actually he finds it a great relief to be able to do something so positive, rather than standing by and watching me suffer.

Now we are back to the wet and windy reality of February in Britain, but hope to return to the Caribbean in April. In the meantime, I shall watch my daffodils bloom, plant some seeds for the summer, and learn to scuba dive.

Sarah Dickinson
Founder of Ovacome

Letter from the chair

Welcome to our bumper birthday newsletter: Ovacome is a year old! And what an incredible year it has been.

Sarah's vision has been realised on such a large scale, and in such a short time. She has been a tremendous inspiration to us all, and I know that I speak on behalf of the Ovacome committee when I say what an honour it has been to work with her to create Ovacome.

Our second AGM takes place on Sunday 8th June in Burnt Stub Mansion, Chessington World of Adventures. It would be wonderful to meet as many of you as possible. Do bring along your family or close friends. Free admission into the park will be available to all those attending the meeting. For organisational purposes, please fill in the enclosed AGM form and return it to our new mailing address (noted on the front cover), marked for the attention of Alexandra Dargie, no later than 1st May. I also invite any members who would like to stand for the committee to send me their nominations by 1st May.

I would like to welcome Jenny Agutter as our honorary patron and thank her for her continuing support and promotion of Ovacome.

From all your letters and phone calls, I know how much you appreciate the support from Ovacome. We are still reaching new members across the UK who hear about us through a variety of channels. I hope we will continue to reach all those people who need our support. Please do pass on the newsletter to your doctor, nurse, or hospital, or request extra copies so that you can pass a copy on to them.

Thank you to everyone holding coffee mornings and sponsored events to promote Ovacome. Good luck to Devlan who is organising a sponsored walk in Ireland in April.

I would like to thank those of you who have contributed to this newsletter - please do keep sending in your articles. Both Diane Chapman and Caroline Hawkridge are working hard on two different research articles which, once completed, will be distributed to all Ovacome members. Both will be extremely interesting and valuable but rely on your contributions so please respond to their requests for information.

Finally, congratulations to David and Sarah Legg on the birth of baby Matthew on 21st December.

Alexandra Dargie
Ovacome Chairman

Letter from the Editor

This newsletter is the first in which I have had a hand, and I hope not only that it is informative and enjoyable but that we manage to improve on it issue by issue. I am keen to ensure the right balance of information, personal stories and reports. Please help me in this by writing to me (for the attention of Kerry Ingleton) at the new Ovacome address, with ideas for features, tips, poems and articles. In addition, let me know if you think the tone of the newsletter is positive enough or too negative, and whether the information is upsetting or realistic and helpful.

I have been entrusted with setting up a database of all your names and addresses - we now have over 500 members! Many of you have also sent letters with details of treatment that you have received, and other medical information. We are now building a database that will enable us to put you in touch with the right people - should you wish to join the Fone Friends network - and also to cover your most pressing concerns in the newsletter. Enclosed in this issue is an Ovacome Membership Details Form. It allows you to provide us with up-to-date information about yourselves, whether you are a healthcare professional, carer or patient, and some details about treatments. Furthermore, those of you who regularly require more than one copy of the newsletter may specify this too. I would be grateful if you could complete the form and send it back to us, again marked for my attention.

I look forward to hearing your ideas. Remember that the newsletter is for you and your families, and I greatly encourage everyone to take to the opportunity to tailor it to your needs.

Kerry Ingleton

Tips

For those undergoing chemo:

Kim Williton

During Taxol chemo, when I had the horrible taste in my mouth, ham sandwiches plastered with English mustard (it didn't even burn!), and cheese sandwiches with loads of Branston pickle were great.

Sometimes bread tasted really rubbery in the mouth and so I used to have crumpets ... really nice with melted cheese on top.

I can confirm that Selfridges in the best place for wigs - they don't rush you and let you use one of the small cubicles. Also, if you find that you need to reorder another wig, they will post it to you as long as you have kept the details.

Chrissie Postles, Bucks.

Hair loss can sometimes be prevented during chemotherapy treatment through the use of ice packs which keep the chemicals away from the hair roots by restricting the flow of blood to the scalp. Don't be put off if your clinic has no machine for doing this - ice caps can be made very simply and cheaply using ordinary freezer packs. These are taped together and moulded round a dummy head and then frozen. However, they do not work for all types of treatment.

Sarah Dickinson

Diane - With Complements!

I have learned a great deal about ovarian cancer, its causes and treatments, since I was first diagnosed in December 1994.

My story is, I know, like many of yours - a tale of bloated stomach, crushing tiredness and vague feelings of being unwell and, at times, overwhelming debility. However, there was nothing I could isolate until, one night, resting my hands on my poor swollen tum, I pressed and discovered two 'bananas' lying down my right side.

I think I knew instantly that this was something nasty. I wasted no time in consulting a doctor and within four days I had been seen, scanned, operated on and learned I had stage III ovarian cancer with a poor prognosis.

My well ordered and happy existence was blown apart. There followed a regime of stem cell treatment and chemotherapy, more surgery and yet more chemotherapy and, of course, the inevitable hair loss. Throughout, my care and treatment was excellent and I am forever grateful for the compassion and expertise of all the medical staff with whom I have come into contact and for their open-mindedness and interest when I tell them of the various complementary treatments I am pursuing, on my own behalf, alongside what traditional medicine can offer.

Fit as a fiddle

Well, that all began two years ago, and today I am in full remission and feel as fit as a fiddle. We don't talk about a 'cure' but I do know that, for the present, the cancer is controlled, blasted out of existence by vicious regimes of chemotherapy, positive thinking and a rich array of self-help complementary therapies which have helped me feel, once again, in control of my life.

However, concerns for the future are never far from my mind. I live and laugh and enjoy the wonderful support of family and friends who have nurtured me these past months and helped diffuse the agonising pain of knowing that I cannot count on seeing my beautiful daughter grow into woman-hood. But I have learned that target-setting has been, and will continue to be, a vital part of my survival. My first goal was to see my daughter, Hannah, through her GCSE years, and now I am determined to see her graduate, even though she is at present still only in the first year of her sixth-form education.

Don't ever give up!

But, we are all fighters, aren't we? I realised this when I joined Sharon'sFone Friends last summer and spoke to so many of you who share my will and determination to rob this silent killer of yet more victims.

Each time I go to Nottingham City Hospital for a check-up, the medical team cheer me by telling me of even more wonderful treatments on the horizon, the result of research at the cutting edge of science. If it wasn't all so very serious, it could almost be described as exciting to be a part of it!

It's good to talk!

In the meantime, I continue with my own research which began that dark December day when I was first diagnosed. As I said, I have learned so much, with the help of very good friends, since those early days.

When I speak to fellow sufferers on the Fone Friends network I gain as much as I give and have learned that many of you have also pursued complementary regimes alongside chemo-therapy. Between us we have a wealth of information we are more than willing to share. I have already begun to collate my research findings to include reading lists, treatments, therapies, diets, nutritional supplements, useful names and addresses of practitioners in complementary medicine. I think the time is right for us to pool our resources and produce a booklet which will be freely available to anyone who wants it. How many times have I said in the past few months - "If only I had known at the beginning what I know now!" Time is not on the side of ovarian cancer sufferers.

Let's work together

Every day seems to uncover new information and what I suggest is that anyone, with ideas of any kind relating to self help and ways of coping, write a brief summary or phone me.

In the first instance, I will collate, on computer, everyone's contribution. Then, if time and distance permit, it would be a good idea if a group of us could meet to decide on the most appropriate and useful format for the presentation of the material collected.

I wish you all well and look forward to the benefits for us of this shared enterprise. It really is good to talk!

All contributions to: Diane Chapman, 25 Ferriby Lane, Scartho, Grimsby, NE Lincs DN33 3NS
Tel. 01472 879466

Shared Experience

I would like to introduce you to two of our members who are happy to talk to you.

Lynda was diagnosed with Stage 1 cancer and in now in remission. She welcomes either letters or phone calls from you and can be contacted on 0181 304 6027 or alternatively send letters to Lynda Trebil-Cook, 56 Clifton Road, Welling, Kent DA16 1QD.

David's wife died of ovarian cancer two years ago and he is keen to talk to other members who have either shared the same experience or who feel that they would benefit from talking to him. You can telephone him on 0181 777 6859.

It could be you!

In the last issue we asked if any members would be prepared to represent Ovacome and speak to the media about ovarian cancer and their own experiences.

We would like to say thank you to all those people who responded. Some individuals have already taken part in interviews which were very well received.

There will be other similar opportunities in the coming months that you may be invited to take part in.

If any other members feel they would like to help in this way, please write to Sharon Eastwood at Ovacome, 47 Oak Tree Cottages, Danehill, West Sussex RH17 7HY.

Research

The GP project

Are you a cancer patient? What do you think cancer patients need from their GPs and primary care teams? Make your views known! We are running a project on behalf of the Department of Health to find out the views of cancer patients about the sorts of care and services they feel they need from the GP/primary care team (such as district nurses, practice nurses and others).

If you would like to contribute to this project by completing a confidential questionnaire about the services you, as a cancer patient, have received, would have liked, or still want from your GP, please contact Becky Miles or Jackie Ingram on

01865 728716, or write to The GP Project, Ashton Street, Oxford OX4 1EW.

The information given and views expressed will be kept strictly confidential and participants will remain anonymous.

Fone Friends Update

With Christmas and new year now well and truly over and Spring just around the corner, the last few weeks have offered welcome opportunities for maintaining regular contact with members already using the network.

And to those Ovacome members who have not yet made that first call, do please consider picking up the telephone!

With the help of new volunteers you will see on the revised map that the areas covered are becoming more localised. To help you define which area is most local to you, I have included towns and counties in the area descriptions (far right). But, as usual, I am always on the look-out for more help to localise these areas even further, so if you feel able to offer some time to Fone Friends, I would be pleased to hear from you. I would particularly like to hear from individuals who would be willing to develop the Fone Friends network in Scotland and Northern Ireland. Give me a call on 01825 790 147.

Sharon Eastwood

Open Houses?

Lorraine and several other members are still extremely keen to establish Open House meetings, as mentioned in the last newsletter, but we need more people to participate in order to make it successful. Sheila Wilks, who met up with other women in her area, found it enormously rewarding. Do read what she has written about it later in the newsletter.

An Open House will be held at Lorraine's on 20th May. Please contact Lorraine if you are able to attend. Any members who would like to host an Open House meeting or who would like to attend, please contact:

Lorraine Golding, 34 Great Queen Street, Dartford DA1 1TJ. Tel: 01322 289903

Yorkshire Area Fone Friends

In spite of the wintry weather - I'd been snowed in for several days unable to even get to the village -- and a 'flu epidemic that seemed to have hit most of Yorkshire, a few of us made the journey to the Meadowhall Centre, Sheffield, on 26th November and had the most enjoyable lunch together.

Meeting "strangers" in a busy shopping mall caused some amusement; I had arranged to stand outside M&S's door with an Ovacome newsletter and a list of names in my hand. It was amazing how many other ladies seemed to have chosen the same meeting place and were rather startled to be asked if they were looking for the Ovacome meeting - we could easily have recruited some new members! Maybe I should have worn a red gardenia in my hair!

Anyway, we all felt that we gained from having a good chat face to face, comparing notes and experiences and swapping tips on such matters as diet, coping with hair loss or changes in skin condition etc.

Any little niggling worries fade away when you realise that you are not the only one to have these problems - sharing personal experiences, an Ovacome aim.

We all agreed we were grateful to Sarah for setting Ovacome in motion and to the committee who have done such a marvellous job in just one year.

I hope to arrange another get-together in April or May possibly in Leeds. Anyone interested should contact me on 01484 602906, and I do recommend that other areas could either meet at a central venue or at one of the proposed Open House meetings if there is one in your area. I am sure that everyone will go home feeling that they have made some new friends and also it is good to be able to put some faces to Fone Friend voices.

Here's wishing continued success to Ovacome.

Sheila Wilks

Poem

From Milly, aged 10

Sadness is icy,
Mean and spiky,
It grows and grows,
And makes you cry,
Your eyes swell up,
Your face goes red and blotchy,
Sadness sucks up your stomach,
And an enormous monster is sitting in my throat.
I cannot speak,
Ghastly sadness,
My eyes grow dark,
And my heart weighs me down,
Uncontrollable sadness.
At last I drew my sword and cut its head off,
And then it had gone,
Gone forever.

 


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