Regular features

Letter from the Chair

Welcome to the Autumn newsletter. At last we've moved offices! And I thought house moves were stressful! Our new office is still on the St Bartholomew's site, so our address and phone numbers are unchanged, but we are more centrally located, with more phone lines, more space, and so at last we welcome a new member to the office team. Christine Kelly is a long-standing Ovacome member, and joins us from her background in the NHS. This move enables Ovacome to further meet the needs of the ovarian cancer community, and is in large part down to the great generosity of Ian Jacobs, and the gynae cancer team at Barts. Our sincere thanks to them for all their help.

In the beginning of October your committee is holding a strategy day. This gives us the opportunity to look at how the charity has been complying with its aims review successes and identify as where we need to improve. We are again lucky to have a fantastic team on the committee and I look forward to reporting our plans for the coming year in the next newsletter.

Some of you will have received questionnaires in the past few months. These have been distributed to some Ovacome members to enable us to prepare submissions to the National Institute of Clinical Excellence (NICE). NICE is the organisation, which reviews trials, and other evidence, looks at side effects, and cost, and makes a recommendation on how certain drugs should be used. They are currently reviewing Caeylx, and re-looking at Taxol. Ovacome has submitted evidence to these reviews. The cornerstone of this evidence has been the views, and thoughts of the ovarian cancer community. Many thanks to all of you who took the time to send the questionnaires back. It really does make a difference. We realise that some of the questions are repetitious, and asks for information you have already given us, but for ease of assessing, and most importantly to maintain confidentiality for some members, we have to ask again! We shall, of course, let you know as soon as the results are published. It is with great sadness that we say farewell to Debbie Howells, for whom this is her last newsletter. Debbie has been a fantastic asset to Ovacome. As an ovarian cancer patient she has startled and impressed us all with her generosity of spirit, her open and honest nature; as the charity administrator, she was caring, informed and WORKED TOO HARD!!!!! Later, as our newsletter editor, she did a fantastic job of pulling together the best of our efforts, to produce this fantastic publication, which I know is eagerly received and greatly appreciated by so many of you. Debbie -- we will all miss you.

As always your committee welcomes thoughts and ideas on how we can improve services to members, and the community at large. Please do feel free to write to us via the office. Till Christmas (is it that time already?), with much love.
Louise

Letter from the Editor

Well, I am sorry to say that this is my last newsletter and I am very sad to be leaving this responsibility behind me. I have absolutely loved producing the newsletter and have learned a great deal along the way with my involvement with the charity. But, as I have said before, I am five years post-operation now and feel that I must concentrate on my family life. David and I are on the verge of moving, and once settled will be adopting either one or two children to complete our family. The foster children that we are currently caring for will be moving on and so will our lives.

I have a lot of instability in my life at the moment and am really looking forward to being settled with a complete and whole family. It has been a long time coming, but when it does we shall thoroughly enjoy it, I know!

I have made some good friends through being involved with Ovacome and I would like to wish them all the very best with their futures. The charity is just growing stronger and stronger and I am sure will continue to go from strength to strength. It has a good set of committee members who dedicate a lot of their spare time to the cause, all on a voluntary basis. Louise is an absolute star: as someone who offered to take up the post of Chair on a temporary basis well over a year ago, she has done an outstanding job. As well as this role she is caring for two young children, her husband, Duncan, and holding down a part-time job as a midwife. Louise, I take my hat off to you. Well done!

Frances Hodges is going to be taking over the editorship of the newsletter, and I would like to take this opportunity of wishing her all the very best with this new role. I can still remember when I travelled to Kerry's house to take over from her. I was petrified and didn't have any idea of what would be involved. Where would I get the information from and who did I contact with queries, etc. But I needn't have worried it all fell into place and you, the members, have helped me to develop and I hope improve it. Please continue to write to Frances at the office with your articles and also with any thoughts you have for improvement or medical information that you would like included. Good luck, Frances. Well I hope you enjoy this issue. God bless to you all.
Debbie

From our postbag

Thanks from Jenny
Your articles and letters came just at the right time for me, last week. I was feefing so anxious and ill, almost unable to bear the wait for a scan, and then the result, as for the third time I have a lump and raised CAl 25. I have already had surgery three times and Carboplatin and Taxol. However, the time has passed and the scan result was good, nothing in the abdomen or "important areas , and the peripheral lump is going to be treated with Tamoxifen, to see if it reacts to that. Most of my symptoms have disappeared over a week, I think it was something like irritable bowel symptoms, because I was so anxious.

I felt inspired to write to tell my story to give hope to others who are feeling anxious. I was diagnosed in 1992, so despite my three lumps and setbacks I am still quite well - almost ten years on. I am taking early retirement (aged 59) on ill health grounds, so haven't quite made it to my pension.

Like your correspondent Marilyn Blackmore, I have suffered from the condition (I can't remember the name!) of not being able to find words, names or even the end of sentences. Does anyone remember the Two Ronnies TV show. They did a series of sketches, where one would pause to think of a word or phrase, and the other would jump in and finish it for him with hilarious results. Well that's the situation I've found myself in quite a few times! It has improved since finishing the chemo, but many people tell me it's a condition that comes with age anyway!!
Best wishes to you all.
Jenny Bentley
Brixham, Devon

Tingling fingers - does this happen to you?
I was diagnosed with ovarian cancer five years ago and had six sessions of Carboplatin and Taxol two years ago. Half way through treatment I experienced tingling in my fingers; the oncologist did consider stopping treatment but after a doctor had tested my fingers decided to continue. The fingers still tingle slightly some days but my feet are terrible. I think they are getting worse. Several GP's have said the nerve ends have been affected and that eventually they heal but my feet are so bad they have started to affect my walking by discomfort in my legs. It is hard to describe the feeling, my feet feel swollen and although they are numb I can experience touch, it's like walking on bare flesh. My GP has got me an appointment with a neurologist for next January (2002). I am 80 next year and so I hope I shall be able to make it!
Joy Houghton

Editor's Note: has this happened to you? If so please contact joy at 15 Barton Mill Court, Station Road West, Canterburty CT2 71Z. I am sure it will help her to know that she is not alone

Travel Insurance
Thanks for an excellent summer edition: I felt there was something for me on every page. I was diagnosed with germ cell cancer last November and after surgery and chemotherapy am doing fine! I am busy planning overseas holidays and decided to take advantage of Medi-cover. However, I got quite a shock. First, they only do single trip policies and my plans are to go to Greece, USA and China in the next year. The Medi-cover quote for 10 days in Greece was £236 and for three weeks in the USA £836!! I didn't bother to ask about China . I then went to Tesco travel insurance, which I found on the Cancer-Bacup travel insurance fact sheet. They quoted £286 for an annual policy which will give me full cover for my cancer and asthma on all my planned trips. So beware: it seems that some companies actually don't really want to cover us and so offer exorbitant quotes that are just plain ridiculous. Thanks again though, as at least the article was the catalyst to get me organised!
Louise Bouch-Standon
London

Editor's Note: If anyone knows of good insurance companies please let us know. The more information we get from our members the better. Thanks Louise for this very useful in formation

Sorry that you're leaving, but understand the need for a "normal life. Thank you so much for your kind support to us all. Just some feedback on Med i-cover travel insurance: they quoted me today a premium of £574 for a four-day trip to Paris next month. Thankfully Travelcare are able to cover us for £24 - what a difference! Both were helpful and efficient.
Bye for now and good luck in all you do - you deserve it.
With thanks
Pat Dawe

Help at hand for problem nails
I am writing to pass on a tip which may be of interest to patients having chemotherapy. During and after my recent treatment I had problems with my nails splitting and peeling. My niece suggested I try Sally Hansen's Maximum Growth - a clear polish applied every day for 10 days. After this period apply every other day for five days. This has greatly improved my nails, I can now put tights on without wearing gloves to stop them from snagging. I didn't use the polish during treatment as I didn't know about it then. I hope this helps people with the same problem.
Mrs Judith Hall
Preston