Regular features

Letter from the Editor

What a great summer we've had (I think I was in France when it rained heavily in July): I hope many of you were able to take a break. My husband Ron and I are alone now all our children have fled the nest! My son Mark is in Australia for a year and my youngest daughter Beccy has gone to Sheffield University, I wonder how we'll get on? At least the house is tidy at last after thirty-odd years of striving to keep it so. I was really thrilled to receive so many photos for the competition, 1st prize went to Ann Davis, 2nd prize to Margaret Borthwick and 3rd prize to Ruth Payne. All the photos were personal favourites, and really didn't have to be ‘professional'. Thank you for all those who participated. We have produced a calendar with the photos, and this will be on sale soon please see the enclosed leaflet for details or ring the office.

Next year we would like to produce one or two new designs for our Christmas cards, so if any of your children or grandchildren paint a picture this Christmas which looks effective please send it in to us; prizes will be awarded for the most attractive designs. We have introduced another Christmas card this year to add to our selection: use this link for details and the order form.

As I mentioned in the summer newsletter, I am currently carrying out a study into ‘women's experience of ovarian cancer'. If you would like to take part, see this link for details. We are delighted to offer some new short sleeved polo shirts. They are of good quality cotton/polyester and come in three colours, light blue, navy and white. There is a choice of motif, either just simply Ovacome embroidered on the left hand side, or the Oak Tree and Ovacome in contrasting colours. Further details are on the back page.Well, until the next newsletter, take care.
Frances

Letter from the chair

Hello, and welcome to our autumn newsletter. The nights are drawing in, and the supermarket has stocks of Christmas cards (not as nice as the Ovacome ones though!!), so that s another summer over. We in Ovacome have had a busy few months. In July we held our AGM: it was wonderful to meet friends, old and new. Ruth has written more about this.
In August I was invited to a masterclass in clinical oncology, the first to be held by the European School of Oncology. Mr. Alberto Costa, the president of ESO, has determined that, as patients should be at the centre of care, study events should always include patient organisations. I feel very honoured to have been invited to such a prestigious event, and particularly to be asked to address participants as an after-dinner speaker. I spoke about the shock of diagnosis, and the importance of recognising the individuality of the patient. As a sea of faces stared back at me I thought of you all, and what you would tell these doctors — a wonderful opportunity to give your experiences a voice, and very well received. The week was very tiring, with lectures from 08.00 till 22.00, but I have learnt a great deal, and am excited by the advances being made in all areas of cancer care. It s a long road, but the researchers are travelling at a good speed.

Also in August we welcomed three new staff to the office. Lesley, Lisa and Nicola - who have all experienced ovarian cancer closely - join Ruth and Frances as part-time administrators. We are now looking at the sphere of activity undertaken by the Ovacome staff, and will be making some changes to further improve services. We shall report in the next newsletter.
One big change for us is the appointment of a director. The committee has felt for a long time that our growing charity activity over and above the office activity, was now too great for volunteers. We have placed an advert in the voluntary sector magazine for a part-time director, and we anticipate appointing at the beginning of November. The director's role is all-encompassing, but a key area we need to address is fund-raising. We are constantly amazed at the wonderful efforts of our members. You really are a fantastic bunch! However, our fundraising at this year's Ovacome day was severely reduced by the death of the Queen Mother. With continuing growth, we need to increase our income significantly. We shall write further on how we plan to do this in the next newsletter.

Last week Nina Irvine and I attended a cancer groups reception at the Labour Party conference. Sixteen of the UK's cancer charities have produced a manifesto to address areas of praise and concern in the country s cancer services. MPs, delegates, and the Health Secretary, Mr. Alan Milburn, attended. Mr. Milburn gave a short address praising the work of the charity sector, and promising greater cooperation in the future. I think Nina and I both felt that the collaborative spirit which has been present in preparing for and participating in the reception was truly inspirational, and something we will aim to continue. Well, it's time to sign off, with the warmest of wishes and hopes that you enjoy your Christmas preparations. I'm aiming to have it all wrapped and ready for Advent (but I seem to remember saying that last year!!). Much love.
Louise

From our postbag

The end of chemo......in limbo?
Having read the summer 2002 newsletter, I was so uplifted when I read Stephanie s story, as I too have had all these symptoms and side-effects from Carboplatin and Taxol, but I was given a fact sheet about the side effects when I left hospital. It was a really good idea having the side effects explained to me by the oncologist rather than just reading about them, although you do need this also. I found it very interesting to read this letter from Peter Walsh. I was speaking to my Macmillan Nurse about my feelings at the moment, and one of the things that came up was my reaction to the END of my chemo, and I would be interested to hear how other people coped with the feelings. I m in LIMBO. I feel that maybe something should have been done to finalise the last day of chemo. The last day for me was just a very ordinary day nothing special at all; nothing to signify this particular part of your life is over. I think each stage should be given a beginning and an end, but I m not sure how this could be done. Something perhaps that says "OK, well done, you've come through this particular part". I don't know how to celebrate the end of therapy , can anyone tell me what they have done? Thank you for this helpful newsletter.
Joy Allison

I can think of quite a few things actually Joy, why not celebrate by booking up a weekend away or a holiday throw a party or get together with an old friend. What about having a facial or massage? Treat yourself to a good book, video or see a film, or just knowing that at the end of treatment you can look forward to a day out at the coast and fish and chips. Please write in and tell us how you mark the end of chemotherapy but remember that your friends and family need to know that you want to mark the end of chemo, SO TELL THEM.

HRT and alternatives
I am a 24-year-old who last year was diagnosed with ovarian cancer. Having had a full hysterectomy and finished my course of chemo I started to take HRT in the form of tablets and recently I have switched to the patch. I would be grateful if I could share this experience with anyone with the same diagnosis or if anyone has information on HRT or other alternatives they think are useful.
Name withheld

Ascites
I have had ovarian cancer for eight years, and in that time I twice have had ascites (fluid in the cavities of the abdomen), which has now returned for a third time. Does anyone have any ideas or tips on how to slow it down, besides having it drained, followed by chemotherapy.
Eva Noone
Sherborne, Dorset

Collecting sponsorship
It was great to read of this year s London Marathon successes. My admiration for those who do it grows with every year that passes. It s not just the run; it s the commitment for months of hard training that deserves so much praise. It s so easy for me to say, I didn't do it, but for the 2001 marathon I was fund raiser, counsellor and training support for my friend Andy Kandrettis who ran in memory of my late wife Lindsey who died in 1998 of ovarian cancer. It s after the run that the financial business of collecting the sponsorship dues begins, and this can be a sensitive issue. That was one of my jobs, and whilst about 80% of the funds arrived without too much difficulty, it s the final 20% which tends to need patience and diplomacy. My advice is, don t give up. Every penny helps and it is important to gather all that is promised. One technique which worked for me was to send a regular update to sponsors detailing how much had been gathered from the amount promised, telling them how important the money was, and thanking them for their support. This tended to jog memories, and as the "due" amount became smaller people seemed to "identify" themselves and send the money. We collected £3,250, there is still £100 outstanding and I will get it!

There is another £1 50 to add as well. I was one of those who received a letter from a well known life insurance company, canvassing my late wife for insurance. Naturally I was upset at their carelessness and wrote to them expressing my views and suggesting they gave a meaningful donation to Ovacome to atone in part for their action. To be fair I received prompt and courteous attention and confirmation that £150 was sent in memory of Lindsey.

So, you see, there are ways and opportunities to increase your marathon amount, don t be discouraged, keep at it and good luck.
David Bloomfield

Medical insurance
With reference to Joan Cobden's letter in the spring newsletter I would like to say that not all medical insurance companies are unhelpful. My mother was diagnosed with ovarian cancer in June 1998 and required surgery, then chemotherapy Although surgery was arranged under the NHS, a week after the initial diagnosis she opted to go privately using my father's PPP cover. Mum died in June 1999 and throughout the year she had excellent treatment all paid for by PPF? They didn't question any of the bills and, apart from the small annual excess, they paid out in full for all the treatment, including the final three weeks when she remained in hospital, where she knew the nursing staff. My father is now being treated for various ailments again, PPP are meeting the costs of consultations etc. Whilst I'm truly sorry Mrs Cobden didn't have satisfaction with her private healthcare insurers, from my experience they have been very helpful and understanding. Whilst writing, I find the newsletter very interesting and inspiring thank you for all your hard work.

Fertility and private health care
I thought I would write regarding the two recent articles in the summer issue regarding private health care (Denise Wragg) and fertility issues. I was diagnosed with ovarian cancer when I was 23, nine years ago now. We had been trying for a family for nearly two years when I consulted my doctor. I
was told that I would have to wait four to six months to see a gynaecologist and, being very impatient, I decided to go privately The consultant discovered a cyst on my ovary and within a week I was booked in to have it removed (this was considered straightforward and nothing sinister was ever mentioned at this stage). On coming round from the operation I was told that they d had to do a complete hysterectomy as they had discovered cancer within the cyst, and this had been wrapped around my bowel, the other ovary had also been affected, but I d had no symptoms! I was given no warning regarding the hysterectomy and found it difficult to deal with emotionally I was never offered any counselling. I was given a
course of carboplatin as a follow-up treatment. If I had not gone privately for the first consultation, I would have had to wait up to six months for an appointment to see the gynaecologist as I was told initially
Regarding children, we started the long road towards adoption. It took us two years to be approved (owing to my health status) and we were then placed on a list. We are now the proud parents of a little girl (she arrived at four months and is now five years old), and are currently being matched with another child. It has been a very long but a really worthwhile one!
Lynette Lowes
Cumbria