Regular features
Letter from the Chair
Hello, and welcome to our autumn newsletter. As I sit here and recall the past three months (disappointingly cool and wet), I'm amazed at how the summer has flown by. I know it's been a busy one, but it only seems like yesterday I was writing for the summer newsletter. Firstly an apology. Some of you have been getting patchy delivery of your newsletters. This would seem to be a distribution glitch, rather than the database (I always consider a computer to be the prime suspect in any problem guilty till proven innocent in this household!). Hopefully the situation is now resolved, but if you experience any delay in getting this newsletter please let us know in the office. It should reach you during the first week in October.
It's been another busy summer for Ovacome. In July we held our AGM at the Women's Hospital, Birmingham (see below), and once again it was wonderful to see so many old friends there, and new ones too. This year seemed busier than ever, and certainly lived up to its lively reputation. It is also a time of farewells and hellos, but, most importantly, thank-yous, in particular to your committee and staff. This team is tremendously hard-working, all with jobs and families, as well as for many their own health worries. I've known e-mails being sent in the small hours, family members hauled into service when there are deadlines to meet, holidays scheduled around meetings. But what strikes many visitors to our committee meetings is the dedication, compassion, and total loyalty to Ovacome members. They really are a fantastic team.
Thanks also go to our great band of Ovacome volunteers: Fone Friends, Adopt-a-Hospital, fund-raisers. Without them, Ovacome would simply not function as it does today. I don't know of any other organisation which offers such a comprehensive service to its members, and we are able to do this because, despite their own worries, we are fortunate to have loving, compassionate people who want to help others. We owe them a huge debt of gratitude.
Other news: our new office will be based temporarily in Barts and will be up and running in October. We will be moving to a permanent location in April next year.
We are in the process of planning events for next year's Ovacome day, as always held on 8th April, in celebration of the birthday of our founder, Sarah Dickinson. There will be a press campaign in the month leading up to April, so many thanks to those of you who returned your questionnaire, and indicated your willingness to speak to the media. We may be in touch!!
Well, I sign off with the worrying thought that next time I write it will be Christmas!! I'm nipping to the garden to enjoy the remains of the summer's evening - yes there were one or two!
Love, as always, Louise
Letter from the editor
Welome to our Autumn 2000 newsletter. Where does the time go? I cannot believe that the summer is nearly over when the sun has hardly shown itself at all over the last few months.
Well, my life has now changed dramatically - but for the better, I hasten to add. Grace Jane Howells arrived into the world on 5th June 2000 and is an absolute angel. She could not be better. She is growing at an incredible rate - from 5lb 8oz at birth to over 12lb now. She has even been sleeping through the night for four weeks - people keep on telling me that things may change, but hopefully she will continue to be as good as gold. I never realised that you could love anything as much as David and I love our special, long-awaited child. For anybody who is thinking about surrogacy, but has inhibitions, I would strongly recommend it - we had some bad luck before Grace's arrival but it is all worth it in the end. For those infertile people out there, I will say it again - DON'T EVER GIVE UP HOPE.
I hope you enjoy this newsletter - we have had a lot of people working hard to raise money for the charity over the last few months and their stories are included in this issue, hopefully to motivate and inspire you to do the same. Fun can be had whilst raising precious funds as the photos also demonstrate. With time moving so fast, perhaps now is a good time to think about 8th April 2001 - OVACOME DAY. If we can plan early it should make our events successful.
Our Christmas cards are now available for sale also - they are beautiful cards and a very good way to help raise funds. This year we are pleased to add the "Doves of Peace" card, chosen to demonstrate peace and tranquility - it was a favourite of mine and I hope you agree.
If you would like a Webb Ivory Catalogue to both help raise funds and start your Christmas shopping early, please call me on 01489 798944 and leave your name and address so that I can send you a copy. To explain more: you will need to set up your own account and distribute your own parcels but 25% of all orders goes to Ovacome. I have been running a catalogue myself and have so far managed to raise nearly £100 - every little counts to help run our charity.
If you attended this year's AGM, I hope you enjoyed it as much as we all on the Committee did. In my opinion it was the best so far and I would like to thank Belinda for all her hard work in helping to organise the day. The speakers were fantastic and the audience gave us, the committee, some good ideas to help promote ourselves even more. Hopefully with the Cancer Collaboration we can continue to raise our profile and grow from strength to strength.
Well, enough of me, please enjoy reading this issue and continue to send in your stories and tips for me to include in future issues.
With love
Debbie
Fone Friends Update
Having been involved with Ovacome in a variety of roles from the very beginning, I am now pleased to be taking up the challenge of running the Fone Friends Network. I shall be relinquishing my administrative responsibilities as soon as the Ovacome Office is fully established and thereafter dedicating my time to the network.
I am hoping to put many more of you in contact by telephone and am looking forward to working with the area co-ordinators to make this possible. The Fone Friends Network is constantly evolving and I would like to be able to assign additional area co-ordinators to help with those already playing a valuable and effective role. If you are interested in helping with the co-ordination of an area, please telephone me on 01295 768697. In particular, we are looking for a new Area 14 co-ordinator as Val Webster has resigned. All at Ovacome would like to thank her for her hard work over the last couple of years.
Many thanks to all those who completed the Member Details Form from the summer issue of the newsletter. It has provided me with an enormous amount of information and will prove invaluable in helping me to put people with specific needs in contact with one another via the Network. You may not previously have used Fone Friends but there could not be a better time than now to pick up the phone and ask to be put in contact with someone. We have a staggering percentage of members who are willing to talk and/or listen to you about any aspect of ovarian cancer.
Finally, I am sure you will all join with me in thanking Karyn for the incredible amount of time, energy and effort that she has put in to the Fone Friends. She has done a wonderful job and will continue to be actively involved as a Fone Friend. Thank you, Karyn.
With best wishes to you all,
Alex Whates
Our Friends in the North
We had a very successful Ovacome Day 2000, the North East Fone Friends had an excellent luncheon at the Side Cafe in Newcastle upon Tyne, preceded by a very interesting talk by Marion Robinson, a member of Ovacome who works for Northern Region Genetics, on the genetic links for OC.
Margaret Borthwick
Twins offer cancer guard?
I found this useful information in a clipping sent to me from the Oldham Chronicle. Giving birth to twins may help protect women from ovarian cancer, according to new research. A review of eight studies of 2,800 women with ovarian cancer and 7,400 without the disease, shows that the chance of developing the most common forms of tumour is reduced by about a third for mothers of twins.
Book Review
Shadow in Tiger Country
One last year of love
Louise and Tim Arthur, Harper Collins, £5.99. ISBN 0-00-653242-X
This book stayed in my mind long after reading it. It touched my heart, made me laugh and gave me courage. Above all, it's a love story.
Aged 27, Louise Arthur was told that her brain tumour was untreatable and she had a year to live. She and her young husband, Tim, were determined to fill the year with fun, love and achievement for them and their three-year-old daughter, Caitlin.
One of the things Louise did was to set up a web site where she kept a diary of her responses to her changing illness. This was amazingly successful, with over 300,000 contacts from people worldwide, generating e-mails and discussions. The web diary was so amusing and poignant that the Daily Mail gave Louise a weekly column and a publisher asked her to write a book, which thrilled her - one of her ambitions fulfilled, a proper published writer!
Half the book is composed of Louise's web diary entries. These are interspersed with Tim's responses to events, often entertainingly written and painfully honest. Louise wanted to make every second count and they had wonderful times, working through her list of things she wanted to do: visiting New York or drifting over the English countryside in a balloon. She also wanted to make memorable her everyday time with Tim and Caitlin: cooking, playing in the park, watching TV, talking, and cuddling. Her diary describes her thoughts and feelings concerning the memories her daughter will have of her. Characteristic is her advice to Caitlin to "disregard those wicked stepmother stories like Cinderella. Be nice to your stepmother".
Louise, like many of us, said she learned a lot about herself and life through being ill, but what really struck a chord within me was that she didn't allow cancer to change the essence of who she was: she didn't want to be overtaken by the role of a "cancer patient". She remained Louise: a creative and talented photographer, a loving wife and mum, a good companion, stimulating and sometimes outrageous. For these are young people, in their twenties, full of dreams and enthusiasm and mischief, and this comes through in the style of writing, refreshing colloquial, uninhibited and willing to dig for the emotional truth underlying thoughts and actions.
There is so much here that speaks to those of us who have had our lives changed by illness. Reading it, I was inspired to re-evaluate my own attitude towards living with cancer.
I said this is a love story and so it is, the love and support of family, friends, children, strangers (who brought pies and flowers to their door). Above all it is a story of a young married love with all its passion and romance, of two young people, deeply in love, facing a tragic time and turning it into something valuable.
Valerie Jardine
East Sussex
Fundraising News
Bryan goes bald
On 3rd April 2000 my husband Bryan had all of his hair shaved off at his work place, Dupont (UK) Limited, to raise money for Ovacome and CLIC. He raised a grand total of £1,050 and we are delighted to donate £525 of this to your cause. This money is sent in memory of Kirsty Saunders who unfortunately lost her fight against ovarian cancer on 7th February 2000.
Mrs AJ Butler
Gloucester
Editor's note: Our thanks and appreciation to Bryan for being brave enough to have his long hair shaved - well done.
Another marathon man
Our thanks go to David McBride for the £1,235 that he raised from completing this year's London Marathon. He would also like to send his thanks and gratitude to all who sponsored him.
David has been bitten by the marathon bug and is hoping to compete again in the year 2001 - are you interested in taking part? If so, please contact Frances on 07071 781861 to see if you can have one of our five gold bond places.
Thanks again David.
Chalgrove chuggers
A "fun run" in December raised a staggering £2,200 for Ovacome.
Starting and finishing from a 17th Century pub, The Red Lion, in Chalgrove, Oxfordshire, the four mile course along mainly bridleways is open to all ages and modes of transport, provided it is under your own steam.
This annual event, run for a different charity each year, saw competitors with wheelbarrows, sponsored dog walkers and children on bikes and in pushchairs. Everyone who completes the course is given a raffle ticket, the prizes are then drawn as a raffle.
Competitors are sponsored to complete the course, donations are made for the raffle, t-shirts were kindly donated by Four Forte Clothing, Kettering.
The Red Lion pub opened especially for the day of the event and donated its time free and gave a percentage of the day's takings (what better excuse do you need to stay in the pub!). Everyone had a lot of fun and some exercise and could stay and enjoy a drink in the knowledge it was all in a good cause.
Chalgrove Chuggers, c/o Ian Shortman, 31 French Laurence Way, Chalgrove, Oxon. OX44 7YF
Flora Light Fun Run
It was a brilliant experience. We were going to walk the three miles briskly but we found ourselves near the start with the runners and found it very difficult to push our way further back. So we decided to start jogging. When the gun went off we got carried away with the excitement and jogged the first mile and a quarter, walked the next mile and finished jogging. A great achievement for me and my daughter as we have never jogged before. We have vowed to do it again next year but hope to run it all providing I'm still fit as I am having a few problems with my CA125 at the moment. I hope you like the photo of us all smiling with our medals (I'm on the right, with my daughter in the middle, all wearing our Ovacome t-shirts).
It was a brilliant day but it is so sad to think that people have to do all this to raise money for cancer charities when no money is forthcoming from the Government. Anyway next year I'll be looking to raise even more for Ovacome. Lots of love and best wishes
Linda Morton
Editor's note: Our thanks to Linda Morton, her daughter and sister-in-law for the £400 they raised by taking part in the run
Three go sea to sea
Many thanks to all who sponsored James, Phil and me so generously. A special thank-you to Martyn Hammond, who gave up his weekend to drive our support vehicle, and without whom the ride would have been a good deal less enjoyable, if not impossible.
Day Minus One: Left the office at 14:00 and eight hours later arrived at St Bees Head, Cumbria. We took the bikes off the bike rack and tested them round the car park. One member of the team promptly fell off (no names - Phil) and made the B&B owner question our ability.
Day One: Raced down to the headland to pose for the album snap and, with the ice-blue Irish Sea behind us, kicked off on the 210 miles of road, trail and bridleway. We managed to get a whole mile out of town before getting lost: luckily a girl in a passing car shouted at James from her window that the path was "over there" - a great start.
Passed through Rowrah, Ennerdale, Lamplugh, Loweswater, Thackthwaite, Lorton Vale, Whinlater Forest, Braithwaite (James and Martyn saved a baby sheep from certain death), Keswick, Threlkeld, Dockray, Matterdale End, Pooley Bridge (lots of ice cream), Askhem Fell (hopelessly lost - pushing bikes up treacherous broken stone path for an hour), Bampton and Shap (fish and chips and bed). Total nine hours in the saddle - ouch !!!!!!
Day Two: We're off - Crosby, Ravensworth, Bank Moor, Maisongill (wrong way three times and an hour and a half trudging up some stupid mountain - getting a little bit $%£$"£ off). Detour round Great Ashby, Whygill Head, Soulby, Kirkby Stephen, Rookby (wrong way (through valley), wrong way (head-on wind for eight miles), wrong way (asked a geezer at a pub), wrong way (where is James?), wrong way (sod this!), wrong way (2.5 miles to go - it was more like 10), Danby Wiske. Booked into the White Swan (Mrs Watson - Les Paterson's wife. Mr Watson - nearly pushing up daisies). Watched England stuff the Germans - marginal victory - and went to bed - all in the same room?? Wind-breaking competition and sleep. Total 10 hours in the saddle - Aaahhhhh!!!!!!
Day Three: Thighs really hurting and no feeling left "you know where", but 17 miles behind us by 09:15. The villages of the North Yorkshire Dales gave way to moors and names that are now just a blur. Long, gradual 'gut wrenching' climbs with Martyn's Galaxy looking very inviting. I got told off by Phil for pushing ahead (choice coming from the one who's been in front the whole way!). Suitably chastised I become anchor-man and we all push the final 30-odd miles together to Robin Hood's Bay (felt more like 300). Total eight hours in the saddle - F^%*$£" ^%!"£~S!!!!!!!!
A naked wash-down in the public toilets (Oy, copper - there's three of George Michael's mates in the WC with no clothes on!) and we're back on the A1 heading home.
Thanks to the other lads and thanks for the money which I will be collecting soon - a grand total of £1917.
John
Nurses put their feet up
Nurses at Reading's Dunedin Hospital got the chance to slow down and relax as they were pampered for the day. More than 40 nurses enjoyed their choice from aromatherapy, reflexology and massage sessions. Treatment was provided by nurses Sue Glover (pictured right), Lynn Gillard and Kerrie Marston and medical secretary Margaret Althorp. Sue said "Nurses do so much for others that we thought it was about time for them to be pampered. All the nurses said they felt wonderfully relaxed following their treatment and there is a strong demand for us to run the event again next year."
The nurses who underwent a treatment were invited to make a donation to charity and £100 was raised for research into breast and ovarian cancer - £75 was sent to Ovacome.
Susan Glover
Reading
Editor's note: Our sincere appreciation to all who kindly donated their hard-earned cash during this very enjoyable day.
Ann's Ovacome Day
We had a real fun Ovacome weekend in my village. A traditional Friday coffee morning, bring and buy and cake sale which attracted lots of village ladies plus people from Dereham and surrounding villages. Saturday saw the pub crawl with a great non-drinking minibus driver taking a group of beer lovers on a tour of Norfolk pubs. This event was all arranged in advance and most of the pubs visited had never heard of Ovacome.
We raised and were promised lots of money.
The highlight for me was the arrival of our son from Brooklyn, New York, with $800 raised from his work and in his neighbourhood. He's pictured on the right with me and his surprise donation. All very exciting.
It took blood, sweat and tears to get the sponsorship in and I still haven't got it all. A complicating factor was my stay in hospital and a palliative care unit from 17th June. My kidneys failed and no-one expected me to pull through - but I'm still here to tell the tale and am battling on. Best wishes
Ann Gregory
Norfolk
Editor's note: What an inspirational lady you are. Our thanks go to you and your friends for sending in your cheque. Ann is proof that you can combine having fun and raising funds. Thanks again to you all.
Fund for 'at risk' women - can you help?
My mother and cousin have both died of ovarian cancer and so I am at higher risk than the norm for getting it. I am on the Bart's screening programme, which is how I know about Ovacome. Both my mother and my cousin suffered from delay in diagnosing the condition and I've recently had personal experience of the inability of the NHS to carry out speedy checks into symptoms which may possibly indicate ovarian cancer.
As I have no children I propose to set up a trust in my will for funding (in a small way, unfortunately) the cost of private tests for ovarian cancer for women who cannot afford to pay for this themselves and do not want to wait six weeks for an ultrasound scan - as I had to (even after turning up in casualty and saying I was on the Bart's programme).
I read frequent stories in your (very good) newsletter of women failing to get early enough diagnosis of the disease and I support wholeheartedly the campaigns being run to improve NHS facilities for this. In the meantime, however, I would be interested to hear from anyone who thinks that a fund created now to pay for tests on 'at risk' women would be a good idea.
Your readers may also be interested to know that it is possible to circumvent uninterested or dismissive GPs by going to clinics run by (I think) Medicare at mainline stations, at least in London, where doctors will refer you for private tests. The costs are a flat rate consultation fee of £40 plus about £200 for the tests. In my experience you need to know as quickly as possible whether your symptoms are ovarian cancer or not as the fear that not knowing induces is quite crippling!
I look forward to hearing from you.
Yours sincerely
Elizabeth Jones
Kent
From our postbag
Link-up please
I'd love to talk with any readers who are, like me, in remission and keeping well but with a very high CA125 (896 at the last count). It is five years since I had surgery - the CA125 never went to 0 - even after seven months of chemo the best was 30. Since then I've made a great recovery with the help of many complementary therapies and healing. At my four-monthly check-ups the numbers creep up and up but nothing is detected. The consultant cheerily says he thinks I must have a tumour but am keeping it under control, and things like "you are in symbiosis with your tumour!". Sometimes I feel very heartened by this, other times I can terrify myself with the high numbers.
If anyone else has experience of keeping steady while the CA125s stay high, I'd be very grateful if you would contact me. With best wishes,
Sarah Jones
London
Travel Insurance
In May 1999, I booked a week's break for my husband and me for Easter 2000. At that time I was two years into remission with ovarian cancer. On Christmas Eve 1999 my consultant confirmed tumours in my scar tissue and I started chemotherapy in January.
As our holiday was booked and paid for, we were determined to go, so with the full approval of my oncologist I informed my travel company. They referred me to their insurance company who advised me they could not cover me for the cancer and to think hard about travelling abroad uninsured, so I tried Travelcare as recommended by Ovacome. They were very understanding, kind, polite and efficient but could not offer me cover whilst I was receiving chemo, although they did say they could offer me cover at a very reasonable rate once out of chemo for three months. I then read the letter in the Spring edition recommending the PO and through them got cover for my condition with full repatriation to the UK if necessary. We have just returned from our break and how wonderful it was to have a week of warm weather to set me up for my next treatment.
I'd just like to say to anyone in the middle of treatment and debating whether to take a short break: speak to your consultant and, if you get the OK, then go for it. Aim for a country with good hygiene and medical care, not too far away, as travelling can be tiring - and best of all have a great time.
Madalen Baynes
Herts
Just a short note to let you know about a very helpful insurance company that I dealt with recently called Towry Law Insurance 0870 735 3025. They were really most helpful and agreed, after a short telephone conversation and medical history check, to cover me fully for my holiday to the USA in July this year, even though I will be having chemo before my departure and my second relapse in less than one year.
Many companies, including Travelcare, were not prepared to cover every eventuality inclusive of my cancer and any treatment/hospitalisation in the USA due to this, but Towry Law were polite, courteous and most helpful and reassuring. At £291 for two weeks cover it may seem a bit pricey but really worthwhile for peace of mind. I am sure I can relax and enjoy my holiday free from the worry of huge costs if anything does happen.
Hope you and your readers find this information useful.
Anne Duffy
Fife
In June 1999 I contacted Travel Care for insurance for myself and partner for a three-week holiday in Europe. Because I had not been clear of hospital treatment for six months, they would not cover me, though if I had been the cost would have been £150-200 for me and up to £100 for my partner.
I contacted numerous insurance companies and got responses from "yes we'll cover you with the exclusion of anything relating to the cancer" to "no we won't cover you". The AA said they would decide when I provided them with a detailed doctor's letter. I didn't want to be hassled to contact my doctor or pay for him to write the letter.
I then contacted Direct Line who had insured me for a previous holiday I'd had to cancel due to being operated on to remove tumour - they paid out in full for this. They asked me just three questions, all I which I answered no, so to be on the safe side I advised of my condition and they said "fine you are covered (cancer included)" for a cost of £44.84 for myself and my partner.
Paula Shenton
In memory of Jenny
I looked after Jenny's German Shepherd dog, Nero, when she went on holiday. We became very good friends and then the terrible blow - the doctors thought she had ovarian cancer. It was sadly confirmed and I looked after Nero for over a month. She wrote to Nero and I wrote back on his behalf to say that he was missing her but loved his life with my four dogs and me. I later had Nero when she went back to hospital for chemotherapy.
We always discussed her treatment but often we talked about dogs. I do dog rescue and she enjoyed meeting the dogs I fostered. Nero was a rescue dog and she'd settled him in his new home with love and commitment. She often gave me a small donation for my advertising fund and wanted to know how various rescue dogs had settled in their new homes.
Sadly, after fighting her cancer for two and a half years, she died a few weeks ago. I miss Jenny very much but her story is one of strength and determination. She had friends, family and interests (she was a keen bridge player). She was positive, loving and she fought her cancer with an iron will. I respected her and admired her positive attitude. Nero now lives with one of her sisters, who loves him.
In memory of Jenny, a strong and beautiful woman.
Helen Harrold
Ewhurst, Surrey
Useful Contacts
Women's Health
Helpline: 020 7251 6580 (Monday, Wednesday, Thursday and Friday 10am - 4pm)
52 Featherstone Street, London EC1Y 8RT
This charity provides information on women's health, mainly on gynae, reproductive and sexual health issues. It has a range of leaflets, a quarterly newsletter and a reference library for women. It also holds an extensive database containing self-help groups and individuals who can offer support.
Royal London Homeopathic NHS Hospital
Sheena Wyllie (Macmillan Nurse Specialist): 020 7837 8833
Great Ormond Street, London WC1N 3HR
This is a programme of complementary cancer care on the NHS to support quality of life and wellbeing which may be used in conjunction with conventional cancer treatments. Homeopathy and a range of other therapies are included in the programme. Referrals to Dr Sasie Kassab, Director of Cancer Services.
Maggie's Centre
Laura Lee: 0131 537 3131
The Stables, Western General Hospital, Crewe Road, Edinburgh EH3 2XU
This centre offers emotional and social support to anyone affected by cancer. They offer information in the form of booklets, lending library, tapes, lecture series, nutritional workshops and Internet access. The centre also holds group support sessions provided by a specialist clinical psychologist and a weekly expressive art group. Relaxation is also provided by relaxation therapists.
