Regular features
Letter from the Chair
Hello, Well what a month! April is always a busy month here at Ovacome. As many of you know, April 8th is Ovacome day, when we celebrate the birthday of our founder, Sarah Dickinson, with a day devoted to raising funds and awareness of ovarian cancer. Once again, we have been delighted to work alongside Lisa Quinn, Georgie Carter, and the team from Band and Brown communications. We have been very successful in placing stories across a broad media base. This year, however, many of our planned events were postponed or cancelled due to the official period of mourning for Queen Elizabeth, The Queen Mother, including the first Conga against Cancer. A hardy bunch of members, having put it in their diaries, still made the trip to London, and joined us in walking the route. Many thanks to all concerned, particularly Louise Joly, who organised the event. It was a lovely day, if a little windy, and I m really looking forward to a HUGE turnout next year.
I have been delighted to accept an invitation to join the editorial board of a new magazine, being launched this month. Called I Can, it is specifically for those concerned with cancer. There is a fantastic team behind it, and its editor, Jean Mossman, is a great friend to Ovacome. Jean used to be the Director of Cancer Bacup, so we couldn't ask for more skilled leadership! The magazine will be free, and distributed in hospitals, surgeries and by subscription. Hayward Medical, the publishers, are supplying a copy for each Ovacome member, and we shall be sending you the first edition as soon as it's off the press. I hope you enjoy it! Please be assured that we will protect your confidentiality and no personal details will be passed on.
May I close by drawing your attention to the advertisement opposite. We are looking to replace two members of staff. Jo is going on maternity leave, and I know I speak for you all when I wish her the happiest of times with her new baby, due in May. Sadly Christine Kelly has resigned from her post here at Ovacome. The committee would like to take this opportunity to thank Christine for all the hard work she has done over the past few months, and wish her future success. The office continues to be the centre of Ovacome activity, and as the charity continues to grow, so we are now looking for more office space. If you, or a relative/friend work in London, and think you may be able to help, please do contact me via the office. Wishing you all a happy springtime. With love
Louise
PS: As we were preparing this issue of the newsletter we heard that some members have already had copies of I Can. Profound apologies from Hayward Medical for jumping the gun and also for sending some recent copies in clear wrappers. It won't happen again!
Letter from the Editor
Welcome to the Spring edition of the Newsletter. I've been really thrilled to receive so many letters and articles for this issue; thanks to those of you who wrote in wishing me well, it was truly appreciated. Well, what an eventful time for our nation since the last newsletter, Princess Margaret's death, followed shortly afterwards by Her Majesty the Queen Mother's.
Unfortunately our Conga for Ovarian Cancer on Ovacome Day had to be postponed, as it was felt that dancing alongside thousands of mourners queuing along the Thames would be inappropriate.
Some of us still gathered together and completed the walk from Tower Bridge to the London Eye, holding our Ovacome banner and handing out to the crowds our Conga fliers and details of Ovacome. It was a glorious day, quite chilly but the sun shone brilliantly. We had quite a few children in our party and they were terrific, they just held out the leaflets for people to take if they chose to, they showed dignity and respect. I was really proud of them. As we walked along it was a pleasure to see the Spring tulips on our leaflets still in the hands of many people. The public reaction to the Queen Mother's death was just as expected, thousands of people coming to London standing for hours in the cold in silence, determined to pay their last respects. It s heart-warming to realise that our country still cares.
Although by the time you've read this issue the Marathon will be over, contributions will still be accepted until June. For our runners - 15 in all - a welcome break from training. The marathon is our biggest fund-raiser so please support them.
As promised details of the photographic competition are on page 3 of the newsletter or below. The photographs will be judged on 6th July at the ACM which will this year be held at The Christie Hospital in Manchester: please let the office know if you can attend. Thanks go to all our members who kindly completed our questionnaire. Until the next time keep well.
Frances
From our postbag
Vitamin E
I was diagnosed with ovarian cancer stage 3 in October 2001 and started chemotherapy in December. It has been fine apart from my fingers and toes which have reduced me to tears a lot of the time. In a health store I found Pure Vitamin E 1000, I took two capsules daily (it says take one a day) for two weeks leading up to chemo, and at last pain-free but still with a little tingling. I have just started my fourth treatment, and it s been the easiest one yet. So if anyone is having painful hands and feet
- try it, it worked for me.
My latest CA l25 was 9.6 so I am also celebrating. Thank you to Louise my Fone Friends contact for all your advice and support. If anyone in my area wants a coffee and a chat please phone me on. 01323 890749.
Joan Mechen
Seaford, East Sussex.
Doing more
I've been reading your newsletter since my lovely mum Kate was diagnosed with ovarian cancer. Sadly I lost my mum in July 1997 but have continued to read Ovacome ever since. Ovacome Day on 8th April, would have been my mum and dad s 30th wedding anniversary. My dad, brother and I are going to celebrate - as that would have been what mum wanted - with a lovely meal in a new restaurant overlooking Liverpool s waterfront - a place my mum loved. I enclose a photo of my mum and dad on their 25th anniversary (the last one they spent together) and would really appreciate if you could print this.
Like many people who have lost loved ones through cancer, I would like to do something to help, I have done some voluntary work and fund-raising for our local Marie Curie centre and the Linda McCartney centre in Liverpool, and feel I would like to do more. Therefore I would be grateful if you could inform me of any events I could help out with.
I continue to keep up with the developments in fighting ovarian cancer through the newsletter, and am particularly interested in reading other people s stories.
Julie K Edwards
West Derby Liverpool
Editor's Note: if anyone in the Liverpool area needs a partner to help in either fund-raising activities or raising awareness, please do not hesitate to contact Julie through the office, let s not waste her experience.
Health insurance
I write in reply to your comment after Peter Walsh s letter in the Winter 2002 Newsletter, regarding private health insurance.
I was diagnosed with ovarian cancer by my GP, after having had a scan arranged by him on the same day I first saw him. He then arranged an appointment for me to see a consultant five days later. From this clinic I was admitted to my local hospital, straight onto a ward, all this in six days under the NHS. At that time my husband and I had contributed to a private scheme for 11 years, and during the wait to see the consultant I phoned them to see if they could help. The reply was that nothing could be offered as I could not wait six weeks for treatment. No sympathy was expressed - and I have never spoken to anyone who has been so cold, and this at a very vulnerable time. Surely sorry would not cost a private scheme any more! Needless to say our contributions to any private insurance schemes have ceased, and after 22 days in hospital, chemotherapy (Carboplatin) and a great deal of support through the NHS and our local hospice, I have recently been put on three-monthly check-ups and I m feeling very positive. Recently I read of a lady who had a small lump removed and luckily the results showed this to be benign. The same private insurance scheme would not pay for her treatment in a private hospital because it proved not to be a cancer, when do they pay, sometime... never...?
Joan Cobden
Chichester
DR-70 test
I was most interested to read of this test in the Autumn Newsletter. I straight away rang Mr Evans, Managing Director of DR-70 (UK) Ltd, and he sent me a leaflet and my ‘nearest centre details' which was in Manchester. I straight away rang Dr Michael s secretary for information and was informed that he did not do the test. I wrote to Christopher Evans with the above information and to date, have not had the courtesy of a reply. We have a computer at home but unfortunately, as yet, no website.
Although Dr Michael s secretary informed me that her boss did not do the test, funnily enough she could tell me that his fee was £80, and that it cost £75 for the test. I thought you might be interested in my experience and wonder if anyone else has had the same treatment!
Margaret Llewellyn
Barnsley, South Yorkshire
Hair removal
Please would anyone be kind enough to tell us if there is any cheap, safe way for hair removal. We have sensitive skin, do not take any tablets or HRT, but are very worried about the hair on our skin and face, which is really bad, but we're too shy to write, please help us (we are in our 70's).
Anonymous
Travel Insurance
My wife was first diagnosed at Stage 3 in August 1997. She had chemo, surgery, more chemo and in early 1998 was officially pronounced ‘in remission' . She regained her strength and was feeling 100% when, midway through 2000, her CA l25 and a CT Scan indicated new tumours. Further chemo was advised and this proved beneficial. The CA l25 is again creeping up and almost inevitably yet more treatment will be required before long. Right from the early stages of the disease, whenever it has been possible, we have alleviated some of the trauma by taking holidays. These have ranged from two or three nights in a quiet hotel a couple of hours drive away from home, to full-blown 1 5-day jaunts to the Caribbean. While not really an issue for the short haul trip, we do not feel inclined to travel too far outside the EU without insurance. We recently found that it is becoming increasingly difficult to find a sensible price and/or cover. We had arranged two weeks in Tobago on a freelance basis and set about tracking down insurance. Once we had declared my wife s situation the responses were generally along the following lines:-
• sorry, we don t cover for such preexisting conditions, at all (even if the claim is for a broken leg)
• we can provide standard cover at a standard price but would exclude any problem related to cancer.
• yes, we can offer you full cover for £3,000 (bear in mind our entire holiday cost less than that!)
• yes, we can offer you cover for £33, but there will be an excess of £5,000 and maximum cover of £50,000 (standard cover is usually £5-10 million!)
We continued to phone around. Eventually we found just what we wanted. The premium was somewhat higher than the norm - around £68 - but provided my wife could arrange to have a brief questionnaire completed by her GP or consultant, cover would be unconditional. She approached her consultant who returned the form with the confirmation that she was stable and fit to travel and that was it. Peace of mind and a wonderful holiday with no broken legs. Our helpful insurer was C.H. FACILITIES LTD, Tel 0870 7506711 who will try to assist even when a terminal prognosis has been given.
Roy Cecil
Berkshire
Side effects
From August 2000 until February 2001 I took part in a Phase 2 trial of a new drug. At that stage little was known about the side effects. The ones I was warned about in advance were diarrhoea, nausea, vomiting, abdominal pain, loss of appetite and possibly hair loss - the usual sort of thing. As the course progressed I developed a number of unexpected problems, some of which took several months to control. Life could have been easier if I had been able to manage these problems sooner. As I am sure that these side effects are not specific to this particular drug I decided it might be of some help to other people to know about the remedies I found.
Oral thrush. A couple of weeks after the first chemo I developed a sore throat. I visited my GP, thinking it was tonsillitis, and came away with antibiotics. As they had no effect - in fact my throat just got worse - I went back to my GP (a different one this time). He said he thought it was oral thrush and prescribed antibiotic pastilles. The problem cleared in about a week. Subsequent bouts of chemo produced the same effect and I came to accept that during each cycle I would have trouble swallowing for about a week. Then someone recommended tea tree oil - a very strong antiseptic. I found that gargling with a very weak solution - starting several days before I expected my throat to start hurting - reduced the symptoms dramatically.
Watery eyes. At the hospital one day I met a lady who had just had her 4th infusion of the same drug. Her eyes had started watering - one of the likely side effects she said. After my 3rd and 4th infusions, my eyes watered and went red for a few days. By December 2000 they were like a pair of unstoppable taps! Very embarrassing and very sore. I tried a number of proprietary eye drops but nothing seemed to help. Earlier during my treatment I had been to Neal s Yard in Guildford and found the assistants there most helpful. I decided it was time for a return visit. We had a long discussion about my symptoms and weighty tomes were consulted. I came away with a bottle of Euphrasia tincture - a few drops to be diluted in about 10 ml of water and used as eye drops as often as necessary. The improvement was immediate. Almost a year after I finished chemo my eyes still water but nowhere near as much as they did before I discovered Euphrasia.
Itchy skin. After the fifth chemo, for five or six days my skin itched - arms, legs, back, front, soles of feet, palms of hands - everywhere. It stopped as suddenly as it started and I wondered if it was chemo-related or not. However, after subsequent treatments the problem became persistent. I tried body lotions, creams to put in the bath, antihistamines with no effect. It was worse at night and sometimes I would wake up scratching and, half awake, think ‘I shouldn't be doing this' . In the morning I would find raw, bleeding patches on my skin. Another trip to Neal's Yard and I came away with a tube of Stellaria cream, which I was assured would ‘take the itch out of anything' . It certainly controlled the symptoms but didn't cure the problem and I felt that, with the whole of my body to cover, one small tube wouldn't last long! Then when I was in Boots one day I browsed through their leaflet on homeopathic treatments. None of the descriptions of skin problems seemed exactly like mine but I decided the first thing to try was Lycopodium. Instant relief! I wondered if the tablets really were working or if the problem had just finally gone away, but when I finished a tube of tablets and didn't take any for a few days the itching returned.
What's next? It looks as if I could need more chemo before too long. I wonder what delights are in store! Thanks to Lucy at the Fountain Centre, Guildford, and the ladies at Neal s Yard, Guildford, for all their advice.
Linda Cecil
Berkshire
