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Letter from the Chair

Hello, and welcome to our summer newsletter. What a year so far! It has been a busy time on many fronts. As you will see from this edition, Ovacome members have been very busy. We have had marathon runners, cyclists, walkers, and many other enthusiastic members out there raising awareness, and funds to assist in Ovacome's work. Thank you all. Without your dedication, Ovacome would not be able to continue in its efforts to confront ovarian cancer, and support those touched by it.

I am sure all those of you who have spoken to, met or read about Debbie Howells, our charity development officer, will be saddened to hear of her resignation from the Ovacome office, but thrilled to hear why. At long last Debbie and David are about to become parents. From those of us privileged enough to have worked with you, and those of us who have come to know you through your tireless work on our behalf, we send you warmest congratulations, love and best wishes in your new career. Members will be pleased to hear, though, that Debbie will be staying on to edit our newsletter.

Karyn Connor, our Fone Friends co-ordinator, has also resigned from her role, but continues on the committee. Karyn, who has recently moved to Scotland, has been managing Fone Friends magnificently for the past few years, but is taking a well-earned rest. Many of you will have had the chance speak to members across the UK who are perhaps local to you, or are undergoing a similar treatment etc. You will all be aware of our front line Fone Friends, there seven days a week to take your calls on many a query. This magnificent service, unique in the UK, has been developed and grown magnificently under Karyn's supervision and hard work. Our grateful thanks to you, Karyn.
In light of these changes we have also accepted the resignation of Frances Hodges from the committee so that she can become more involved with the administrator/phone role within the charity.

The committee recently met to discuss the future administration of the charity, and agreed some exciting new developments. As many of you will be aware, Ovacome continues to be run from our staff's homes, and it has been decided that we shall now look to run our first independent office. We shall be putting a specification out to tender in the next few weeks, and hope to have news of its location in time for the AGM. We have also agreed to increase the workforce, and the operating hours. When all set up we anticipate improved telephone response, and the office will be open from 9.00 a.m. to 5 p.m. all week. As a consequence of these developments, I draw your attention to the advertisement on page 7. As you can appreciate we are unable to specify a location, as we do not yet know where our offices will be, but those interested can register with us, and we will be in touch when more specifics are available.

Before I sign off I'd like to invite you all to consider if you'd like to help Ovacome in a more practical way. We are always interested to hear from those of you who feel well enough to give others some of your time. Perhaps you feel a need to raise awareness, or would like to organise local social events. You may wish to help with the Fone Friends network, or join the committee. Ovacome continues to grow, and as it does the expectations of it rise. We cherish, and are justly proud of, our heritage, that of sufferer helping sufferer, family, and friends rolling up their sleeves. Many of us have found new strengths in becoming more involved with something positive. If you'd like to know more please see us at the AGM, or drop us a line. We'd love to hear from you.
Wishing you all a bright and sunny summer, with love
Louise

 

Letter from the Editor

Welcome to the Summer newsletter: at last warm weather should be on its way. Rain was guaranteed in April because we are supposedly having the outside of our house decorated! The nursery is also being decorated - and at long last the past seven years are disappearing into insignificance and life is looking more promising.

David and I are extremely excited, albeit a little apprehensive about the forthcoming arrival; it will certainly be a big change. We have been fostering for four months and have thoroughly enjoyed the experience. It has been very beneficial in giving us hands-on experience with children, and very rewarding as they are constantly learning under our supervision. If all goes to plan I will be at the AGM with our new baby in July.

Unfortunately it has proved too much for me to carry on with my Ovacome work and look after our new family, and so with great regret I have decided to resign from my office duties and concentrate on my NEW family life. I'll continue to edit the newsletter - my favourite part of the job - and hope to continue to improve it along the way.

As you read this, I hope you will be motivated and inspired by our members and their hard work to raise both funds and awareness of ovarian cancer. Some people's achievements are quite unbelievable and they continue to amaze me and the committee with their energy and willingness to help us.

Opposite you will read about our new Medical Advisory Board. As Ian says, I have listed the articles I'd like for the newsletter, but if there is ANYTHING you would like covered please contact me and I will ask for an article to help improve our informative side.

The office is currently receiving a lot of media calls about ovarian cancer. Would you be prepared to speak about your experience? If so please contact the office and let this be known. At present our database doesn't hold this information and it is impossible to us to know who is prepared to help out in this area. The more we can be heard, the more we can help to improve the problems surrounding this disease.

Finally, some good news, that Taxol is to be made available to all and "postcode prescribing" is to end. This decision is the first beg step against the care lottery where treatment depends on where the patient lives. NICE said that all ovarian cancer patients who need the drug, wherever they live in England and Wales, should be offered it at their next appointment. At present up to a third of patients are denied it by their health authority on the grounds of cost; now they will have access to the best in medicine. Great news for OC patients, and let's hope that similar issues surrounding Taxol and breast cancer will also be resolved soon.

So, enjoy reading this issue, have a wonderful summer and I hope to see you all at the AGM in July with my new baby. My message to anyone going through ovarian cancer and facing infertility is NEVER GIVE UP, we are at last seeing some light at the end of the tunnel. With love . . .
Debbie

 

Fone Friends Update

I would like to welcome Helen Bayley as the new Fone Friend co-ordinator of Area 11. She is taking over from Maggy Sams whom I would like to thank for all of her hard work during her time as co-ordinator. Valerie Webster of Area 14 is also resigning, if you are interested in filling this post, please contact Alex via the Ovacome office for more information.

We are also currently looking to recruit some new front line Fone Friends to help with the on-call rota. It is preferable that you have yourself suffered with ovarian cancer and perhaps had some counselling experience. Again, if you would like any more information please contact Alex.

Remember - Fone Friends is there for you - whether you are worried about ovarian cancer or treatments or have a friend or relative with the disease. Our Front Line Fone Friends are there if you need to talk at any time. If it is more than an empathetic ear or information you require then our 18 Area Coordinators are there to put you in touch with someone you can talk to on a regular basis.
All our volunteers have had ovarian cancer and understand the problems that you may be facing now.
Best wishes,
Karyn

 

From our postbag

Travel Insurance
Recent issues of the newsletter have referred to cancer sufferers experiencing difficulties in obtaining travel insurance. I have just arranged my first holiday abroad since being diagnosed with ovarian cancer and have found RAC travel insurance (0800 0726 999) to be extremely efficient and competitive. They are underwritten by AXA Insurance and providing you have not received a terminal diagnosis then the premium for seven days standard cover in Europe is £12.50 or £15.00 for extra cover. There is an excess of £100 but that will only apply if I have to make a claim connected with the cancer. The icing on the cake was that I got a discount because I was already a member of the RAC and so I only had to pay £11.54.

I also made enquiries with Tesco Travel Insurance (underwritten for Tesco Personal Finance by Direct Line Insurance Plc) (0845 3050 505) and again, they will provide cover for very competitive rates as long as you have not received a terminal diagnosis.
Eileen Dundon
Huddersfield, West Yorkshire

Follow up on Coley's Mixed Toxins
Diane's note on the above (featured in Spring 2000 issue) provides an interesting comment on early attempts to eradicate cancers by means of either deliberately causing infections (erysipelas) or by giving injections of bacterial products. There were good reasons for abandoning the latter procedure. Sixty years after its original introduction success rates were still very poor, the preparations proved impossible to standardise and the procedure was regarded as heroic. Individual responses were always unpredictable; some patients tolerated the treatment, but others became very ill.

On the other hand, on the rare occasions when regression occurred the malignancies underwent necrosis in the body as a result of destroying the energy metabolism of the tumour. A safer and much more effective pharmacological procedure that exploits the same principle of tumour destruction has recently stimulated interest in Australia. Details are available from the home page (last article) of the Cancer Information and Support Society in Crow's Next, NSW, Australia: http://www.ciss.org.au/.
Robert Jones
London

Your help please
I was diagnosed with ovarian cancer on 8th October 1998 and scheduled for an operation on 21st October. About 4 days before my operation I had slight trouble with vision and balance; which got worse VERY quickly. I now suffer with double vision, have to use a frame for walking and have trouble writing. I have been told that this is a rare side effect of the cancer. I have tried so much without result.

I would like to know if anyone has had this problem and had a cure. I do hope someone can help. If you can help me please contact me on 01752 480486. Many thanks in advance.
Jean Saunders
Plymouth

Also
I have had a few phone calls from women who have felt they have been treated very badly, by the NHS, their employers and the public. If this strikes a chord within you and you don't mind sharing your story with me, I would be pleased to hear from you, please either write to me via the office of telephone me on 07071 781861.
When my daughter Debbie was diagnosed with ovarian cancer and still in hospital recovering after her operation, the firm she worked for advertised her job in the local paper, Debbie worked as a catering supervisor at a golf club. When she returned to work she found that she had been demoted to waitress. We were appalled that this kind of thing goes on in Britain, and sought advice from a solicitor dealing with employment issues. Although she agreed that this was DISCRIMINATION, Debbie had worked for the firm for under a year and apparently had no rights. Thankfully the law has now changed and part-time staff and employees that have only worked for a company for a short time now have rights.
Frances Hodges

UK Collaborative Screening Trial
On Tuesday 21st March I was at the press launch of UKCTOCS at St Bartholomew's Hospital, London. This trial will involve 200,000 postmenopausal women aged 50 and 74 years of age, with no strong family history of the disease. It will be carried out from 12 centres in the UK and will take 10 years to complete.

Unlike other trials women will NOT be able to volunteer to be involved, but will be invited to attend. Of the 200,000 women invited to participate, 100,000 will be followed up annually without screening; and the other 100,000 will be divided into two groups - 50,000 will be screened annually by ultrasound and the other 50,000 will have an annual CA125 blood test. The decision as to which group a women is entered into will be entirely random. At the end of the 10 years it is hoped that the following will become apparent:

These facts will be used to decide whether an NHS national screening programme should be introduced.
Ruth Payne
Raising Awareness Task Force Leader

 

With Complements

Over the past year a number of supplements have appeared on the market claiming to support the immune system and control cancer cells. One of the more notable of these, backed by some strong research evidence, is inositol hexaphosphate (IP6). This is a derivative of vitamin B found in cereals such as rice, corn and wheat and legumes such as soyabeans.

As an important component of our cells, IP6 plays a key roll in the regulation of cell function including cell division and differentiation. Over more than 15 years of research, Dr Abulkalam Shamsuddin, Professor of Pathology at the University of Maryland School of Medicine, part funded by the American Institute for Cancer Research, has provided evidence that IP6 works against cancer cells, not by killing them, but by helping them to become more like normal cells in size, shape, structure, rate of growth and role.

This greater differentiation of cancer cells slowed their unregulated growth, encouraged them to mature and die in the way of healthy cells and reduced the size of already existing tumours.
The research also showed that IP6:

This is an impressive pedigree for anyone wishing to support conventional cancer treatment with additional supplements. Indeed, Dr Shamsuddin recommends IP6 as an adjunctive treatment to be used with chemotherapy. The story of IP6 is told in a book, IP6, Nature's Revolutionary Cancer-Fighter, by Dr Abulkalam M Shamsuddin, available from the Nutri-Centre, Park Crescent, London W1N 3HE, along with the IP6 capsules, telephone 020 7436 5122.
Diane Chapman
NE Lincs

 

Useful Books to Read

Complementary Therapies in Cancer Care
Abridged report of a study produced for MacMillan Cancer Relief
by Dr Michelle Kohn
MacMillan Cancer Relief recently commissioned Dr Michelle Kohn to produce a report on complementary therapies in cancer care. This abridged report is comprised of:

If you wish to obtain your own copy of the report, please send an SAE (26 x 35cm) with £1.05 postage to: Michelle Tonks, Professional Resources Programme, MacMillan Cancer Relief, Room C"17, The Cranewell Building, 2 Michael Road, London, SW6 2AD, marking your envelope "Complementary Therapies".

Linda & Roy Cecil's Diary of Linda's Battle with Ovarian Cancer
Linda was diagnosed with stage 3 ovarian cancer in August 1997. Roy and Linda decided to keep a diary of testing, diagnosis, surgery and chemotherapy.

I personally read their story before they published it and found it a very inspirational and encouraging read and would highly recommend you obtaining a copy. Linda is a very positive person and this comes across strongly through reading the book. I have also met Linda and Roy on two previous occasions: once at the production of the video and the other time was when we asked to help launch the patient information pack back in October 1998. They are a much-devoted couple and have used their own personal experience to offer hope to other sufferers.

They are paying for the publication of the book themselves and copies are available for just £10, of which £5 will be donated to Ovacome. If you would like to purchase a copy please telephone them on 01753 593224 or e-mail them on DrRoyCecil@cs.com.

 


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