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Letter from the Chair

Hello! Welcome to the winter newsletter. I hope this finds you well, and ready for Christmas!

At last I can announce the opening of the first Ovacome office. From 3rd December we will be operating from an office at St Bartholomew's Hospital, in London - a temporary arrangement until the permanent offices at Charterhouse Square open in the spring. Our thanks to the team at Barts, particularly Karen Sibley, for all their help in enabling Ovacome to achieve this important step.

I am pleased to welcome Ruth Payne in her role as administrator to the team. Many of you will know Ruth from her role in the committee as Raising Awareness Co-ordinator, and her work in the Fone Friends. Frances Hodges will be continuing in her post, but based in the office. The office hours will be extended, to cope with the ever-increasing workload. Alex Whates will be taking a break to go on maternity leave in January, and I'm sure I speak for all of us, when I wish her well during her well-earned rest.

During the past year, we have been busy with an exciting project, which at last I can share with you all. Andy Scaysbrook, an award winning press photographer, contacted us last year suggesting a celebrity photographic exhibition. Sadly Andy's mum died from ovarian cancer, and he wanted to use his skills to support Ovacome. He has been hard at work over the past year photographing British women, and I'm delighted that the exhibition will take place on 6th April, at the St James Club, Piccadilly. We have been thrilled to receive support from many famous women such as Judy Finnigan, Jane Asher, Anthea Turner, and Betty Boothroyd, to name a few. We hope as many as possible will be available to attend the opening party, thus raising awareness of ovarian cancer, and Ovacome. Tickets for the opening night will be available to Ovacome members from 1st February, but spaces are limited, and the exhibition will be open during the rest of the weekend. Final plans are still to be made, but details will be available from the office in February for all those interested.

We are also planning a nationwide event for Ovacome Day on 8th April. Unfortunately I am unable to provide you with the details at the time of going to press, as we are still in negotiations, but keep the diaries clear!

As you are aware, the committee is made up of volunteers. Sadly David Grant, our treasurer, has resigned, due to work commitments. David has been a wonderful supporter and will be greatly missed from committee meetings. Thankfully he has offered to continue until a replacement has been found. If you or someone you know with the requisite financial skills has six or seven hours a week to offer us, and would like to become involved as treasurer, please contact the office.

Wishing you all a Christmas filled with love, laughter and happiness, love . . .
Louise

 

Letter from the Editor

First I would like to wish you all a very Merry Christmas and an even happier New Year. Life for me is still bliss: Grace (our six-month-old baby) is still blossoming and brings me so much joy. Remember, please do not hesitate to contact me if you are a younger sufferer with fertility issues that you wish to discuss. I am a mine of information when it comes to surrogacy, fostering and adoption and am more than willing to share with you my experience of ovarian cancer and having a much-wanted family. I can be contacted on 01489 798944. If I am not around please do leave a message and I will return your call.

I cannot believe how fast this year has gone and how quickly Ovacome is now growing. The charity seems to be growing from strength to strength and all our hard work over the last few years now appears to be paying off. We are getting mentions everywhere: from Sky News to City Hospital, in both local press and national press and so our membership just keeps on expanding.

We all hope that you find our charity of benefit to you: if there are any questions or anything further you feel we can do please do not hesitate to contact us. At present the newsletter is our main form of communication with you and I would appreciate any comments and input that you may wish to put my way. I rely on your stories to complete this publication and our members can find inspiration from reading them. We now have the Medical Advisory Board in place to deal with medical enquiries and so if there are any medical articles you feel would be interesting to our readers, please also let me know.

Our new publication Living with Ovarian Cancer should be available soon. It will offer an overview of all of the issues surrounding the disease. Bristol Myers Squibb have kindly agreed to sponsor this new booklet and we will be using it in hospitals around the UK. For more information regarding this booklet please call the office.

Don't forget 8th April 2001 - Ovacome Day. Start planning your event now. For a copy of our fund-raising fact sheets please contact the office. It doesn't matter how small your event - every little bit helps. We will hopefully be running a nationwide event and will also have a press release available if you wish to do anything with your local papers. This is not only an opportunity to raise funds for our charity but also a great chance to raise awareness of ovarian cancer.

Well, season's greetings to you all. Please enjoy this issue and let me have your comments. Lots of love.
Debbie

 

Fone Friends Update

The network has been quite busy for the last two months and it has been rewarding to know that you have been talking to and supporting one another. I hope that the network will continue to grow and that many more of you will be able to be put in contact. As I said in the previous newsletter, I am looking forward to running the Fone Friends Network and by the time you read this, the Ovacome office will be established and I shall be able to dedicate my time to the Fone Friends.

I really do need your help in making the network run even more effectively. I am hoping to make many of the areas much smaller than at present, not only to support the current area co-ordinators but also to help geographically when people wish to meet. If you feel you could help in any way with an area, please do telephone the office. Or, if you feel you can help by talking to other women about a specific aspect of ovarian cancer, please do let me know.

Finally, I am expecting my second baby towards the end of January so I will be on maternity leave from mid January but hope to return to work in the late spring. Meanwhile, I wish you all a happy and peaceful Christmas and New Year.
Alex Whates

Fone Friends in the north-east are very pleased that our fundraising efforts on Ovacome day 2000 have allowed us to install a designated Ovacome phone line in our area. We felt that more women in the region might contact us if they saw a local number on posters, etc., in hospitals. It also means that anyone phoning is more likely to get an answer immediately. It is at present still a thrill to hear it ring, but we're sure that that will wear off soon as it gets busier!

Here is the new number:
0191 3875363

We look forward to hearing from you. Regards,
Margaret Borthwick


With Complements

The cyanide story

There have been a number of reports in the press recently of research into the use of cyanide attached to an antibody that targets cancer cells. This delivers high concentrations of cyanide at the site of cancer cells and destroys them without damaging healthy cells. This is very advanced medicine and so far, I believe, is not yet at the clinical trial stage but it is worth keeping an eye on press reports for news of future developments.

Interestingly, our diet, in the form of B17, which occurs naturally in some foods, particularly in the seeds or kernels of many common fruits - apricots, apples, peaches, cherries and plums - provides us with minute doses of cyanide. Other good sources are sprouted seeds such as alfalfa, lentils and mung beans. What happens when these foods are eaten is a chemical process which produces hydrocyanic acid. It is this that contains the cyanide. In healthy cells, an enzyme, rhodanase is produced which acts as an antidote to the cyanide, but cancer cells apparently cannot produce rhodanase and so are adversely affected with no harmful side effects to healthy cells.
None of this is new. As long ago as 1830, chemists in Europe discovered a crystalline extract, Amygdalus prunus, from the kernels of the bitter almond. It became known as amygdalin and reports in the medical press at the time claimed good, non-toxic control of cancer with its long-term administration.

Independently, this substance extracted from the kernels of apricots was rediscovered in the 1950s, in the United States by E T Krebs Jnr and his team of researchers. It was given the trademark of Laetrile, the name by which it is better known to this day. In its structure it resembles B12, in that both have a cyanide group in their molecules. However, the cyanide occupies a central position in the molecule sandwiched between two larger molecules. This largely accounts for its low toxicity even when it is extracted from foods and delivered as Laetrile. Apparently, a massive 34 grams would have to be ingested for it to be lethal. Laetrile is produced in 0.5 gram tablets which, its supporters believe, make it safer by mouth than aspirin or paracetamol.

Significantly, however, research in the US and in Italy by Dr. Ettore Guidetti suggest that, just as suggested by present-day, mainstream medicine research into the use of cyanide, Laetrile is most effective when delivered in sufficient concentrations directly alongside the site of the tumour or cancer cell. Dr. Guidetti's work with Laetrile showed greatest success with breast tumours that had broken through to the surface, and also with cancers of the cervix and rectum. In these cases the breakdown of the tumours was free to drain outside of the body without having to pass through the bloodstream where the toxic load could severely damage the kidneys and liver.

Another problem, which has been identified with the more general, oral and injectable use of Laetrile, is its quality. If it is to be successful, the substance must be active and, particularly in the case of injections, it can deteriorate during packaging and storage. The early success achieved by Krebs Jnr. may be attributed to the quality of the material he used and his close supervision of patients undergoing treatment. There is always a danger when a product becomes commercially available that deterioration may take place and that instructions as to its proper use may be misunderstood or misinterpreted.

Supporters of Laetrile continue to believe that it has a positive role to play in cancer management. However, it has come under heavy fire in the US from the Food and Drug Administration, the American Cancer Society and other august bodies and it is a banned substance in the US largely because of its claimed potential for toxicity. It is, however, used in many holistic clinics around the world, as part of a total programme of cancer management.

For the rest of us, whilst we await the results of research of mainstream medicine into the use of antibodies and cyanide, we can at least acknowledge the potential usefulness of cyanide as it appears naturally in small doses in the B17 component of diet. Sprouted seeds are an obvious healthy addition to our five portions of daily fruit and vegetables, and why not chew apple pips instead of throwing them away? For those who may wish to go further, it is possible to buy apricot kernels in quantity from some alternative healthfood suppliers. Whilst such measures will not provide us with a cure, it is always worth considering building elements into our programme of self-help which, taken together, can work synergistically to support the body and make it a place where cancer cells have to battle to survive.

Keep fighting and stay vigilant!

On this note, I would like to invite readers to contribute to this column. I often receive calls asking me if I have heard of 'this' or 'that'. If you have anything you wish to share please write it up - it doesn't have to be long - and send it to me at the Ovacome office. Information is always worth sharing.
Diane

 

Book Reviews

Cancer's a Word, not a Sentence
By Fiona Castle, Published by Hodder and Stoughton. ISBN 0-340-74565-7
Having looked after her husband Roy Castle throughout his illness, Fiona is the ideal person to write this book, which is just right for someone who has just been diagnosed with cancer. It is easy to dip in and out of - what you need when your brain isn't functioning properly - and not overwhelming in size or content.

The book is interspersed with stories of how Roy and others have coped with cancer, combining humour and honesty with the practicalities of having the disease. Despite the fact that Roy eventually died of his cancer, this is a remarkably positive and encouraging book. So many of the situations rang true that I found myself smiling in recognition of some of the events.

The one thing I felt uneasy about was the poem "Cancer is so limited" which was unfortunately at the very beginning of the book. That aside, this a really excellent book which I wish had been around when I was first diagnosed, as I know I would have found it invaluable.
Ruth Payne

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 events taking them through 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 were 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. Please do read this book - it is a must.

Linda is currently undergoing more chemotherapy but is responding well and is still managing to stay positive throughout her ordeal.

They are paying for the publication of the book themselves and copies are available for just £5 of which £2.50 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. So far this book has raised an astounding £1,024.75 for Ovacome and all of us on the committee would like to say a huge thank you for all of their hard work and generosity in sharing the profits with our worthy cause.
Debbie

 

Fundraising News

Flora Light Challenge for Women 2000
Many of our members participated in this event, and raised funds for us this year. Our thanks go out to you all.

Over 12,500 women took part in this year's run and over 1200 charities were nominated to benefit. Let's try and beat this total next year.

Mrs Sally Trigg and nine of her friends - Anna Simpson, Eliza Simpson, Jane Potter, Nicola Williams, Kate Goldsmith, Allison Farley, Fran Henshaw, Claire Murley and Vicki Kite - participated in the run and thoroughly enjoyed the experience. As well as their £5 sponsorship donated to Ovacome, they went on to raise a further £100, which we would like to thank them for.

Sally said: "I think Ovacome is an excellent charity. The information contained in your newsletter is extremely useful and has been very beneficial to my sisters and me since our mother (aged 55) was diagnosed with Stage IV ovarian cancer in October 1998. Thanks for all you do."

Letters like Sally's certainly make me feel that my job is worth doing. Thanks again, Sally and friends, for raising the money for our charity. Without donations like yours we would not be able to function.

Let's all try to take part in the run next year.
Debbie

In the running?
Are you interested in running for Ovacome in the London Marathon in 2001?
If the answer is yes, please contact the office for more details

Rotarians raise money for Ovacome
Rotarians and their wives in Kinver recently raised more than £2000 for Ovacome. Helen Bayley is pictured on the right accepting the cheques with the three members of the Pickersgill family.

Elaine Pickersgill, wife of Kinver Rotary President Brian Pickersgill, presented a cheque for £1330 on behalf of the Wives' Club, which had raised the money throughout the past year.

Mrs Pickersgill's son Andrew, who had spoken at the meetings earlier about his work as a gynaecologist, presented a cheque for £750 on behalf of the club.

Helen told me that she used to teach Andrew when he was an eight-year-old - and he became a consultant back in September!

 

Raising awareness

Raising awareness was the big topic of conversation at the AGM, so I thought I would address some of the issues raised. When Ovacome was launched four years ago, one of the four main aims was to raise awareness of ovarian cancer amongst health professionals and the general public. However, it soon became clear that, initially, it was important, as a support organisation, to raise awareness of Ovacome itself and what it has to offer: newsletters, Fone Friends, etc. We often heard "if only we had heard about you before." So with the help of many Ovacome members involved in the Adopt-a-hospital scheme we have insured that the busiest gynae/oncology units have details of Ovacome and its services. We know from new members that this is where they found out about Ovacome so we know the message is getting through.

We are always keen to hear what our members have to say, and the next clear message we were getting is how distressing the path to diagnosis can be. An all-too-familiar story was of women having to make many visits to their doctors before being correctly diagnosed, often after being told that the problem was due to their age or to irritable bowel syndrome. We are aware that the diagnosis of ovarian cancer can be very difficult for GPs as the symptoms can be so vague and they may see only a few cases of the disease in their entire careers. We did, however, want to raise awareness amongst the medical community, so that when women present with some of the diverse symptoms that could be due to ovarian cancer, it is considered as a possibility. To address this issue we have attended several large national conferences for those involved in primary care (see right) which has gone some way to achieving this target. We have produced laminated cards highlighting the signs and symptoms of ovarian cancer that have been distributed to health professionals and some of these ideas have been incorporated in guidelines used by the organisations around the country (cancer collaboratives), set up to speed the pathway of referrals and treatment of cancer.

At the AGM two main points were raised:

There are several ways in which these matters are being taken forward. We are in discussion with the cancer collaboratives about raising awareness and we will be letting you know in due course of these plans. We will be discussing the matter at the next committee meeting again, to ensure the fastest diagnosis and treatment by raising the profile of this disease amongst the medical community as well as the general public. We are in the process of producing new literature and will shortly be releasing a new leaflet for the general public, outlining the signs of ovarian cancer, for use in health centres and GP surgeries. All this needs to be done in a considered manner that ensures the optimum well-being for those affected by the disease.
Ruth Payne

Conferences 2000
In trying to raise awareness of ovarian cancer this year we have attended three major exhibitions that were attended by a large number of health professionals.

The first of these was Primary Care 2000 at the NEC in Birmingham, where we had a stand for the second year running. For two days we used our quiz to highlight ovarian cancer and we spoke to a large number of GP's and others who are part of the primary care team. A lot of interest was generated and we hope to extend this next year to include taking part in a seminar about ovarian cancer.

A similar format was used at Practice Nurse in Brighton this July - and similarly we hope to be involved in a seminar next year, and also at the Health Visitor's Conference in Harrogate this autumn. Almost without exception we have had a very interested response, often combined with an element of alarm about how little is known about ovarian cancer.

Many thanks to Alex, Helen, Carol, Kim, Sarah and Sarah's daughter for all their help and hard work. If anyone is interested in getting involved please phone me on 020 8530 4180. We would also love to hear from you if you would like to be involved in our Adopt-a-hospital scheme, as we have quite a few hospitals that are unadopted at present.

 

From our postbag

Response to Fund for "At-risk" women
I have just read Elizabeth Jones' letter about screening in the Autumn Newsletter, and although I agree with her that there is not enough early diagnosis of ovarian cancer, I do not think private screening is the answer. Articulate, well-informed women will always be able to demand scans, know how to change their GPs, etc., and as a last resort will find the money for a private consultation.
We ought to be concentrating our energies on ensuring that the vast majority of ordinary, less articulate women who have lost a relative to ovarian cancer know that they ought to be asking for scans.

We (i.e. Ovacome) could perhaps do a survey to ask whether consultants routinely discuss the familial aspect with women they are treating and their relatives. We could make similar enquiries of Macmillan and Marie Curie nurses. Every time we see an article about breast cancer in a newspaper or magazine, we should be writing and asking them to do a similar feature about ovarian cancer.

I have been very lucky: I am 57 years old and have been having yearly scans for about seven years on the NHS. My February 2000 scan showed an abnormality and by 8th June I'd had a total hysterectomy. By mid- July I had started the course of chemotherapy that will end this month (Taxol and Carboplatin).

Let us hope that the present government's pronouncements about achieving consistency throughout the country will be put into practice soon enough for Elizabeth Jones' trust fund not to be needed.
Judy Skinner
Derbys

Editor's Note: If you have an opinion on this or any other article or piece of information you have read, please let me know. It is always good to cover both sides.

 

Poem

Be Alive
A poem to comfort you

Think freely
Smile often
Tell those you love that you do
Rediscover old friends
Make new ones
Hope
Grow, give, give in
Pick some daisies
Share them
Keep a promise
Laugh heartily
Reach out
Let someone in
Hug a kid
Slow down
See a sunrise
Listen to rain
Trust life
Have faith. Enjoy
Make some mistakes
Learn from them
Celebrate life!

By Ian Michelson

 


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