Regular features

Letter from the Editor

By the time you read this I'll be in the Alps in France, training for my next challenge: climbing Mount Kota Kinabalu in Sabbah, Malaysia, which I'm really looking forward to. Hopefully by then I'll be fitter and a lot thinner too!

Well, summer has arrived and I hope many of you are looking forward to taking a break, or just simply getting out in the garden. Don't think that I'll be a lady of leisure, however; my eldest daughter is getting married in September, so we're busy trying to make our bungalow a bit more presentable, as the reception will be at home.

In the last newsletter a mistake was made in connection with the article concerning CA125. The second paragraph should have been omitted, and I understand many of you were upset by this. Unfortunately it was printed, and I hope you can accept my most sincere apologies for this error.

This will be my last editorial, as I no longer work for Ovacome. I'll be moving back into a more clinical role in nursing, possibly palliative care. In the short time I have been Editor, my main ambition has been to encourage you to take part in Ovacome activities. I feel I have achieved this particularly with the success of the calendar, and with many more participants in the Flora Light run this year.

I have enjoyed reading your articles and letters and feel I know so many of you, though we have never met. Please keep your contributions pouring in, and I know you'll join me in wishing the new Editor our very best for the future. I hope to contribute to the newsletter from time to time, so I'll be in touch, and can also be contacted through the office.
As always, keep well.
Frances

Letter from the Chair

My first introduction to the charity came via its website a little over five years ago. At the time the future seemed very uncertain. Trying to find information on ovarian cancer was extremely difficult, and, as is often the case, it was left to those closest to you trying to pick up the pieces.

For our family, Ovacome changed that. There was a voice at the other end of the phone, and someone who understood what we were all going through, and to help take us through what we could expect in language we could understand.

Later I was able to follow that up by attending subsequent AGMs and putting faces to names of the people we had spoken to, and being made to feel very welcome.

My decision to join the committee was influenced by both the dedication of those involved at the time, and my own wish to try and give something back to those who had been there for me.

With the appointment of our Director, Louise, and Lesley, our newly appointed Office Manager, the charity is moving into a new and exciting phase as it continues to grow and move forward as the office moves into its new surroundings in the Elizabeth Garrett Anderson Hospital. I'm sure you'll all join me in wishing everyone well in the new office.

The success of the recent Fone Friends initiative enabled us to meet even more of our members as well as bringing us more willing volunteers for the committee, and whilst this is good news, there's always room for more.

More importantly, expanding our staff and volunteer bases means that we hope to be able to take our message to raise the awareness of ovarian cancer even further, whilst continuing to provide information, support and links to potential sufferers and their families - aims on which the charity was founded.

I look forward to seeing as many of you as possible at the AGM in September.
Rosemarie Williams
Chairperson

From our postbag

Beyond limbo?
Firstly could I just say thank-you to Gill McEvoy for responding to my letter "in limbo". I'm now in the "how to find a way to learn to live within whatever limits the disease/treatment may have imposed upon me" stage, but the NHS is so overworked that it takes at least eight months for me to be assesssed by the podiatrist, to help me cope with the side-effects of chemo. It puts you back a bit when it takes so long to get help. Also thank you for the last little bit in her letter of "But most of all I wish her courage" - that was a really good wish.

Now reflexology was not a good experience for me. It aggravated my pain all over my body and I went to it for six months, so it wasn't as if I didn't give it a chance. So just a reality check to say reflexology doesn't work for everyone, and I feel this should be put into articles about this subject.

At the moment I am fund-raising for something to help the oncology nurse in the ward I was in, so hopefully once this has been achieved I can maybe help out with Ovacome.

I'd also like to say what an interesting article was the one on "Veronica and her Diet". I too can't have a high fibre diet, so just limit mine to suit my own body. Each person has to find out by trial and error, and by reading as much as you feel you can take in about what food does to the body. Anyway thanks once again for the newsletters.
Joy Allison
West Hill, Aberdeenshire

A diagnosis within minutes!
I came across your website for the first time today and was so touched by the many letters and stories, so many of them positive.

My mum was diagnosed with ovarian cancer in May 2000, she had been in discomfort for some time and was originally told by her doctor that she had IBS. After much nagging from her children she went privately. The consultant diagnosed ovarian cancer in minutes: I know because I was there.

Operations and lengthy chemo followed and we were originally told that, as it had gone so far, she had just a matter of months to live. My brothers and I, all in our 30s and 40s were distraught. But my mum was a tough cookie and truly willed herself to fight back. With the help of friends, family and in particular her three young grandchildren, she turned a truly devastating prognosis into the most amazing spiritual battle.

I am not a particularly religious person, but she convinced me that the prayers and loving thoughts of so many people helped her along that rocky road.

She saw my big brother get married, proudly watched her grandchildren in school plays, Christmas concerts and rugby matches, stayed with each of us for holidays and took part in her great love, the amateur theatre. And all this whilst having chemo and radiotherapy, losing her hair twice, making endless visits to hospital and using a wheelchair.

She never lost her spirit or her humour. I have a vivid picture in my mind of her driving (she never passed a driving test in her life!) an electric wheelchair around Exeter's beautiful Cathedral Green at breakneck speed with my seven-year-old son hanging off the back amidst howls of laughter. So many smiles and just one or two tears.

She died in December last year. Her death taught me three very important things. The strength of the spirit within us all is so strong; never underestimate the power of prayer and, if you truly feel there's something wrong, get a second opinion, quick!

The £90 consultancy fee allowed us to have those few extra years which will stay with me for a lifetime.

Thank you for reading this. It's the first time I've been able to pour out all these things but having read your website I knew you would understand.
Alison Stoneman
West Devon

Pen-friends club
I have been a subscriber to the Ovacome newsletter since the summer of 1999. My husband and I emigrated to Canada 36 years ago and after being diagnosed with Stage IV ovarian cancer in April 1999, I've felt the need to touch base with others with this disease, who live in or near my home town, Middlesbrough.

I was pleased to read the suggestion about the proposed pen-friends club and would love to be a participant if such an idea materialised. I'd like to correspond with women diagnosed with advanced ovarian cancer who live in or near Middlesbrough. If anyone would like to correspond with me, please write to me or e-mail me.

My husband and I are planning on going to England for a holiday in July 2003. Do you know if there are any support groups in or around Middlesbrough, who wouldn't mind a visitor popping into their meeting?
I love reading the Ovacome Newsletter. As well as keeping me up to date with the latest treatment options, it keeps me in touch with all my friends, back home. It is encouraging to see other women who are not just surviving, but thriving as well.
Sandy Lightfoot
British Columbia
Contact her via the office.

Swollen legs? Could it be lymphoedema?
In May 2002 I had an operation to remove some cancerous glands from my right groin. Unfortunately this resulted in lymphoedema in the right leg, which became very swollen. However, I followed the instructions given to me at the hospital, which meant keeping the leg raised as much as possible, gentle massage and wearing the special support tights given to me. I thought I might even lose weight getting these on and off as it was such a difficult task but I am pleased to say that I have mastered them and can now get them on in a couple of minutes rather than 20! If I am going anywhere special I cheat and use strong support tights from Marks & Spencer, which are rather more elegant.

I had just come out of hospital when I read an article in the Daily Express recommending Aesculus (horse chestnut) as a treatment for lymphoedema. As I am willing to try anything herbal which may help, I called in at the local health food shop to buy the tablets and the gel. I take two tablets a day and use the gel morning and/or night. It is very sticky but is really cooling if the limb happens to be warm. The only effect I had from this was that at first it made the hairs on my leg grow quickly but that has stopped now. I have also noticed that the hair on my head has thickened slightly, which may well be from the effects of the tablets.

Of course, as with all treatments, results don't happen overnight so I will probably be using this product for a long time. I know that ladies who have glands removed from their armpits after breast surgery often get swollen arms so maybe they could try this non-medicinal product. However, if you are on medication do check with your doctor/pharmacist before buying the tablets to make sure they won't affect what you are already taking.
Once again the name is Aesculus Horse Chestnut Tablets Original and Gel made by Bioforce. There are 60 tablets in a jar and the gel is in a tube, both cost about £7 each.
Grace Coorland
Wetherby, West Yorkshire

Healing mountains
I have had ovarian cancer Stage 3c for two and a half years now, and have been through all the horrors of operation and chemotherapy, and now it has returned, and I've had yet more chemo. But I've found my 'cure' if you like in the French Alps. We are fortunate to have had a chalet for the past 15 years in a delightful village in the mountains. I would love to offer a holiday to fellow cancer sufferers and their families such as myself. These wonderful mountains are 'healing'. We will be at the chalet in July and August so please contact me if you're interested. Or visit our website at www.eclipse.co.uk/saffski/. Our e-mail isn't working as we're not in business anymore.

I look forward to hearing from you, I'm on the train just now returning to my retreat in those mountains!
Gill Grosvenor

Doing our bit for Ovacome Day
Two of my friends Sue Thomas and Viv Bowers helped me 'to do our bit' for Ovacome day. We had been allocated a spot in our local shopping centre (not the busiest), but we seemed to create some interest and the amount of money we raised was £82.

I was diagnosed with ovarian cancer last year, I had been having urinary problems, and my doctor sent me for a scan, as he thought it could be womb problems. The scan revealed a cyst, so I had a hysterectomy, the cyst turned out to be a large fluid filled one the size of a melon apparently. My consultant said he was 90% sure that it was just a cyst. But a week later they had found some malignancy on closer inspection. I was advised to have a course of chemotherapy which I did. It started in September 2002 and finished in January of this year, I have since had a CT scan and everything seemed fine.

I will obviously have to have regular checks but I hope things will always be fine. My cancer was a 1B and the chemo an 'insurance policy', so my oncologist said. I hope he was right.
Thelma Maynard
Rochdale

Late diagnosis: a GP comments
I write in response to Christine South's letter in the Winter 2002 Edition, as a GP, and as a daughter whose mum died from ovarian cancer in January 1993. I empathised with Christine's frustration about getting GPs to take her symptoms seriously. My mum went to her GP with similar symptoms on several occasions, only to be told it was probably due to 'stress'.

I have been a GP working in Barnsley for almost 10 years now; I got my job after my mum died. I hope I listen to what my patients tell me - they know best. If ladies consult me with abdominal symptoms, which could be related to ovarian disease, I always request an ultrasound scan, and CA 125. I am aware of the disease because of my mum. I have one sister; we are part of a reasonably small family, so we do not 'qualify' for ovarian cancer screening. We both worry that we might develop the disease. I have two young daughters, when they grow up, I will make them aware of the potential threat to their health.

During the course of my work, I meet people with ovarian cancer, I was the one who diagnosed it in one lady, sadly she died. More GPs should be aware of the early symptoms. If your GP doesn't seem to be listening to you - make them listen - voice your concerns, ask for further investigations, discuss your worries. You know your body best.
Dr Fiona Richards
Holmfirth

It's me again!
Hello, it's me again, Joan Mechen! I'm just back from Tenerife and a fantastic break with my hubby and children, we met our friends and another couple there and had lots of laughs - just what the doctor ordered! We visited the Aqua Park in Tenerife and if anyone has been there they'll tell you what a brilliant time is had on all the slides, that is in a swimsuit not in a bikini, as the water rushes up when you come down. I was climbing the steps to the ride called the 'Kamikaze' (I apologise to the man walking up behind me, what a sight!) after being dared by my son to go down it. I got to the top and waved bravely to everyone watching me at the bottom. My stomach was really turning (probably to do with the sangria from the night before). But on I go and down I come and land at the bottom. I've no bikini top, and the bottoms of my bikini are now a thong, my husband is trying to warn me, and I'm still waving to the kids who have walked off totally embarrassed. I then try the 'raging rapids': you have to jump into a large yellow rubber ring and the very tanned young lifeguard pushes you down the slide and you end up in little pools, but everyone after you then comes down into these pools at about 30 mph, and you end up upside down with everyone on top of you! I thought I was drowning, but no instead I landed in the large pool at the bottom with my bottom stuck in the yellow rubber ring. My 17-year-old daughter and a friend have to pull the ring off my rather large behind!

After this torment, my youngest daughter, who is ten, was chosen to ride with the dolphins in their show: it was the most amazing sight and I was totally choked. It was a fantastic day.

When I got home there was a letter from a lady called Julie Hollywood, she and I have been in touch for five or six months as she too is in remission from ovarian cancer. She said she would be in my area for a few days and it would be good to meet, but Julie did not give her contact address or mobile number, so I was unable to contact her. When she got back from her trip I telephoned her and said, "did you really want to meet up"? "Yes" she said and I explained that she didn't leave me any contact details. We fell about laughing and she said "please, please don't get them to print this in the newsletter" so "could you print it for me"?
Joan Mechen

Our shining light
I enclose a cheque for £1,800 an amazing amount, which was raised in memory of Elaine Baker by her friends and family. It would have been my mum's 50th birthday on 24th February this year, so in honour of her memory we arranged a party to raise money for Ovacome.

My mum passed away in March 2002, after being diagnosed with ovarian cancer 18 months previously. She was a strong and courageous lady, who was admired and loved by her family and many friends. Ovacome supported her and gave her a lift, which helped her continue her fight against this disease.

It was her wish that when she was well again she wanted to have a party and raise money as a thank-you for the help she received. Unfortunately, it was a party that she would never be able to attend herself. But we thought that she would want us to have the party anyway.

I would like to thank Joe Lakin, Uncle Tom, Blue Baker, and David Maxwell for enabling us to raise such an amazing amount of money.

The night was so emotional
We hope we've done you proud
The room was packed with people
The noise was oh so loud
But the one thing that was missing
From that special night
Was you our special lady
Our little shining light.
Claire Baker
Doncaster, South Yorkshire

WE HAVE MOVED AT LAST!

After a lot of negotiation and planning we finally managed to move into our new offices last month. Please note our new address and telephone number

Elizabeth Garrett Anderson Hospital
Huntley Street,
London
WC1E 6DH

Telephone 020 7380 9589
e-mail ovacome@ovacome.org.uk
www.ovacome.org.uk

Can you help?

Office Volunteers
No special skills needed, just some time to help with phone calls and the office routine

Temporary Administrator
Two days a week at the Ovacome office. Duties include telephone support, administration and computer work. Training provided
For more info on office roles
call Lesley on 020 7380 9589

Treasurer
Owing to the retirement of our wonderful treasurer, Nina, we are urgently looking to recruit a new treasurer to:

• liaise with the Office Manager and Charity Accountant
• present financial summaries to the Trustees three times a year

This is a Trustee position and would suit someone good with figures. If you think you could fill this important role please contact Louise at the office.

Fone Friends

Setting up in the North West?
I look after Area 2 of the Fone Friends network, and recently have been asked if there is a group that meets in the Liverpool/Merseyside area.
I know that I have spoken to quite a few people in the North West of England, South Manchester, and Cheshire who are either having treatment or are on the road to recovery.

If anyone would like to meet other Ovacome members, say every other month at a central location, please will they let me know - preferably by letter, and if you are willing for me pass on your name and address on to whoever the organiser will be.
Gina Kent
Gwynedd, North Wales

Editor's Note: Gina and her husband run bed and breakfast and evening meal type accomodation in the Snowdonia National Park at very reasonable prices. Contact her via the office.

News from the NorthEast
We would like to thank Doug Charlton who raised £130, for Ovacome by running the 'Great North Run'.

Members in the North East meet regularly for coffee, and sometimes lunch, in Newcastle upon Tyne, please phone 0191 3875363 for details.
Congratulations to Joan Davison on having become chairperson of the Cancer Support Group Helping Hands, which meets monthly in Chester-le-Street, Co. Durham, on the first Thursday evening of each month, from 7.00 to 9.30 pm.

Dipex

A Correction and Apology
In our last issue we featured an article on DiPex, an Oxford based charity with a unique website based on in-depth studies of patients' experiences of health and illness. It is currently seeking volunteers to contribute to a module on ovarian cancer. Unfortunately we gave the wrong contact details.

The correct web address is www.dipex.org.uk
If you are interested in being interviewed, please contact
Julie Evans, Senior DIPex Researcher
at Oxford University Department of Primary Health Care,
Institute of Health Sciences, Old Road, Headington, Oxford 0X3 7LF;
tel: 01865 227134/226672
or e-mail
julie.evans@dphpc.ox.ac.uk.