Experiences

Cause for a double celebration

One of our members, Jackie O'Donnell's tireless battle for life-saving treatment has paid off - in more ways than one. Today Jackie is celebrating getting her life back.

Jackie, who is stilling facing a massive bill for Taxol after it was denied on the NHS, has been given the "all-clear". But she is also secure in the knowledge that no other Teeside woman will have to go through a similar ordeal. For health chiefs announced on 25th May that they will now fund Taxol as a first-line treatment for ovarian cancer. A clinical trial has also begun at South Cleveland hospital as part of an ongoing evaluation of the drug. This trial compares Taxol with a new drug, Taxotere, and will last for two years. For Jackie, it marks the end of a roller-coaster ride of emotion and uncertainty. Jackie told the local press: "It's brilliant news. Hopefully, no-one else will have to go through what I did. It was totally unfair. I was in a ward where patients from Durham and North Yorkshire did not have to pay for their treatment. Cancer is a terrible word to have in your vocabulary. You should not have to have all the extra pressure on top of fighting the disease about worrying how you are going to pay for a drug. All I ever asked for was a fighting chance. My bill is around £9,000. I've ignored it up until now."

Jackie started a course of Taxol and carboplatin in November 1998. Her friends and family rallied around to find the cash after her consultant told her that he could not offer her the treatment due to the high costs involved. Ironically, Tees Health Authority would fund Taxol if a woman had a recurrence of the disease. But it was good news for Jackie because after three treatments the future looked more optimistic. The cancer had gone, but Jackie had to finish the treatment to improve her chances of survival. At the beginning of May Jackie was told that she was all clear. They cannot say whether she is cured but Jackie is very positive and has every intention of fighting for her life. She said: "I was really poorly at one stage but now I am okay. The mind is back working - now I've got to pick myself up."

Tees Health Authority have around £50,000 to fund patients who choose not to take part in the clinical trial at the hospital. There is also to be funding for women who have already paid for treatment - which means that Jackie may not have to pay after all.

May we at Ovacome take this opportunity of wishing Jackie continued good health and thank her for fighting to raise this issue. Well done, Jackie.

My countdown to the big C

I first visited my GP in February 1998 complaining of exceptionally heavy periods, mild waves of nausea and an overall bloated feeling. My GP sent me for ultrasound, which revealed a cyst on the left ovary and as far as he and the hospital were concerned it was nothing to worry about. My GP suggested that I should wait for the menopause to set in and it would all go away!!!! I was 50 at the time.

I requested a hormone test which revealed that I was not menopausal and the practice nurse suggested that I should ask to be referred to a consultant gynaecologist. This I did, as I had medical insurance and I was becoming worried as I felt that there was something not quite right!

I saw the gynaecologist in April 1998 and he decided, after looking at my ultrasound results and examining me, that I also had fibroids, but once again he did not feel that there was anything to worry about. I arranged to see him in August after having vaginal ultrasound the week before. The gynaecologist was still not alarmed as the cyst had only grown a centimetre: it was now the size of a plum. The options put to me at this time were to book an appointment with him in six months time (to see how things were looking) or to have the ovary removed by laparascopy (I am so pleased that I opted for the latter!).

I arranged to have the surgery mid-October, feeling that I was not an urgent case (I also had a holiday booked). I went in for surgery as planned, but I woke up to be informed that the gynaecologist had not removed my ovary because he did not like the appearance of the right ovary and the left ovarian cyst had grown to the size of an egg. He said that I needed a complete bilateral hysterectomy and removal of the omentum, which I had two weeks later. After histological/pathological testing the ovarian cyst was found to be Stage IC Serous Papillary Cystadenocarcinoma (CANCER to you or me). It was not found in the other ovary, womb or surrounding tissue. It was then decided that I needed to have chemotherapy. I received my first treatment (Taxol and carboplatin) on
3 December 1998 and my last treatment on 25 March 1999. I was very well throughout, just the odd day of tiredness and some difficulty sleeping through the night (this being due to me being sensitive to the steroid treatments).

I have not had any other side effects such as pins and needles, which I dreaded as I am a keen tennis player. Please note that I have managed to play a couple of times a week since recovering from the operation. Obviously I lost my hair, but since wigs are now so close to the real thing, this did not discourage me from continuing with a normal life.

Being one of life's optimists, I am not going to sit about and wonder if the cancer will return. I would like to help anyone else who may be facing the same problems as I had. During my visits to the hospital, I had the privilege of meeting so many wonderful people (Diane Chapman being one of them), with such courage and good humour. My thanks also to the medical staff who have made my visits bearable and almost a pleasant experience!

I would like to thank my husband and my three children for being with me every step of the way and for making me feel so cherished. I would also like to say a big thank you to all my in-laws and great friends who have also been there for me when I needed them. Thank you all!
Anita Glover
Grimsby

Me and Rachel, Rachel and me

We weren't in each other's lives for very long, barely more than a year and a half. But we had what Rachel called a "friendship with a difference", and lived our friendship very intensely; we were sisters in a struggle.

We met because of Ovacome. I was a year past my diagnosis of ovarian cancer when Rachel called me, given my number by Ovacome. She had recently been diagnosed, was being treated by the same consultant at the same hospital and had been offered the same experimental treatment that I had had six months previously: "high dose" (intensive chemotherapy with stem cell transplant). It was supposed to cure us. As Stage 4 patients, we have very little to lose anyway.

I was in remission when Rachel called. I was feeling good, positive about the treatment and ready to pour out support. We met for lunch - I went to her house at noon and came home at five. We just got on so well. We had more in common than cancer and would have been friends anyway.
We had fun together; we used to say the things to each other that we couldn't say to others; we could laugh about awful things (like death - but only sometimes). We both loved food and eating, and we ate our way around local cafes and restaurants. We shopped (oh, did we shop!). We discussed our hair and lack of it, hats versus scarves (neither of us wanted to wear a wig), fashions for our bodies with the seemingly endlessly changing shapes. We both wrote.

When Rachel relapsed only four months after treatment, I couldn't believe it. A week later, my CT scan results also showed the presence of disease. Rachel and I began our second-line treatment a week apart. This was the dreaded - but wanted - Taxol/cisplatin cocktail. We both had bad reactions, but in between cycles, our feeling "human" time coincided by a week, during which we felt perfectly OK and went out to eat, shop and chat.

We were both well, according to our scans, in mid-September 1998. We had holidays with our families, outings together and then one day she called me in tears. It was back again. After five weeks. I was back in remission, but I couldn't truly enjoy it or celebrate feeling well when Rachel was so ill. And then our consultant gave her a terminal diagnosis, the dreaded "we'll do our best to make you comfortable" speech. In spite of this, in spite of her discomfort and pain, she insisted on doing some of the things she had planned - go to Ireland, go to Vienna, go to the opera, do things with her husband and daughters, see her friends and write her journal.

Rachel and I still talked about hair and clothes, but with less enthusiasm. It didn't seem quite so important. We talked instead about the merits and demerits of the ascitic tap and whether to have it done at the hospice or at the hospital. She was in and out of the hospice like a yo-yo.

And in February, Rachel died. I feel bereft, drenched in sadness and rage, and above all lonely. I have a lot of loving support, but it isn't the same as fighting the disease with someone who knows exactly what you are going through. My cancer is back too. I am having more treatment, fighting off the beast as best I can. Rachel's death makes me determined to give my struggle everything I've got, go head to head with it and grab at life with both hands. I feel that I have to live as best I can for as long as I can. I have to do this for me and Rachel, Rachel and me.
Claire Duchen
London

Ann Gregory's story

Mine has been a charmed life: brought up by loving parents and an older brother and sister, enjoyed school and was successful. I met my husband as a teenager and have been happily married for over 30 years. We have a wonderful son and daughter and I've also had an enjoyable teaching career. There have been the usual ups and downs, but nothing we couldn't handle. People thought I had it made and they were right!

February 1998 turned my world upside down. The previous summer I'd been discharged from gynae outpatients after years of observation (including laparoscopy) to investigate long-standing discomfort in my left side.

By autumn 1997 I was back at my GP with exhaustion, abdominal pain, swelling and irregular bowel movements. IBS was the obvious diagnosis, we agreed it probably wasn't gynae. We tried remedies and by January it hadn't improved. I was referred to hospital. In February when the hospital letter arrived, I was in constant pain, very swollen and looked about to give birth.

Instead of returning to school after half term I was back at the surgery and in hospital within hours. By the end of the day, after scans and blood tests, I was diagnosed with a malignant tumour on my right ovary and lots of secondaries in my abdomen. It was stage III ovarian cancer. I went home for a few days, lived on painkillers and attempted to tell family and friends. As one of our closest friends had died from ovarian cancer recently it was a very emotional time.

Our 22-year-old daughter who was still living at home was wonderful. Suddenly roles changed and she was my strength and support. My husband, as ever, kept me going. Telling our son who lives in the States, and couldn't get home, was probably one of the most difficult things to do.
Within a week of diagnosis both ovaries and most of my omentum were removed. The surgeon couldn't remove my uterus as my abdomen was a sticky mess of tumours and it would risk damaging my bladder. It was a wise decision.

I made a good recovery, started carboplatin and a short (disastrous) course of HRT, which triggered a menstrual cycle and mega PMT. So I learned to cope with instant menopause and the inevitable hot flushes and night sweats. I didn't recognise myself, physically or emotionally.

My CA125 was 610 prior to surgery. Within a short time it was under 30 and soon went down to 8. It stayed very low and at the end of eight treatments my scan showed nothing abnormal. I was feeling well and started writing my diary in ink!

In July our son visited, I resigned from my post as deputy head of a high school (another trauma) but I could concentrate on enjoying life and keeping well. I started a course at the university and did day schools. Generally life was very good indeed.

Remission was short-lived. By February my CA125 level was 48, then in the 80s and my scan showed tumours on the uterus and possibly the lymph nodes.

Relapse was more difficult to cope with than diagnosis. I felt I had let people down. So much love and support, excellent medical care and a belief that a positive attitude could make all the difference hadn't worked. There's a fine line between being responsible for doing everything possible to keep well and a belief that I was responsible for having cancer. I was very emotional, felt deep guilt and had some very black days. But with love and support I've moved on. I've had my second dose of Taxol and carboplatin and am coming to terms with hair loss, though I hate the way I look. Life continues to be good and I'm optimistic.

• I still have a loving husband and family
•  I have friends who send vibes, prayers and support that lift my spirits
• The shared experiences of Ovacome members help me to understand myself
• I managed to get early retirement and cherish the freedom
• I have regular aromotherapy and reflexology which helps
• I find autogenic therapy a wonderful form of deep relaxation, which hopefully boosts my immune system

 It's still a charmed life, and I enjoy it!
Ann Gregory
Norfolk

Editor's note: Congratulations and many thanks to Ann from all at Ovacome. She held a coffee morning in her local pub on 8 April and raised a staggering £453 for the charity. She gained coverage in the Eastern Daily Press and The Dereham & Fakenham Times. Well done, and thanks again.

Partnerships make things easy

I was having lunch with Heather Coyle and Margaret Borthwick when I first learned that 8 April was Ovacome Day. As a relatively new member of Ovacome I hadn't even heard of Sarah Dickinson, never mind thought about how to celebrate her birthday with an event. One thing was clear: three ladies on our own would not be able to do much without help. Most of the general public hadn't heard of ovarian cancer or Ovacome, so we had to raise awareness of the disease and organisation before we did anything else. The three of us around the table agreed to think about what we could do.

I had no idea what we were going to do, but experience from my job has taught be that any successful event needs a lot of pre-publicity just to get people to go to it. I also know how much time and hard work it takes to get a "good news" story into the local press. Whatever we did, professional help would make it a lot easier and I hoped that Gateshead Health (home to our regional gynae centre) would work in partnership with us.

As 8 April got nearer, we still had no ideas; then, like manna from heaven, Alison Herron phoned me at home.

The three sisters
Alison told me the very moving story of her mum, Rosemary Cowdery, who had always been incredibly fit, yet, sadly died from ovarian cancer. Alison and her sisters, Gillian Lowden and Gayle Cowdery, all wanted to do something for Ovacome Day in memory of their mother.

Rosemary's story was so poignant that her daughters were willing to let other women know what had happened to her in order to raise awareness about the condition, increase its early diagnosis and ultimately save lives.

Rosemary's story became the "lynchpin" of our Ovacome Day event. Kate, my contact at Gateshead Health, offered us the help of their public relations expert to get Rosemary's story into the local press.

Finding the right venue
Rather than stage the event in a hospital, which might make an already difficult subject too intimidating for some women, I thought of the Metro Centre. As one of Europe's largest shopping malls it has a good access by train, bus and car, while its relaxed atmosphere and shops would help to attract women. The Centre usually gives charities a small "charity barrow" which everyone hurries past and ignores.

By collaborating with Gateshead Health to promote awareness about ovarian cancer and stressing its potential to save lives (the way the breast cancer awareness campaign has), the Metro Centre management considered giving us one of their best promotional sites free of charge.

I knew I could borrow a professional display stand used in the Centre a few weeks previously so I assured them that our Ovarian Cancer Awareness stand would be professionally produced to a high standard, i.e. look good and not collapse on small children. The only snag was we would not know for definite whether we could have the site until one week before 8 April.

We needed to have a reserve venue just in case a big company paid to use the site the Centre. Alison was marvellous and arranged for our awareness stand to be in the huge Safeway store where she works on either 8 April or 10 April.

This uncertainty about our venue itself meant that we couldn't release any publicity until a week before the event.

What can we put on the stand?
Meanwhile we had no information to display on the stand wherever we were.

Ruth Payne sent me some laminated posters of the first Ovacome bike ride and Sarah Dickinson's story. When I read that for the first time I really identified with Sarah and I wish I had been able to meet her. She must have been a wonderful person. I'm so grateful to her and everyone who encouraged her to improve the care and support given to ovarian cancer patients and their families. I was inspired to carry on her work with Ovacome.

I drew up a layout plan for the stand. We needed huge versions of the standard Ovacome posters to let everyone know who we were and what we stood for (Bristol Myers Squibb kindly produced those for us). A large copy of the press article telling Rosemary's story would be there, along with the poster about Sarah and the pictures from London. Key facts about ovarian cancer (which I cribbed from Ovacome fact sheets etc), and a big bold title for the stand was printed on my brother's computer then laminated to match the rest of the posters. In true Blue Peter style I modified envelope files to make leaflet and fact sheet holders.

The stand was filling up nicely but Kate still had no response from the gynae medics so we just left a big space for them.

Involving the media
Emma, Kate's press expert, had a meeting with Rosemary's daughters. She explained that a regional newspaper was interested in doing an exclusive story about Rosemary and our event to raise awareness. There was also a possibility of radio and TV interviews, but only if the sisters were willing to do them. Emma gave advice on how to do good interviews and stressed that this was Rosemary's story and her daughters were in control. They could stop if they weren't happy at any time.

Gathering speed
I tried to support the sisters and they volunteered to help man the stand as well as talk to the press in advance. Everything happened really fast after that in the last two weeks before 8 April.

Margaret agreed to get tee-shirts printed by Impress in Chester-le-Street for all our volunteers to wear on the day, which certainly got us noticed. Kate got through to the medics and a fantastic Macmillan nurse called Karen contacted me to see how they could help. I showed her the display material we had already and asked for some big pictures with happy smiling faces on them to lighten up the stand a bit. We thought someone having an ultrasound scan would be ideal. Karen not only found a big one of those, but also brought us a tasteful diagram showing the ovaries and lots of Macmillan gynae leaflets.

A reporter interviewed Gillian and me over the phone. Gayle and Alison joined us for a hilarious session with the newspaper photographer. The Metro Centre confirmed that we could have their site. The newspaper gave us a half page "exclusive" feature on Good Friday and I sorted out a giant copy of it for the stand. Margaret and I went through our local membership list and I sent out 37 posters (brother's computer again) with a personal invitation to come and visit us at the Metro Centre on 8 April. Then we all sat back and had a rest for Easter!

On Tuesday 6 April our local TV news ran a story about European funding for ovarian cancer screening trials on Teeside. I wondered if this had stolen our thunder for the 8th but I need not have worried. Emma pulled a few strings with her BBC contacts to make sure that our stand still got good coverage on the local TV and radio news both on the night before and throughout Ovacome Day. It produced spectacular results.

The day arrives
On Ovacome Day I met Heather and Margaret an hour before the shops were due to open but, even as we were putting up the stand, women began to appear and ask for information.

Margaret's tee-shirts were brilliant and all our volunteers wore them to help the public identify us. Karen and Alison arrived at 10 a.m. and we just had time to take a few photos before the rush started.

I couldn't believe how busy we were. Women were queuing up to speak to us about Ovacome, ovarian cancer, screening, local services . . . The demand for information was so huge that we ran out of leaflets and fact sheets within 90 minutes. I got another 350 photocopies done but they were all gone by the end of the day.

A reporter from Radio Newcastle came and interviewed ladies at the stand. Some people had come all the way from North Yorkshire to see us and several Ovacome members we had sent invitations to also came along. I wish I had spent more time talking to "our" ladies, especially Elsie who had come up from Teeside. I hope we'll have another chance to meet.

Throughout the afternoon we were still very busy and there always seemed to be just one more woman waiting to speak to us. By this time Gillian and Gayle had come to help out on the stand and Helen, a sister from the regional gynae centre, came to help out on the evening shift.

Margaret had predicted that it would be much quieter after 7 p.m. and she was right, but even as I packed up the stand at 9 p.m., a woman asked for information about ovarian cancer.

Repeat performance
I put up the stand in Safeway on Saturday but the interest was much more subdued and it made me appreciate how successful our event for Ovacome Day had been.

Learning the lessons
I wrote my thank-you letters and began to think of how we can do even better next year, e.g. sort out how to sell our ribbons.

The biggest lesson I learned from this year's event was how partnerships between organisations like Ovacome and health authorities can work really well for everyone. Gateshead Health and Ovacome both got lots of good publicity.

Best of all though, we raised awareness about ovarian cancer in a positive way. Hopefully we will now see an increase in early detection of the disease and more lives will be saved.
Barbara Pike
Newcastle upon Tyne

Colour and Style

When considering how best to celebrate Ovacome Day, I opted for an evening event of particular interest to women, and 80 responded to a personal invitation to Colour and style for all seasons. Jo Cater, a professional image consultant, taught us to make the most of our individual colouring, body shape, scale and proportion.

Four friends (at least I hope they are still friends!) agreed to be dressed and made up in colours representing the four seasons. Outfits were loaned by weekenders and make-up provided by Mary Kay Cosmetics. As well as looking good, we were also encouraged to feel good. A newly opened health and fitness centre for women, The Loft, was on hand to discuss tailor-made programmes for all abilities. With music by Vivaldi, some wine and nibbles, the evening was a great success and raised over £900. I know Ovacome will put the funds to good use to support existing services and allow new ideas to be developed.

As important as raising funds was the opportunity to speak to many women about ovarian cancer, Ovacome and my role as Fone Friends Co-ordinator in Surrey and Berkshire. In addition, the evening generated two new links for Ovacome with Wellbeing, a health and research charity for women and babies, and a local hospital which is to be adopted by Ovacome. This was an unexpected but welcome bonus, as employees of both these organisations attended as guests of friends.
Linda Chapman
Guildford

The Wicked Woman's Cancer
The Wicked Woman Emerges

As mentioned in our Spring issue, Rachel Solemani unfortunately passed away on Saturday 13 February. At the request of her husband and family, we shall continue to print Rachel's truthful and humorous column.

Has it only been ten days since D-Day (diagnosis day)? Now I know I have cancer, my life is divided into BC (before cancer) and AD (after diagnosis). I am now home from the hospital, tube-free. But not really free, as I have soon to return for my appointment with an oncologist. Oncologist means cancer doctor, I've found out. I'm learning about cancer at a speed that would make the average medical student sweat. Nothing like a life-threatening illness to give you motivation!

Browsing, or frantically flicking through medical textbooks, I find what ovaries are. "Ovary: one pair of almond shaped glands . . .". I have cancer because something went wrong with my almonds? I read on: "Cancer of the ovary … the most common reproductive cancer in the UK . . . fifth leading cause of cancer death among UK women . . .". Do I want to know any more?

No, but I am compelled to read further horrors. "As it has usually advanced by the time of diagnosis, the prognosis for ovarian cancer patients is poor. Reported five-year survival rates range from 10 to 20%". Realise I've jogged along in life expecting to become a grandmother one day and now I've got to get my head round the idea I might not even see my daughters through school. I 'd have benefitted in the days when doctors whipped out the reproductive bits of women once they reached forty. I'd feel great now if it weren't for the little matters of the cancer and the chemotherapy.

Decide not to bother with any more medical information at present. I now understand the "ostrich mentality", after spending days agonising over whether I will be in the dying 90% or the lucky living-for-five-years 10%. For: age and good general health; against: stage and spread of tumour - lay your bets now.

Time for the oncologist. Mr Non-Committal. He asks me what I have been told, "not a lot", I tell him. I realise he is not going to tell me much either, unless I ask. With the medical texts fresh in my mind I ask him about the stage of the cancer. I know staging is measured by how far it has spread from the original site. If you ask, no punches are pulled. "Stage 4." I am terribly shocked. I was expecting a mere Stage 1 or 2. Stage 4 is the worst.

The cancer has "seeded", what they call "metastasised" in the bleak world of cancer jargon. I've well and truly got the "mets" and that means heavy-duty chemotherapy for you, lady! Six courses of carboplatin chemo and if that does the trick I might be eligible for experimental high-dose chemo, to make a last-ditch attempt at keeping the cancer at bay longer. Never say cured, say remission. Never say die either - "palliative" medicine is what you get in the end. Trouble is, high-dose treatment itself can kill you. Oh, lucky me! Still, I don't have to decide about the high jump yet but I must start the standard chemo soon.

Back to the waiting room with its high back plastic chairs and posters advertising bereavement groups. I am given a booklet: Diet and the Cancer Patient. Inwardly I rage. I am reduced to being "a cancer patient". Can you be a glamorous cancer patient? How do cancer patients behave? In the case of this one, badly, I hope.

After playing spot-who's-wearing-the-wig for a few minutes I chat with a friendly lady wearing a brightly coloured scarf, through which a few wisps of hair poke out. She's got cancer too. Well, of course she has or she wouldn't be here. Minutes later I wonder why she is here. "It's all in the mind", she tells me. I resist helping her along to a quick and violent death instead of a slow and lingering one. Do they give you chemotherapy in Holloway prison?

What an innocent I am! I am about to become the recipient of the most useful advice from so many well-meaning souls. I now realise what "fighting" cancer means. It's not doing battle with those dodgy cells after all, the chemo does that. It's about controlling your impulses to become a serial killer of all those people who tell you ever so nicely that you've got to let go of your anger or eat up your vegetables.
Rachel Solemani
London