Experiences

Anne Duffy's story

When I was first told I had ovarian cancer in April 1995 I was absolutely stunned and, of course, terrified, I thought I was going to die at 38, leaving my husband, 18-year-old son and 8-year-old daughter without a wife or mum!!

I'd had many visits over three or four years to my GP, who referred me to hospital with vague symptoms. I'd felt uncomfortable "down below", I'd had a heavy bloated feeling, fairly heavy periods, and needed to empty my bladder frequently day and night, but no-one could explain or suggest how to alleviate these symptoms. In the end I was beginning to think I should stop complaining and just learn to live with "women's troubles" when something literally flipped in my belly and a large swelling became apparent - I looked at least six months pregnant.

Another visit to my GP and a pregnancy test proved negative so he arranged an emergency scan: at last a result, a large cyst showed up. While waiting for a gynae appointment the cyst twisted (worse pain than childbirth) so I was whisked away in an ambulance. I had an operation and the cyst (the size of a football), my left ovary and fallopian tube were removed, everything else was left behind because, I was later told "it all looked healthy".

A few days later the news was broken to me that a tumour had been found in my ovary. CANCER!!!! I thought this was it, the end of the road; little did I know it was just the beginning of an amazing and remarkable, frightening, scary and humbling journey into the unknown.
I was referred to the Western General Hospital in Edinburgh where the stage of my cancer was explained and received six treatments of Carboplatin once a month as an out-patient. I sailed through this chemotherapy with practically no side effects except nausea and tiredness. I was so well, I worked three weeks out of every four. I had a hysterectomy in March 1996 and was told there were no obvious signs of a spread into the surrounding organs or tissue.

I enjoyed a four-year remission, until, in 1999, I experienced several bouts of pain under my ribcage, into my shoulder cavity and felt quite sick. After three or four admissions to hospital in severe pain, it was suggested that my gall bladder could be the cause: a scan confirmed gall stones and the surgeons decided to "whip it out" using keyhole surgery. Then the unexpected news: they had found lumps on my liver, the cancer had made a come-back! This news was almost worse than the original diagnosis, so many questions . . . How? Why? Was I going to die this time? How long?

Fortunately the cancer is treatable, I am taking part in the Topetecan/Carboplatin trials at the Western General. The staff are superb, it's almost like being a member of an exclusive club, they treat everyone with so much care and respect. Shona, my nurse, and Sister Bernie Byrne have been so supportive and informative. Dr Angela Brown has been fantastic, listening to endless lists of questions and giving HONEST answers! I cannot thank them enough for their care and attention.
I have not coped, emotionally, as well this time; I needed a lot of support but my husband and family have been tremendous and put up with moods, weeping and bad temper!! Friends and colleagues have also been a great source of inspiration and support is endless. I've been told that I won't have to worry about my "old age", that this beast will catch up with me one day, but I am determined that day is a long way off yet!

For now, I take one day at a time, savour every moment, try to remain positive, thank God for the dedication of health professionals and pray for the well-being of all sufferers. Best wishes to you all.
Anne Duffy

From Sea to Sea on Foot

We planned to walk the coast to coast path between 12 June 1999 and 25 June 1999, a total of 190 miles, from St Bee's Head in Cumbria to Robin Hood's Bay in Yorkshire.

A lot of planning and training was undertaken in the weeks leading up to the walk. Regular visits to the gym and longer and longer walks with rucksacks full of blankets and dumbbells for bulk and weight to get us used to carrying a heavy weight on our back.

Start day arrived with rain forecast (just what we didn't want). My father kindly drove us; as we travelled along the A66 it was raining very heavily but as we approached St Bee's the rain stopped and the sun began to shine and that was how it was for the majority of the walk. We couldn't have asked for better weather, especially when walking through the Lake District, over the Pennines and Yorkshire Moors.

My husband and I had completed the Cumbria Way some years earlier and had not met anyone else who was doing the same walk so we were very surprised when we met up with several groups of people who had started out on the Coast to Coast walk that morning.

Our accommodation was booked in advance so we knew how far we had to walk each day and it was a good feeling to know that there would be a comfortable bed and a hot bath waiting at the end of each day's walk.

One the second day we met up with a couple from Lincolnshire who we walked with for the remainder of the first week, staying at different accommodation each evening but meeting up for our evening meal and walking together each day. We were grateful for their company and I'm sure they were for ours because on a long distance walk you get good days and bad days and it is good to have someone other than your partner to talk to.

Sadly after six days we parted company with Mick and Pam because our route plans were slightly different but we still met up with other groups of people, of all nationalities, who were determined to complete the walk.

On the last morning we woke to glorious sunshine and a leisurely five-mile stroll from Hawsker round the headland into Robin Hood's Bay. It was certainly a stroll compared to the 15-19-mile stints we had been doing for the previous two weeks.

I cannot describe the feeling and sense of achievement I felt when we rounded a bend in the path and saw Robin Hood's Bay below us. I had an even greater sense of achievement when I took my boots off and paddled in the North Sea.

If there are any walkers out there who have thought about doing a long distance walk but have not plucked up the courage, I can highly recommend it. My husband and I started with the Cumbria Way, which is 75 miles long and took five days to complete. We think our next long distance walk will be the Offa's Dyke Path.
Jeanette & Michael Owen
Wrexham

Louise Bayne's Story

My husband described it as the best and worst six weeks of our lives. Our son was two weeks old, Duncan had passed one of his surgeon's exams, and I might have cancer! A chance ultrasound scan had found that the simple cyst that had been monitored through my pregnancy now appeared to be not so simple. I had guessed as much. As a midwife, I know how busy gynaecologists are. When your consultant leaves her clinic mid-afternoon, to come and sit with you outside a scan room, you start to wonder. When you go in for a scan of your ovaries, and they start spreading goo all over your liver, the alarm bells go off - loudly. I'm grateful that they didn't try any hogwash, but going home, and telling family and friends that I needed surgery, that week, and it may be the C word was terrible. I shall never forget the painful effort of trying to find a kind way to say the words, looking as faces fell in horror and disbelief.

The surgery was not nice, frankly I'd rather have gone through labour again several times, but at least we'd know soon. I'm pretty sure my consultant leaned on the pathology lab, as the results were back in four days. She walked into the room: "It's not malignant". Boy, did that sound good. "It's borderline", eh?

Six months later we'd moved to Sussex, and a bout of abdo pain took me back to another ultrasound department. Yes, my cysts were back. A referral to the Marsden and a round of investigations followed. I started on close monitoring which was to last for the next two years. Although I found the visits stressful, I also found the investigations reassuring. It was at this time I contacted Ovacome. I had read Sarah's article in Good Housekeeping, around the time of my surgery. I thought there but for the grace of God go I. I was too embarrassed by my "good" diagnosis to get in touch, and I didn't feel psychologically ready to help out in any way. But a year later another article caught my eye, and I went to my first Ovacome AGM. I signed up for the raising awareness task force, and two years later joined the committee. This year I became Chairman.

During that time Duncan and I were juggling with a dilemma. We wanted to have another child, but didn't want to risk my health any further. There is so little information out there on borderline disease, let alone recurrences, and everyone I asked seemed to have a different opinion. I found the whole situation more and more frustrating. I'm no good at "well sometimes these things just happen" It was a relief when we were told it was OK to start trying for a baby. Many months later, and my scans steadily getting worse, my CA125 steadily rising, I was told I needed a staging laparotomy. They would remove my ovary, maybe more, depending on what they found. I was devastated. I'd always tried to keep a healthy balance. We had a healthy happy boy, and he always came first. If I'd been told at any stage that I was at risk, I would have given up, and had the hysterectomy I knew would come at some point. But I wanted to have children, not a child. I felt it was important for Charlie to have siblings, not to be on his own, and now I felt it was all going wrong again.

A blood test confirmed I wasn't pregnant and the operation was scheduled: then, three days before my admission, during a chance call from Karen Summerville at the Marsden, I mentioned that my period was late. I thought that it was due to stress of up-coming surgery, but she recommended another test. I understand from the biochemist that they re-ran both samples three times, but the results were definite: I was pregnant! I was numb.

A scan was arranged for the day I was due to go in for the operation, which confirmed that the corpus luteum (the bit that keeps the pregnancy going) was right next to the tumour. It was agreed that surgery could be postponed for a few weeks to reduce the chance of miscarriage. When I went back for my appointment, morning sickness and all, I was totally stunned to see a by now very familiar black and white image of my ovary but with NO TUMOUR. I think I was expected to whoop with joy, but I really could not believe it.

It took weeks to sink in, and I think it was only at my routine pregnancy scan, when once again there was a normal ovary, that I really allowed myself to believe that I might have this baby. In April Eleanor arrived, 6 lb 8 oz of miracle, but again, it was only a few weeks before the clouds loomed over the horizon. A familiar nagging abdo pain returned, and it was no surprise to find that my ovarian ultrasound was abnormal. Now if anyone tries to tell me again that this has nothing to do with hormones I'll scream!

By the time you read this I'll have had my hysterectomy, and be a reluctant member of the menopause club, but if there's one thing that sticks out more than anything else I've learned from Ovacome, it's that I'm lucky. I have a beautiful family, I've received the good care
Through Ovacome I have met so many wonderful, brave, determined women (and men), who continue to inspire. If OC is my dark cloud, then Ovacome is a very bright silver lining. With love
Louise Bayne

Editor's Note: Louise is now well on her way to making a full recovery. The good news is that the tumour was benign and the operation was a great success.

Kirsty's story

In April 1998, the bottom dropped out of our world. A very close happy family, life had been so good. One daughter happily married with a five-month-old son, the apple of our eyes. Our youngest daughter, Kirsty, 24 years old, engaged and much in love, with a wedding scheduled for September. Kirsty, the sunshine in all our lives: always busy, a people person, career girl, who'd worked and raved her way through life. The GP had been treating her for a hormonal imbalance (without blood tests), blaming her symptoms on the stress of moving back to her home town from London, and the approaching wedding.

In April she was admitted in to hospital for an emergency operation and had an ovarian cyst weighing 6 lb removed. We were assured by the gynaecologist that the cyst was benign. The first bombshell followed soon after - it was a grade 1c ovarian cancer diagnosed on histology.

They were still quietly confident but, due to the slight overspill during the removal of the cyst, they decided to give a precautionary course of carboplatin; this was followed by a joyously clear CT scan the week before the wedding, which was the happiest day of Kirsty's life. The happy couple honeymooned in Fuerteventura, followed by a couple of months of wedded bliss. In November at her follow-up appointment, she was told to go away and live life to the full.

In November Kirsty noticed a constant niggling left-sided pain. She returned to her GP and was sent to physiotherapy for a "pulled muscle"! The GP also told her that she was probably stressed, which was only natural after all she had been through!! The physiotherapist was not convinced and insisted that she get a referral back to the gynae consultant. On Christmas Eve secondaries were found in the suture line and tumour was evident in the abdominal wall. Hypercalcaemia, we pushed for Taxol (the gold standard treatment). Kirsty lost her beautiful long blonde hair, the tumour tripled in size and her prognosis was poor due to a high calcium level. We pushed for radiotherapy which thankfully produced rapid reduction in the tumour. We asked for referral to the Royal Marsden Hospital - Martin Gore guru in ovarian cancer care.

En route to the hospital I read the Ovacome newsletter's spring edition, at last, hope in the form of Dr Lamont, oncologist at Southend Hospital. In May 1999 Kirsty commenced the Cisplatin/Gemcytabin chemotherapy regimen, thanks to the marvellous care of Kirsty's oncologist Dr Counsel, the nursing team and her treatment at Cheltenham General Hospital. But one week later bombshell number 3 - multiply pulmonary emboli.

You are probably thinking this is a "sad face" story but you haven't met Kirsty: courageous, loving, saucy, fun-loving, positive, happy, gorgeous, naughty but nice. We love her to bits and I am so proud to be her mum. Failure is not on her agenda, after three treatments the tumour is shrinking. Kirsty is doing well.

A word of advice: don't be misled by your GP or consultant, you know your own body. If you have symptoms, see your doctor: don't accept depression, stress, pulled muscle, natural way to feel after all you've been through, etc.

A big thank-you to everyone at Ovacome for their invaluable comfort and support. Keep up the good work!
Jenny Parish
Gloucester

Editor's Note: Many thanks to the Millennium Social Club for the cheque of £418 that was raised by its raffle and donated to the charity at Kirsty's request

Back to reality

My heart was broken when my daughter Debbie died last year; she was 23 years old and in the following months I wrote about my feelings and sketched. I started to listen to Capital FM whilst driving around working as a health visitor. I have always enjoyed popular music and I started to take more interest in pieces unknown to me, in particular clarinet and violin solos. The notes seem to help me transcend to a higher, more ethereal plane; the "Lark ascending" is one such piece by Vaughan Williams.

During my darkest hours I felt desperate. I wanted to meet someone who felt just like me. My husband couldn't help and we grew apart. I realise now that we were too locked into our own grief and pain to give any love. For many months I felt I had no future, my only consolation was a book I found in the library and read over and over. It was written by an American whose child had died: she described her own journey back into society which seemed to mirror my own. I have three other children but for a while when I sank into the deepest depths of despair, I felt that they would cope without me, I just wanted to be with Debbie, I was exhausted and seemed to have no more love to give.

At the time I was training to run the London Marathon, but as I worked full time I had little time to run. I felt I'd be letting Debbie down if I dropped out, but couldn't see myself completing 26 miles. The week before the marathon I set out in fog and rain at midday and returned in the dark having run (and walked) 22 miles. This really set me up and the following week I managed to complete the marathon, not in record time, but at least before the traffic started again!

Since then I have returned to reality, without Debbie and me my children's lives would fall apart - so I stayed. My husband and I are back in touch, I have classic FM to thank for this, as we travelled around the country together attending their concerts. My favourite piece of music is the theme by Vaughan Williams used in the film Schindler's List. The strings depict the fragile strings of my heart, and when I close my eyes I feel I am being lifted to another place where I can be in touch with Debbie again.

I wanted to write this account of my journey in case there is a reader out there who is suffering in a similar way to myself. I would be pleased to hear from anyone in similar circumstances, or from those who fear that they might be in similar circumstances in the future. I can be contacted through Ovacome on 07071 781861.
Deborah Sian

The Wicked Woman's Cancer
Hey, what's the alternative?

Today I was sent a batch of pamphlets of the "alternative" medicene variety. Those that do not advise you to reject conventional treatment prefer the term "complementary". I pick up a leaflet on "Keeping Hope Alive". Well, I certainly need that after reading the text: "Essiac tea is said to have cured thousands of terminal cancer cases since the 1920s." It then gives examples. One was a woman with, guess what?, an ovarian tumour "as big as a grapefruit", who was cured by the tea drinking. It was just as well (the pamphlet did not use that phrase) as she couldn't take any more chemo and her doctors only gave her a short time to live. There follows a rather gruesome account of "thick greyish matter like pus pouring from her vagina" and how she secreted "awful stuff" for two weeks until she was cured.

Amazing! All I have to do is drink tea! I suppose I could put up with "awful stuff" (the imagination wanders - I think of the film Rosemary's Baby) coming from my vagina for two weeks if it means a cure. On second thoughts . . .

I read on. Other pamphlets by American doctors; the Dr Quacks and Dr Frauds. So many American doctors, then you realise that they are not medical doctors but doctors of herbal medicine or some such thing. I mean, what kind of bastard prefixes their message to sick people with "You either get it from me or you stay sick". Stay away, that's what I would say. Dr Quack's AIDS patients stopped taking AZT and took the herb Echinacea instead. Many who were dying had a complete return to health. Oh yeah? Of course, according to Dr Fraud and his buddy Dr Quack, Echinacea also cures cancer. Oh, and by the way, so does garlic. By that count I should be cured of cancer by now, or I shouldn't have it in the first place, with the amount of garlic I've consumed in my life.

I read on. Another doctor (?) claims a fluke worm in the liver causes cancer. Dr Fluke, I wish it was that simple. I flick through some more. As far as I can make out, behind all this seem to be two assumptions: cancer attacks because the immune system is low and the body needs to rid itself of all toxins.

The toxin theory sounds rather like the idea of letting out the bad blood that used to be popular in the dark ages. Also you have to adopt a purifying diet which involves lots of raw foods like carrots and bean sprouts. It does not include things like brownies made with 70% chocolate; they would be very toxic. There is also something called the Gerson diet where you cannot leave your house for more than half an hour at a time because you have to keep drinking freshly squeezed juices. Oh my, what a bundle of fun it is being a cancer patient!

So, according to these guys, not only have I got cancer but in the limited amount of time I have left I have to live a bit like a nun, tied to one place, meditating, eating raw foods, giving up the good things in life like chocolate and alcohol. I suppose if I get desperate!!!

Last week some well-meaning soul passed me an article about some Italian research claiming to demonstrate that fatalities from ovarian cancer increased in direct proportion to the number of fried eggs the women ate. The fewer friend eggs the fewer fatalities. Simple really. I must tell my consultant not to bother with all these expensive trials costing millions of pounds or these scans that cost thousands to operate or these incredibly costly drugs - just tell the women not to eat fried eggs.

This is my day for the alternative, sorry, complementary cancer centre. I am warmly welcomed and feel really special. Everyone is terribly nice. I meet a woman who had breast cancer which returned after five years. I have an aromatherapy massage and try "a bit of healing" with an ageing hippy type with a wispy beard. He is perfectly agreeable but I don't feel terribly comfortable alone in a room with a strange man. Thank goodness this isn't the hands-on type of healing. He moves his hands a few inches from my body, sort of outlining it. I'm sitting in a chair. He moves around me. He doesn't say a lot, but says he can feel a lot of energy. I confirm that I am a very energetic person.

I become very bored and sneak surreptitious glances at the clock when he is not looking, a bit like I used to in boring lessons at school. I begin to wonder what on earth I am doing here. It's all a bit hippy-like to me. That sort of thing, along with macrobiotic diets and men with long hair and pony tails, belongs to another era of my life, about 25 years ago. The healing is meant to be relaxing but I feel rather tense. Then we all go back into a room and they ask me if I want to join a meditation. We all sit round in a circle and the healer with the wispy beard tells us to imagine that we are somewhere peaceful where there are trees and plants, a forest or some beautiful quiet countryside. This isn't much good for me because I'm a city type and deserted places make me nervous. I like shops, restaurants, cinemas. He tells us to think of the sea: I like sea but all I think about is drowning, which is hardly relaxing.

Then it's time to leave and everyone says how great it's been to meet me and they hope to see me again soon. I say yes, but all the time I know they won't. I read in the pamphlet on the way home that many people with cancer find it "empowering" to go on a raw diet and practice meditating and healing. Maybe they do. But it's not really my idea of a rave-up. Give me a good party any day!
The day has rather taken it out of me but it's a great night for TV. Eastenders and Brookside both on because of some researching earlier in the week. Bliss! And ER. That's what I call relaxation!!
Next day I idly skim through some of the literature I picked up at the "complementary" centre. Sharks-fin is mentioned frequently; apparently sharks don't get cancer. At first I think it's a herbal remedy like "Turkey rhubarb" but then I find out it's an extract of the real thing. It's also a delicacy in Chinese haute cuisine along with sea slugs and other goodies that took the fancy of one of the Emperors in days gone by.

I also read a medical booklet which maintains that, although these diets and remedies may help people feel that they have more control over their lives and assist in developing a more positive attitude, scientifically controlled studies have shown them to have no impact on cancer. Indeed, some diets are a cause for concern to doctors, as they are imbalanced and taking megavitamins can sometimes be harmful.

Phew, that's a relief, as I would have had to give up one of my favourite occupations, which is making and eating the most mouth-watering food possible and visiting the most wonderful restaurants I can find. Don't get me wrong, I like proper food, not junk. It's just that a diet based on soy beans, tofu and raw food does not inspire you if you like cooking and the occasional pecan toffee cheesecake or death by chocolate pudding.

The next day my "Learning To Meditate" package arrives. Gosh, it's hard work being a cancer patient! After sitting in my "suitably darkened" room, practising my mantra and getting irritated by the supposedly "calming" voice, I decide I've had enough. Cancer or no cancer, the life of a nun is not for me. Give me glamour! Bond Street here I come!
Rachel Solemani