Experiences

Ovacome Day bike ride in Newcastle

Saturday 8th April dawned dry with clear skies promising sunshine. What better weather for our Bike Ride and Walk? I woke early looking forward to the event and hoping I could handle the contraption described to me earlier as a rickshaw.

At 10.15 we parked near the Swing Bridge and set off towards the Copthorne Hotel where we met about 60 like-minded people all wrapped up warmly and making a colourful scene. After signing in we were keen to get started and saw our rickshaw for the first time: a bicycle with a tricycle fixed to the rear! I was on the tricycle with Mandi Davis in front.

Cyclists were planning to do the complete course of about 8 miles and walkers anything up to 4 miles (although some chose to do the full 8). Following an impromptu warm up exercise class the walkers were on their way. The cyclists, including two other rickshaws, got started too. With a few instructions about gears we set off. This was Ovacome Day and we owed it to our sponsors to do our best.

Newcastle Quayside looked smart with its new Business Park, sculptures and descriptions of industrial events in the past. There was a cool breeze in our faces as we headed towards Scotswood Bridge but once over that we encountered warm sunshine. Scarves were removed and jackets opened as we kept up a good pace. The Keelman's Way is popular with walkers and cyclists and we met many on our way, exchanging a few words or a cheery wave. Sometimes we attracted close scrutiny on our bike-cum-trike.

We were more than half way and our spirits soared as the Redheugh Bridge came into view. This is the first of a group of six bridges crossing the Tyne at this point. Not far now and we still had lots of energy! Everyone completed the course and there was lots of excited chatter as we signed out and collected our certificates.

Thanks to everyone who sponsored us or took part, including those who stayed behind to count us back in. So far over £1,500 has been raised for Ovacome and cheques are still coming in. Well done one and all.
Patricia Wilson

Marathon Man reports

I had written out a list of things I still had to do before leaving home for the race start. I tick them off as I go. It still seems unreal - am I really going to do this? It's 7.00 am and as I walk to the station I don't see anybody else carrying their London Marathon bags. Is it the right day? Relief at the station, there are a few other participants. On the train there are dozens! Packed train from Greenwich - can hardly breathe, there are hundreds of them! No one ever thinks how you get so many people to one place at the same time on the same day.

Is that my left knee that's not feeling quite right? Or is it the right ankle? It's still not too late to pull out!

At the start everyone seems quietly confident. That is except the hundreds who suddenly decide they need to make one last visit to the loo. 15 minutes to the off and there are still queues of 20 people waiting. The speakers announce that the start is rapidly approaching. You know once you put your bag, containing fresh clothes, on the truck that it's too late to say NO. However, the adrenaline is starting to pump in and you casually hand your bag to the attendants. Four hours running to get your clothes back!

Debbie had recommended that I stencil my name on the Ovacome T-shirt. She was right. Loads of people kept shouting out my name, "Well done!", "Come on!". Lots of encouragement . . . fame for a second!

The early miles slip by, the bands are great, the people are great, and the offers of fruit and sweets are great. It's quite hot but the forecast was wrong, it's not going to rain after all.

17 miles and you are just starting to feel the effort.

20 miles and those people shouting out your name, suggesting you can run faster, seem to misunderstand the situation.

23 miles - they're now shouting out that you can finish and not to give in. The thought of not finishing does not bear thinking about but I know it will be a little slower than they think. I'm not just running for myself but for Ovacome as well.

26 miles . . . got to save an extra bit of energy. First, so that when I see my family in the crowd, near the finish, I look at ease. Second, I'm sure they will be taking pictures as you cross the finishing line and I must look as though this has just been a casual trot round the block. Can anyone who has just run 26 miles look as though they have just been to one of the Queen's garden parties?

There's the finish and soon you have your medal. A slight feeling of anticlimax. It's all over for another year. Wait a second though. Just a mile or so before the finish, there you were pledging never to do this again. It hurts. Too much training. Once is enough, but already the extremely unlikely, nearly impossible, just no way, when I say never again I mean . . . possibility of repeating this again, has slipped into your thoughts.

It's a fantastic event just to go and see. I personally think the best part to see is before going under Tower Bridge but it's all tremendous. 30,000 people set themselves the demanding objective of running or walking 26 miles. Their motives are varied but they all learn something about themselves.
George Green
London

Editor's note: Congratulations to all of our marathon runners for completing this year's marathon. If you would like to reserve a place in the 2001 run, please call me via the Ovacome office.

Where's Big Ears?

Four years ago my husband Martyn ran the London Marathon for the first time. On that occasion he ran for CMS, the charity he works for.

At the time our knowledge of ovarian cancer was very limited but only a few months after the marathon we underwent a steep learning curve when I was diagnosed with the disease. This year Martyn decided to run for Ovacome. It was bit touch-and-go whether he would make it to the start (never mind the end!) as he was in hospital three weeks prior to the run with what was thought to be a kidney stone and then he developed a cold. However, despite everything, he made it - dressed as Noddy!

My children and I had a great day darting round London trying to spot him (the fancy dress helped). He also met up with one of Ovacome's other runners (Karen Summerville) along the way.
Martyn comments that the second half was very challenging but he really benefitted from all the encouragement given to "Noddy" - small children loved him.

Whether he repeats it again in another four years remains to be seen but next year my son becomes eligible to run so we'll wait to see.
Ruth

10 Years and Celebrating

Why am I writing this now? I did start this article in 1997, but felt then that I must wait until this year as 5th June 2000 marks the tenth anniversary of my operation for ovarian cancer. I didn't keep a diary, I wish I had, for some details have now become very hazy. I can't remember clearly when, or how, I began to feel different.

Flicking through the Reader's Digest, I'd read an article entitled, "The Silent Killer". Continuing my regular cervical smears and mammograms I knew that there was no test for ovarian cancer and no clear symptoms, so I hoped I'd not be one of those who developed it.

In August 1989, we had an energetic week walking in the Lake District and I felt fitter than usual. Making an effort to diet, I was pleased to lose some weight before Christmas. Teaching was tiring, but no more than usual. Unusually I caught flu, but so did other staff. I had some time off work, returned, then had a second dose. I was left with a cough and by December had an inhaler and was a good customer for cough medicines and sweets. My appetite was less good but I was pleased as it helped my diet. That Christmas, for the first time ever, I did not enjoy my Christmas dinner. A chest x-ray in January was normal, but the irritating cough persisted.

Somehow I got through that term, feeling increasingly tired, lacking appetite and steadily losing weight. Towards Easter, I had a gynaecological examination but my GP couldn't understand why old fibroids, causing no problems, should affect me so much. I had a blood test and two days before term was due to start he phoned to tell me not to return to work but to see him, as my blood test showed some (unspecified) abnormalities. I didn't know then that I'd taught my last lesson!

I was referred to a gynaecologist and saw a female doctor who asked me to tell her all the things I felt were not right, a long list. She felt someone more senior should see me the following week. By now, I had very little energy and had to be driven to the hospital door. I saw a gynaecological oncologist who arranged a date for a hysterectomy, 5th June. I then had an ultrasound scan, the first of several. Shortly after this, my husband became so concerned at my condition that my GP arranged for me to be hospitalised quickly and a bed was found for me.

We all know that ovarian cancer can be very hard to find and during the next three weeks I had test upon test. Theories ranged from TB or a tropical disease, to an infection of the heart muscles. I had ECGs, x-rays, scans and a lumbar puncture. The antibiotic cocktail dripped into my hand caused hallucinations of the most terrifying kind and bizarre behaviour on my part. It was a nightmare.

After two weeks it was suggested by one gynaecologist that I did not need a hysterectomy and could go home! Thank goodness that decision was overruled and I had a CAT scan. That was when my cancerous ovary was spotted. By this time I weighed only eight stone and felt really ill.

The operation, on 5th June as planned, went well and I immediately felt much better despite my wound. By then I was the longest staying patient on the ward, with an impressive display of cards. On 8th June we celebrated my elder daughter's 18th birthday in the ward and promised her a proper party later. As I recovered, I can remember vividly the joy of being able to have a real bath by myself, even though it hurt to sit down, I was so bony.

I had a visit from Prof. Hilary Calvert, who explained what the course of six doses of chemotherapy involved. I had to write down the name "carboplatin'" as I'd not heard of it before.

A trip by wheelchair to the hospital entrance reunited me with my dog and soon after it was time to go home. The trees were green and I cried throughout the journey, I was so happy! I can remember wondering whether I'd ever have energy again and whether I'd ever feel even vaguely normal, but strength does return, slowly.

I started my chemotherapy in July and found it not as bad as I'd feared. The staff at the Northern Centre for Cancer Treatment in Newcastle were wonderful. 1990 was the year of the Gateshead Garden Festival and having season tickets we started by me being pushed in a wheelchair until I was able to walk round. My daughter had her promised belated birthday party in September and in November my husband and I went to the Lake District to celebrate our wedding anniversary. I willed myself to the top of Great Gable on a perfectly clear day and sat, in tears, looking at views I thought I'd never see again. Spending the next two days in bed, recovering, was no hardship! Christmas 1990, I did enjoy my dinner: in fact, I cooked it. It was like a new life, I had to do things just to prove that I could. However, I was recommended to consider retiring from teaching, which I subsequently did.

Scans showed all was fine and the CA125 blood tests, apart from the odd scare caused by a rogue reading, went well so I progressed to six-monthly hospital visits. In 1997, after an unexplained pain, I was back to more frequent visits but then got the all clear and now I have an annual check.
I trained my promised Labrador puppy and with her and my other dog, I resumed my hospital visits with the Pets As Therapy charity. I had had tremendous prayer support from the congregation of my local parish church and decided to train to join the pastoral team. I also became a volunteer with Coping With Cancer North East. Through CWC I met other women who had had ovarian cancer and who wanted to talk to someone else who had had the same. I realised that there was a need to talk through experiences and share information.

Travelling through France with friends, I borrowed a Good Housekeeping magazine and read Sarah's article; later I joined Ovacome. Being a Fone Friend has been an exciting and rewarding experience for me and I've made many new friends. I've also learned a great deal more about ovarian cancer and seen how treatments and diagnoses are moving forward at an impressive speed.

When I started to write down my experiences in 1997, I would not have believed that by May 2000 I would have organised two weddings, had a busy two years looking after my granddaughter and be expecting a second grandchild soon. Training another puppy was part of my plan, but I'd not anticipated how much my involvement with Ovacome would grow as the charity expanded. It's good to know that for those women, or family members, who want to know more about their condition, or just to talk, we can provide help and support through Ovacome.

So, I shall dare to celebrate on 5th June 2000, with my husband and the friends who celebrate their 35th wedding anniversary that day, as I'm told I spoilt their plans ten years ago! I'm extremely grateful to all those who enabled me to enjoy living the last ten years.
Margaret Borthwick

Give us a push!

One Saturday in January I was sitting in an Ovacome committee meeting, listening to Barbara Pike trying to summon up enthusiasm from other members to organise a cycle ride for Ovacome Day. After the meeting feeling rather sorry for Barbara I said to her "if you give me a push I'll organise a ride". On the train home I thought "why should she have to push me?" I had absolutely no idea where to begin, but started making a list of all my friends, I then sent them an invitation and entrance form (the fee being £10 each and children go free), I stressed that sponsorship was not necessary. I decided that the route would be along quiet country lanes, and opted for a Sunday as there would be less traffic. The route would be circular, starting and finishing at my local British Rail station, plenty of spaces to park on a Sunday and it couldn't have been more ideal for travellers from London. I have a Rover 218 Diesel and as I drove around the course I clocked up 19.6 miles, 25k (or so I thought). My husband mentioned a couple of times that he thought I'd mis-measured, I told him that I did know how to measure a route, after all hadn't I run the marathon the previous year?

Two weeks before the big day we threw a party inviting all the participants in order to muster enthusiasm, and it worked, there was a murmur about 20 miles not being 25k however, and I was forced to admit I had "cocked up". However, we had a good evening, I had so many volunteers for marshals that I thought they'd be tripping over each other on the day!

Drawing back the curtains on the day my heart sank, it was 6 a.m. and blowing a gale, my husband hadn't organised the maps or posters for the "sweep car", friends started to arrive at 7.30 a.m. and nothing was done. I sent my kids scurrying around carrying out last minute preparations, I was really fed up, and thought it would be a complete shambles. We then had to chase around the course putting up Ovacome posters at each junction, praying that the wind would be kind to them, as we'd forgotten to buy proper nails and we only had a handful of drawing pins, and a ball of string! It took much longer than I'd anticipated, we were covered in mud and half frozen. (I now know how Anneka Rice feels) and we were late for the start, thanks to the mobile phone we were able to contact my husband, and he started off the ride. I was amazed everyone turned up, and some more besides, we had 40 cyclists - an excellent turnout.

Eventually the rain stopped and the sun started to shine, still a little chilly but perfect for cycling. There were so many helpers we were able to provide three refreshment stops and a pub lunch.

An amazing sight greeted me as I struggled up the hill to the first stop, my heart almost exploding in my chest, cyclists were all over the road (oblivious to traffic), laughing and exchanging tales about "sore bums, too many hills and "did you see that pot-hole", a sight for sore eyes indeed, a moment in time that I will remember for the rest of my life.

We had just one accident prone student nurse names Sarah, who crashed into the back of another cyclist after visiting the pub and was later rescued from a ditch by my husband Ron, unscathed thankfully and still in good humour, everyone gave her a wide berth from then on.

What can I say about the refreshment ladies? Who had no maps, did not know the area but diligently raced against the clock trying to set up their tables before the cyclists arrived! They were dismayed to find that cyclists are hungry people and all the refreshments vanished after the first stop, thank heavens for Sunday opening!

Amongst the riders were two "clever dicks" wearing pedometers, and the word soon got around that they had cycled 28 miles and not 20, however everyone really enjoyed themselves, and some good friendships were made. It seems I must organise another ride next year, and "what about a walk Frances?"

Well I am just off for a soak in a Radox bath (I wish there was some way you could soak your brain!) I'm exhausted but I feel great!
Frances

Carol Morton, Thank You

Firstly, I want to thank Ovacome for information on the trial of yttrium 90. How could I not go for it when I fitted all the criteria? Thanks to you, I was the first patient to go through Nottingham on the trial and had the drug intra-abdominally in November. The staff were wonderful and moved

mountains to make it happen as we were short of time to meet the deadline. I now feel that I have the best possible chance of a longer period of remission and don't intend to waste a minute of it. My life is influenced by what I call "the-just-in-case-factor" - just in case it comes back, that is. I don't see this as negative - just realistic - and it motivates me to make sure that I don't waste a moment. I don't want my life to go back to what it was before as if nothing had happened.

To go back to the beginning of all of this - it seems amazing that it was less than a year ago, at the age of 51. I had abdominal swelling in March and was diagnosed with stage 3c cancer in April. Surgery followed by a course of Taxol and cisplatin ended in September. Thanks to CancerBacup and Ovacome I was well informed before my first oncology appointment and I've become very interested in the controversy about Taxol. I have been so lucky, especially as Taxol was available to me.

Whatever happens in the long term, it has not all been a bad experience: I've met some amazing people and my life seems to have taken on whole new direction. Many people think I am a little crazy to talk like this, but it is true.

My GP, MacMillan nurse and cottage hospital staff in Oakham, Rutland, were extremely supportive in the absence of any relatives nearby. I have also had a great deal of help from a wonderful neighbour. I am now cancer-free and picking up normal life again. After the treatments, but before I was fully fit, my spirits suddenly slumped badly. I found myself asking "Now what?" I wanted life to be different but couldn't seem to find the oomph to figure out how.

I went back to work but couldn't seem to pick up any other aspect of my life and then discovered that I was entitled to make a claim through my mortgage payment policy, even although I had been on full pay. This enabled me to have a holiday in Tunisia and has been just the thing I needed. In addition, I have started up a cancer support group in Rutland, as the nearest group is 20 miles away in Leicester. Things then began taking on a life of their own as I worked hard to publicise the group. In the course of this, things and people are coming out of the woodwork and I am hoping to become a patient representative on Leicester cancer care forum. I also "adopted" Nottingham for Ovacome and decided that I wanted to raise funds for ROC and Ovacome but then, out of the blue, came an opportunity to undertake a sponsored trek to Peru for CancerBacup. Once again, how could I not? It is a part of the world I have always longed to visit and they have agreed that if I raise more than the minimum £2500 for them, I will be able to split the extra with Ovacome.

So, suddenly, my life is full again. I am working hard to help get our local support group firmly established, have joined a fitness and health club as preparation for the trek and am about to embark on large-scale, serious fund-raising. All these new experiences and I have cancer to thank for it - it's a strange old world indeed. So, whatever the future holds - or doesn't - my life right now is promising to be fuller and more meaningful than it has been for some time, I now realise.

I also want to say that I have surprised myself as much as anyone else at the way I have dealt with all of this and believe that my commitment to the Baha'i Faith is responsible for that. No one knows if they have a belief system that will sustain them in times like this until it happens and it was a great relief for me to discover that my faith was sufficient to make the difference - another benefit of the cancer. Yes, there have been benefits and, no, I'm not crazy and I want to live forever as much as anyone else but I am glad that I have had many of the experiences and met the people I have met through it - and roll on Peru! Love to all . . .
Carol Morton

Janet Bales's Story

Five years ago I had very heavy periods; I could go nowhere for the first two days, but I never went to a GP as I've never suffered associated pain. Two years ago I started to get excessively tired and decided to go to the doctor. I was referred for blood tests but these showed nothing. My periods then turned light and I thought that this must be due to my age, 46, and decided that perhaps I was starting the menopause. They then became quite painful and I needed to urinate more frequently and often felt bloated.

My husband discovered a lump in my stomach but when I went for a scan they concluded that it was a pulled muscle due to me taking my mum out in her wheelchair and hurting my leg, back and stomach - all at the same time!. During a second scan the doctor made an internal examination and said I had an ovarian cyst the size of a melon! I was told I needed a hysterectomy. I was gutted and asked the surgeon if he could just remove the ovary and cyst. He said he would do his best but made no promises, as he could not be certain what he would find during surgery. On 24 August the cyst was removed; it measured 18 by 18 cm but everything else looked healthy and so I felt incredibly happy.

Six weeks later during follow-up I was told that the cyst might well have been malignant. The surgeon thought it was a squamous carcinoma and referred me for a second opinion. I went home after this appointment and decided not to tell anyone, after all this wasn't happening to me but to the woman up the road. Things like this don't happen to me, I am fit and healthy - or so I thought. I couldn't have coped with my husband getting depressed again. I went on holiday with my family: if I had told my husband he would have cancelled the trip and, as it was my grandchildren's first trip abroad, this was not a chance I wanted to take. On returning home I felt great and was convinced that because I felt so good I must be well.

I went back to the hospital on my return with my daughter who insisted on coming with me. I had to tell her on the way over but she had already guessed that something was wrong but respected my decision not to share the news. Nothing could have prepared me for the next thing - I thought that if I was given tablets I could get away without telling anyone other than my daughter, but more surgery was the only option. I was informed that I had a 50/50 chance of it being there and the operation was booked for 14 December. I only agreed because my daughter was with me, I was really thinking that I would go to Australia, no one would know me and I would be OK. I now had to tell my husband, I asked him to promise not to get depressed and he agreed. Less than three days later we were having continual visits - I was so angry. It made me feel that my husband was having to look after his "poor sick cow". I just wanted to scream - I'm all right - quite well in fact - thank you. It wasn't their fault, they're all good people and meant well, but I found it difficult to accept myself and found it irritating as I felt OK. What I'd asked for was not respected and I was having difficulty trying to be nice to an onslaught of visitors. On 14 December I had my left Fallopian tube, peritoneum, cervix, womb and omentum removed. I now like to be seen as fit and well.

I would just like to say many thanks to all the people who helped me, especially Debbie, whom I phoned for help and was able to come to terms with the decision to go ahead. It was the right choice. After the operation I was told that I had a fibroid in the womb and three cysts in the other ovary. Thanks again, Debbie, for talking to me, all the time I am coping by allowing myself to think it's not me, it's the woman up the road. I can honestly say I now belong to the red cross, the one on my stomach.

In February I began to feel very fortunate that the surgery alone had been sufficient. Physically I look very well but at present I am struggling emotionally due to my mother being unwell.
To end on a good note, I am OK as mine was a germ cell squamous carcinoma. My daughter, granddaughter and sister are all fine and that has made me really happy. I shall soldier on because after the darkest day is the brightest morning.
Janet Bales
Tamworth