Experiences

A tribute to Sheila Wilkes

Sheila was my Ovacome Fone Friend for nearly six years, I can t even remember who contacted whom first. We quickly found that we could talk easily on the phone together and share and support each other. Our phone chats were probably every few weeks and we kept in touch when one of us was ill and when well, learning more about each other and our home situations. When first diagnosed I knew little about ovarian cancer but obviously I gradually learnt a lot more. Sheila completely understood, because of our common experience, and to talk to her was a wonderful help at every time of need.

When Sheila was well I know she had happy holidays and times with her family and friends, and seemed to just ‘get on with life' as normally as possible. Her dedication to Ovacome was admirable, on two occasions she arranged small get-togethers for Yorkshire women,it was lovely to meet Sheila and to have a face in which to place the phone voice. We all shared our experiences, and formed bonds with each other. I know Sheila welcomed the opportunity of attending Ovacome meetings and conferences, and afterwards she would tell me about these. Perhaps her biggest venture was organising the Denby Dale Concert in order to raise funds for Ovacome. It was a wonderful musical evening which my husband and I thoroughly enjoyed.

Sheila was always honest, positive and sympathetic towards my concerns, and above all really caring. We both acknowledged our Christian faith to one another, and knew that we prayed for each other. Often a little gift or prayer card would arrive from Sheila to cheer me up. Sheila was a lovely lady who throughout her illness worked tirelessly to help others. Her family must be very proud of her. Sheila was a wonderful Fone Friend, and I thank God that I knew her.

Shirley Odom
Sheffield.

Life after treatment

Many people talk of the shock and devastation that they experience when first diagnosed with ovarian cancer. Life before this point may have been relatively predictable and plans for the future made with confidence. For some, there may be a considerable delay in diagnosing ovarian cancer as the disease can often mimic many other illnesses. Some people have said they even feel relieved to be diagnosed because, before, they felt their symptoms were dismissed as being ‘all in the mind' . As the shock of diagnosis starts to sink in, people can often feel a huge range of emotions including fear, anger, sadness and guilt. Once treatment is over, it is often assumed that these feelings will subside and that life will quickly return to normal. However, for many people the period after treatment is when they are only just starting to recover emotionally and it can cause some unexpected psychological reactions.

In the course of treatment a great deal of stress, both physical and mental, may have been experienced. You may have overcome many challenges and learnt new coping strategies and skills. Throughout treatment you may have coped by thinking about all the things you wanted to do once it was over. The end of treatment might therefore have been anticipated as a very positive moment and a reason for celebration. So it can feel very surprising and confusing if, when the time finally arrives that your treatment has ended, all you can feel is anxiety, insecurity, sadness, loneliness and fatigue. Many are confused by their responses at this point and do not know how common it is to have such reactions. We hope that by reading this article you will realise you are not the only one that can experience these feelings and discover that there are many strategies that may help you cope at this time.

Fear of recurrence
For many, coping with the fear of cancer recurrence and uncertainty about the future is the hardest part of finishing treatment. During treatment it can feel as if something is being ‘done' against the cancer. It is also often a very busy period where all your concentration and energy on a day-today basis may be directed towards coping with various appointments, treatments and side effects. So when treatment ends it is natural to have feelings of insecurity and anxiety as you will have more time to think about the possibility of recurrence and it may feel as though ihcre's nothing now ‘fighting' your disease.

Stressful times
People often find that certain events set off their worries and anxiety all over again. Triggers could be reading something in the paper, having an outpatient appointment, the anniversary of your day of diagnosis or hearing that someone else you know has cancer. If you know in advance that these events may raise your anxiety level, this may make it easier to reassure yourself and you can prepare to cope with it. These periods may be the time when all your hard work learning how to distract yourself, how to use relaxation exercises and how to challenge your negative thoughts may come in useful. Returning to work may be an important point in your recovery as, for many, it signifies a return to normality and the security of what life was like before cancer. However, it may present you with different anxieties, such as wondering what to tell colleagues and how to deal with personal questions. It may be helpful to think through in advance how you are going to cope with the reactions of others when you go back to work.
Many people also expect to go back to work straight away and forget that they are likely to be extremely tired
physically and emotionally after treatment. It may therefore be worth deciding what you are able to do and consider restarting on a part time basis if possible in order to look after yourself at this point.

Family and friends
Mentioned earlier is the isolation that people can often experience after treatment ends. This may be not only because of the reduced contact with nurses, doctors and fellow patients, but also because friends and family don t seem to understand how you are struggling with fears and anxieties. Partners, relatives and friends may stop talking about the cancer, treat it as past history or offer reassurance that there is nothing to worry about now. They may simply have no idea about your own feelings because you have not openly communicated them. Alternatively, their reactions may be to do with their own embarrassment when talking about cancer or they may just be feeling glad and relieved that they can have a break from the subject of cancer for a while in order to recover themselves.

Your family and friends will have their own emotional reactions to your illness and may be struggling with their own anger, fear and guilt. They may hide this in order to protect you, or you may feel that you have to protect them from how you are feeling. Open communication is again needed to establish how both parties feel they are coping with your treatment having ended. People will have limitations on what support they can offer you. One way to explore this is to spend some time identifying who can provide what (e.g. practical, emotional, financial, social and spiritual support) within your network of friends and family. Alternatively, you may find it helpful to consider a support group in order to meet other women with similar experiences and to hear how others have coped.

Keeping control
Very often, people talk about how they feel less in control since the cancer diagnosis and face uncertainty about their future. They describe how they sometimes lose confidence in dealing with issues that would previously cause no concern. One subject that often crops up, relating to control, is looking for information relating to their disease or treatment. People s information needs vary widely and is a very individual matter. Some find that they do not want to know any more than the absolute basic information, preferring to relinquish control to the doctors or nurses. Others find that finding out what they can and being involved in any decision making can help them feel more in charge of their illness and its management. Usually doctors wait for people to ask questions about expected outcomes or disease prognoses before giving unwelcome news. On a cautionary note, some find that the information becomes a burden to them as, once asked, the information cannot be retracted and it may create more anxiety. As a general rule, it may be helpful to you to think in advance about what sort of information you would find useful and to tell the staff what your needs are.

Facing the future
Adjusting to life after treatment means adapting to a new routine and sense of normal. Many people want to return to their previous way of life as quickly as possible and resume their old roles, activities and responsibilities. However, others describe feeling cancer has given them the push to reassess their lives and find out who or what is important to them. Your priorities may have shifted and some things may no longer seem so important or even rather trivial. One woman described to us her feeling of freedom after being treated for cancer as she started to be more assertive and say what she wanted and needed for the first time in her life!

Sometimes sharing experiences, even if they are negative ones, can bring people closer together and many people have told us that their relationships with partners and families are better since their cancer experiences. All in all, your life may have changed forever but it is never too late to maximise your potential to enjoy an excellent quality of life.

This is part of a longer article by Kate Scott (Clinical Nurse Specialist in Psychological Care) and Clare Dunnell (Specialist Sister in Psychological Care) from the Royal Marsden NHS Trust, which we do not have space to reproduce in full. If you would like a copy please contact the office.

Beyond the dark side of the moon

This booklet is Jean Spelman's account of her experiences as an ovarian cancer patient. The following is a short passage from the book:
Hair today, gone tomorrow

Jean flushed the loo and watched the dark mass of hair disappear. If she was losing all her pubic hair, had the hair on her head started going? She d not noticed but then she hadn't been looking. She left the bathroom and went into the kitchen, running a hand through her hair as she did so. Aha! Her hair came away, just like stroking her dog! Over the next few days Paul followed her with the vacuum cleaner. It was like having a huge Dulux sheepdog in the house, in full moult. After a few days, when the weather was a little warmer, Jean wrapped a towel round her shoulders, took the Winnie the pooh comb and stood outside on the terrace. Combing and combing and combing, she spoke to the birds, telling them there was really top quality hair right here for them for the nesting season. She d imagined that her hair would come away in huge chunks, but it wasn't like that at all. Day be day each hair came out one at a time, and it was so cold too, blow the tattoos, she d have to wear a hat all the time!
Editor s note: lean s booklet is a really enjoyable and humorous account of how she dealt with her illness. What particularly stood out for me was lean s love of nature, and her ability to face new problems with such determination. Beyond the dark side of the Moon can be purchased from the office for £5.00. All proceeds will go to Ovacome.

The three amigos

My son-in-law recently took part in the Great North Run. He kindly chose to run in aid of Ovacome for me, an ovarian cancer sufferer. I am pleased to enclose cheques to the value of £585, generously donated by friends and family in Cambridgeshire and North East England. My daughter, granddaughter and I lent support at the event, sporting Ovacome balloons and ribbons.

Although, as I gather from your newsletters there is an active Ovacome support group in the north-east of England, we did not see other Ovacome supporters amidst the many charities represented. However, I am sure you have done well from other runners as well.

My son-in-law is Mexican and he ran with two friends dressed as the three amigos! This attracted the interest of the local press, The Sunder/and Echo, and their picture of the group is on the right. We were disappointed that no mention was made to the charity he was running for, although the reporter was given this fact - typical male, I suppose, who did not consider ovarian cancer newsworthy. Shortly after the run, I was fortunate enough to go on a Mediterranean cruise. This was a wonderful treat, having just finished a second course of chemotherapy at the beginning of August. My health caused no problems on this trip. Prior to arranging my holiday I did contact you regarding the problem of obtaining travel insurance. The cruise company (P&O) would not accept cancer patients on their own insurance. I actually insured with the company used by the travel agency we booked with, Premier Travel, a local Cambridgeshire firm. I have details of this firm which may help other members. The insurance cost £36 for 1 6 days travel with an excess of £100 should I have to cancel the holiday and £250 should I have needed treatment for a cancer-related condition whilst away. I thought this was reasonable and as I fortunately kept extremely well throughout the trip, my insurance cost no more than a normally healthy person s. I made fairly extensive enquiries about the matter, which ranged from wildly expensive to downright rejection. I had similar quotes to the one I used from the Post Office and from Saga Insurance (for those of us over 50!)

Thank you, Ovacome, for all your help and support. When I found you last year just after my diagnosis, your newsletters were and still are a great comfort, I feel much less alone with my problem.
Joyce Dolphin
Ely, Cambs

Editor's Note: it sounds as lithe run was great fun for the runners as we/l as your family, but I know how disappointed you must have been when they didn't mention Ova come in the newspaper article. In view of your experience when we approach the press in future let us be more insistent about mentioning Ovacome.

From Land's End to John O' Groats

It s not every day you wake up in a cramped camper van, don wet clothing, silently wolf down three bowls of museli, drag sore limbs onto a crumbling bike and cycle 100 miles in the rain! Nevertheless, between 8th and 18th of August last year this is precisely what I did each day to complete a charity bike ride for Ovacome.

The Land's End to John O'Groats bike ride is known as The Great British Bike Ride and has been a target of many an amateur cyclist since its inception in 1880. The first recorded riders took 13 days, a staggering achievement given the rudimentary nature of their bikes and the poor quality of the Victorian roads. Not to be outdone, I set out to complete the ride in 10 days; however I had the luxury of tarmac, and a dedicated support crew consisting of my wife Helen and our two children (Jake 3 and Holly 2). Also my sister-in-law, Sarah, gave invaluable backing over a three-day period. I departed Land s End at 10 am on 8th August 2001, cycling a scenic route and sticking to minor country roads to avoid the main trunk routes and their associated traffic.

The first few days passed without major incident, and by the end of day 4 I had cycled nearly 400 miles to Elfesmere and was feeling remarkably fresh.
The next day disaster struck, I ripped both cycle tyres in Runcorn and waited by the roadside for 3 hours whilst my wife rushed back to meet me with spares. This incident left me with four hours of daylight and a further 70 miles to travel; I made it, but injured my knee in the process. From that point on the ride became more about enduring pain and discomfort and the earlier days of euphoria were receding fast. A couple more days of painful pedalling and further mechanical troubles saw me in Scotland and I headed up to the Mull of Kintyre with a brief skit around Arran to raise the spirits.
Crossing Scotland, through Oban past Fort William and along the Great Glen to Inverness, conditions were unpleasant as I was buffeted by holiday traffic and shaken by terrible road surfaces designed more for coaches than cyclists. Finally, after 1 0 days and the immeasurable help from the support team, I camped in Dornoch with one day to go for completion. The last day s cycling was fantastic, a beautiful run up the East Coast of Scotland via Wick to John O Groats itself. I finished at 2.45 p.m. on 18th August 2001,tired and in pain, but (mostly) intact.

The ride raised £1,150 for Ovacome through sponsorship and the sponsors generosity was the driving force that helped me to complete The Great British Bike Ride.
David Barter
Swindon, Wiltshire.

Editor's Note: what an amazing achievement, I hope you've recovered, David, I m sure your family is glad to have you home again.

A note from David's Mum

This year I felt so proud of my son as he set off to cycle The Great British Bike Ride to raise money for Ovacome, and as we tracked his progress throughout the ride I reflected on all that has happened in the last six years.
Life is great! I have three adorable grandchildren who help to fill the gap that was left when I had to retire from teaching small children, and I m so lucky to be enjoying retirement with my husband. A very special thank you to Ovacome for giving me support, information, something positive to do and most of all .. ..friendship!

Jenny Barter
Lyneham, Wiltshire

Editor's Note: Jenny has recently learnt that some radiation treatment which she received has caused some damage to her bowel and she now has to live with a modified diet. She would be p/eased to hear from anyone who has had similar problems. Jenny is one of our Fone Friend co-ordinators, who has given so much to countless women who have come into contact with her. She can be contacted through the office.

A Husband's Story

My wife Shirley died on 12th October 2000. She had no symptoms of illness until 15th August, was diagnosed with ovarian cancer on 18th September and died five days before she was due to have a hysterectomy, of pulmonary embolism. That is another story.

My daughter Judith (35) was due to run the Great North Run 2000, just two days before her mum s funeral. During her mum s illness she did not train, but eventually decided to run, rather than let down her sponsors, who were donating to the village school where she lives in Watton, Norfolk. During our dark days we both resolved to run the Great North Run in 2001, for two ovarian cancer charities, Ovacome and ROC.

Our training this year was spasmodic. For me the gradual build-up was progressing well, until I had a calf muscle injury in July. After that I was wary of running too hard or for too long, for fear of suffering further injury nearer the race date on Sunday 16th September. For Judith, with two daughters of her own and a full time job, training was never easy, but she managed regular runs with her friend who also ran at Newcastle. As Judith had run before she knew the ropes, and had booked us into a hotel in Newcastle on Saturday night, near enough for us to walk to the start the next morning. We took two cars for three runners and the two members of the support (booze) team, Judith s husband Sid, and her friend s husband. On the Saturday, the runners just had time for an evening meal before retiring early, while the support team tried to drink Newcastle dry. They had much competition, as this was the evening when Newcastle United had beaten Manchester United in a thrilling 4-3 match.

On the morning of the race, the runners were up at 7 am for a substantial breakfast, while the support team needed a lie-in! We started walking at 8 am, with a gradually increasing number of people towards the start. The support team merely had to rise, pay the bill and reach the finish in South Shields by about mid-day. The soles of my feet began getting hot after 3 miles or so, and by 5 miles they were burning. This is a known problem, and I quickly recover if I stop. I was willing Judith to say she needed to stop, but after 8 miles I had to give in and stop. There were plenty of drinks stations, a large crowd cheering us on, and bands everywhere, all seeming to play jazz. We stopped twice more to walk for short periods, and so our average slipped to below 11 minutes per mile.

The worst part for me was a steep downhill section about 2 miles before the finish, which was difficult on the thigh muscles. We were then on the final mile along the sea front at South Shields, where we met the support team. The finish was also well organised (we finished in 2 hours 27 minutes), and soon staggered along to collect our teeshirts and medals. It was then a case of collecting our bags, getting in our cars and driving home. We got home at 8.30 pm, and it was very difficult walking then! I ran in an Ovacome teeshirt and Judith ran in a ROC vest. We both had suitable messages about Shirley on our backs.

We have raised over £1 ,300 so far, with a little more to come. I have sent £500 each to Ovacome and ROC, but am accumulating the rest until the London Marathon. I will never do anything like this again, but Judith is hoping to run in London. It is a lottery to gain a place, but Judith has two chances, on her own or maybe a place with Ovacome if that fails. We hope that through our efforts, and generosity of our friends, this "silent disease" will be beaten, and other families saved the heartbreak that we now have.

John Horan

Editor's Note: Judith now has a place on our marathon team (see page 4) and will be running for us in April.