Experiences

Fore-armed is fore-warned

Every time I read your magazine it reminds me how things have changed in the last two years aid how grateful I am to live in Bristol. Seven years ago, aged 50, I had a hysterectomy internally, but my ovaries were left in place. This was carried out privately and I was told this would be the most suitable way so that I could return to work quickly. At that time I didn't question why, at that age, I was keeping the ovaries, but recovered quickly with no problems until two years ago. My story at the beginning is so similar to others being that the only signs were repeated urinary infections and a swollen stomach, which progressed to a lump. After tests, an operation for stage 3 cancer was needed. This was carried out immediately and then six treatments of Docetaxol and Carboplatin followed, administered by terrific Sue. My main concern was the loss of hair, but luckily Cold Cap was available. It was like having a bag of frozen peas on your head and a need for a scarf and a sweater.

The reaction to chemo varied from sickness, mouth ulcers and a heightened sense of smell, which meant I could only eat melon. Ovacome's ideas and stories help so much - knowing that I was not alone. Time was spent searching the internet and newspapers for cures and information as I was determined to be involved with getting better. One was an article in The Times for a Japanese vaccine SSM (Maruyama) which you inject every other day. After initial problems in finding out how to inject- it is not a recognised drug in the UK - we ordered the first three months' supply at a cost of £180 with the agreement of my open-minded oncologist. There were delays in getting the vaccine and no feedback other than the first basic information.
months, in March 2000, we stopped treatment, as we had no way of knowing if it was working.

In April 2001 problems with my kidneys meant stents were inserted (fine plastic tubes from the kidneys to the bladder), then a couple of months later after a bout of high temperatures and shivers, I was rushed to hospital. X-rays and scans were taken and I was told that there wasn't much more they could do. Although radiology could be an option, it might be better to go home. After a few days of feeling sorry for myself, we looked at other options, the health shop and the local chemist, who supplied printouts of various drugs, we found on the Internet. I was then taking Pynogenol, Sea Kelp, Q10 and Selenium Bonus. Next stop, we enquired at the Homeopathic Hospital for help, as I had used their tablets in the past. Again we were lucky, as a new doctor who specialised in cancer had just been recruited, she was more interested in my whole health than just the cancer and I found this refreshing. Gradually my health improved and eight months later I was feeling much better.

The only blip was pain when trying to cut my toenails - this gave me dreadful spasms. I thought it was the cancer but - to my surprise - it was a hernia. My supportive surgeon was willing to operate so we decided to go ahead. Whilst operating they also found two tumours, the large one was attached to the bladder and, as far as they were able, they had removed what they could see.

After this great news we wondered what had happened -- six months to go from written off to clear - as far as they were able to see. Hopefully now I will have further treatment via oncology and the homeopathic hospital and, of course, we are still searching. I am taking IP6 (Cellular Complex Remedy) which was recommended by Jan de Vries on TV (for information, telephone 0208 441 8352). There are new articles all of the time and lots of good things happening.

I have had excellent treatment and care but it helps when discussing your illness to write down what you want to know as doctors are busy and at a time when you are vulnerable you can become part of the system. If anyone would like to talk about these alternative treatments then please contact me by e-mail on: pdweb77@hotmail.com. If you do not have a computer then try your local library, most of which do have this facility and will help you to use it. Whilst reviewing this I realise how simple this all seems but there have been bad times but I have been SO lucky to have wonderful support from Jenny at Macmillan, Ben in hospital, my doctor, Liz at Homeopathy. Most of all my husband Ray, who never once tried to halt my quest to get my life in order, such as trips to the crematorium, which must have been bleak for him. If I have any message, it is to do what you think is right for you - you are important to your well being. With lots of love...
Pat Dawe

A long journey but a happy end

Hi, my name is Kate and I am 20 years old. Two years ago I was diagnosed with stage 2C ovarian cancer. I underwent a partial hysterectomy the day after my last A- level exam, during which I had both ovaries removed and it was discovered I had two cancerous tumours (dysgerminoma). Four weeks later I began a 1 2-week course of intensive chemotherapy.

I felt fine really throughout the diagnosis, really just wanting to get stuck into the treatment. However, week after week of treatment, infections and debilitating side effects soon took its toll on me. I finally finished my treatment four (long) months later and naively thought that I would soon be better. In fact it's only now, two years on, that I finally believe I can start to really live again, although I still suffer leg and joint pain (unexplained). The treatment I received was fantastic and the doctors and nurses were fantastic also, but since then I have at times felt incredibly alone and afraid. More support and advice about post treatment difficulties would have been a great help to me.

Now I am trying to come to terms with life post-cancer and have recently received a great report from the hospital. I couldn't have done any of it without the support I received from some very special family and friends, in particular my ever-loving boyfriend, my fantastic parents and my two wonderful brothers. Without them my journey would have been so much more unbearable and every day I wake up to face another day, I am grateful to them and my doctors for not giving up on me.
The future is still something I find difficult to contemplate but reading the inspirational stories in your newsletter certainly helps. I now feel that cancer doesn't have to dominate my life any more, it's time my boyfriend and family had the old me back (or should I say the new me?). I would sincerely like to wish anyone who is having treatment etc all my love and best wishes, it is possible to get through and if I can be of any help to them or you at Ovacome please do not hesitate to let me know as like I said I now think it is time to start giving something back. Love .
Kate

Editor's Note: Kate, your story is so similar to my own. Counselling certainly helped me to come to terms with my surgery, infertility and sexuality. But like you, I was of the opinion that life must go on and I am now five years post-op. would like to take this opportunity to wish you, your boyfriend and your family all the very best for a happy future. Thanks again for writing your story down to share with others, I am sure they will find it beneficial to know that life can go on after cancer.

Tricia's story

I feel that I would like to contribute my story to Ovacome. I hadn't felt myself since I had my third child by caesarean section in 1993, but, of course, thought it could be due to having three young children later in life. In July 2000 I had the most terrible stomach pains with sickness. I was examined but nothing was found. Two weeks later while on holiday I was ill again with mastitis and advised to visit my doctor when I returned home. While my concern was for my breast the doctor was more interested in examining my pelvis and immediately found a lump. I knew from then that I had ovarian cancer. However, when it was confirmed, the shock of being told was no less. The most difficult aspect for me has always been thoughts for my beautiful children, who are now six, eight and eleven.

On 5 August 2000 I had my operation. Unfortunately that was followed by a water infection. I had a really bad time but eventually I went home. The infection, which cropped up twice more, put my chemotherapy back. I was so scared of the unknown with the chemo and was so thin and weak. Starting on the same journey as myself was another lady. We just clicked and spent the whole five hours talking about gardening, our families and, of course, our illness. Each time we met up for our chemo and looked forward to another chatter. We shared common interests: mainly plants and gardening. The chemo wasn't as bad as I expected. I put on all the weight I'd lost and more. I wasn't sick and I enjoyed my food. I had a nice wig which I had sorted out before I started the chemo. I went to Trimar once a week and they were marvellous. It is such a calm atmosphere. Life at home can be a little hectic with three boys. My chemo was unfortunately delayed as my white count was too low and that was a low time. I had to wait six weeks in the end and then it was decided to give me a reduced dose and forget the last dose.
I felt so negative I could hardly believe it when Dr. Osbourne wrote to me saying that my last scan was "entirely normal . That was in March 2001.

I have had a lovely summer with the boys. Owen started senior school this week and he looks so lovely in his new uniform. I am so proud of the boys - it was a hard year for us all but we got through it!
With love
Tricia Paskauskas

Sharing Experiences

I have spoken on the telephone with Louise Bayne (some time ago) about her experiences, but have not been able to find anyone else with experience of borderline tumours, thus my question can anyone share their experience or knowledge of BORDERLINE ovarian cancer? I've been reading the newsletter, using the Fone Friends line and following people's stories since being diagnosed with stage III borderline OC three years ago, but, apparently, borderline or tumours of a low malignancy are few and far between.

I admire those of you who do so much for Ovacome and often want to do something myself, but I find it enough to cope with: hospital visits and chemotherapy, school activities and homework with my seven-year-old son, a grown up son and a stepson, church activities (I have been part of an active Vineyard Church for 10 years), we have two allotments and grow most of our vegetables and some fruit; and I can't resist the local auctions for antiques and bargains. This all seems to be more than enough for me as I am not as energetic as I used to be, although I am able to carry on fairly normally, but much more slowly with limitations, especially on the stress levels! My abdomen is huge and heavy with tumours and ascites and I am amazed that it all functions and I can still ride around on my bike. The common remark is "When is your baby due? . I am fortunate to live between Dorchester and Poole and have Dr Richard Osborne as my oncologist. Many of you know that he supports Ovacome and will have seen him on video with Jenny Agutter and know of his specialist knowledge of ovarian cancer. I have always fully trusted his judgement and felt in good hands; however, it seems that borderline tumours are not easy to deal with. They are slowish to grow so have the advantage of giving more time, but on the other hand do not respond well to chemotherapy because of this.

Having said that, weekly Paclitaxel is keeping me stable at present. I have always understood that my condition is terminal unless new discoveries are made soon, particularly regarding borderline ovarian cancer. Personally, my faith in God gives me the hope that death of the physical body is not the end. When my time here will end I do not know, so I will gratefully continue taking the advice and treatments offers. I do have a mental struggle every week to actually get myself to the clinic for chemo and often cannot face going at all; having said that, though, the side effects from the Taxol are not too bad. I do not feel sick, just drugged for a few days. The stress of being ill for so long has put a strain on our marriage and I am finding it increasingly difficult to be positive. My letter goes out to any of you who may be in a similar position and to ask what treatment you have, what response you have had to it and does anything seem to be working for you? I really do look forward to hearing from anyone who has any notes to exchange.
Kim Holmes

Editor's Note: Kim has been administered many different chemo drugs including Carboplatin, Thxol and 5EU and has also had her ascites drained on a number of occasions. If you have undergone a similar experience please do phone Kim and reassure her that she is not alone.

A loving daughter

I wanted to write and thank all those people who have written their stories and I shared very personal things that have touched and helped my family and me. In December 2000, mum's cancer recurred after 10 years, she is now 54. As with many of you, my world was turned upside down, as she is one of the most precious people in the world to our family and me.

The thing is, sadness can take over and four weeks ago mum had some bad news, and since then has let the cancer rule her. We talk about it a lot, but mum can't seem to get back to being positive. It is difficult trying to understand what she is going through, when I haven't been there, but I know many of you will. The one thing I have done is to listen and tried to capture in a poem, how she wants it to be. I just hope, in time that the words reflect our future, because I don't want the cancer to take up every bit of her life.

Life is so important, whatever time we have, and I believe that we all have special powers and energies that can will the cancer away. I hope my words in some way help mum to find a coping strategy and maybe sharing it, might help someone else. With affection,
Kay Durrant
Harrogate

Aileen Whittaker's story

Summer 1999, and three evens were to happen that would change my life. I eagerly awaited my daughter's wedding on 14 August and it was everything my husband and I wished for her. The previous Monday I had found myself instead of deputy manager, acting as a stand-in as my manager moved on. The groom's family had flown in that weekend and life was pretty full and exhausting. Even after the wedding with a week of entertaining neighbours and friends with cake and wine, no wonder I thought my stomach was a little bloated. A combination of nerves and lack of a holiday I thought. The happy couple returned from a honeymoon in Kenya, spent a lovely weekend with us and returned to Kent to start their married life.

The third event was to be the most dramatic. Taking a group of clients on a boat trip down the River Tees found me having difficulty with the zip on my jeans. Overeating - no a little pain - so a trip to my GP was booked. Five long days for an appointment!! What do you think it is?, he asked. A little bowel problem I answered in my naivety. A fibroid or a cyst the GP answered on examination, off for a scan was his reaction. My colleagues at work joked: eight months pregnant!! What, at 55 years of age? The following week the GP asked me are you still working? Yes, I replied, well not any longer! A sick note was written; you will not work for some time, as you will need to see a consultant. By the following week I was increasing in size so much and in pain that I was admitted to hospital. There the bombshell was dropped. "I don't know what your GP has told you, but there is an 85% chance of cancer. A kindly neighbour had taken me into hospital as my husband was away on business.

From that time my life changed from being a carer to being cared for. My brother arrived at the hospital and phoned in late for his shift as a policeman. This was my brother for whom I was always being a second mum too. My husband came home and we spent an agonising few days pondering over what they would find when I had my operation. My daughter came from to take me to the hospital for tests. My son came home to support his Dad. I had my operation on 1 November 1999. I was astounded at people's reactions. From being the visitor I became the visited. The nurses joked with me - to get to my bed they joked it was like visiting a flower shop and I had visitors lined up in the corridor. I make a good recovery - if only I was like the other ladies in the ward or how my mother had been with a hysterectomy. Self-pity never helped anyone!

My all time low was the referral for my chemo. An overworked consultant in an inadequate oncology department in the dark days before Christmas. Read this, I was told - a list of side effects of treatment -- and sign if you want to go on a clinical trial. Two worn-out nurses propped up the door in a tiny medical room. You will lose your hair within two or three days. My daughter sped out to catch the pharmacy and my husband struggled to read with an eye complaint. The pressure mounted. Come back tomorrow or sign now. I knew so little of what I was suffering from so decided to go home and cry - frightened I was going to be a burden on my family. The following morning my lovely daughter phoned the NHS helpline information, found a wig shop and took me out for a hat.

Six weeks and a day later I was introduced to the hospital, which was a building site, a nightmare of no parking spaces. My daughter devised a diet to include nutrients to keep my blood count up. My friends rallied round, one contacting a Macmillan nurse who found me some information about ovarian cancer. My lovely family came home for Christmas - my son was reluctant to return with his girlfriend. 2.30 pm - o'clock, as soon as they set off, my hand to my hair, it was time for the wig.

My friends and family continued to visit and each day was a special day the district nurses visited each week take a sample of blood and survey how far I had got with the embroidery. A butterfly cushion became my lifesaver. Everybody's baby got a knitted cardigan or a sewn quilt. Each day the postman struggled with mounds post and letters. My home became the meeting place incorporated. Visitors came, letters came from USA friends I had worked with 20 years previously. Friends not only from my own small church but sister churches. The hardest part of the illness was the pain I caused my family and friends. Each treatment left me looking more bloated and poorly; more perseverance was needed. My two lovely elderly aunts became substitute mums and my in-laws became frequent visitors. My cousin, brother and friend continued to ferry me to hospital and my husband continued to care for me when I was too ill to cook or do the housework.

How I longed for my life back: full- time work, church activities, helping with the Girls' Brigade, walking and spending time with my fanily and researching my family tree. My work colleagues kept in touch, the phone was always busy. At my best I would walk to the shop with a neighbour; at my worst I would lay in bed with the door locked but able to sometimes talk with a friend on the phone. My daughter, a schoolteacher, would phone at break time. I would hear the bell ringing summoning her to another set of unruly behaved youngsters. My son would phone whilst sitting in a traffic jam as he tried to get to a site ir London to repair a mobile network. As I pulled round from each treatment I was almost embarrassed by the constant flowers, plants and 112 cards plus letters.

The treatment ended, thank God - the news was good. My first holiday was to be a trip to see my daughter and son-in-law and a day in London with my son and his girlfriend. Our son spoilt us with a Chinese meal and our daughter with tickets to see The Lion King. I struggled harder to get fit, one hour at a local gym and three 20-minute swims once I had bought a swimming hat! Every day a special day. I will walk myself better. I hoped I was doing the right thing. "God helps those that help themselves : the old- fashioned saying ran through my mind. A holiday abroad was planned in July 2000 - my hair started to grow. I went in a wig and came back with a covering of soft down. Returning to the Girls' Brigade, the little girls stroked my head for fun. My seven- year-old nephew wrote me a beautiful card, it's good for children to see people get better, I thought. His granddad had died with cancer the previous year. I was summoned to see the works doctor, an event that most people find very trying, and discovered at last some real encouragement from the medical profession to get my life back. We joked with each other and hoped we wouldn't see each other again for a very long time!

Eleven months later I returned to work as the deputy to a new manager. It is hard to describe my feelings when my keys were taken off the board, a welcome back card was on my desk. The staff eased me in and the clients were anxious for me to resume. One client had waited patiently: "Can I finish sewing my blouse . What blouse, yes, of course. My brain worked better than my middle regions. Tiredness and aching resulted in my need to chat to a counsellor in April. I have got my life back with a great sense of gratitude for the treatment of docetaxol and carboplatin chemo and for all the love and support shown to me by my husband Frank, daughter, son, family, friends, work colleagues and neighbours. My check-ups at the hospital every two months come around quickly, my feelings are a mixture of apprehension and reassurance. I hope my story will be an encouragement to other people.
Aileen Whittaker
Stockton upon Tees