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In memory of Norma

On Sunday 16th July 2000 my mum Norma Ann Kaill lost her brave fight against ovarian cancer: she was 55 years old.

Mum first became ill in August 1998, and after various tests ovarian cancer was diagnosed in February 1 999; my mum was already at stage 3. I often wonder what she felt at this time as she had nursed her own mother through this same disease and watched her waste away and die. Whatever horrors my mum was going through she never put them on our shoulders; she just looked at us all and said "I will not let it beat me". To me, her daughter, she just said stop smoking and make sure you get on some sort of screening programme. As ever my mum put thoughts of herself aside and wanted to take care of us.

The hospital was great and mum had six treatments of chemotherapy with carboplatin and taxol. Mid-way through the course she underwent a full hysterectomy, where they also removed the omentum. When my mum was well we had fun and tried to live life normally, when she felt unwell we just sat together happy in the knowledge that the other was there. In August 1999 mum achieved one of her goals by returning to work and doing everything she used to do before the illness and more besides, joining a keep fit class and a ladies link.

When mum's hair started to grow back, I brought her a pink ribbon as she had a tuft on the top of her head and we joked she looked like Lil from the Rugrats. We had the most amazing Christmas and New Year and we all really thought the year 2000 was going to be our year, and cancer would be something that raised its ugly head every three months and then to be put to the back of your mind again. How wrong we all were! In April 2000 things started to go wrong again and by May she was rushed into hospital. Radiotherapy was opted for this time, but unfortunately the cancer had come back with a vengeance and we told it would only be a matter of a few months.

In June mum was transferred to a local hospice for terminally ill cancer patients; they were so very good. Under their care mum plateaued and came home for three weeks; I took extended leave from work and helped my dad care for my mum. They were precious times and I will hold some good memories, some not so good. When my mum's condition started to really deteriorate she was readmitted to the hospice, she was there for another three days, but ended her days with dignity and virtually no pain.

I miss my mum so much and still find it hard to think that physically I will never be able to see or touch her. I take comfort when I think of her courage and sense of humour through her ordeal; she was and still is an inspiration. Through my mum's illness and reading Ovacome's newsletter I am now on a screening programme at my local hospital and I will continue to read each edition and hopefully try and raise awareness for you.

Editor's note: Although this is a relatively sad article, I felt compelled to publish it as it shows the inspirational side to Norma and demonstrates how this experience has encouraged Fiona to join a very important screening programme. Thank you, Fiona, for this truthful and moving story.

 

Forget the bad days

As I have recently completed seven cycles of Taxol and Carboplatin treatment I decided to share my experience with Ovacome's readers. I have detailed my problems and side effects to share with Ovacome, as I know you are keen to gather information. It is amazing how quickly you forget the bad days when you are feeling better.

I have always been active and reasonably fit: working as a senior nurse with profoundly handicapped children in a residential school setting I had to be! It was physically demanding and sometimes emotionally draining. My back and neck protested at times quite justifiably after 38 years in nursing - but otherwise I was very healthy. In February 2000 I took early retirement whilst looking forward to doing some of the things that shift work prohibited.

For a few years I had suffered with vague nauseous episodes, which were investigated and diagnosed as gastritis/ oesophagitis. I took acid-reducing medication, which did help. In August 1999 I experienced pain in my right "appendix" area, which became worse when coughing or sneezing but didn't become acute and was bearable. I saw my GP who was puzzled but decided this needed further investigation and referred me to a gastoenterologist. We were both thinking about gallstones. In January 2000 I had an ultrasound scan which revealed nothing, and a barium enema, which proved difficult because the medium was reluctant to move beyond a certain point. I was told everything appeared normal apart from raised liver enzymes, which could have been a side effect of the acid-reducing tablets. These tablets were then stopped. In the meantime I was still suffering pain, which seemed worse after fatty foods and could be quite acute. It was decided to do a study of my biliary tree and that was booked for May.

However on 1st May I was vomiting and feeling unwell - I called the GP and he did not appear to be too concerned after one vomit! But when it happened again over the next two days he admitted me to hospital. A tentative diagnosis of gastric outlet obstruction was made but when further investigations showed nothing I was eventually taken to theatre. They found stage 3c ovarian cancer with two growths pressing on the bowel in just the areas where I had been experiencing the pain. Nothing was removed at that stage but the two areas were bypassed so that I could start absorbing food and fluids again. Ten days later I was home, a stone lighter having been referred to the oncologist and the Macmillan team. I was told to try and get the weight back on in preparation for my chemotherapy treatment. This proved difficult as my interest in food had declined and the supplementary drinks given to me by the dietician made me sick. Eventually I asked for Calogen and Maxijul, which I had used in my work, and those, together with the ingenuity of my friend who lives with me and has been my chief carer, enabled me to put on half a stone.

I started my Taxol and Carboplatin in July and had further surgery in October to remove my womb, fallopian tubes, ovaries and omentum. My CAl 25, which was 550, has gone down to 50 at the last count and I feel that I can now start to plan the things I was going to do in retirement, though I realise there is still a way to go. We have likened the last nine months to a roller coaster as we have taken on board the diagnosis and its implications, become familiar with the procedures and terminology, learned to ask the right questions and got into a routine of weeks 1, 2 and 3, which governed our lifestyle. As a Christian and a nurse, who has worked in many areas and abroad, I have had incredible support from church and friends all of the country and from others I don't even know as word of my diagnosis spread. Cards and flowers arrived constantly and the prayer support has been tangible.

We were advised at the beginning to "keep asking questions otherwise they won't tell you" and perhaps because of our medical backgrounds we found this easier than most. I have been able to be detached at times and put on my professional hat. On the whole though everyone on the oncology team has been very forthcoming and willing to explain in detail whatever we have wanted to know. As for the delay in diagnosis I have no problem. As with so many other sufferers my symptoms were vague and could have been caused by many different conditions. I fit the criteria over 50 with no pregnancies but there is no family history of any type of cancer.


Sue'e side effects on Taxol and Carboplatin Treatment

I did not suffer any fevers, unusual bruising or tingling. Only once was my treatment delayed because my neutrophils were low. Having a blood transfusion after the surgery mid course probably helped to restore my blood count. 
Sue Leyland
Carnforth

Editor's note:Thank you, Sue, for taking the time to write this very useful and informative article for us. I only wish I could have read something like this when I was about to embark on my treatment. As we should all be aware - not everyone will suffer with side-effects but isn't it nice to know that you are not alone?

 

Linda & Roy Cecil's diary of Linda's battle with ovarian cancer

Linda was diagnosed with stage 3 ovarian cancer in August 1 997. Roy and Linda decided to keep a diary of events taking them through testing, diagnosis, surgery and chemotherapy. I personally have read their story prior to them publishing it and found it a very inspirational and encouraging read and would highly recommend you obtaining a copy.

Linda is a very positive person and this comes across strongly through reading the book. I have also met Linda and Roy on two previous occasions: once at the production of the video and the other time was when we asked to help launch the patient information pack back in October 1998. They are a much-devoted couple and have used their own personal experience to offer hope to other sufferers.

They are paying for the publication of the book themselves and copies are available for just £5 of which £2.50 will be donated to Ovacome. Sales of their book have already raised £1100 for Ovacome. If you would like to purchase a copy please telephone them on 01 753 593224 or e-mail them on DrRoyCecil@cs.com.

Note from Roy
We would just like to thank everybody who has purchased our book. The response since the Winter Newsletter has been very good. I am almost at the point of sending another £100 to Ova come - so it is still proving a good fund-raiser! Incidentally, one unexpected off-shoot of the book is the amount of informal counselling which we both seem to be giving whenever telephone enquiries come in. We are always happy to listen to other sufferers and offer encouragement and support, and it never ceases to amaze us how people gain so much comfort simply by exchanging experiences. We've had long conversations with many sufferers (or their partners), often newly diagnosed and not surprisingly confused and frightened. Sadly we've heard stories of unsupportive partners/families and uncommunicative doctors. We've also learned a lot about other treatments, some conventional, some alternative, which callers have experienced
Thanks again.
Linda and Roy

 

Cold caps helped me!

Phrases like "You look really well!", "You're very brave", "You deserve a medal" or "You don't let it get you down do you?" are all very morale boosting and encouraging, and, of course, a listening ear is invaluable.

I count myself very fortunate to belong to a family who have all been thoughtful and supportive, especially my husband, my mum, my sisters and brother. I have also had lots of support from friends, church family and work colleagues both old and new.

And, of course, my medical treatment could not have been surpassed. But something the nursing sister said to me during my fourth chemo treatment is still making me smile and probably will for weeks to come, she told me that the chemo caps had been offered to two other ladies who were having chemo. One lady had declined but the other lady had had her first treatment and used the chemo cold caps.

The reason I felt so pleased is that when I found out that my treatment would cause hair loss I was devastated, up until that point I had taken everything in The nurse on the ward where I was to my stride as I had heard that you hair no longer fell out with most therapies. I had to come to terms with the operation, the pain, the idea of having cancer and months of recuperation, but when the oncologist had told me of hair loss my heart dropped. Thank goodness the Macmillan nurse was sitting in the room when I was given the news. She saw how upset I was and was surprised because I had been so happy and positive about my forthcoming treatment, so she suggested that I go in contact with Ovacome, which I did.

The next day I spoke to Frances who told me about cold caps and gave me lots of information and telephone numbers. I spent hours on the telephone finding out about cold caps. Next I plucked up the courage to phone the hospital to ask if cold cap treatment was available and was told "not yet"! However I had received lots of information and had been told about an article in the European journal of Medicine, which reported on the success rate of cold cap treatment. The nurse on the ward where I was to receive my chemo was very helpful and said that they were in the process of negotiating with a company called Chemo Caps. Because I had shown interest in the treatment and was enthusiastic about it the hospital arranged for the caps to be made available for my use. The company supplied a freezer and a set of cold caps. I felt nervous but happy to be using the treatment.

I have had four treatments so far and have only lost about one third of my hair, it seems to have fallen out where the caps don't actually touch my head. I must have a small head, ha ha!!! But I am very grateful to still have hair at all and am so pleased that others are using them too, just to know that chemo caps have been offered to other patients is my medal and I believed that the treatment can only get better.
Enid Howens
Liverpool

 

The late Jennifer Anne Warren

It is with so much sadness that I have to advise you that my lovely Jenny passed away on 2nd September 2000 from the ovarian cancer that had already spread to in her liver before her successful hysterectomy in August 1999. Unfortunately she did not respond to her chemotherapy and was diagnosed as terminal in October 1999.

What both she and I would want you to know is that your support group and publications, even in the desperate situation in which we found ourselves, were a source of great comfort and support to us both, perhaps to Jenny more than to me. She would read and identify with so many of the stories and take consolation that fellow sufferers were living full and rewarding lives despite the threat that hung over both them and their families.

Jenny never gave up hope because without hope there is only despair and because of her courage we were both able to continue to live full lives almost to the end.

Thank you for your support and the comfort provided. Keep up the good work until hopefully one day this cruel disease will be defeated.

 

Helen Cooks with TV chef

Helen Bayley, our Midlands coordinator has been busy again! This time she appeared on a TV cookery programme to emphasise the importance of healthy eating. The programme was shown on 30 January 2001.

Helen was lucky enough to have the hunky Nick Nairn in her kitchen and said "I was terribly nervous about seeing myself on television but felt very relaxed during filming and at ease being filmed in my own home. I had been looking after my mother for the past 11 years and stuck to traditional recipes but I just decided I wanted to try some experimental cooking.

Helen was diagnosed with ovarian cancer in 1998 and has helped to raise both funds and awareness ever since. As well as helping Ovacome she is also involved with the Cancer Collaborative in Birmingham, and Wolverhampton based FACT, Fight Against Cancer Together. Helen said "I do get days when I feel down and upset but I don't want to shut people out and feel sorry for myself, it is essential I have a positive mind, I find receiving hugs helps me to feel better if I am down.

If you are in the Midlands and would like to make contact with Helen, please call our office on 07071 781 861 for further details.

 


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