Narratives & Stories

Sianne's Story

Sianne was 17 and still at school when rhabdomyosarcoma was diagnosed.

Dear Geoff and Helen

I am writing in response to your request for stories of how you cope when your adolescent child has cancer.

I have tried to put my story in some sort of order but as I write other things come to mind. As you will see life dealt me a terribly cruel blow when Sianne got cancer as I was still reeling from my last loss.

My husband suffered from depression for over a year after being made redundant twice in a couple of years. He was in and out of hospital during the last year of his life, at one time having to be sectioned because he was so ill. Just after he came out of hospital the last time, he took an overdose and died in November 1993.

Sianne was my middle child and the one I had the strongest bond with. She was 15 when her father died and because my older children had just about left home and begun their own lives Sianne and I grew even more close and became each other’s mutual support and best mates. This is one of the reasons I feel her loss so desperately. It feels like I have lost my best/soul mate twice in the space of a few years.

Sianne had a lump in her wrist for nearly two years before the correct diagnosis was made. We were repeatedly told that it was NOTHING TO WORRY ABOUT! By the time they did decide to excise the lump in March 1996 the disease had already metastasised to the chest wall. The particular disease she had was Rhabdomyosarcoma, a form of muscle cancer.

After diagnosis we were referred to The Middlesex Hospital in London and Sianne was treated on the Adolescent Unit. I cannot praise the staff enough but their best efforts were to no avail. Sianne had several chemotherapy treatments, some high-dose treatments, a stem-cell transplant, radiotherapy and all the other things that go with it blood transfusions, steroids, intravenous antibiotics, etc.

What I found so hard to deal with was the fact that there was no-one to support me through all this, even the divorced parents I met helped each other, but I was just so alone. Trying to give Sianne the courage to fight and live every minute she has as well as hold everyone else together. My youngest daughter was only just 5 and my youngest son due to start secondary school. Because of the trauma of losing her father and obviously my emotional state Bethany wouldn’t talk to anyone until she was nearly 7, and I had to keep ‘abandoning’ her so that I could be in London with Sianne. I used to spend two or three days with Sianne and then go home overnight to sort the others out and plan the next couple of days. I remember very clearly the terrible pain I felt having to leave either Sianne or Bethany when I knew how much they both needed me. I would sit on the train feeling so desperate and it used to take the one hour journey for me to be able to turn off from whichever one I had just had to leave.

When I did get home all there was time to do was wash, iron, shop, pack clean clothes and make plans for the next few days; who would care for the others, pick them up from school, and look after them until I got home again.

When my husband died friends tried to keep me going by reassuring me that life would get better and then Sianne got cancer and they really became lost, there was no more they could say and everyone virtually backed away because THEY COULDN’T COPE! No one even offered to do any washing, etc. for me. I think the enormity of the situation made them forget that on top of everything else I still had a family to look after and a house to run!

During the summer of 1996 when Sianne was to receive high-dose treatment and the children would be off school for the holidays I was at my wit’s end to know how to look after them all. My brother and his wife who live in Ireland kindly offered to have them for the summer. It broke my heart to send them away I had never even been away from my children overnight until Sianne got ill, but what choice did I have? I couldn’t to it all however much I wanted to.

Then there were the emergency dashes to London when Sianne was poorly usually in the early hours, when I would have to find not only a lift but also someone to look after the children. I think perhaps one thing that helped me cope was the fact that I rarely had time to think about anything it was just one crisis after another. I didn’t have the luxury of time on my hands to worry. I have to say that without the amazing support of the Family Support Group at my local hospice I wouldn’t have stayed sane, if that’s the right term! On top of all this we were moving. We had wanted to move since my husband died and as fate decreed everything was moving during Sianne’s last weeks. We actually moved just over two weeks after Sianne died. At least I knew that Sianne really wanted the move too and that even if only briefly she had visited our new home. Lots of people were very negative about the move telling me I couldn’t handle the added stress. However, one of my supports at the hospice told me that I really couldn’t be under anymore stress than with Sianne in the hospice and she gave me the confidence to go through with it. I don’t regret the move but at the moment feel so desolate that I don’t think it would make much difference where I lived.

Another thing that seems so unfair is that Sianne had met someone very special. Whether they would have stayed together who can say, but for the last six months of her life at least she was in love. He was and still is a very amazing your man. He stayed with Sianne until after she had died just stroking her head and talking to her, along with me and Sianne’s older brother. Not only had she found her special one, but she was also doing so well at college and everything else she tried, as well as being a very popular and caring person. What is the point of giving someone so many gifts if they are only going to be wiped out before they can be used?

There was a group of about a dozen young people that were special friends of Sianne’s at the Adolescent Unit in London. They would phone each other for support and chats. Sadly in the year of Sianne’s death they all died within days, weeks, or months of each other. Poor Sianne was the last to die so she didn’t even have someone to phone who understood what she was going through. Adolescence is a time when independence should be growing but a life-threatening illness means having to be a ‘child’ again when they should be out having fun, making their own choices and most importantly needing to act and look like everyone else. One of the hardest things for Sianne to cope with was the loss of her hair, especially her eyelashes and eyebrows, and the weight she put on because of the steroids.

I found it terribly hard, because I wanted to protect her but at the same time give her all the encouragement I could to get out and try everything while she could. She did amazingly well including going to Knebworth in the middle of her high-dose treatment to see her idols, Oasis, going to V97, several holidays with her friends both at home and abroad and finally managing a week in Tenerife three weeks before she died while I remained at home in a state of sheer panic!

There is such a terrible feeling of inadequacy and failure because the one thing you should be able to do is to protect your child but cancer robs you of this gift. I found losing my child was so infinitely more devastating than losing my husband but at the time of his death I believed that I had experienced the worst life could throw at me. I still find it so hard to come to terms with why it had to be Sianne when the disease was so rare and I had already lost her dad. She had so much potential and personality. She was loved by so many, she was popular, artistic and doing well at college.

I have read lots of books on parental bereavement but the information on or for single parents is abysmal let alone for an already grieving single parent.

There were many people who I’d thought I would be able to count on when I needed them most but all too often the response I got was that THEY COULDN’T COPE but it was me that was having to live with it every second. I desperately needed someone to take over some of the burden for me. When you can’t be there all the time there are lots of little things that need sorting, like who will meet the children from school, washing, ironing, cleaning, shopping and even phone calls that need to be made. I also was struggling financially because I only have widowed mother’s allowance and was so grateful for the help I received from some cancer charities. I remember so well standing in the hospital garden late at night starting up at the stars begging for someone or something to help me, but it never came.

Sianne never whined about her situation although she used to get very angry but why shouldn’t she? Who wants to die when you have just discovered how much the world has to offer? She attempted college and ‘A’ levels twice but was halted in her tracks twice by the disease, but whatever she was going through she was always there to support her friends in their troubles, and her compassion for others never ceased, even over her last few days in the hospice. Her smile and personality is what is imprinted on so many people’s memories from tutors to friends all over the country, from all kinds of medical staff to people who only met her in the last few weeks of her life.

Losing my daughter is so hard for me to bear and only made worse by the fact that our bond was so close and we had supported each other through so many tough times. She is the one person who could make this pain easier because even in our darkest moments our dark sense of humour would surface and we would find something that only we could laugh at. But if you don’t laugh sometimes you would never make it to the end. If I can give you any more information or clarify anything please let me know.

I am still in contact with the St Helena Hospice as a volunteer and also for support for me and my children when we need it. Sometimes it helps me through just to know that there is someone I can talk to, who understands what I am trying to struggle through.

Yours faithfully

Candy