Give up chemo No way. I owe it to my children to fight for every day of life

By
Chloe Lambert and Isla Whitcroft

Last updated at 3:04 AM on 21st February 2012

Good Health’s GP Dr Martin Scurr revealed last week that if faced with advanced terminal illness, he would turn down gruelling treatment in favour of a pain-free end of life
His article drew a huge response, with many praising his courage and honesty. But what do patients with terminal illnesses think Here, three people tell their moving experiences…

'When you have five children you have the greatest incentive ever for staying alive for as long as possible,' said Eilish Colclough

'There have been times when I've felt like throwing the towel in… But when you have five children you have the greatest incentive ever for staying alive for as long as possible,' said Eilish Colclough

Eilish
Colclough, 44, a former businesswoman, was diagnosed with advanced
ovarian cancer five years ago and was told that at best she had five
years to live, at worst, just one or two. She lives in Buxton,
Derbyshire, with her husband Anthony, 44, and five children, Emma, 25,
Megan, 19, Abigail, 18, Jemima, 15, and Louis, 12.

My beautiful daughter Abigail turned 18 two weeks ago. I loved absolutely every minute of it — we’d decorated her room with balloons and banners and bought her a beautiful Pandora charm bracelet.

Then I went with Anthony and my five children for a lovely meal out. But the best gift for Abigail — and me — was that I was there at all.

I have terminal ovarian cancer. In March last year it had spread to my pancreas, stomach and lymph nodes. Without treatment, I’d probably not have made it to see Christmas. Instead, here I am, nearly a year later.

Chemotherapy has kept me alive far longer than I could have hoped. But at the back of my mind has always been the thought that maybe one day I would be too exhausted to continue with treatment. So I read Dr Scurr’s comments with great interest.

Cancer treatment can be absolutely dreadful. I’ve lost count of the numbers of courses of chemo I’ve had. Often I’ve been so sick I thought I couldn’t be sick any more.

I’ve lost my hair several times, had agonising aches and pains and suffered diarrhoea that went on for hours.

Dr Scurr's article last week

Dr Scurr's article last week

I’ve had days of stomach cramps when I’d cry out with the pain.

The last-but-one course (which finished in December 2010) was the worst. I suffered every possible side-effect — constant diarrhoea, cramps, appetite loss, horrendous nausea and exhaustion. Some days I couldn’t get out of bed.

There have been times when I’ve felt like throwing the towel in — it felt like death would be a relief. But those thoughts usually passed within a few hours. When you have five children you have the greatest incentive ever for staying alive for as long as possible.

I know that every extra day with them is a blessing. It’s another day for them to grow stronger and prepare for life without me.

Louis was just seven when I was
diagnosed. He’s now a strapping 12-year-old who’s just joined the Army
cadets. Who knows, I may yet live to help him pick his GCSEs.

Chemotherapy
hasn’t just bought me time, it’s bought my family time as well. As much
as we can, we keep normality going. I still sometimes walk with them to
school just to spend time in their company and listen to the older
children talking.

Then I got that bad news last March that the cancer had returned with a vengeance.

When
I was originally diagnosed, the cancer had already spread to my liver
so I always knew it was just a question of time before it spread to
other organs — in 2009 I had surgery to remove part of my spleen and
bowel.

But last March,
I’d only just finished that really awful course of chemo and I was
dreading the thought of going through it all again.

My
oncologist at The Christie hospital, Manchester, was also concerned —
he said I was so weak I might not survive another course of chemo four
months after the last.

It was almost a relief when we decided to postpone the treatment until July. I knew that without chemotherapy I’d probably be dead by Christmas. Yet it could also kill me.

When my oncologist said he was referring me to Ashgate Hospice, in nearby Chesterfield, for palliative care, I thought the worst — that it was for end-stage care.

But actually they told me they were there to help me to live, to build up my strength so I could, if I wanted to, get through another course of chemo to stay alive.

I had acupuncture and reiki healing — a Japanese technique — as well as physiotherapy and counselling, and advice on nutrition.

My strength gradually returned and by July, I was ready to face chemo again. The palliative care team helped and I wasn’t so tired, the symptoms were less debilitating and I made it through without once wanting to give up.

I completely understand how some people feel quality of life is more important than survival. But don’t forget, treatments are improving all the time and they can also do much to reduce the side-effects.

I think Dr Scurr is wrong to generalise: there’s no right or wrong way to deal with terminal cancer.

In the end it has to be left up to the patient to make the decision that he or she thinks best for them and their loved ones. Supported, of course, by the best possible care available.

Bob Clements, 30, was told he had terminal brain cancer two years ago. He lives in Bournville, Birmingham, with his parents, Rob and Jackie, and his sister and brother.

'I watched my friends getting on with their lives while I spent most of the time in hospital or sleeping,' said Bob Clements

'I watched my friends getting on with their lives while I spent most of the time in hospital or sleeping,' said Bob Clements

When I was five, doctors found a benign tumour on my brain. I had another when I was nine — it was on my optic nerve, so I’m blind in my right eye.

Then I had another tumour when I was 19. The doctors said if I didn’t have radiotherapy, I’d die within three months — so I went for it and it wasn’t really a difficult decision.

But then, ten years later, I started getting headaches again and feeling sick. It was another brain tumour and this time it turned out to be cancerous. We were shocked and we cried.

In the past two years I’ve had two operations to reduce the tumour and six weeks of combined radiotherapy and chemotherapy.

I was literally having my chemo tablet, then going straight to radiotherapy, for five days a week every week so I got the effects of both at the same time.

My hair fell out and it makes you very sick and unable to eat, but the worst thing is the exhaustion. You’re so tired you sleep all day. I watched my friends getting on with their lives while I spent most of the time in hospital or sleeping.

Last year, after my latest operation, I decided not to have any more treatment. It had crossed my mind before, but at that point it all got too much.

I’ve had enough of hospital and want to enjoy what time I’ve got left. I don’t regret the doctors trying everything, but what’s the point if you’re so tired you can’t take part in anything

My family understood my decision. My doctors weren’t surprised — I have a fantastic neurosurgeon and I knew he’d tried everything. He told me the only treatment left would be radical surgery with risks of bleeding on the brain and even worse.

Actually, as soon as I said it, it was a relief. I’m glad I don’t have to go through it any more. I’m hoping now I can see my friends and family more. My great love in life is sport and I’m looking forward to watching more football and cricket.

My family and I spend a lot of time fundraising for my local hospice, St Mary’s, which has been such a big part of my family’s life. It makes me happy to think that after I’m gone, the hospice will help families like mine.

We have talked about what will happen when the time comes. I know that I want to be at home and with my family. I don’t know how long I’ve got and I don’t really want to know. Que sera, sera, I say.

Melanie Sibley, 46, who runs her own online business, lives in Formby, Merseyside. She was diagnosed with metastatic breast cancer in 2005.

'My hair's fallen out from the chemotherapy, you feel sick and tired, but nothing stops you wanting to survive,' said Melanie Sibley

'My hair's fallen out from the chemotherapy, you feel sick and tired, but nothing stops you wanting to survive,' said Melanie Sibley

Last summer my doctors said I had less than a year to live. I had been expecting it — so when the words came, it was a relief as I knew what I was dealing with.

I first felt a lump in my left breast in 2004, but after a mammogram, doctors told me it was just fibrous tissue.

Six months later, a friend noticed a lump showing through my top. By then it was as big as a walnut. My doctor sent me to a different hospital where tests revealed I had grade-three cancer, meaning it was aggressive and had spread.

I had a mastectomy and chemotherapy, but in 2007 the cancer returned and by January last year I had it in my scalp, left collarbone, shoulder, armpits, lungs, ribs, spine, sternum, liver and pelvis. That’s when they said I had a year to live.

People say that if it happened to them they would just bow out rather than go through all that. But you’ve got to be a fighter and have faith.

Yes, the treatment is gruelling. My hair’s fallen out from the chemotherapy, you feel sick and tired, but nothing stops you wanting to survive.

It’s never crossed my mind to give up and if it wasn’t for my determination to try everything I’d have been dead a long time ago.

In August I started on a new drug called eribulin — I was lucky enough to be at The Christie hospital in Manchester which is one of only a few NHS trusts that funds it.

My tumours have shrunk — the ones under my armpit have gone completely and I am in remission. I’m never going to be cured, but I feel like I’ve been given some extra life. I’m starting to look ahead too. I met a new man, Billy, last year at the local golf club.

At the time I thought I was going to die, so I kept the barriers up, not wanting to get close to anyone.

But now I don’t have this deadline any more, I’ve let him in a bit more. I wake up now and look forward to doing things. I actually feel better about myself than I ever have.

Help the Hospices works with more than 200 hospices to provide care (helpthehospices.org.uk).

For information on ovarian cancer, go to targetovarian.org.uk