My village saved my life: town raised cancer treatment money
Published: February 15, 2006 | 3542nd good news item since 2003
Suzanne Digwood, 34, lives in Loughton, Shropshire, with her husband Richard, and children Chloe, 14, Rosie, 12 and nine-month-old Harry.
She was diagnosed with aggressive breast cancer last year, but has only been able to get the drug Herceptin – which will increase her chances of survival dramatically – after her village raised the £40,000 she needs to pay for it privately.
Here, she tells us what this meant to her…
Having worked as a nurse in the NHS since I was 17, I never thought it would desert me when I needed it. It wasn’t perfect but I had no doubts that when it came to saving lives, the NHS was second to none. Now I know you can’t rely on it.
When I was diagnosed with an aggressive, stage-three breast cancer, I was told I had only a 50 per cent chance of survival. Yet if I was prescribed the new drug Herceptin, that would rise to 83 per cent – and it would halve the odds of the cancer recurring.
But I can’t have Herceptin on the NHS because my local Primary Care Trust (PCT) won’t pay. They say it’s not officially licensed and costs too much, but what gives them the right to play God? It’s down to politics and money and they’re putting people’s lives at risk. Thank goodness I have such good friends and neighbours.
I had known I had cancer for only four weeks, and had just learned I wouldn’t get Herceptin, when two friends told me they would do whatever it took to raise the money. Before my diagnosis last August, I suppose you could say we lived an idyllic life.
Life had seemed perfect
I married Richard in May 2004 – ironically after meeting him at a cancer benefit – and we lived in a centuries-old farmhouse in a village in Shropshire. My daughters, from previous relationships, rode ponies and when I fell pregnant with our son Harry, life seemed perfect.
But then, one night when I was in the bath just two days before Harry was born, I found a small lump on my right breast – just a centimetre across.
I thought it was strange but wasn’t too concerned – I’d found a lump about five years before that had turned out to be a cyst. And, as a nurse, I knew most lumps aren’t cancer. But because my mum had suffered from it, I knew I had to get it checked out and decided to make an appointment with my GP on the Monday.
However, over the weekend I went into labour and my son Harry arrived nine days early on May 10. I was so happy but at the back of my mind was a recurring worry about the lump, so I went to see my GP. He told me he couldn’t feel anything but to come back when I’d finished breastfeeding.
‘I’m so glad I didn’t cancel’
It preyed on my mind so I went back two weeks later and was referred to a specialist at the hospital where I’ve worked for over 11 years. The specialist saw me and again thought it was nothing, telling me to return in six weeks. I very nearly didn’t go back – now I’m just so thankful I decided not to cancel.
When I arrived, the doctor gave me an ultrasound and needle biopsy. I was a bit surprised because I thought he’d tell me it was nothing again and send me home. But before he said anything I suddenly knew it was cancer.
As he told me it was, I felt the blood rush to my head. I was alone and tried to stay calm and ask questions but as I left, my legs turned to jelly and I could hardly walk. Both my husband and my mum, Teresa, were calm and reassuring but I kept bursting into tears, thinking “I’m going to die” and worrying about who would look after the children if I did.
It was Harry I was most concerned about. I’ve had an influence on the girls – they’ve taken on my values, spent time with me and I’ve helped shape their future. But Harry wouldn’t remember me. It was heartbreaking.
A week after the diagnosis, I was back at the hospital having a lumpectomy. But it wasn’t as simple as they thought – the cancer was in two lymph nodes and a blood vessel so they removed all the nodes from under my arm.
A week later came the worst part – they told me the statistics on survival. I was told I had a grade three tumour – not the worst but very serious. Then they told me I had a 50-55 per cent chance of survival. I was horrified. I knew I had to do something to better the odds.
I’d seen a report about a woman fighting to receive Herceptin. I remember thinking how awful it was. It never occurred to me I’d be in the same situation, having to fight for my life, two months later.
Because of the guidelines, my consultant wasn’t supposed to test me for my suitability for Herceptin but he did – I think because I’m a nurse with a baby who he’d sent away the first time.
A few weeks later, I got the results and was told it was a “strong positive”. It brought mixed emotions because although I was suitable for Herceptin, the HER2 type of cancer that it treats is very aggressive.
But I found out Herceptin is very powerful – if a tumour is treated early with the drug and chemotherapy, the chances of the cancer returning are halved.
It is so effective that the women in the study who were only treated with chemo were offered Herceptin immediately afterwards – the results were so good it was deemed unethical not to treat them.
Yet the NHS is prepared to let myself and all the other women who need it risk our lives while waiting for it to be approved by the National Institute for Health and Clinical Excellence (NICE) and for the Government to find funding.
My consultant said he’d fight for me and he’d be surprised if the Primary Care Trust didn’t give it to me – there is room for discretion – but Shropshire County PCT is deeply in debt and that’s one of the reasons they won’t pay for it.
So it’s been left to my friends and family to raise the money I need for treatment every three weeks for a year. They shouldn’t have had to – but they’ve been incredible and it only took them ten weeks.
My closest friends Alison Vaughan and Sarah Clary immediately got to work as soon as they knew how much they had to raise. When I first learned I had cancer I had told them sitting in Harry’s room and we had all cried together. I think they were almost relieved to find something they could do to help me, and so they threw themselves into fundraising.
Suddenly everyone knew and was raising money. There have been bingo nights, sponsored walks, runs and bike rides, sky dives, coffee mornings and car-boot sales.
Someone produced a £1 band to wear round your wrist supporting me, a big ball was held for me and even my dad Ron went on a sponsored diet.
Alison’s daughter Molly asked for donations rather than presents for her seventh birthday. Each of these events raised between £500 and a few thousand. It was lovely having people doing things for me, but also humbling.
But the biggest by far was an auction of promises, organised by the shooting syndicate. Word got round so quickly they had to start turning offers away and in the end they had 200 lots to auction.
I was at home that night. I didn’t go to any of the fundraising events because I didn’t want people to feel sorry for me. I was feeling ill at the time and just wanted them to feel happy. But that night my family kept texting me to tell me how much had been raised.
They started with £2,000 then £5,000 and kept going up to £27,000 in just one night. It was amazing, really emotional.
It just shows it’s wrong to assume there’s no such thing as community spirit any more. This has proved to me there is – particularly if you live in the countryside, where everyone knows each other.
By November I had enough to pay for my Herceptin. It was such a relief – I knew I had to raise the money by the time I finished my chemotherapy in February because Herceptin is most effective if you have it immediately after.
In total we got £50,000 and the extra will be going to help other women in my situation. I had the last session at the beginning of this month and a scan showed there was no cancer left in my body. I see the Herceptin as an extra insurance – because it was in my lymph nodes, it would be more likely to return.
I’m a different woman now. It’s hard to come to terms with the fact you’ve got cancer. I look in the mirror and think: “Is this really happening?”
I got married two years ago and I see the photos where I’m vibrant and healthy and attractive, then I look at myself now with no hair and a line in my chest to administer the chemo. I just look ill and it’s quite a shock.
Thankfully, Richard’s been amazing. How I look doesn’t come into it. He says he still fancies me. And no matter how many times I ask him, he always tells me I’m going to be fine. But he has found it hard to deal with the fundraising.
Men are very proud and like to feel they should be able to provide everything. But I don’t care where the money came from, I just feel we’re lucky we had good friends and neighbours to help us.