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Cancer survivor battles on with campaign to help other sufferers
Buy this photo » Cancer campaigner Clive Stone
CANCER campaigner Clive Stone has defied the odds to survive an incredible 31 brain tumours.
And the 65-year-old from Eynsham has vowed to keep up his fight on behalf of other cancer sufferers.
He said: “All I want to do for the rest of my life is help cancer patients because the more funding we win now, the better it will be for the next generation.”
The former bank manager was diagnosed with kidney cancer in 2007 and won a battle with the National Institute for Health and Clinical Excellence (NICE) to get it to approve NHS use of the life-extending drug Sunitinib.
But the cancer spread to his brain and he eventually needed gamma knife radiosurgery, a procedure not routinely funded by the NHS in Oxfordshire. After Mr Stone first had three brain tumours surgically removed, Oxfordshire Primary Care Trust paid for two radiosurgery operations in May and December 2011.
But he had to pay £15,228 for a third radiosurgery operation, in Sheffield, to remove a tumour in June last year, and the same amount again for a fourth operation in Sheffield in January.
Mr Stone successfully lobbied Prime Minister and Witney MP David Cameron to create a £200m Cancer Drugs Fund in 2011, with £15m of the fund set aside for the Cancer Radiotherapy Innovation Fund, to make radiotherapy treatment more widely available.
The funding aimed to give 8,000 patients access to intensity modulated radiotherapy, which targets a tumour with more precise doses of radiation, while minimising the damage done to surrounding healthy tissue.
Mr Stone said the funding became available on the NHS in April and, as a result, he did not have to pay for his latest operation on July 15, in which eight brain tumours were removed.
Before the fund was set up, patients needing gamma knife radiosurgery faced a postcode lottery, with some NHS trusts agreeing to fund the procedures while others did not. Mr Stone, who was awarded an MBE for his campaigning, said: “Without my lobbying I don’t think the £15m would have been set aside.
“I get a six-monthly brain scan and I have been told that the tumours will keep coming back and will eventually kill me. But I will keep getting them treated because I am alive and kicking and supporting lots of other patients on two national clinical reference groups.
“I had traditional surgery on three brain tumours in Oxford and gamma knife surgery on the other 29 – 31 brain tumours must be something of a record. “Some of the tumours are tiny, with the largest about 1cm in diameter, and I am still having chemotherapy.
“If I had had to pay again for the operation I think I would have thumped somebody.” Mr Stone said he has never been given a survival rate by doctors, but said: “I know I am probably doing a lot better than I should have been.
“I have got a granddaughter now and I never thought I would see her, so I am over the moon with what the doctors and researchers are doing.”
Prime Minister David Cameron, who nominated Mr Stone as an Olympic Torch bearer last year, said: “I have known Clive since 2008 and have met him a number of times to discuss his tireless work for the provision of drugs for cancer sufferers throughout the country.
“Clive is an inspirational man who has shown remarkable drive and dedication by campaigning while undergoing treatment for 31 brain tumours.
“I am sure there are many people across the country who are indebted to his efforts. “I wish him all the best and will continue to do all I can to support him as his local MP.”
Mr Stone, whose hobby is astronomy which he says keeps his mind off his treatment, lives alone following the death of wife Jan, 61, from breast cancer in 2011.
The father-of-two added: “It’s wrong that patients have had to fight for cancer treatment on the NHS and I am still supporting them as a volunteer patient advocate.
“I spend most of my days planning campaigns and taking calls, which takes a lot out of me as I am still fending for myself since the death of my wife, while having to cope with nasty chemo side-effects.
“The Cancer Drugs Fund must now be supporting well over 25,000 patients.
“We are waiting to find out the future of the fund and we will be doing something if it is taken away.
“If they take it away lives will be at risk.”
Asked if the treatment he receives made campaigning hard, he said: “It is not easy, but I am not going to moan about things.”
Mr Stone works mostly with kidney cancer patients, but said he was willing to provide advice or support to anyone with any cancer.
Surgeon Andras Kemeny, who operated on Mr Stone at BMI Thornbury Hospital in Sheffield, said: “Clive must be in the top five in the country when it comes to the number of brain tumours removed.
“He’s a fantastic character and has made it his life’s aim to keep helping other patients” No-one from Oxford University Hospitals NHS Trust would comment.
SIX YEARS IN THE LIFE OF AN EXTRAORDINARY MAN
- 2007: Clive Stone is diagnosed with kidney cancer.
- April 2010: Conservative Party leader David Cameron announces plans for a £200m pot for cancer drugs from Mr Stone’s house.
- May 2010: Oxford Mail reports almost half of patients in Oxfordshire applying for life-changing cancer drugs were turned down the previous year.
- August 2010: Mr Stone protests against NICE restrictions to cancer treatments in London.
- August 2010: NICE gives approval for cancer drug Sunitinib to be made available on the NHS.
- January 2011: Mr Stone receives an MBE and Cancer Drugs Fund is launched following the election pledge by Mr Cameron.
- May 2011: Mr Stone is told his case is not “clinically exceptional” by NHS Oxfordshire chiefs, as they refuse to pay for the operation to remove his brain tumour.
- May 2011: Mr Stone wins his battle for an operation to remove his brain tumour and operations in May and December are funded by NHS.
- June 2012: Mr Stone pays £15,228 for gamma knife surgery.
- July 2012: Mr Stone takes part in the Olympic Torch relay though Woodstock. Mr Cameron tells him: “You have earned it.”
- January 2013: Mr Stone pays £15,228 for gamma knife surgery.
- July 2013: Mr Stone has another gamma knife operation, but this time the operation is free on the NHS.
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