Cancer drug wars: As experts say life-extending remedies aren't cost effective we reveal two powerful and very different views
This week cancer experts argued that life-extending drugs sometimes give false hope to patients and are too costly for the limited benefit they may bring. Here, Jane Furnival, 54, who is suffering from terminal breast cancer, argues passionately and movingly that they are wrong:
Every morning, as the sun creeps into my bedroom, my youngest son, Henry, creeps in too. He needs to check that I am still alive. And for today, at least, I am. Although hes only ten, I have not hidden from him the fact that my cancer is likely to kill me.
I have prepared him as best I can. But every morning when I wake I tell him something infinitely more important: I love you, I never want to leave you and I will do everything in my power to stay with you for as long as I can.
Determined: Jane Furnival says that she will never give up
To anyone who loves their life and has plenty to live for, that may sound like stating the obvious. But its a concept that some of the brightest minds in this country have struggled to grasp since I was diagnosed with breast cancer in February 2009.
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Since then its felt like one long battle to convince those who are meant to be saving my life to try to do just that and to recognise that some drugs (and Im not even talking about expensive ones) might be worth a shot.
So I was horrified to read this week that cancer experts have proclaimed that patients with terminal cancer like mine should not be given life-extending drugs. Apparently they give false hope and are too costly for the public purse.
While I understand the need for rationing in these cash-strapped times, and that the NHS cannot afford limitless care, surely there are other areas that should be cut back first. What about those who receive gastric band surgery, for example? What about the thousands of health tourism patients who flock from abroad to receive healthcare funded by the British taxpayer? Why should these be entitled to care, whereas it seems I have to fight the medical establishment for treatment that could keep me alive?
Loving family: Jane with husband Andrew and her son Henry
If you dont have cancer, its all very well to say, this may only extend your life for two months so its not worth bothering with but believe me, if youre in my shoes, every week, every day, every hour is precious. Besides, predictions about a patients length of life are notoriously unreliable. In June, I was told my cancer had gone to the lining of my brain and not to expect to live past September or perhaps early October.
Actually, Ill be here for my sons 11th birthday next week and although Ive wrapped my Christmas gifts already, Im hoping to be there to give them in person. The trouble is, I have learned the hard way that once youre on t! he serio us illness conveyor belt, much of the medical profession would be most grateful if you would just shut up and shuffle off, quickly and quietly.
They will tick the necessary boxes surgery, chemotherapy, radiotherapy and so on and pat themselves on the back should any of those treatments prove successful. But will they consider the options as if it were their own life on the line? Will they heck! Its regarded as somewhat unseemly, even ungrateful, to go down fighting. Better to wither and die graciously, than to ask searching questions of your consultant or trawl Google for a potential answer to your prayers.
But Im simply not prepared to lie down and die. I am a wife to Andy, and a mother to three boys Will, 24, Charlie, 19, and Henry, ten who all need me. I fight for their sakes as much as mine. To paraphrase Dylan Thomas, I refuse to go quietly into that good night, and will rage, rage against the dying of the light, even when there is scant hope.
Besides, since Ive been dying, Ive been having the time of my life. When every day is threatened, you soon realise that the only thing that really matters is love.As news of my condition got round, people I hadnt seen for 20 years got in touch, old arguments were resolved and happy memories revived. Ive even said: Sorry I hurt you, to boyfriends from the dim and distant past, who have come to see me and one of them has done a lot of medical research on my behalf, too.
I continue to work, running events at our rambling old rectory in Cheam, Surrey. A couple of months ago, I welcomed 200 people onto the lawn for an open-air performance of Macbeth. Im writing a book about my adventures in cancer, and Im revelling in the ways that my relationship with my children is developing in new and amazing ways. Is this not a life worth living, worth extending?
In truth, my diagnosis shouldnt have been a surprise. My mo! ther and my aunt had both suffered from breast cancer, and I had long believed that I was at high risk. But to my surprise a genetic screening test came back negative in 2007. So I got on with my life, attending every GP examination but barely giving breast cancer a second thought. Until, that is, I found a lump.
The doctor described my 8.5cm tumour as a big problem. I only learned that my prognosis looked bleak as in probably terminal when an oncologist friend plucked up the courage to decode her doctorly euphemisms. I waited two months for a mastectomy, by which time it was also necessary to remove 26 lymph glands. Then came a blast of chemo, a blast of radiotherapy and a course of drugs. I badgered my consultant to agree to the removal of my ovaries, which I knew from my own research could help to prevent the spread. And in doing so, I learned my first lesson in patient power: If you dont ask, you dont get.
Search tool: With the help of Google Jane discovered a drug called Zometa
With the help of Saint Google the patron saint of people who cant afford medical journal subscriptions I discovered a drug called Zometa, to help prevent the spread of cancer to my bones. It was a wonder-drug, if US trials were anything to go by, and it only cost 2 a day. But, as my consultant explained, I would only be eligible after the disease had spread to my bones. I expect he thought Id wait around for that to happen, as any good dying patient should.
Instead, I boarded a flight to Guatemala, where an eminent oncologist and his team of nurses to whom I had sent my notes were more than happy to help me. It was only on my return that my consultant agreed to prescribe it on the NHS.
If only hed stuck his neck out sooner. The cancer spread to my spine which, after a literally crippling bout of radiotherapy at the start of this year, eventually threatened! to put a stop to my gadding about. The morphine I required just to cope with the pain of an inflamed spinal column rendered me more or less useless for months. My cancer, I was told, was unresponsive to all treatments. It was at that time that my care was transferred to a palliative team, whose aim is not to give you a longer life but a more bearable death. But I knew this show was far from over.
Last week, at the suggestion of Dr Julian Kenyon at The Dove Clinic, a private clinic near Winchester which sees a lot of no hopers like me, I flew to a small clinic in Germany for something called Dendritic Cell Vaccination. Its too early to know the long term benefits, but I feel bouncier and better now and the pain in my spine is a mere twinge.
We dont offer this experimental treatment in Britain, but its not rocket science, nor hugely expensive, just cutting-edge immunology. Some of my white blood cells were removed, processed in a Berlin laboratory, and replaced in my body, with the aim that they would destroy the cancerous cells.
St Georges Hospital, Tooting were doing promising work on this, but new regulations put a stop to it. Im now tracking down Zadaxin, a hepatitis drug which Argentinian research has shown makes the dendritic cell vaccination last longer in cases like mine maybe six months. Its not yet available here. It seems that the nearest place I can get it is Sri Lanka, where it has been approved for cancer use.
In America, you can apply for compassionate permission to use new unlicensed drugs like this. We dont have so much compassion in Britain, though. Of course, I realise that under the NHS, not every treatment can be tried, not every wish granted. I know that resources are limited and difficult decisions have to be made. I know, too, that to my doctors, I am just one of hundreds of cancer patients in need.
All I ask is that they stop expecting patients to see themselves in the same way. My life every life is precious, and until I am satisfie! d that t here is no hope left, I will hang on to every scrap of it I can.
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