By Sophie Sabbage
As a 48 year old wife and mother with late stage cancer in my lungs, lymph nodes, bones and brain I had been quietly hoping that Lord Saatchi’s Medical Innovation Bill would make it through the House of Commons – unusual as that outcome may have been for a private member’s bill. But hey, he got it through the Lords, had The Telegraph backing his cause and won considerable support in the country, so there was some cause for excitement.
Sadly, it was not to be. Norman Lamb, the Lib Dem Health Minister, blocked it on the basis that “some highly vulnerable people, desperate for a chance of recovery or remission, could be easy prey for exploitation by the few unscrupulous practitioners who peddle false hope.”
Margaret McCartney, a GP in Glasgow, called the bill “an open door to quackery” and claims “there are already many expensive clinics already peddling false hope in the form of unproved or disproved interventions for cancer and other serious illnesses.” [paid access article]
Discounting valid treatments
I don’t doubt there are some exploitative clinics and unscrupulous practitioners who take advantage of people’s vulnerability and fear. Of course there are. But it seems to me that my vulnerability is also being used to score political points and justify a medical perspective that too easily discounts valid treatments that don’t conform to conventional paradigms.
Michael Baum, professor emeritus of surgery and visiting professor of medical humanities, University College London states in the British Medical Journal [paid access article] that “unproved treatments already blight the lives of many; bizarre diets… deny patients the pleasure of self-indulgence in choice of food or drinks. Money can be squandered on trips to healers, and, in the desperate search for a miracle cure, patients can be denied a dignified and decent death in the comfort of their own homes and in the embrace of their families.”
I find this patronizing in the extreme, not to mention disingenuous. The first thing I did when I was diagnosed was make radical changes to my diet. This has not been easy, but I am in no doubt that the changes have helped me feel stronger and healthier than I have felt in years.
A change in diet has improved the quality of my life
I have more energy, vitality and presence of mind. Old medical problems that had persisted over many years, and may well have been contributory factors in my cancer, have all but vanished. After one month on this diet – and before I started taking the cancer inhibitor drug I am thankfully on – I stopped coughing blood and getting breathless when I walked up the stairs. I am not so naïve to think my diet will save my life, but I can certainly testify to it improving the quality of my life in very significant ways.
It is bizarre for a doctor to recommend “the pleasure of self-indulgence” to gravely ill patients. Self-indulgence is part of what makes us sick in the first place. The terrifying increase in the numbers of people getting cancer – now close to one in two – can surely be traced, at least in part, to what we have been putting in our bodies in recent decades.
To encourage self-indulgent eating is far worse that denying someone a dignified death. It is likely to accelerate their death and diminish its ‘decency’. Is this his antidote to ‘desperate searches for miracle cures’? To simply bid us ‘Bon Voyage’ with a slice of pizza and a glass of vino?
Power comes from engaging in my own treatment
I am weary of the cynicism I encounter in physicians about the alternative and complementary things I am doing to support my wellness. I object to being called ‘desperate’ just because my choices aren’t all scientifically proven within UK guidelines. Some are just sheer common sense. At minimum I feel more empowered making them. I am not just doing what my doctors tell me. I am proactively engaging in my own treatment of my own disease, which shifts me from victim of my illness to author of my wellness – however long that may last. This does not mean I am deluded or denying the gravity of my situation. It just means I am still in charge of my life.
My diagnostician gave me a great gift when he found the first tumours and sent me off for more scans. “Don’t become a patient,” he said – advise I took deeply to heart. To be exploring all my options (as anyone with a five-year-old daughter would do when they’re told their time is up) does not make me desperate. It makes me determined, instead of defeated. It makes me creative, purposeful and brave.
I’m not interested in making political arguments or qualified to do so. But, as a patient with a terminal cancer diagnosis, I am qualified to talk about my desperation, my vulnerability and my hope. And there’s the biggest rub. The two primary arguments being posed against Saatchi’s bill, apparently on my behalf, are these:
- Ensuring patient safety
- Protecting patients from the creation of “false hope” (also the primary argument against many complementary treatments).
From my perspective it is cruelly ironic to be denied the opportunity of greater innovation in the name of preserving my safety. Safety from what? The certain death I am already facing? The chance I might die of something less predictable than the reliably fatal disease I already have? The peace of mind I might be afforded by going out knowing I pooled all my creativity to stay as long as I could and my doctors picked their creative toenails before finally conceding they could do no more? What?
The future is not cast in stone
But more inhumane than this is the false concept of ‘false hope’. Either there is hope or there is none, but it can’t be false or delusory or wrong. Hope is a projection into a possible future, a feeling that something wanted, desired or longed for could perhaps become a reality. That hope may not be met, but hope itself is real. It is perhaps the most profoundly important psychological fuel for anyone diagnosed with a terminal illness. The future is not cast in stone. No one can predict with absolute certainty what is going to happen or when. Hope boots me out of bed in the morning and lifts my eyes to the sunrise. Hope carries me through my darkest days of fear and nausea and pain. Hope breathes life into my cells when I am exhausted and broken with grief.
Nothing can disappoint me more than being told I can’t be cured. The worst has already happened. I don’t just hope for a cure. I hope for more time. I hope for good times. I hope for healing of mind and spirit even if I can’t heal my body. I hope for the energy to take my daughter ice-skating. I hope to wring the last drops of joy from every moment I’m given. I hope to be well while I feel ill and to be as boldly, brilliantly, beautifully alive as possible while I walk upon this earth. Hope is how I know I’m fully alive.
Michael Baum writes, “Hope is always important, but it must not be betrayed.” So don’t betray it by calling it false. And don’t betray patients like me by forcing us into inevitabilities you cannot predict and hopelessness that will surely accelerate our demise.