Cancer is not a merciful killer – the research billions are well spent
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Version 0 of 1. “Cancer is the best way to die,” declared Dr Richard Smith in an article in the BMJ last month. And what’s more, we should “stop wasting billions” trying to cure it. As an oesophageal cancer survivor of nine years – and now a terminal pancreatic cancer patient – I was deeply offended by Smith’s assertions. My first reaction was to pen a scathing attack on the author and publisher who, in my humble opinion, acted irresponsibly, resulting in a global media frenzy that focused on those shocking sound bites. But on reflection, I concluded that I should not focus on the offence, but engage in the debate and test the hypotheses that Smith’s article put forward. So, is cancer really the best way to die? Richard suggests two reasons for this hypothesis: Well, I’m now in my fourth month of my death sentence, and I will share with you my direct experience on these two points. To be fair to Richard, I do believe that a slower death has the benefits that he suggests in his first point. BUT – and it’s a big “but” – this would apply to many other terminal diagnoses as well, and is more an argument for delayed versus sudden death, NOT an argument for cutting back cancer research per se. Additionally, I would point out that it really doesn’t take very long to put your affairs in order. In my particular case I would say that I had mostly completed this part of the process in 2 to 4 weeks, which included legal, financial and communications with family and friends. So let’s move on to the second point: a terminal cancer death is “only unpleasant in the last few weeks”. Sorry Richard, but you couldn’t be more wrong. Here are some insight into my own experience. Psychological aspects While I was on post-operative chemotherapy, when I was faced with the reality that my cancer had spread, I went into denial and thought that my medical team must be wrong. I inundated them with questions, and suggestions of how my previous history of liver aberrations could be responsible for a misdiagnosis. Of course I realise now how futile that was. But I needed counselling to help me to that realisation. However, what this highlights is that I was immediately suffering from the news. That meant not being able to sleep, not being able to get it out of my mind. Being scared, bewildered, confused and angry. Now as I highlighted earlier, those feelings would probably be appended to any terminal diagnosis. But I had already undergone a Whipple operation with extreme difficulties because of my previous oesophagectomy, and had spent 24 weeks in post-operative chemotherapy. On top of this, I was convinced that I had yet again miraculously beaten “the big C”. I felt strong, (well strong-ish) and was holding my weight. I was planning to return to my high-powered job. But the moment those liver lesions came up on the CT scan, it all got dashed on the rocks. So, sorry Richard, but the psychological impact is way bigger, and occurs earlier, than you seem to realise. I could probably write a whole book on the psychological aspects, but I’ll leave you with a few clues: Physical aspects When you are a terminal cancer patient, about the only thing that can be done for you is to place you on palliative chemotherapy – in my particular case a very nasty regime called FOLFIRINOX. I go into the chemo centre every 14 days. The in-patient part takes seven hours, from start to finish. I then return home connected to a chemotherapy pump, which runs for another 42 hours. A nurse comes to my home on day three to disconnect the pump. Of each 14-day cycle, I lose at least eight days to nausea, clinical fatigue, chemo brain, neuropathy in my hands and feet, sores in my mouth etc. With the remaining six days of comparative health, I have some time to work through my bucket list. These physical aspects are cumulative. I built myself a “quality-of–life” spreadsheet that allows me to score simple everyday physical and emotional goals – such as if I’m up to having a shower or having visitors. Or how positively I’m thinking. There are over 40 indicators that I score every day. For most of the first week my quality of life score is below 25%. As time moves on, I notice that I am slower, the number of symptoms is increasing, and the rate of recovery is diminishing. So I don’t buy the “fall off the edge” scenario that you suggest. In fact this raises an important question. At what point is a terminal cancer patient “dying”? My view is that it really starts the moment the doctors tell you that you are terminal. Sure you have good and bad days, weeks or months – but in my experience, and talking to others in a similar position, it really is an extended period of dying. Not a set of phases of which the last is dying. I fight hard every day for some more quality time to do the things that are important to me. I go to the gym three times a week. I manage my diet. I’m sensible about how I use my energy reserves. I try to keep my mind active. In short, I’m doing everything I can to enhance the time I have left. BUT there is never a single day when I don’t reflect on the fact that I’m dying. Emotional aspects Yes, it is great that I’ve had time to communicate with all my family, friends, acquaintances and work colleagues. At the same time, this process comes with a curse. It probably took me eight weeks to “be at peace” with my situation. I am now pretty calm and serene about it. I simply want to navigate through with the minimum of stress. Yet those same groups of people put a huge strain on me daily. They don’t want to accept that I’m going to die. They want me to be the miracle that somehow gets round it. They want to use Google to find alternative treatments that will “cure” me. So I spend a HUGE amount of my limited time left dealing with THEIR baggage. Now, you would have thought that, as the central character in this tragedy, they would grant me some preferential status rather than expecting me to counsel them. But you know what – they don’t. I have discussed this problem with many other cancer patients and they find themselves in the same position – especially with their families. I have been with my wife for 31 years. I’m 59 and she is 52. We are lucky that we are as in love as we’ve ever been. Unless you were present in our home 24/7 you could have no possible idea what the emotional stress is like for us. She has to tend me daily, even though, to all intents and purposes, I’m not dying from cancer at the moment. But I am dying. And the chemotherapy is a big contributory factor at this stage. We can never get the subject out of our lives; there is always some physical or psychological factor that aggravates our emotional state. We laugh, we cry, we despair. She tries to keep the constant barrage of well-wishers “in their box”. But when it comes to the family, that is a tough call. I have an 85-year-old mother who doesn’t know how to come to terms with the fact that she’ll have to bury her son. At the same time she sees herself as the victim in this tragedy, not me. So hopefully, Richard, when you’ve reviewed some of the evidence I’ve put forward, and investigated its validity across a wider sample of terminal cancer patients, you’ll realise that cancer isn’t actually “the best way to die”. And in taking these thoughts on board I’d like you to also know that I am by no means at the worst end of the spectrum. I’m still doing relatively well compared to many cancer patients whose ordeals greatly outweigh my current problems. More research is needed Now, to conclude this response, I will briefly touch on the outrageous idea that we should “stop wasting billions trying to cure cancer”. I noted in your follow up article that you tried to “reframe” that. But since I have not seen any of the national media pick up on this, I must respond directly to the words you first wrote. I’m privileged to have many friends in the medical world who specialise in cancer. I have also had a very long and productive association with Cancer Research UK across a range of varied – and in my view significant – activities. Their research activities have completely changed the survivorship of some of the most common cancers. It wasn’t long ago that most breast cancer patients died within 10 years. Now more than three quarters survive 10 years. Those women used to suffer a long, traumatic, futile death. Now they can have hope that they’ll survive it and return to lead full and active lives. Try telling their families that we should stop doing the research. We must not stop till we can save them all! In contrast just one in every hundred pancreatic cancer patients survives for 10 years. And sadly little has changed that over the recent decades. Sure, it’s too late for me, but you know what Richard? It gladdens my heart to know that Cancer Research UK is looking deeply and holistically into how they can change that for the future. Without their unstinting dedication and ingenuity, supported by the generous pockets of the UK public, we’d have no hope. Until my health completely fails me I will continue to work and support research into lifestyle, prevention, early diagnosis and cure. And so must you. People die of cancer because it gets spotted too late. On diagnosis of both my cancers I was locally advanced stage three. Like so many cancers, there are no symptoms until it is too late. Those involved in spending the money know that they must achieve early diagnosis and also look to lifestyle changes where appropriate. I would commend you to read Cancer Research UK’s Research Strategy. I have seen many wonderful initiatives that will save millions of people, in time, because they are so diligent at figuring out ways to cost-effectively identify those at risk. You’ll know – as I do – that routine mass screening is simply not viable commercially or clinically, no matter how big the pot. But ingenious tests that can identify those who should be sent for investigation are coming thick and fast. I run a patient support group for gastro-oesophageal cancers at Charing Cross Hospital in association with Maggie’s Centres. So I’ve had hundreds of patients through my hands over the last seven years. Despite what the statistics might suggest, a significant proportion of those patients, probably 25-30 per cent, are under 40 years of age. It breaks my heart every time I meet a 20 or 30-year-old with cancer. I felt cheated at 50 and, to a certain extent, feel cheated at 59. But that pales into insignificance compared to watching a 32-year-old single mother die of oesophageal cancer, when the system tells you that we should focus on men over 50 with alarm symptoms. Richard, you really can’t believe in those words you wrote. According to the latest figures, 2.5 million people in the UK are living with a cancer diagnosis. It is absolutely vital that we continue to research the prevention and treatment of this disease. A version of this article first ran on the Cancer Research UK blog. Cancer Research UK’s Information Nurses are available 9am-5pm, Monday to Friday, on Freephone 0808 800 4040. It also has a discussion forum – Cancer Chat – for people affected by cancer, and there’s a section on its website that discusses death and dying. |