Larry is 59 and has advanced pancreatic cancer. Here, he responds to a recent article claiming that cancer is ‘the best way to die’.
As an oesophageal cancer survivor of 9 years – and now a terminal pancreatic cancer patient – I was deeply offended by Dr Richard Smith’s recent article in the BMJ in which he stated that “cancer is the best way to die” and concluding with “let’s stop wasting billions trying to cure cancer”.
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.
However, another recent in-depth media debate – this time around the barbaric massacre at the Charlie Hebdo offices in Paris – reminded me that the right to offend is a fundamental principle of freedom of speech!
That stimulated a rethink, and I concluded that I should not focus on the offence, but engage in the debate and test the hypotheses that Dr. Richard Smith’s article put forward.
So, is cancer the best way to die? Let’s look a little deeper into this.
Richard suggests two reasons for this hypothesis.
- A slower death gives you time to put your affairs in order and resolve your goodbyes.
- A cancer death is only unpleasant for a few weeks at the end.
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 that actually supports his hypothesis.
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 around 2 weeks, which included legal, financial and communications with family and friends. I had certainly fully completed it within 4 weeks.
So let’s move on to the second point: a terminal cancer death is ‘only unpleasant in the last few weeks’.
Sorry Richard, you couldn’t be more wrong if you tried.
I will walk you through three aspects that you need to study much more closely before you make these types of blanket assertions.
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:
- I have no idea if I’ll live two months or two years. HUGE problem. How on earth am I to plan what I do, or how I fund it? That drives me mad, and is a constant inner battle. Remember how actress Linda Bellingham wanted one more Christmas? She took the conscious decision to halt her chemo last November, so that she could enjoy it and then die shortly after. Great plan! However a month after she made that plan, in September, she died anyway.
- The progress of my chemotherapy – which is my only weapon for ’buying time‘ – is a constant worry. How am I doing? Why do the markers shoot up so fast and come down so slowly?
- How soon will the cancer get round the chemo, which it certainly will?
- What will it be like when my liver starts shutting down?
- How much pain will I be in?
- How will my dignity be maintained? I had my first bowel accident on Saturday night.
- At times I can actually find myself feeling guilt! If I manage to survive a number of years, how much pain and stress will that cause those around me? Crazy but true.
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 3 to disconnect the pump.
Of each 14 day cycle, I lose at least 8 days to nausea, clinical fatigue, chemo brain, neuropathy in my hands and feet, sores in my mouth etc.
With the remaining 6 days, 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 – like 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 3 times a week. I manage my diet. I’m sensible about how I use my energy reserves. I try and 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.
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.
And 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 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’m 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 one 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.
Let me tell you what I’ve learnt:
- 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 1 in every hundred pancreatic cancer patients survive 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 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. In my own experience I was locally advanced stage 3 for both my cancers. Like so many cancers, there are no symptoms until it 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 in these efforts 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 nor 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 7 years. Despite what the statistics might suggest, a significant proportion of those patients, probably 25-30 per cent, are young. By that I mean under-40. 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 and beyond a cancer diagnosis. It is absolutely vital that we continue to research the prevention and treatment of the disease.
In conclusion, the one thing we would probably agree on, if you were brave enough to meet me, is that as a society we should get our s**t together on assisted dying.
I still don’t get why we are able to do it for animals, but refuse it for humans.
But as I face the inevitable outcome of my terminal diagnosis, the one thing I REALLY want, above all else, is the opportunity to say “I’ve had enough, it’s time to put me to sleep”.
- Cancer Research UK’s Information Nurses are available 9am-5pm, Monday to Friday, on Freephone 0808 800 4040. We also have a discussion forum – Cancer Chat – for people affected by cancer, and there’s a section on our website that discusses death and dying.
Lav June 25, 2015
Cancer is the worst thing that can happen. Only those suffering or witnessing a loved one going through it would know that. Whatever you assume and imagine, it’s way harder and painful in real life. Really sorry for the ignorant people around here and hope they never get the big reality check.
johnsm56 June 18, 2015
People die from cancer because the time has come for them to die. It’s not something bad or unfair. Why the hell do you think of cancer as some movie villain? It’s stupid
Amber May 28, 2015
Thank you Larry for your article. You’ve really helped me grasp what my father is going through and how I can better support him. I really appreciate this. Thank you.
alan May 10, 2015
To think that an alleged “medical professional ” came up with this abhorrent statement based on little or no evidence shows total and utter disdain for the sufferers of this horrific disease that apparently 1/3,of us will contract in our lifetime. I can only presume he did this to get more exposure for all the wrong reasons. For personal reasons I won’t discuss on the Internet, cancer has affected my family and I laud the efforts of Cancer Research and similar organisations who are striving to rid us of this evil and also salute organisations such as Marie Curie and MacMillan wgHo do sterling work in supporting patients and families through the rigours of this horrific illness. No one superlative can adequately illustrate how much misery this disease causes.
Helen Fenton April 13, 2015
Thank youn.larry for writing this true account of living with the time bomb..I too had
Oesophageal Cancer diagnosed in 2005 and had post operative chemo followed by the np massive operation and practically sawn in half..apart from weird plumbing and general fatigue ?I slowly recovered only to find the cancer back about 4 years ago….outside the oesophagus squeezing my windpipe and therefore affecting the nerves serving my vocal chords …this Cancer is in operable and terminal I had months of chemo and radio therapy which did not shrink it but it has not grown or spread. Just sits there like a time bomb!
If it grows..what can they do??
Thank you for being frank, it is diffucult to speak about the bastard Cancer is because bods get embarrased..I like to speak about it as it is, and don’t get the opportunity too often
Wishing you peace, and humour and more blogging
Jennifer April 4, 2015
Hello Larry, I am a 29yr old survivor, but unfortunately experienced witnessing both of my parents truly suffer through terminal cancer at a young age (a few years apart). I stumbled upon your article but I was incredibly moved by it, and found it to be very insightful. I am very fortunate to be here today, and I don’t take a single moment for granted. Thank you for composing this article. It was severely ignorant for someone to state that cancer was the best way to die. That is disgraceful! You have shed much light on what it is like from your point of view. In my experience I found that others sometimes thought of themselves as the victims. While I’m sure it is not intentional, it becomes more difficult to navigate an already challenging situation. Thank you again.
Maggy March 28, 2015
Larry, I found this a very useful article, thank you. Best of all wishes to you and your family. I’m supporting a friend who is dying, slowly, of maxillo-facial cancer and I haven’t the faintest clue on ‘what I should do / say’. Never read Richard Smith’s article but he sounds like a dick.
Jo March 2, 2015
Larry I totally agree with all you’ve written. My husband died at 59 from the same cancer after a hard battle. You know the hardest thing to do when you’ve been told your going to die, is live. You can’t plan anything however somehow you muddle through. The way we got through our year from hell was to try and make as many good memories as we could no matter how small we had to as we had a daughter of 2and a half I took lots of photos and videos and my wonderful husband lives on I wish you all the very best don’t listen to ignorant people who should know better surround yourself with your loved ones
sue nicholls February 24, 2015
Cancer is certainly not the best way to die,my beloved husband died in pain just 8monthsafter diagnosis I endorse all that you are saying and my thoughts and best wishes are with you I am astounded that a so called doctor could write such an unfeeling
Jillywhizz February 24, 2015
Can’t agree more! After 18 years I am one of those breast cancer survivors and I thank The Lord everyday for all those who went before me for their courage in trying new medicines and treatments and all those doctors, nurses and scientists who work tirelessly in this field. I was only 40 with a 3 cm grade 3 tumour. I had three teenage daughters, loving parents, family and friends and it was the worst thing to put them all through. By some miracle the technology had been discovered that saved my life. Please keep up the good work, keep researching, trialling, and discovering new ways to beat this dreadful disease. No-one is untouched by cancer, it haunts us all.
Lynda Wilson February 23, 2015
Can only endorse every single word of your article. Pray it will be published in one of the major dailies. Hope you find the strength to continue your fight, you certainly have very many well wishers thinking of you. You are a wonderful person.
ian edge February 23, 2015
Hi i am a cancer patient with advanced cancer of the prostate and a secondary cancer of the bones I have read your message with an open mind and all the points In your reply are incredibly accurate I have personally found that being diagnosed as terminal was very difficult to deal with my fears are not now but at the end and I should have the right to say enough is enough like your pet I just want to sleep.thank you for sharing this post
rosam February 22, 2015
Can’t think of anything to say because you have said it all ! You truly are saying what those with cancer would say themselves ! Thank you x just one thing though Dr Richard smith until you have walked a mile in someones shoes just don’t say anything !!!!!!
Paul Brooke February 22, 2015
It is a fantastic response to a crass statement from a Dr of all people. I would only add that there appears to be some Drs on the net who have ‘found’ natural products that help and yes seem to cure at least some cancers. So, why doesn’t Big Pharma stop being overly interested in making millions from the products they produce and carry out more emphasis on clinical trials using the aforementioned ‘ natural products’ or are they doing so without us knowing it?
Cathy Smith February 22, 2015
Very emotional article.
Amy Carter February 22, 2015
Fantastic article, so honest and brave- thank you. May you have comfort and peace
Angela Jones February 22, 2015
This honest insightful and moving account , has put into words what many of us affected by cancer would wish to be able to say, the reaction from family and friends too is the hardest of all, and yes well meaning and out of love true, still the fallout is draining and frustratingly time consuming. My heart and best wishes go out to dear Larry, I wish you peace and dignity. Xx
Mr Alexander Paterson February 22, 2015
I’ve just been diagnosed ( 4 weeks before Christmas ) with terminal cancer myself and agree with you “cancer a better way to die ” lololololol no way is frekin good !
Glenys Evans February 22, 2015
Thank you & love to you I learnt from reading your words .
claire February 22, 2015
Wow. That is powerful and honest.
I wish this man a stress-free remainder of his days and thankmhim for taking the time to write it. I actually agreed with everything he said and always thought along those lines too.
Much love to you my friend; and I hope you have lots more smiley days to come :-) xx
Ian Murray February 22, 2015
A fantastic article and response to a educated persons naivety and lack of consideration to suffers and their families . May God give you strength when your hour arrives and walk with your family in their hour .
Helen Muddyman February 22, 2015
An emotive and articulate response. This piece of writing has beautifully tackled the ignorant and hurtful comments made by Dr Richard Smith who has obviously never had experience first hand of the impact of cancer. Larry you are an inspiring and courageous man. I wish you peace and love as your journey approaches the end, and as someone who has watched her 30 year old husband survive cancer thank you for raising the point that cancer knows no age limit and research is very much needed.
rose galbraith February 22, 2015
How generous of you to give so much of your time and energy to write this amazing article. Of course we must keep fighting for treatments and ultimately a cure, or preventative measures, screenin etc. having lost a close friend at 51 to cancer I agree with all you have said so succinctly… Wishing you and your family the best, enjoy your life x
Jane Dixon February 22, 2015
What a courageous piece of writing. Both my parents died of cancer and I firmly believe we must keep on fighting!
jude broad February 22, 2015
I lost my Dad to oesophageal cancer when he was only 52 years old. Doctors asked him for permission to try some procedures regarding his condition. Thanks to his bravery his treatment and feedback has assisted in the process of advancing a cure so think on….