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.
J guest February 22, 2015
Larry you are right in every word you say, and a truly brave inspiring person. My mum had an aggressive breast cancer eight years ago, had numerous treatments and is still here today. However my dad wasn’t so lucky, firstly got bowel cancer in 2012 had curative surgery and a colostomy bag fitted for life, this took some adjustment big time physically and mentally. Then early 2013 struggled to swallow at first food then fluids which later turned out to be osophageal cancer which was evil to say the least and also terminal. Me and my step mum dealt with the ever changing dad which was the worst thing ever to witness your own parent going down hill like this. So to agree with Larry again cancer is most definitely not the best way to die in lots of ways from my experience just witnessing it let alone the patient.
Gill February 22, 2015
Thank you so much for this impressive letter. I know what it is like to go through this as my husband passed away in 2013 aged just 53 from bowel cancer. I very much hope you can enjoy your time left with your family doing what you want to do.
Zarqaf Fatima February 22, 2015
Every word of this artical is true and basis on facts , which no one can denia , how ever Saying “cancer is best way to die ” but reality telling us other story , Larry I salute you for your courage and bravery and how well you wrote this artical for those who don’t know and understand the fact of cancer and it’s effect on the person and people around the patient,
DOREEN WILKES February 22, 2015
I totally agree we should continue research, I had Breast Cancer 11yrs ago and luckily still clear.
christine fraser February 21, 2015
What a stupid man that doctor is he has obviously not had a close relative or very good friend waiting to die in the most horrific way knowing the sentence that awaits. WE NEED MORE RESEARCH INTO CANCER TREATMENT AND CURE NOT LESS
Julie February 21, 2015
You are an absolutely amazing person with a valid and in my view correct opinion. I watched my mother fight her cancer tooth and nail. The shock when she could fight no more is still in my memory. The Doctor in my opinion has got this completely wrong. A sudden death is a shock for the family but if I had a choice I certainly would be happier going that way and certainly not from cancer. My affairs would be easy to sort and insurance covers everything anyway.
Michelle croft February 21, 2015
My mother passed away with pancreatic cancer she was 62 so so young, the consultant gave her 6 months to live, she lasted 18 months, and should of never been alive, she went through shear he’ll, at the end, she was in agony, and anybody who says cancer is the best way to die, should be ashamed of what they have said!!!!
Kerry Brown February 21, 2015
Larry you are a very brave courageous man, I lost my dad to bowl cancer 4 year’s in January. And had to watch has he suffered the pain and the anguise the family went through. We supported my dad the best way we could with the dignity he deserved, that this evil cancer was robbing from him. I wish you and your family well. And hope that you get to spend has much time as possible an do the things you want to do with your family an friends . God bless you.
tracy falconer February 21, 2015
I don’t think it’s the best way my mum was termanil cancer conditions were not good it all has 2 change I struggle now each day 2 live with what I had 2 deal with even tho she was my wonderful mum same with my dad a couple months apart in 2012 dad didn’t get his own room and wee had 2 fight 2 have mum in her own room both worked run there own business payed there tax it’s all wrong I believe it’s government is left me just 2 cope each day its very seen how we’re treated in hospitals and it’s not the staff they are just doing what they have been told two do
Phil G. February 21, 2015
Larry you are an amazing person.
My thoughts go out to you, and your family. I, like you and so many others hope that some day this dreadful illness will be obliterated.
Try to remain strong Larry.
Take care, and good luck.
Maria Lyszyk February 21, 2015
So sorry my love. Lost my husband to cancer after a liver transplant for Primary Schlerosing Cholangitis. You are right, cancer is not an easy death as you have foreknowledge of your own demise which is so hard to deal with. Yes, you can put your affairs in order, but again that doesn’t take long. It did give us just enough time to say goodbye, but we still wanted more. The anger if a life stopped is what I will always remember. You are brave to share your real thoughts with the world, bravo! My thoughts and prayers to you x
kath February 21, 2015
I take my hat off to you sir.
So well written
Unbelievable for Richard Smith to be so insensitive and i humane to make such a statement.
He clearly does not comprehend the impact of a terminal illness beyond the science-shockingly wrong
Donald.C.Rogers, February 21, 2015
Larry , there is not a lot I can say except my thoughts are with you & with Gods help &science we will conquer it one day, I have dreaded being told I have cancer because my wife went though what your wife is going through over 30 Years ago with the same thing with her first husband. good luck old son ,
Kathy February 21, 2015
Very brave man Larry, my heart goes out to you and your family and everyone else who faces seeing a loved one go through the end of life trauma that cancer brings to those inflicted and their families! I myself can identify with all what you have said but my mum had mental problems brought on by her type of cancer, which meant she wouldn’t and couldn’t understand she was dying! Mostly all I could ever think was “quality of life? More like quantity”! People everywhere should help fund the vital work that cancer research carry out, as you never know the moment it will affect you. Very thought provoking article Larry, God Bless.
Jenny February 21, 2015
Well done to you Larry for taking the time to put into words the true pain and suffering of people with cancer. My Father and my husband both died of lung cancer an awful and up dignified death I wouldn’t wish on anyone, My Mother has had breast cancer twice and beat it with the aid on tamoxifen and radio therapy and is now 92. I am so glad they are looking into alternatives to chemotherapy it is an absolutely horrible thing to endure and does your body more harm than good, in my opinion. However if it’s all that’s out there of course people have to try it. I wish they would do more research into the effects of cannabis oil on cancer, it has been known to cure even advanced cancers in certain people, and when it might not work for everyone, it’s worth a try. Big hug to you Larry, you are a special person xxx
lin February 21, 2015
Thank you for putting this articulate article out there, most people find it hard to discuss dying and yet it is going to happen to all of us! We could all benefit from reading more on how to support people within our families and circle of friends so we are exactly that ‘support’ not a burden. Thanks again.
Pat Small February 21, 2015
Larry your a star, your letter puts things into perspective, you are going through it so you are talking from the heart not from some diagnosis someone has come to. God be with you & help you through this sad time, and may he give you inner peace. My 18 year old nephew has cancer behind his eye nose & lymph glands & the journey has been horrendous, his treatment has now been finished, but we wait with bated breath to hear the words in 3 months they have got it. As of this moment he has lost his eye sight in one eye but he is here. We feel for anyone who is going through what you have described God Bless Pat xxxxx
mich February 21, 2015
Cancer is the worst way, my dad suffered for years and my mum suffered too watching him suffer, and I know what it did to me and others close. To be told you have an incurable cancer is confusing because you don’t know if you’ve got weeks or years. Christmases should be more fpecial but instead they are tainted with sadness. I’d rather die quickly and suddenly. The treatments for cancer have horrible side effects and the quality of life is limited
Babs Morokutti February 21, 2015
This gentleman has put into words that I’m sure all patients feel the same. Well said Larry,
Sue February 21, 2015
Good article. I lived with someone dying from melanoma. It’s awful. Every little improvement has you believing that your loved one is going to bet it even though you know it’s not going to happen. Such an awful roller coaster. Sorry I wasn’t able to read your article before my husband died, I’m sure it would have helped me understand more of what he was going through.
Ashley Try February 20, 2015
My God…what a lovely human being xxxx <3
carol Iseton February 20, 2015
I admire you so much for putting forward such a true view of what is such a emotive issue , not just for the sufferer but the loved ones watching this horrible disease take there loved ones from them. Thank you .
evelyn barker February 20, 2015
Thank you for telling the truth. The constant worry and the well meaning friends and family really hit a chord here.
sarah February 20, 2015
So moving x
Sue February 20, 2015
I HATE Cancer! I watched my Dad and my Son in Law suffer long painful days before they past away. My Dad had a secondary cancer, a brain tumour which completely took him away from us. My Son in Law lived his last year bravely making the most of his last painful days hoping for a cure while he spent time with his family. He spent 3 moths in isolation waiting for a a bone marrow donor. It wasn’t to be. Cancer is the cruel disease.