TALKING ABOUT DEATH AND DYING – We end this series today with an account of one man’s experience of cancer.
Bowel Cancer? Me? How could that be? I’ve been so fit throughout my life, eaten porridge, been as regular as a clock. My diet was always well balanced. There has been no history of cancer in the family. Cancer? Me?
Bleeding led to a CT scan, and, after that, there was no doubt about it. I was told by the surgeon that bowel surgery was very successful and so about eight years ago, I had the first operation. But this turned into eight, each worse than the previous one. And, I’ve ended up with a bag and terminal cancer.
A couple of personal details will set the scene. I am now 72. I’m married and have twin sons who are now about 40. I’m a retired academic from Swinburne University, where my last position was as director of the doctorate in business administration program.
Why so many surgeries you ask? Every six months after the first operation, the cancer kept on reappearing at the point where the bowel was joined.
After the fourth one, a spot appeared on my liver. I had surgery for that. While lying on the gurney after the operation and just after coming to consciousness, the surgeon came up and said, “Sorry, there’s nothing we can do for you. You have so many spots on your liver, I didn’t know where to start.”
Bad news indeed, and delivered with such sensitivity!
After being discharged from the hospital I recovered quite quickly but one day I found myself in a panic attack about dying. My wife knew. My sons knew. But who to talk to? I mentioned this to a friend who suggested I ring Dying With Dignity Victoria for a talk. I was so panicked that I did just that.
The secretary, Rowena White answered the phone and I poured out my woes and debilitating fear to her. She listened with astonishing care. She didn’t interrupt my tearful, fearful statement. And she sympathised in clear terms with astonishing understanding. When I ran out of words, she indicated she would get Dr Rodney Syme, chairman of Dying With Dignity Victoria, to call me back.
I didn’t imagine he would. To my surprise he did, twice. I was not a member of the organisation, just one more person in despair. I met with Rodney, who brought me to the inevitable position that dying is part of life, we just don’t know when that’s going to be. He said that preparation was the key. Prepare to be able to make a choice when the going gets tough.
That down-to-earth sensible talk helped me to shift gear into acceptance of the inevitable. I was also having a couple of heart issues so I asked my heart specialist whether any of the heart pills I am taking would enable me to end my life.
Unwilling as he was to say so, he nevertheless told me that one of the pills I was taking would indeed end my life. I would go to sleep and then my heart would stop.
For that bit of information I am eternally grateful. My abject fear of death ended at that point. The pills gave me choice. I was in control of my life and that would save me from palliative care and people who could keep me alive but in a terrible state.
But I also came to understand that it was an offense for anyone to be near me or assist me in any way to depart this world because of debilitating painful illness. How silly is that?
Politicians, praise be not all, but unhappily most by far, are unwilling to develop policy for physician-assisted death in the face of terminal illness, which is causing great suffering. And most of the physicians I have dealt with are unwilling to talk about it. This is also true of my oncologist. He didn’t want to discuss anything about euthanasia.
Good Lord, we don’t let that happen to our cats and dogs but we allow it with humans.
My loving little dog died in my arms a few years back. Yes, I wept, but he was saved from suffering. Politicians, of any persuasion, fearful of the next election, don’t take into account those with terrible, painful, terminal illnesses. And it’s not just cancer, but motor neurone disease, Parkinson’s disease, Alzheimer’s and so on.
It turned out that I started bleeding from the bowel six months after the liver surgery so the cancer was back in the bowel and I changed hospitals and surgeons. I would’ve bled to death had I not had surgery. The cancer was back on the join yet again. So there was nothing for it but to have more surgery. This time they found that there were two spots on my liver but nothing else. The first surgeon had got it very wrong!
I had both bowel surgery and liver surgery at the same time. But pathological examination of the removed bowel showed there was a large cancer which no one knew anything about. It was very flat, very thin, and was not detected by the CT scans. That explained why the cancer kept appearing on the join. It was upstream of the join. Fortunately that ended the bowel cancer.
I then had chemotherapy and painful as it was and still is, that seemed to end my problems. But cancer is a sneaky beast. I had a follow up CT scan after the chemotherapy and there were two spots on my liver.
So in March this year I had yet another resection. It was a difficult operation because of the placement of the spots. Within three weeks of the operation I contracted septicaemia and had invasive thoracic surgery for that. I recovered.
But in June this year I had a follow up CT scan. There were spots on my liver, lungs, and most probably stomach. I was told that there was no more surgery to be had.
That’s the way things are. I don’t know how much longer I will have to live, months, a year.
But I am at peace. I have all that I need to depart this world and when the going gets rough that’s what I will do. My wife and family are fully informed about this. I have told all my friends. Some are shocked, but by far most say I am courageous.
I don’t think about the end, nor do I look forward to it. I have led a most fortunate life. I am surrounded by family and friends. Sometimes we cry together for what is ending. Sometimes we laugh.
After these experiences, I have three pieces of advice. First, get a second opinion. For all my university degrees, I simply believed the first surgeon. I never asked for a second opinion.
The other is for politicians. Don’t be so lily livered! Take a stand against suffering and most particularly those illnesses which are awful and go on and on. Terminal is just that. So let people end their suffering.
And finally, I have advice for the readers of this article, join the cause and support change. Join an organisation such as Dying With Dignity as soon as possible.
This is the eighth and final part of Talking about death and dying. To read the other instalments, click on the links below:
Part One: Deadly censorship games: keeping a tight lid on the euthanasia debate
Part Two: End of the care conveyor belt: death in intensive are units
Part Three: Caring or curing: the importance of being honest
Part Four: Death and despair or peace and contentment: why families need to talk about end-fo-life options
Part Five: Body or soul: why we don’t talk about death and dying
Part Six: Planning your endgame: Advance Care Directives
Part Seven: A challenge to our leaders – why don’t we legalise euthanasia?
Join the conversation
Comments (8)
Val Wicks
Secretary (logged in via email @bigpond.com)
Perhaps the fact humans are so easily corrupted by the lure of riches, or simply to be rid of someone that has become a burden to them is the reason politicians are reluctant to legalise euthanasia?
It's a common statement that we wouldn't let our animals suffer the way we allow humans to suffer but we do a lot of other things to animals that we don't do to humans, such as eating them! We also selectively breed animals (I think Hitler tried that once didn't he?) but I know of no such breeding programs in humans.
I wonder why we seem to focus on the 'kill' principle rather than direct our energies on creating completely effective pain relief. And I think about many people who, in hindsight, have admitted they learned some of life's hardest lessons by caring for a seriously debilitated human. If death is a fate we all must face, then let's use it to help others face their own demise with courage and perhaps seek peace with God.
Colin Jevons
Business Academic (logged in via email @monash.edu)
Thank you, Geoff - it was always interesting to work together and you are still being characteristically thoughtful now. I wish you all the very best for what is to come.
Cris Kerr
Community Health Researcher, Advocate for the value of Patient Testimony (logged in via email @optusnet.com.au)
Dear Geoffrey,
I'm sorry you suffered through unnecessary procedures and pain.
As someone who's spent years collecting patient testimony, your story was familiar... yet no less haunting for its familiarity.
I admire your strength and hope you'll continue to share what you've endured.
We can only hope our health system will one day welcome contributions such as yours, so Australia can adopt a path of 'continual learning' that minimizes adverse health events and outcomes, and maximizes successful outcomes... like those whose case studies are published here:
'Those Who Suffer Much, Know Much' 2010 5th edition (free research publication):
http://www.ldnresearchtrustfiles.co.uk/docs/2010.pdf
Coco Coco
(logged in via email @hotmail.com)
Thank you Geoffrey - so grateful you are willing to share your hard won thoughts with the rest of us. I too have cancer and had to work through the issues of how much I trust not only my treating professionals, but their side kicks, the hospital, imaging technicians and even the cleaners.
I thoroughly research the backgrounds of all those treating me, their qualifications, the university issuing those quals, the standing or ranking of that institution, any research they had done, any complaints…
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Anna Alvsdotter
(logged in via Facebook)
Dear Geoffrey,
Thank you for sharing your story. I feel nothing but utter respect for you and the choices you have made and will make. Thanks again.
Kind regards,
Anna Alvsdotter
Richard Monfries
(logged in via Twitter)
Dear Geoffrey
Couldn't disagree with anything you say.
Cancer is and has been rife in my family, so I fully expect it will be the vehicle that ends my life, one day.
Bizarre though, isn't it, this issue of dignity?
If living a Good Life necessitates dignity for one's self, and in one's dealings with others, why oh why can sometimes our dignity be diminished or compromised before we exhale our last breath?
We live until our last breath, so we shouldn't be required to compromise our right to exist with dignity.
Thank you for your thoughts, reflections & observations.
Peace.
Richard
AnnMarie Brennan
Lecturer of Design Theory (logged in via email @gmail.com)
Your friends are correct, you are very courageous, exemplified in writing about your experience here. It is with admiration that I read your story. It is very enlightening to know how you asked your physician about a medicine that you were taking. Thank you.
You recommend a second opinion, but I am wondering if your case was brought before a tumor panel of specialists? Or simply the decision and examination was conducted by one oncologist?
Hamish M
Mechanical Engineer (logged in via email @gmail.com)
Geoffrey,
Thank you for sharing your story. I hope as death with dignity is talked about more and more. That politicians and community "leaders" will see that the right to choose is the only answer.
Thank you