Sadly my father, the journalist Kingsley Squire, 78, was recently diagnosed with terminal pancreatic cancer. Here he talks about his experience and his treatment in the hope it will help others going through similar…
UPDATE: IN November 2015 Kingsley passed away peacefully at home.
BY KINGSLEY SQUIRE
Latest update:
Well, I’m still here, very much alive, getting on with my life and enjoying every day though it wasn’t like that when I was on chemotherapy. With chemo I had a six to nine month survival prognosis which extended to a year with chemo. Really, I wrote, it was a no brainer. Much as my wife, Monica and family did not want to see me suffer the debilitating side effects, I went for chemo because even another day, let alone a month, would be so precious to us all.
So began a six-month course of Gemcitabine which is generally well tolerated. I was determined to seize every day on chemo because, said my oncologist, it improves quality of life for patients in my situation and, what’s more, could add a short number of months to my overall survival. But you can’t seize the day if you are in bed feeling exhausted for much of the time with no appetite, no energy to do anything, watch television or read the papers which for a journalist was a sacrifice.
I know everyone responds differently to treatment for PC. Chemo certainly works for some. But it made me so ill that after four effusions I came off it to enjoy as best I can the time I have left with Monica, family and friends who are such a comfort and support.
The decision poses a real dilemma between quality and quantity. Do you tolerate all that chemo can throw at you for an extended lifespan or a shorter prognosis off it with more good days than bad. Four months, six months, another year? I really don’t want to know because, either way, with terminal PC it doesn’t make that much difference to survival time. It would certainly not register with the Daily Mail’s GP, Dr Martin Scurr, who confessed in a full page article in 2012 that should he discover he had advanced life-threatening cancer he would refuse treatment.
“Like most doctors I understand that much of the care we offer patients who have serious life-threatening illnesses is ultimately futile. Worse, it can involve months of gruelling treatments that might possibly extend the length of one’s life but do nothing for its quality,” he wrote. “But while we give that care to patients the vast majority of doctors I know would not want it for themselves. Yet this fact has long been a taboo in the medical world.”
There was a huge response to his article. Not all agreed with him though many did including other health professionals. There were instances, too, where families wished loved ones had forsaken chemo because, in their opinion, it had hastened death.
Dr Scurr also dealt specifically with PC which, as an example, is often diagnosed late with the average time between diagnosis and death being less than six months.
“If I had the disease I would not attempt any of the treatments for it such as chemotherapy because it can be gruelling and misery making with a success rate that is relatively low,” he wrote. “I would rather have pain killing palliative care which can do great things in helping to make you feel comfortable while you are dying.”
To read that is very gratifying to me, for I am now in the care of Sidmouth Hospiscare whose nurses, all experts in palliative medicine, administer my daily treatment regime of stomach protector, steroid, blood pressure and slow release morphine tablets. I know the nurses will be with me every step of the way until I pass from this world into the next. Not that I’m thinking of going anywhere any time soon because, right now, I’m very much in the land of living!
Yes, I’m so much better off chemo. Relatively pain free, I’ve got my appetite back. And what an appetite! Diets are out. Steak and kidney, Indian curry, pasta, sausages and mash, roast chicken and sundry cold meats are back in at the top of the Kingsley menu.
I still have much to do around the house and hopefully time to do it. I still have to make absolutely sure that Monica, bless her, knows how to switch on that confounded boiler, not to mention the programme timer. She’s not quite got the hang of it yet. But, as always, she’s getting there.
- Kingsley, his friends and family have so far raised over £3000 for Pancreatic Cancer Action.
6th August 2015
Back in May I was swimming four and sometimes five early mornings a week in the Sidmouth pool.
Now, I am one of the 8600 new patients diagnosed with pancreatic cancer every year. Mine is inoperable and therefore terminal. Without treatment I may have a six to nine months overall survival which could extend to over a year with chemotherapy. Really, it is a no brainer. Much as my wife, Monica, and family, do not want to see me suffer the side effects, I have gone for chemo because even another month will be so precious.
So why am I telling my story? Quite simply, to support the nationwide charity, Pancreatic Cancer Action, in their mission to save lives through early diagnosis by raising public awareness of the symptoms of a cancer which the late Hollywood ‘Dirty Dancing’ star, Patrick Swayze, who died from it in 2009, called the most lethal of all.
What alerted me was a call from my GP saying a blood test had shown a raised level of the pancreatic enzyme amylase. The very mention of the word had me calling up the symptoms of PC and two matched mine exactly, a back pain that was worse lying down and fatigue that was making me feel so heavy and unsteady on my legs.
So when, weeks later, a CT scan and a biopsy revealed terminal PC the diagnosis, devastating as it was, did not come as a shock because in my heart I had suspected it all along.
I had my first 30-minute chemo effusion last week dripped through a cannula in the back my hand in Cherrybrook, the treatment unit at the Royal Devon and Exeter Hospital Oncology Centre which is recognised as one of the best in the UK for cancer treatment and care.
I am being given Gemcitabine which is generally well tolerated and is given primarily because it improves quality of life for patients in my situation and can, indeed, add a short number of months to my overall survival.
Only time will tell. But since my diagnosis I have learned that pancreatic cancer, unlike prostrate, bowel and breast cancer, is not on the public radar. Many have never heard of it, let alone know any of the symptoms. Yet it has the lowest survival rate of any cancer with four patients in every five dying within a year because it is discovered too late for life saving surgery.
That is why Pancreatic Cancer Action is on a mission to save lives through earlier diagnosis by raising public awareness of the symptoms through the media and by promoting initiatives such as Pancreatic Cancer Awareness Month in November.
As of now, I’m feeling positive, ready to face whatever this cruel disease throws at me. It will not be an easy journey. You realise that when all the possible side effects of chemo are explained.
Yet there is a plus side to it all. That is the time I have to make sure everything is in order here at home and that Monica, bless her, knows how to pay the water bill and switch on the boiler! We have been married 53 years and we are in this together until death do us part. I can’t tell you what a comfort it is to reach out at night and hold her hand. You realise, too, amid the tears, how much loved you are by your children and grandchildren.
Yes, these are precious, even happy, days and together we are learning to take each one as a gift.
I have been greatly uplifted by the stories of hope my daughter, Alison, has been sending me, one in particular of a church pastor diagnosed with an aggressive stage four PC and given only six months to live. After six months of chemo treatment, and a prayer network set up by his wife, there was no sign of cancer. His doctor called it a miracle.
“You can’t give up,” he writes. “Stay strong and lean on those who love you. That is what I did. Remember, it ain’t over ’till it’s over. Keep the faith and be encouraged.”
Maybe, just maybe, there’s a miracle out there waiting for me. So, dear reader, watch this space!
- Kingsley Squire is a contributor for the Sidmouth Herald in Devon and he formerly worked on the newsdesks at the Daily Star and Daily Express.
Find out more: Kingsley is now an official blogger for Pancreatic Cancer Charity and writes on their website.
Want to raise awareness for a charity? Find out more here about getting a story for charity published.
