John Spain: 'A free bowel screening saved my life... if you get the letter in the post, don't be an eejit like I nearly was'
When John Spain received a letter from the National Bowel Screening Programme in his door, he dismissed it. One day, with some spare time on his hands, he decided to send the sample off. The results came back - he had cancer ...
Published 10/08/2015 | 02:30
'You have cancer," the doctor in the Mater said. "You have cancer. You have cancer." In fact he only said it once, but the world had suddenly gone silent and his words echoed and re-echoed in my head. Nothing prepares you for that dreadful moment. A trapdoor had opened beneath me and I could feel myself falling through it. I seemed to go deaf for a few seconds so even though he was still talking, I wasn't hearing anything.
That was a few months ago and although I did not realise it at the time, the National BowelScreen Programme was probably saving my life.
But I need to begin this story at the beginning. Shortly before Christmas a letter arrived at home with an information leaflet telling me about the BowelScreen Programme and inviting me to take part. This was not something I had requested. I'm in my late 60s and men and women in that age bracket now get the letter automatically under this new HSE initiative.
I glanced through the leaflet quickly and then I did what most men do: I decided to deal with it later.
Within a few days it was buried in a pile of discarded post and I had forgotten all about it. I had too much on - the weeks before Christmas are a busy time for books and I was Literary Editor of the Irish Independent. I had more pressing things to think about.
Besides, although I'm in my late 60s, I was as fit as a fiddle, I was not overweight, I was eating a healthy diet and I was jogging everyday. I felt great and everyone said I looked younger than my years. Cancer? That was something that happened to other people.
A few weeks later, just after Christmas, I got a reminder letter.
Probably because I then had time on my hands and was curious, I read the leaflet again about how you could do the simple home test and I rang the number given.
When the package arrived it contained a small plastic tube, a lollipop stick, instructions on what to do, and a postage prepaid return pack. Given that you may be reading this over breakfast, we don't need to go into too much detail. It's not complicated: you use the stick to scrape a stool in the toilet, put the stick in the little plastic bottle, seal it, pop it in the return package and post it back.
The next day it was mission accomplished. Nothing to worry about, I thought, feeling virtuous.
The leaflet had explained that what the test looks for is traces of blood invisible to the naked eye, which can be an indicator of cancer. It reassuringly added that less than 5pc of people who do the test are "positive." There was nothing to worry about, I told myself again.
But a couple of weeks later, I got a phone call. A woman told me my test was positive and I needed to have a colonoscopy (a flexible tube with a camera at the end is passed through the rectum so the bowel can be examined - the colonoscope also allows small instruments to be used to remove small growths and take samples for analysis).
Although now slightly nervous, I still told myself everything would be alright. After all, the information leaflet had said that even if you are positive, there is usually another explanation, like haemorrhoids. Less than 5pc of the 5pc who are positive and are called in for a colonoscopy turn out to have a cancer problem. I thought, 5pc of 5pc? How could I be that unlucky?
Since I live on the north side of Dublin, the hospital nominated for my colonoscopy was the Mater. On the day I was semi-sedated for the procedure which I had been told would take about 20 minutes.
Afterwards, while I had my tea and toast in the recovery area, the gastroenterologist told me that the colonoscopy had taken over an hour and that he had found and removed several small polyps from the lining of my bowel. (Polyps are growths that look a bit like warts or boils and usually are benign).
He said that one polyp was slightly bigger, a bit over 2cms wide, and he was sending a sample for analysis.
A week later, I got another call asking me to come back in to see him to discuss the results. And that's when I learned I had cancer.
Very gently, he said that the analysis had shown there were cancerous cells in the larger polyp. In my innocence, I still clung to hope and when I found my voice again I argued back.
"But when you did the colonoscopy you removed the polyps, so they're gone," I said. "That means the cancerous cells are gone too."
"No," he said, gently but firmly, "you have cancer." The root of the cancerous polyp was still embedded in my bowel wall and the cancer cells could also have spread to nearby areas. I would need a bowel section to remove that part of the bowel and he would refer me to a consultant in the Mater who would do the operation.
The good news was that it was Stage 1 cancer, he said. It had been caught early and the likelihood of a full recovery was very high.
He immediately sent me downstairs for a CAT scan to see if there were any growths in the area surrounding the bowel. The scan was clear so it looked as though the problem was only in the bowel itself.
Leaving the hospital that day I was in shock. We always think these things happen to someone else. When it's you, it's devastating.
A week later I met the consultant, a colorectal surgeon who looked young enough to be my son, which was mildly disconcerting. But he said he had done nearly 300 of these operations.
Looking at the pictures from the colonoscopy he also said that it was very likely that the surgery would fix me and I would not need any chemotherapy or radiotherapy afterwards.
He said I was lucky it had been caught at Stage 1. That's why the new National BowelScreen Programme is so important, he said, but unfortunately only about 40pc of people who get the letter respond to it. I didn't have the heart to tell him I had ignored it until I got the reminder.
My bowel section was done in the Mater and I was there for a week afterwards recovering. The operation removed a 40cm section of bowel (about 15 inches) - this seems astonishing, but I'm told we have lots of it - and my bowel was joined up again.
It was uncomfortable rather than painful when I woke up after the operation. I had a tube called a catheter in me to remove urine, which made sleeping difficult. I also had a morphine pump which I could squeeze to control pain.
"But I don't have any pain and I don't take heavy drugs," I told the nurse. "That's the morphine working," she said, clearly thinking she was dealing with a half wit. "Press it as often as you need. It won't let you overdose!"
The bowel has an amazing ability to quickly restore itself and within three days I was eating normally and using the toilet again, albeit with some difficulty. The catheter had also been removed.
Towards the end of the week, after getting more lab results, my consultant confirmed I would not need chemo or radiotherapy. I would be going home in two days.
That would be that for most Stage 1 bowel cancer patients. But in my case, there was another issue. The consultant said that during the operation he had noticed I had a slight thickening of the bladder wall and this needed to be examined.
He referred me on to another consultant, a urological surgeon, who also was young enough to be my son (but I was getting used to that).
I rested at home for a couple of weeks to get over the bowel operation and then went back to hospital for a bladder scope (similar to a colonoscopy but from the front).
This revealed two small polyps in the bladder, one of which looked problematic. Further analysis showed that it had Stage 1 cancer cells and so I needed a bladder section operation to remove the surrounding bladder area.
This was done, also in the Mater, a couple of weeks later. There were even more tubes in me when I woke up and again it was uncomfortable.
But the good news was that once more I was told I would not need any chemo or radiotherapy and a week after the operation I was home again.
I still had a catheter in through my stomach and a stent between my bladder and kidney but these were removed two weeks later in day visits. And that was it. After two separate weeks in hospital and five visits for tests or day procedures, I was finished.
When I got home that day I went for a slow walk on the beach near where I live in Howth. It was raining but I didn't care. The air never smelled sweeter. The world never looked more beautiful.
After a difficult two months (this all happened in March and April) I was through it. There are regular follow-up checks to be done, of course, but as far as both consultants are concerned I am cured. I'm one of the lucky ones.
Being a journalist I am conscious that the HSE gets a lot of stick. But here is one programme they are doing - all free even if you don't have a medical card - that deserves the highest praise.
So as a journalist, in fairness, I felt the least I could do was tell my story.
Remember I had no visible signs that anything was wrong.
Were it not for the National BowelScreen Programme I would have remained undetected, perhaps for years, until I began to show visible signs of blood in the toilet or developed tumours.
By then I might have been Stage 3, or even Stage 4, when there is a significantly reduced chance of survival.
There are no guarantees with cancer, of course. But it looks like I am clear of it. I think it's fair to say that the National BowelScreen Programme probably saved my life.
If you are in your 60s and you get the letter in the post, don't be an eejit like I nearly was.
Don't be one of the almost 60pc of people who don't respond. It could save your life too.
How free screening is saving lives
The National BowelScreen Programme began screening people in May last year. It has the potential to be one of the most effective interventions in the Irish healthcare system.
Bowel cancer is both the second most common newly diagnosed cancer and cause of cancer death (2,500 new cases approx reported each year and 1,000 related deaths approx).
Many of these deaths will be avoided with this new Programme through early detection followed by appropriate treatment.
The first round of screening will be completed at the end of 2015 - involving men and women aged 60 to 69.
By then BowelScreen will have invited 500,000 people in that age bracket to take part.
The programme will eventually be extended to men and women aged 50 to 74.
Health & Living