But I’m only 39!! Cancer. Bowel cancer! How can I possibly have bowel cancer? I’m only 39!
And there I was. Only 39 years of age, living in Singleton NSW and working in the best job I'd ever had in my life, and I'd had plenty. Married with kids. Just bought the first house I had ever owned. I was fairly happy, even though the job brought with it a lot of high pressure self-imposed stress. I loved it and the future was assured.
I admit that I had always been stressed by events in my life though. I had worn out my welcome in my first marriage ten years previously and that was super stressful. I had done my time in the Army before that, and that was stressful too, and a period of high volume alcoholism didn’t help either. But I was over all of that and now, CANCER???
Ever since I got out of the Army I had suffered from duodenal ulcer bleeding. It would happen maybe once a year and maybe 4 or 5 times a year every year from age 24 right up until age 39. That is probably why there was no recognisable warning of anything else being wrong.
Sometime in May 1987 I had a massive ulcer bleed and was rushed by ambulance from Singleton to the Newcastle Hospital. My BP was 50 over 30 so it was bad. They fixed me up, topped up my blood and two weeks later sent me home with the ulcer healed.
For the following two months, I didn’t feel right. I felt an uncomfortable, not quite painful "presence" in my abdomen that wouldn’t go away.
I went to my GP about it and he sent me to the local hospital for a barium enema x-ray. Now that was a truly painful experience. I had that procedure on Tuesday the 6th July 1987.
The following day my GP rang me at work and asked me to, “Come in NOW - leave work immediately and pick up your wife on the way.”
Not a good feeling.
I did as I was asked, and he saw me immediately. He informed us that they had found a "mass" in my bowel and it was large enough to be an immediate danger to life if it moved and blocked the bowel. He had booked me in for immediate surgery. I didn’t know it then, but the surgeon was regarded as the best proctology surgeon in the southern hemisphere.
The next morning, Thursday, an ambulance took me to Newcastle to be admitted. I was so scared I was numb all over. I couldn’t think. All my future had gone. Gone. Numb.
Friday, Saturday and Sunday I had ‘nil by mouth’ and ‘clean-out enemas’ every few hours.
Monday morning, I went into surgery, which lasted 9 hours. I awoke screaming with the pain as the spinal block had not worked, so they put me out again. I woke the next morning surprised, still not able to think and still scared.
My family was at my bedside looking more scared than I felt. Not good, but good to have them there.
The doctor came around a couple of hours later. He was grim but straightforward and very, very honest, which I was grateful for. His words are forever etched on my brain.
"We found two cancers in your bowel. One was very large and was stage 4 cancer (known as stage 5 then). We had you open with everything out of you on the table and found metastasis in your liver.
“I surgically removed everything from your liver. We took all the lymph glands from your abdomen and after testing found cancer in 4 of them too but we didn’t find any more.
“YOU PROBABLY HAVE ABOUT A 5% CHANCE OF LIVING FOR 5 OR 6 MONTHS."
Not a worst-case scenario in my mind, but so close it didn’t make any difference.
The doc then went on to say, "I want those months to be worth living and I want your body healthy enough to be able to fight so I am not going to give you ANY chemotherapy or radiation."
All this sounds pretty bad right? A death sentence right there? NO. NO. NO.
This doctor had just saved my life by doing three very important things.
First: He opened me right up and took everything out – found all the tiny bits of cancer that modern surgeons miss via keyhole surgery and cut them out. Even the liver surgery I am told was fairly radical. He cut it all out and then did something quite radical for that time. He took out ALL of my colon and joined my small intestine to my rectum. WITHOUT FITTING A BAG (stoma).
Second: He did not make me feel sicker by weakening me with Chemotherapy. Still a quite radical move in the medical profession. I have seen many doctors prescribe chemo just as a token or to appease relatives who may demand that the doctor didn’t do enough to save their loved one if he/she didn’t. I am glad he didn’t give it to me. Even though it may have been that he honestly thought I was a goner and wanted me to feel good for the time left to me.
Third: and most importantly, he gave me that 5% chance of living. I chose NOT to hear the 5 or 6 months part. He could have said, "I'm sorry, you have 6 months," but he chose to say I had a (slim) chance. Very important.
Recovery: I am now over 70. Yesterday (as I write this) was the 31st anniversary of that surgery.
I am happier than I have ever been. Healthier than I have ever been and cancer free (touch wood).
The first 6 months were hard. Give up work, go on pension, downsize house, adjust to severe diet of foods that don’t upset my remaining gut and not worst of all, put up with diarrhoea 12 to 15 times per day, every day.
The first 3 years were a little easier. The diarrhoea eased to 6 to 8 times per day and you know how weak and washed out that makes you feel. But hey, the joy and beauty of being alive makes all that small stuff by comparison. The diet widened so that I could enjoy eating again and I was healthy.
Over the years I have adjusted to daily loose motions 4 to 6 times per day depending on what I eat and on limitations to my stamina and endurance, but I can still do nearly all the things I used to. I just can’t do them for extended periods anymore. Life is good.
If you have been diagnosed with this curse yourself, I give you the following advice:
Make sure you have a really good specialist surgeon. If he thinks he can remove what’s there via keyhole surgery because it is less traumatic and won’t leave a "nasty" scar, then change your surgeon. For the best chance of survival your surgeon needs to know what he is doing, do what needs to be done and he needs to be able to see everything inside you so that he can do it.
I have lost 3 family members to bowel cancer because the surgeon missed things during surgery.
Make sure ALL options are used.
Change your lifestyle to reflect the new life you have been given. Even a poor life is a good life.
Be determined to live regardless of what the docs say and NEVER GIVE UP.