Life after Bowel cancer diagnosis.
Bowel cancer is a tough show. To ensure your “show goes on”, it is essential that at the first signs, you put your trust in the professional medical teams. It is quite frightening at first but put your head down and go for what you are advised. After every “dark night” the sun eventually rises. I know, I’ve had a few in my three main separate episodes.
I have been reluctant to describe my journey, as some bits were tough. But, after 22 years, seven new grandchildren, a marvellous partner, my journey has been (and continues to be) worth the ride!
I have been fortunate to have many excellent surgeons, doctors, nurses, associated medical professionals and an excellent oncologist. Never fear, they are there waiting to help you too!
I had been “married” to my work for over ten years since divorce. Living basically alone and if not at work in NSW, on flights all around the world. In 1998, I started a crazy ten months flying back and forth between Albury, NSW and Auckland, New Zealand. This meant living in hotels/motels during the week, then flying back to Albury for Friday and Saturday night, before a 6.30am start Sunday and fly to Sydney then Auckland. Second son was by then living in my Albury house and I wanted to both see him and my other two sons (living with their mother). 18- to 20-year-old son needed at least the cursory check on how he was going – and whether my company car was still in one piece!
By about April, I started to occasionally be woken up during the night by often quite severe pain in the gut. Often, to try and relieve the pain, a visit to the toilet was tried. I then noticed a bit of blood occasionally. Not being at home during the week, and knowing no GP’s in Auckland, I must admit using that as a bit of an excuse for not seeking medical advice promptly.
Late October 1998 I moved to the pulp and paper mill at Kawerau in the Bay of Plenty to help improve the mill’s performance with the teams there. I’d also led a “spill-and-fill’ of all our Australian and NZ staff jobs, some 2,000 people. Life was intense and exhausting. Wednesdays I’d fly Whakatane to Auckland and back for my role in Fletcher’s Global Procurement small team.
In 1999, my youngest son had moved to Stratford-on-Avon in the UK on a gap (two!) year having finished his H.S.C. in 1998. We spent three weeks together, and my gut discomfort was increasing.
On return to NZ, I eventually got up the “courage” to see the local GP. He did some checks and gave me a kit to do the poop test. Unfortunately, he then headed off to do some post-grad development and I procrastinated before going back to the surgery to find a woman locum. She was really nice, and eventually convinced me to see a surgeon in February, 2,000. I’d wasted two years due to my aversion to having my bowels examined.
I eventually accepted and appointment with the surgeon in Whakatane on the Monday.
That afternoon was one hell of a shock. The surgeon insisted he explored, where no man had been before. He immediately advised there was a problem. Friday that week, I had a colonoscopy that confirmed what the finger and sigmoidoscope had found.
To this day, I can’t reconcile my cowardice to go and get checked out. It most likely has made the outcomes even worse than they needed to be.
Early the next week, I flew back to Albury for the next stages of treatment as the surgeon said I’d need support for the times ahead, and at that stage sons 2 and 3 were living there. The day I arrived, my first grandchild arrived, and I went to hold her at the hospital. Life has some beautiful moments! (She’s recently finished a degree at a good Melbourne University with more HD’s than I ever amassed!
I went to my old Albury GP, and when he read the colonoscopy report immediately sent me to a surgeon who he reckoned was the best in town. I think he was correct. I must have made light of the challenges ahead, as I still remember him saying: “Mr. Beath, this is very major surgery. You have let things go on too long.”
I had an appointment with the Surgeon a day before being admitted. At the last minute he asked me to sign an authority form. I was a bit confused and cranky when he told me that depending on the location of the tumour, he may have to remove all my anal structures as the colon has segments of vascular tissue and whole segments need to come out to prevent other problems. When I hesitated, he blandly said: “If you won’t sign, we’ll cancel the operation.”
So, I asked for more information. He told me if he had to go that way, I’d have a colostomy bag for the rest of my life. Even so, I’d have a temporary bag while the gut healed from the operation.”
I hesitate to explain my first operation in too much detail, as I’d rather future patients realised this was 22 years ago and things are so much better now. The science has moved on a long way. I had a fourth operation July 2021, so speak from experience!
I awoke to find tubes coming and going everywhere. Pain wasn’t a problem and was well managed. I did inherit an ileostomy bag. It was my companion for I think 6 weeks, before a procedure to check that things had healed meant another operation to re-join my ilium and “rid me of this” bag. Things didn’t go terribly well as I picked up an infection that took a couple of weeks to overcome.
In those days, the post-operation follow up was technical, not blended with the emotional needs of the patient – ME!
Two thirds of my descending colon were gone. This dewaters the bowel movements. Toilet visits 15 to 20 times a day were required. No advice on cleaning and maintenance of my bum were given. I had to re-learn when I needed to actually go to the loo as things felt different. Much like people who suffer strokes etc., I had to re-learn the signals so my brain could respond. I carried toilet paper, and clean undies everywhere I went.
Return to work in NZ was a worry. I put a reserve on a toilet at work. If I got cranky in a meeting, everyone else only had to wait as I usually said my bit and headed to the loo. I refused to fly anywhere for work unless in Business Class, as dunny access was necessary. When one feels there is pressure to find a loo, I think it just made me more nervous and visit more than maybe was needed.
January 2001, I transferred back to Sydney to a job in our Regional Office. Over the next five or so years, I knew every clean, and not-so-clean public toilet in Sydney city!
Going to the dunny so often meant problems in cleaning up. Eventually, I experimented (a scientist by trade!) and found Sorbent Wet Tissues. These are quickly dispersed and don’t clog your dunny pipes. They are also gentle on your bum skin. Believe me, that is IMPORTANT!
Things seemed to be coming manageable and work once again became more intense.
I’d been having regular, at least annual colonoscopies since my initial treatment, so had my next scheduled one in Albury in late October 2002. Next morning, I flew to Whakatane in the Bay of Plenty, NZ. Unusually, I felt tired and had to leave dinner functions early that week before flying back to my Sydney Office Friday night. The red light was glowing on my desk phone. The message advised me to ring my Albury surgeon’s rooms A.S.A.P. I tried, but it was 6pm Friday night and no answer.
After a nervy weekend I phoned first thing Monday morning. The surgeon quickly came to the phone and asked me where I was based now. When I told him Sydney, he told me to wait. Ten minutes later he called back and told me to call his mate, a Vascular surgeon at RPAH in Camperdown. A hastily arranged consult ended with me being sent for CT scan at North Sydney.
As I was at the end of the queue for that day, the scanning folk slotted me in as my new surgeon was a well-known senior medico. They gave me the films about 6pm as a massive storm hit Sydney. I got reception to call me a cab. Sitting there, holding my brown envelop while two hours later a cab arrived. Life was ticking by, it seemed.
I got back to my Hurstville apartment about 8.30pm. Tired, stressed and wondering. Alone.
Next morning, I took the films to my appointment with the surgeon. He put them up on the backlight and after a few minutes said: “Well, that’s bloody lucky. – Then again, it is, and it isn’t. The 4cm tumour is on the right side of your liver and so can be operated on. Make an appointment for a PET scan asap.”
Alone, it took some time to digest what the hell was going on with my body. I found my way back to my Oxford Street office about 1pm. Sat at my desk. Wondered. Decided that as this was my second cancer episode, I needed to seriously review my crazy lifestyle.
I started to inform work colleagues and the 25 people I’d been mentoring on their leadership development and advise I was, as in cricket, “retiring hurt”. That day after 5.30pm I walked down to Central Station, then the crammed train took me to my empty apartment in Hurstville. I admit I felt empty and somewhat lost, so made an appointment with my new GP in Sydney next day.
The GP was a comfort. He not only gave me a referral to an oncologist at Sydney University but rang him to expedite my appointment.
After my PET scan, my surgeon said he could operate as there were no other tumours evident, but suggested we wait till the start of January to avoid having me away from family and in hospital over Xmas and New Year. “To give your liver the best chance of building strength, no alcohol from now to your operation on 6th January 2003. Ah, bugger it, you can have ONE glass of red on Xmas Day.” Crusty old bugger had a heart! I actually liked his rough and ready manner, similar to my Albury surgeon. They’d worked and studied together for years. I found out later that they were both based at RPAH in Sydney and had a yacht. When on the harbour on their days off, all other seacraft avoided them as they yelled, cursed, gave advice and generally had a good time letting off steam.
Still alone next morning on January 5th, 2003, I took a cab to The Mater, North Sydney. The operation followed next day and I had a right hepatectomy (not sure this is correct, spell check is a pain!). By then my front belly was becoming a bit of a goat track for grand openings and staples to close shop.
A month later my Oncologist started me on a 6-month chemotherapy course. The biopsy indicated my tumour had originated from my bowel cancer. It was an adjunctive course and was tablets, not injected. A box of tablets cost about $700, so thank goodness we live in Australia with a great medical system, not some third-world dump like the USA.
The only drawback to the tablets was the number of them per day. I think it was 21 over the day. Three weeks on, one week off. My oncologist and GP monitored me closely, and you learn to appreciate their professionalism very quickly.
All wasn’t lost. During the 3rd week of chemo, I met my current partner. This saved my sanity and my will to fight on. No longer living alone, coming home to an empty apartment each night after the day’s challenges.
We need to consider the emotional needs of cancer patients, hence my 5 years with AGITG, trying to improve the emotional, as well as the scientific and technical aspects of treatment.
Gradually, my doctors extended the time between my colonoscopies for monitoring. Then Covid arrived, so elective surgery was basically cancelled in Melbourne for a year.
In 2021 I could avoid it no longer and went for my next colonoscopy. The procedure itself is no worry. The preparation is a bit of a trial, but after I think 15 or so, I just tell my self to get in bland drinks, plenty of dunny paper, and hang close to the loo. Sorbent wet wipes are a necessity or your bum feels on fire after several hours.
After the first colonoscopy I came to as per usual, waiting for my cup of tea and sandwich. The surgeon came told me there’s a problem. There was a 3 to 4 cm polyp in my transverse colon. He’d tried to get it all but was conservative as he didn’t want to puncture my colon. I was scheduled for another colonoscopy four months later to try again. I wonder if I’ll ever start to enjoy the bloody things… so far it seems unlikely!
The second one also wasn’t easy and so I went to his rooms a week later to talk it over with him.
By this stage, I was thinking more negatively than ever in my life. He was great. He convinced me to go and at least talk to a surgeon he considered both a friend and bloody good surgeon.
In my negative mood, we had an hour-long, in-depth consultation with the surgeon. He patiently listened to my history and other life matters. He asked me to think about things, have another PET and CT scan and bring my partner for a joint meeting.
My mind was thinking that if I was going to have another segment of my colon removed, and end up with a colostomy bag, I’d take my risks with the cancer and take what I could from my remaining days. I after all, 74 years old. (75 now)
He straight away told me there were options. “let’s go over some ..” My partner wasn’t happy with my negativity either. After another hour of his time, we agreed to let him have another dig. I was so confident as he was amazingly confidence-inducing. In some ways my biggest shock was “Hell, this will happen Thursday next week!”
Covid being everywhere, I’ve never seen his face as he’s always got either a surgical mask, or face screen with it.
Long and short, the operation was 7am next Friday. He and his team laboured over an old bloke for six darn hours. As I came to in ICU, the first thing I did was feel around for the colostomy bag. It wasn’t there. He told me he’d try and do his best – and did.
I had three weeks in a brilliant hospital. Magnificent operating team, magical nursing and support and all in the mess of the Covid trials.
Folks, never give up, especially too early. Do not put faith in DR Google. It generally doesn’t know you and your problems. Follow the professional advice and care from our great medical resources.
I’m here after over 22 years to enjoy my seven growing grandkids and my partner. Life comes with many challenges. I mentioned my many dark nights. But there are a bloody sight more bright days.