Turning Point - An Anxious Two Decades

By Chris Skelding

At Home in Emu Park

I

This story is not for the squeamish, it is, however, for those who like a happy ending. The story has several purposes: first, to put an important part of my life onto paper – a sort catharsis for myself; secondly, to remind us that most achievements or improvements in life cannot be made overnight; and finally, that others who see nothing but darkness in their future will find hope of a positive outcome.

For about two years in the early 2000s I had some difficulty at the rear end - my rear end. I always seemed to be bunged up, when I did pass a stool, it was hard and painful. The eternal optimist in me said that it would all go away as mysteriously as it had appeared. It didn’t. Blood began to appear in the stool, bright red, fresh blood. This became more common and began to scare me.

As time went by and my theories of haemorrhoids or something similar wore very thin, I became frightened enough to consult Dr John Warren, my Mount Isa GP. He was very concerned and referred me to a consultant in Townsville, a Dr Hack who specialised in endoscopic examinations. Townsville is 900 kms away from Mount Isa and I said to Dr John that I would do as he suggested when I next went to Townsville on business. He very firmly said, “No, Chris, you go tomorrow, I’ll give Dr Hack a ring right away.” I didn’t argue.

So, when I saw Dr Hack on Melbourne Cup Day 2004, he organised the procedure for the following day. I’m not a doctor so don’t try this at home! The instrument (endoscope) is inserted into the rectum and the camera at the tip reveals any anomalies in the lower 600 mm of the colon. I fasted and purged overnight and was mildly sedated for this painless exercise.

Endoscope

When I awoke, a kindly nurse brought me egg sandwiches which I ate ravenously (although I hate egg sandwiches.) My son Tom was there to meet me and drive me home, but first, Dr Hack came to explain his findings. I am so glad Tom was there to share the news.

Dr Hack was blunt: “I couldn’t complete the examination, Chris, there was an obstruction which I deemed unwise to touch or disturb. I must tell you that it is a cancerous tumour, about 2 cms in diameter and no wonder you have had problems going to the toilet.”

“How long have you had these problems?” He asked. When I told him “At least two years,” he looked at me as if I were an idiot, although he tactfully said nothing. He should have, I was an idiot. Dr Hack then said, “I am referring you to Professor Ho, a highly regarded Colo-rectal Surgeon for his advice and action.”

From that day in late 2004, I began a journey which included multiple surgical procedures, some of them mind-bogglingly complex. In this essay, I will take you through some of the emotions and operations I underwent.

I began the year 2005 thinking it might be my last, bearing the frightening knowledge that I had cancer of the colon and rectum. I went to Cairns for a week on the beach to contemplate my future (if I were to have one). It was a very valuable, calming period for me; an opportunity peacefully to evaluate my life so far – I was 53 years old. Professionally I had just moved from a senior public service post based in Mount Isa to new opportunities in Rockhampton.

As I lay on beautiful Buchan’s Beach in FNQ, little did I know that a team of medical specialists were having a telephone conference about my predicament and what to do about it. I would soon find out.

II

In late 2004 I was diagnosed with a cancerous tumour at the very lowest end of my bowel and shot off to Cairns for a week of contemplation on the beach.

I saw colo-rectal surgeon Professor Ho in Townsville the following week. To my amazement, Prof, Dr Hack and several other specialists had held a telephone conference on my case and prepared a tentative program of treatment. Prof gave me a complete examination and scheduled a CT scan and a colonoscopy for me a few days later. Colonoscopy is a more comprehensive exploration of the bowel by camera in a search for tumours, pre-cancerous polyps and anything else potentially sinister. Once more this meant a thorough purge and fast overnight. This is not a fun experience but it’s amazing how clean and healthy you feel afterwards!

Prof Yok Hong Ho

Next came a meeting with Prof who outlined the plan for the next nine months or so. Again, this was done as a “round-robin” phone hook-up with several medics who I would meet during my treatment. This collective decision-making and planning gave me great confidence.

Then I was sent to the Oncology Department at Townsville General Hospital, where I met yet another marvellous medico – Dr Giuseppe Sasso. His first words to me were, “Call me Peppe!” Peppe is a 35ish year old Italian-Australian with black hair beginning to thin; he has an admirable taste in clothes. That day he wore a light blue silk shirt with a chocolate brown suit cut with rounded corners if you see what I mean. His shoes were, of course, Italian, dark brown leather and hand stitched all over. The dark brown socks matched the suit and shoes perfectly, shame about the blue shirt.

Peppe showed me the results of the CT scan on his projection screen. He said that each of the many images are pictures of slices of my abdomen and pelvis - like slices of salami, Italian salami. Based on this information and the results of the colonoscopy, the team of doctors had formulated a program of treatment.

Briefly, the program that Peppe outlined to me was an initial 7-day course of radiation treatment, where a tiny tattoo target was made on my bottom and a small volley of radiation was fired daily at the tumour in the hope of shrinking it (this was mildly uncomfortable and gave me a “nappy rash” for the first time in 50-odd years!) This was to be followed by a radical ultra-low removal of the tumour, a search for any other tumours or polyps and the creation of a brand-new rectum. Prof hoped to perform this complex procedure by means of laparoscopy (key-hole surgery) which would allow a swifter recovery than by the more invasive method.

Perhaps the most concerning thing was that Prof was sure he would have to make a temporary colostomy which I would have to live with for several months. He hoped to be able to reverse this when I my tissues had healed.

The radiation was done in early January 2005 and successfully shrank the tumour sufficiently for Prof to conduct the surgery around Australia Day. I asked the anaesthetist if I could recite oneage of my favourite poems (Yeats’s Easter 1916) as the anaesthetic took effect – I only got as far as Too long a sacrifice …

The operation took a couple of hours and was done with the laparoscope. I felt very weak afterwards and thought I would never again have the strength to get out of bed. Prof asked the nurses on duty to alert him as soon as I showed signs of flatus (gas!) By successfully passing wind we could be assured that none of Prof’s plumbing repairs were leaking.

Colostomy bag on male (left side)

This was confirmed the first evening after the operation and I was put on a light liquid diet.

Although the tumour had been successfully removed, it was not certain that all the rogue cells had been captured. Hence a course of chemotherapy would follow in a few weeks’ time.

A couple of days and a nagging physiotherapist later and I was up and about. On day 5 my daughter and granddaughter arrived from Wales expecting to see me in a hospital bed. They were most surprised to find me greeting them at Townsville airport to take them to our motel.

How would I manage the colostomy bag[1]? Would Prof’s plan to reverse the procedure and remove the bag be fulfilled? A tense few months ensued.

III

I left hospital five days after the colo-rectal surgery was completed successfully but two problems remained. Professor Ho was able to study pathology specimens from the surgery and spotted evidence of some cells that had not been captured. The course of chemotherapy would hopefully deal with that problem.

Secondly, my colostomy bag was not working very well – it leaked. There is a magnificent organisation called the North Queensland Ostomy Association (there are branches in other centres). Staffed mainly by volunteers they supply all the kit required by an ostomate (one who has an ostomy bag) for very low cost. I found them so helpful and understanding, they explained to me that once the surgery around the stoma had healed, the bag (my new chum I called it) would fit more securely, and I could be confident of no more leaks. They were absolutely right.

When I returned to my home in Rocky with my daughter and granddaughter, I found a wonderful nurse at the Base Hospital known to all as Sister Enid Vaughan. She took me through this difficult period and made me much more comfortable with my new chum.

I was then placed under the care of Dr Matthew Burge, an oncologist who travels from Brisbane a few times a month to treat cancer sufferers at the Rocky Mater. That was in 2005 and has continued to the present day.

As well as my artificial rectum or J-pouch that Prof Ho gave me, I also had to have a little device known as a portacath. This small doolackie carries the rat-poison they call chemo into my vena cava, straight into my heart and thence around my body seeking out the little cells that cause all the misery.

The Portacath Under the Skin

But those rogue cells that cause the cancer are very clever; they can remain hidden and inactive for months, sometimes years. They may then decide to attack another organ in a process called metastasis. That’s what happened to me – several times. So, even though the cancer may attack the liver, it is still considered to be the original bowel cancer that has metastasised to the liver.

My recovery from the surgery was swift and the company of my daughter Booker and granddaughter Robyn cheered me up decisively. I travelled to Wales to see Mam to assure her that I was fit and well. Then I returned to Rocky with my brother Geoff. The support of my family members at this time was crucial to my recovery. I must also mention my boss at work, Mike Downs who (unofficially and with much compassion) allowed me to recover in my own time with no detriment to my financial position.

Sadly, in September of that year, my father died and my new chum and I travelled to Wales once again for his funeral. On my return I went straight into the Mater Hospital in Townsville where Prof Ho removed my colostomy bag and joined up the plumbing as God had meant it to be. While the bag was awkward and a little uncomfortable, I was so glad to see it gone. My profound sympathy goes out to those who must bear a colostomy bag for life.

From then on, I lived my life as normally as possible. I had met Mary for the first time one evening at Rocky’s Saleyards pub, while having a quiet beer with a friend Arthur who had travelled all the way from Zambia to see me when he heard I was ill. Mary turned out to be the rock on which my next 17 years would be fastened.

Matt Burge, my oncologist, kept a close eye on my progress, insisting I have a CT scan and blood test every three months. The blood tests were specifically looking for any elevation in the bowel cancer marker, carcinoembryonic antigen (CEA).

All remained well until in late 2011, a local surgeon performed the removal of my gall bladder for reasons apparently unrelated to my cancer. After the operation he showed me a photo and explained, “Chris, while trying to remove the gall bladder I found it would not detach from the liver as easily as I expected. I looked a bit further and found evidence of your cancer there.” He went on to say, “At that point I decided not to proceed.”

Shocked and believing that liver cancer was terminal, I am afraid I was rather rude to him. I have since apologised.

Back to Matt Burge who immediately arranged a consultation with another giant of the world of surgery: Professor Jonathan Fawcett, who at the time was Director of the Queensland Liver Transplant Service.

What could he do for me now that the cancer had metastasised to my liver?

IV

The cancer had returned to my liver, somewhere near the gall bladder and Prof Jonathan was the man to fix it (I hoped.) He gave me great comfort by explaining to Mary and me exactly how he would go about this tricky business. I’m so glad Mary was there to listen and remember what Prof said.

Prof Jonathan Fawcett Ready for Work

Mam, Booker and Robyn travelled across the world to be with me and support me. We had a brief holiday at Tangalooma followed by Christmas lunch at my home in Emu Park where we were joined by son Tom and his family. What a joy!

I went into Greenslopes Hospital in January 2012 and Prof performed the surgery to remove tumours on segments 2, 3 and 4 of the left lobe of my liver. This meant removing at least 25% of my liver. This remarkable organ can regrow to its original size and replicate the roles of the removed parts within months. Astonishing. I had 48 hours in intensive care but thankfully I was able to accompany Mam from the ward to the lift as she left for her flight back to Wales. I think she drew some comfort from that.

Mary stayed with me as I slowly recovered from the surgery. Once again, a hard driving physiotherapist forced me to get moving and breathing properly. Prof Jonathan came to see me every day and knowing Registered Nurse Mary’s thirst for knowledge, explained in detail what operations he would be performing each day.

My Gall Bladder and Liver

On one occasion he described a “Whipple” procedure which he had on his list. This is one of the most complex of surgical procedures which involves the surgeon removing the head of the pancreas, the gallbladder, the duodenum, a portion of the stomach and surrounding lymph nodes. The surgeon then reconnects the remaining pancreas and digestive organs. If you have the stomach for it (sorry) have a look at YouTube https://youtu.be/ebTO2C6O4-4

After a week I was discharged, and Mary and I spent a few quiet days in Brisbane before returning home. Then it was time for another spell of chemotherapy. This entails a few hours at the oncology department at the Mater on a Tuesday when the drugs that counteract nausea are infused, then a pump is strapped to your waist which you wear until Thursday when you return to the Mater to have it removed. Repeat every fortnight for six months! The pump sets off an alarm when it approaches empty.

One Thursday as I was driving along William Street to the Mater I “inadvertently” rolled over the stop sign at the junction with Gladstone Road. A cop car saw this and pulled me over. “Do you realise, Sir, that you failed to stop at a stop sign back there?” I began to splutter an explanation when the chemo alarm went off. “What’s that?” asked the officer.

“That means my chemo is about to run out and I need to get to the Mater pronto.” He jumped back in his cruiser, turned the red and blues on and escorted me to Oncology. Saved by the alarm!

Alas, a year later, the regular CT scan showed another tumour, this time in the abdominal wall near the sternum. Matt once again referred me to Prof Jonathan who operated with his usual skill at Greenslopes and I was back on my two feet again within a month.

Multiple surgeries take their toll on a person and by now I had reached 62 years of age. I pointed this out to Prof, who said, “Sixty is the new Forty.” I was a reasonably fit sixty-two, but how much more could I take?

V

The years between 2012 and 2018 were punctuated every year or so by the continued metastasis of the original cancer. Tumours appeared twice in my lungs and made repeated returns to my liver. During this anxious odyssey, Oncologist Matthew Burge orchestrated my treatment and recovery. One particularly difficult operation was required to remove two stubborn tumours at the rear of my liver, tucked away in a rather inaccessible corner.

Oncologist Matthew Burge

Matt arranged for me to have Dr Kellee Slater perform the surgery. Kellee is a gifted liver surgeon and a superb writer: Her book How to do a Liver Transplant” is a work of art and tells how she learned the skills of her profession in Queensland and Denver, Colorado. Kellee did the job with great skill and has my enduring gratitude. (As do all these wonderful people.) When I bade her farewell at Greenslopes Hospital, she said, “I wish you well, Chris, and I hope we don’t have to meet again. But I will be here if you need me.”

Dr Kellee Slater

You may be wondering why I am writing this rather long story now, 18 years after my diagnosis of “ultra-low colo-rectal cancer”. As you can imagine, those last two decades have defined the latter part of my life.

I have to say that at the outset back in 2004 it all looked very bleak. Cancer is a scary disease and even the word “cancer” is frightening – in my experience there are some doctors who would prefer to use an alternative phrase or word.

The reason I speak now, is that a few months ago, Matt Burge told me that I am cured. I would need to continue CT scans and blood tests at six-monthly intervals but as far as he was concerned, “You are cured!”

More good news came when he told me that the last remnant of my treatment could be removed – the little portacath that pumped chemotherapy cocktails into my aging body is no longer a part of me. Throughout this chastening experience, I have learned much.

I discovered how compassionate people are, not just by shaking heads and saying how sorry they are etc; but by being practical and helpful in astonishingly generous ways. I learned how nurses could be strong when I was not, how they could carry the burdens that I was unable to at that time. I believed the magnificent surgeons when they exuded confidence that they could fix my problems.

On one occasion I returned to work looking very underweight and not well. I had to attend the Townsville office on business. One kind fellow who I had met only once, two years before, asked me about my present condition having heard about my plight. He offered me a granny flat on his rural property where I would be able to relax and recover. No cost, he would provide the necessities of life and welcome me to the main house if and when I felt like. I will never forget such generosity.

And I thank my family for being there for me in body and spirit during the travails. They thought nothing of crossing the globe to be with me. To Tom for being with me when Dr Hack diagnosed my cancer all those years ago.

And I give eternal thanks to Mary for her nursing and encouragement. I also offer her my apologies for so frequently being such a grumpy bugger!

And to you, my reader I am grateful, for following this tale of ups and downs. May fellow sufferers gain some comfort and hope from it.

© Chris Skelding

2022

[1] During a colostomy, a surgeon will bring out a portion of a person’s large intestine through the stoma. The colostomy bag can then collect stool as it passes through the gut.