Rob’s story

THE DX

I have been diagnosed with colorectal cancer, possible Stage 2.

Over the next three months, I will write up this next character-building journey of my very lucky and interesting life, as I learn more about the treatment I’ve chosen (robotics), the changes this will make to my life, and the prognosis and chances of reaching 136.

I demanded of the doctors that there would be no bullsh!t, obfuscating or sugar coating and there will be none in my reportage.

I am really OK about all of this and have faced worse, in far less auspicious and supportive surroundings. I will just get on with what needs to be done.

Lessons From A Colorectal Cancer Diagnosis

A letter to a friend recently diagnosed.

One of the things that I forgot to mention when we spoke, and that you might experience, affected me yesterday. I had a long day, travelling to the city on the bus, eating a reasonably normal lunch in Chinatown (black bean tofu) and testing out my newly trained and, hopefully, disciplined colon. That all went well with no problems, but when I reached home, I lay down and slept for three hours, had something to eat and then slept through until five this morning. I was completely shattered.

So, fatigue has been one of the longest-lasting, significant impacts of the operation. It is still impacting five or six weeks later. I have plenty of energy but, late in the afternoon, I start to fade. I sleep for about 90 minutes and then I am fine, going to bed at 2130 and sleeping through till 0430, my normal time to wake.

I should put into context what follows.

As I think that you know, I’m now 76. I’m generally in very good physical and mental shape.

I work a bit more than full-time as a company CEO and management consultant. I’m involved in four charities, in one of which I travel to Cambodia every year, and work long hours in very difficult environments. I’m an ambivert, so while I have a very active, outgoing and full life, I also enjoy solitude, reading, meditating and writing.

Being over 75 means that I am subjected to the dementia test every six months or so by my GP. I annoy him by giving him the answer to the next question before he asks it. (My brother, aged 82, when asked to solve some simple mathematical problem offers to do complex multiplication and divisions involving very large numbers).

I am an ovo-lacto vegetarian. I walk every day and exercise four or five times a week, mainly weight training and yoga. Over some years, I’ve recently run in the City to Surf and I’ve always thought that I could sense what was happening in my body. So, for these reasons, I think that I’m a slightly above-average-active 75+ year old.

The diagnosis of colorectal cancer was a surprise. I had no apparent symptoms and no family history.

As I also think that you know, I was diagnosed 10 years ago with a large benign brain tumour that was removed and that has left me with some facial palsy, modified taste, dry left eye, no hearing at all in my left ear and some balance problems.

To keep my balance, I need a strong core to stop me falling to the left. While I had to quickly learn to walk again, my brain reprogrammed pretty easily. I recovered physically and mentally within four months. That experience full during this current character-building exercise.

The diagnosis and planning

The diagnosis came out of the blue after the regular blood test in my six-monthly check-up. I had always done the “Poo Test” and there were no apparent signs in the most recent, which I had only done about 9 months before diagnosis. Interestingly, apparently on the basis of the bell curve in diagnosis statistics, these tests are not provided by the government after the age of 74. I acquired the lesion when I was 75 and not before.

My GP recommends that people continue to take the test after 74, and that now seem sensible to me.

I had registered a slightly decreased level of ferritin, a test that I had not noticed when I received these blood test results, or previously. I have always had a good iron count because my green-leaf dominated vegetarian diet and a DNA suggestion of a propensity towards haemochromatosis. On the basis of this ferritin anomaly, my GP referred me for a colonoscopy and endoscopy which was organised quickly.

It’s not surprising that the preparation for a colonoscopy is the subject of one of David Sedaris’s better-known stories. It’s not an enjoyable procedure but, in reality, is hilarious.

The lack of food for 24 hours and the volcanic preparations that are intended to clean out the entire bowel, to provide more pleasant viewing for the surgeon, have the objective of producing a BBPS score of 9.

This was the start of what was, for me, a wonderfully frictionless trip through the medical establishment. N, the doctor who performed colonoscopy, was to travel overseas two days after the procedure (performed on Wednesday afternoon), to collect his ill father.

He gave me photographs after the procedure, told me that there was a lesion that he suspected was malignant and suggested that I quickly organise a CT scan, while he waited for pathology confirmation. I was able to do this the following day (Thursday evening).

On Friday morning, he rang to say that, although he had still not received the pathology results, the CT scan had confirmed that the lesion was cancer, but it had not metastasised to other organs or bones. It was, he said, reasonably extensive, but they wouldn’t know what stage it was for sure “until they got in”.

I asked him to recommend some surgeons who I could investigate and perhaps interview. On the way to the airport, to fly out on Friday afternoon, he rang to say that the pathology had confirmed the diagnosis and to give me the names of recommended surgeons.

I had started to investigate the available procedures and the recommended surgeons and had decided that I wanted robotic surgery. What I didn’t know at the time was that robotic machines are relatively few and were therefore booked months in advance, at this time about three months in advance. And here began the second stage of the magical journey.

I had already investigated and abandoned one potential surgeon when my phone rang. A name came up in the screen indicating that I had spoken to this person before and had saved their contact details. It turned out that this was, J, the surgeon who had performed a double hernia operation on me 15 years before but who was now known as a “gun” robotics and colorectal surgeon, one of the pioneers of robotic colorectal surgery in Australia and a former President of the Colorectal Surgeons Society.

He told me about the scheduling problem, but asked me to give him a day or two to see what he could do. He rang two days later, having convinced the hospital to allow him to operate on Saturday, two weeks hence.

So, having set the scene, perhaps I can talk about the various elements of recovery.

It is crucial to recognise that what follows is my experience. The procedures and subsequent treatment will vary with individuals and their circumstances and depends on a multitude of factors. So this is not medical advice, which should only be discussed with your surgeon.

However, I hope this provides a guide to some topics you might want to discuss.

The operation

I had robotic surgery on 12 October. I understood from J that the operation was to remove about 20 cm of my sigmoid colon, the bottom third of the colon.

The operation took 4 hours and 55 minutes and I “came to” shortly after in the recovery room in no pain (I had been given Endone) but with a raging thirst. The nurses gave me a lemon ice block, which was the most beautiful thing that I had ever tasted. (I hadn’t had an ice block for 40 years!). I was returned to the ward after about an hour.

I had a cannula in my left arm for a saline drip but into which pain relief medication could also be introduced. I had a catheter draining urine and a large drain pipe from my right side draining blood away from the largest of the five wounds made by the robot.

I’m not keen on any form of painkillers and so, as soon as I could, Sunday night, I went from the Palexia which is a Schedule 8 restricted drug, given twice a day, to Panadol. (The hospital gave me a packet of Palexia to take home, just in case, but warned me that it was a criminal offence to sell it on the street! It is an opioid. I haven’t used it.) My last Panadol in hospital was on a Monday night. So, the pain was certainly manageable.

On Sunday morning, I started walking the length of the ward as many times as I could (I had found how helpful this was during the 2014 brain tumour recovery). It not only helps to stop blood clots, but also gets the bowel working.

At a later stage of recovery, walking also seems to help with control of what is euphemistically called “urgency”. It’s also very good for one’s headspace, saying hello to people, seeing what’s going on. I slept a lot.

From Sunday, I had tasteless food – jelly and a bit of indeterminate soup. I had no bowel movements until late Sunday and then they were essentially water and, from then on, frequent and urgent. Sunday evening, I had some hospital sandwiches.

The drainage tube and catheter were removed on Monday at midnight. I thought this may have had some mystical significance. But both had to be removed at either 6 AM or PM, midnight or midday, so that at least half a 12-hour nursing shift could observe if there were any subsequent complications.

All the dressings were renewed, with the removal of the plaster long with many small stomach hairs being the most painful procedure of the last six weeks.

I had done a lot of walking on both Sunday and Monday and may have been starting to get on the nursing staff’s nerves . On Tuesday morning, J said that I could go home early, which I did. All in all, the hospital stay with excellent.

What I did not receive, which I think was a very surprising deficiency in support by either the hospital or J, or perhaps just in the coordination between the two, was much information about what would subsequently be experienced, certainly the most difficult part of recovery.

I had been given a leaflet in J’s office a week or so before and while this dealt with some matters, it wasn’t particularly helpful for what then subsequently unfolded. In a sense, I was left to my own devices, OK for me, but I imagine not for everybody.

The recuperation and retraining of the colon and rectum

What came as a surprise in my post-op appointment with J was that he had in fact removed 25+ cm of not just my sigmoid colon, but the top of my rectum, the “container” in which waste awaits a signal to the brain that indicates the need for a bowel motion. This had an impact on what followed.

Initially, I was careful about what I ate at home. The white bread diet pre-op was
recommended, completely the opposite of what I would normally eat – nuts, high-fibre bread, grains, tempeh, all forms of vegetable, particularly broccoli and cauliflower, apples and pears with the skin on.

For the first week and half, two things were obvious. My bowel movements were very watery and they were subject to quite urgent spasms that meant I had to make a dash to the toilet.

I had three “accidents” in which I could not control a bowel movement. I had been walking 5-6,000 steps every day, generally over about 90 minutes and was always able to arrange my toilet visits before and after. However, on one occasion, walking back, I felt a little faint and sat down. The minute I stood up, I lost bowel control.

Fortunately I was near a small local shopping mall that I knew well, went to the toilet, cleaned myself up and walked home. The other two occasions were at home.

Subsequently, I received sensible advice to the effect that I should always have with me a plastic bag with spare underwear, some tissues and wet wipes. As well as being practical in the case of an “accident” these also give the patient a level of confidence to engage socially.

While an incontinence diaper was suggested if I wished, I have taken to 2 pairs of underwear, the inner pair being cotton the outer pair having a higher level of polyester or spandex. I haven’t needed them.

I started to research what I might need to do post-operatively and, frankly, found a lot of contradictory advice online, certainly not specific to my particular case. That specificity about the type of surgery and recuperation is very important. The range of advice covers different procedures on the bowel, including chemotherapy and the removal of various colon sections.

In particular, the subsequent recommend diets seem to be quite different and specific to the type of operation undergone. Mine was a Low Anterior Resection that required a postoperative diet of little fibre and as much protein as I could get on board with such a limited diet.

Then I came across Bowel Cancer Australia!

If there is one thing that I absolutely recommend that you do, it is to get in touch with this fabulous mob www.bowelcanceraustralia.org. They are brilliant. Under the website heading “Support” there are links to all sorts of very practical advice, including “life after treatment” and “diet, eating well”. They even have recipes for each type of diet suggested.

However, their most brilliant resource is a phone service allowing patients to speak to a specialist Bowel Care Nurse and a specialist Bowel Care Nutritionist. The phone number is on the website. When you ring in you will talk to Michelle, who is a lovely, caring person.

She will send some material to you but will also be able to refer you to a Bowel Care
Nutritionist. Jo is mine, and her advice has been absolutely fundamental to my rapid improvement over the subsequent three weeks. Her advice has been eminently practical.

She can deal with any question, can help with food choices and some interesting and practical non-pharmaceutical suggestions. She rang me a week after our first consultation to see how I went. I’ve sent her questions by email, and she responds with advice that works. She has rung me three times subsequently and continues to give me exceptionally useful advice.