It was about this time last year; I had just run five kilometres for the first time ever. I had lost over thirty kilos and was getting up at 4.30 am to go to the gym every day. I had given up smoking, reduced my drinking, and was fitter than I had ever been for at least a quarter of a century. So, I should have been on top of the world, but I wasn’t.
I was always tired and at times too tired to even sleep. I could barely concentrate on my TAFE studies. I noticed a little blood in the toilet but not much and when I queried this with my GP, I was told it was haemorrhoids and not to worry.
I remained tired, so was unable to put in the solid effort I had been putting in at the gym previously, so I couldn’t lose weight. I asked my metabolic doctor to investigate it, and he ordered blood tests that showed a lowering in iron but not below normal.
In fact, I was told there was nothing to worry about. Even though I was very fatigued, bleeding and my iron levels were lowering, I was silly enough to believe my metabolic specialist.
My fatigue did not improve and my efforts in the gym were getting worse. It became harder to achieve the levels I had previously. I decided to go to a GP I used to see years before who was now in semi-retirement. The first thing he organised was blood tests and a bowel screen. Within a fortnight I was in for a colonoscopy at a brand new much maligned hospital, but it was so efficient, clean and not in any way like the descriptions the media had said of the hospital.
After the colonoscopy I was just shaking the effects of the anaesthetic when the surgeon came in with the results. I will give him respect; he did not muck around. His first words were, "The news is as bad as it gets. you have a tumour and should expect the worse."
After fifteen minutes I got up got dressed and left. The surgeon gave me the report for my GP. I got home safely enough and went across the road to McDonalds for my lunch.
As I started to eat, I decided to look at the GP’s report. The new hospital certainly does things a little bit different. The report was standard doctor talk, but it also included full colour pictures of the tumour and all the other polyps that were removed that day. The tumour was disgusting and one of the photos had the probe pressing on the tumour. The only way I can describe it is, for those who remember the movie Golden Child, when the kidnappers fed the “Golden Child” with a grey looking porridge. When the porridge was pressed upon red blood bleeds out from under the porridge. That is how the tumour looked.
I offer this advice, if you get a chance to look at a colour photo of your own rectal cancer, do not, it will give you very graphic nightmares.
The day after the colonoscopy I had the first staging scan. The day after the scan there was an appointment arranged for me to see the first in the trinity of doctors treating my cancer.
It was a nervous 24 hours waiting to see the surgeon with my mind playing out many scenarios. The next day I thought I would walk to the surgeon’s rooms, only about an hour’s walk. So, I put Spotify on the headphones and walked.
I got five minutes away and the Iron Maiden song ‘Hallowed be thy Name’ played. Those not familiar with the song, it’s about a condemned man looking out his gaol cell window at the gallows he will be walking to soon. I could not believe it; I had the exact same feeling walking along the pacific highway towards the surgeon’s rooms. It is a great song, but I do not think I will ever listen to it again.
The surgeon told me that the cancer had not spread, and he scheduled me the following week for surgery. In the meantime, I had to do a staging pelvic MRI so that he could plan his surgery. The surgeon booked the surgery for the following Wednesday but told me that he had to take my case to the round table meeting they have with the other doctors on the Tuesday night before the booked surgery.
The surgeon told me that the surgery had a ninety percent chance of going ahead. Tuesday night came along, and I had prepared myself for the surgery. I had just chewed down the last glass of the incredibly hard to drink bowel prep, when the phone rang, it was the surgeon calling me at ten o clock at night to cancel my surgery.
“Oh shit.” The radiologist had identified a number of lymph nodes in difficult to get to places that had the cancer. They could not have told me this before I did the bowel prep?
So, I was passed on to an Oncologist like a baton in an Olympic relay.
I think the most frustrating part or this “journey” was the time it took for treatment to start. Over four weeks of sitting at home thinking about this thing inside that could be growing and doing whatever it wanted to do and there was nothing I could do about it. I had to be cleared by a cardiologist, endocrinologist and have a few teeth removed to clean up some infections and then I was ready for chemo.
First day of chemo was a day I will never forget. Before I started the chemo, I had to get the Port o Cath put in – an experience all to itself. The architects who designed the hospital must be so proud of themselves. To have the Cancer centre and the mortuary on the same floor must be for efficiency. So, to get to radiology from the Cancer Centre they have to wheel you past the Mortuary.
Then when implanting the port, the interventional radiologist places a sort of sheet over your face; just like they would do to a corpse. Before they insert the port, you sign a form acknowledging the doctors have explained the risk of the procedure. The risk they do not explain is when the wire they insert runs into the heart it can tickle a heart nerve. When this nerve is tickled your heart jumps a beat and this feeling of doom runs through your whole body. Seriously every part of your body including your toes think you are about to die.
I was then wheeled back to the cancer centre past the mortuary, ready to begin chemo. My oncologist said that because I am a big fat Buddha that she had to prescribe a relatively large dose of chemo to be effective. But really, do they have to say “that’s a big dose” every time they open those silver bags of chemo?
I only did four cycles, and I did offer the odd prayer for those that have to do more, but four cycles were hard enough. I suffered with the fatigue really badly. But that was the only real side effect that bothered me.
Sure, if I put my hand in the freezer it would go numb but by the fourth cycle I got sick of having three different types of gloves in the kitchen and got used to the numb hands that went away just by putting my hands under warm water.
I know that with each cycle that the side effects seem to last a little longer and got a little worse. My oncologist would say she did not want to lower the dose. I replied I didn’t want her to do that either, but what I really wanted to say was that I wanted her to go harder.
One of the biggest problems with Folfox is underdosing, so I would have been happy to go harder. I did not have pins and needles, nor any mouth ulcers, so my fear is being underdosed.
My oncologist is extremely effective and totally has my trust, yet there is no rapport between me and her. Sometimes I imagine tumbleweeds rolling through the consulting rooms when I have an appointment. This is probably one hundred percent my fault. I remember before I went into an appointment with her, I had prepared the following question: “Since the scans suggest the lymph nodes are in the area most at risk of local area reoccurrence, after the surgeon resected my rectum and removed the cancer and all the LALN’s, will you be giving me another course of the heavy chemo?”
But when the oncologist asked me if I had any questions? My response was “no I cannot think of anything to ask.” Then more tumbleweeds. I might laugh about it now as I do not know how this happened, and I still have no answer to the question.
The heavy chemo has finished for now and hopefully forever. I have just had a staging re-scan and am waiting for the results. It is another one of those nervous times that a person with cancer has. The baton is about to be passed on to the radiotherapy oncologist to start that part of the treatment. Then if all goes well, the baton gets passed back to the surgeon sometime in January or even February, for the surgery I thought I would have had in July.
My oncologist said that treatment was going to take a long time. She was not wrong.
I have never asked what my chances are and I do not need to know. I am content in knowing that the surgeon, the oncologist and the radiotherapy oncologist are trying to cure me of my cancer. I feel blessed to have them working in my corner.