My cancer experience

In the twenty-first century more than half of the population will be touched by or personally experience cancer. In my 46^th year on this planet, I was one of those more-than half. This is my version of what happened.

Every April, the Rotary Club of Terrigal puts out a self-test kit for a nominal fee which was recommended for all over-forties to buy and complete. Since I turned 40 in 2005, I thought it pertinent to take that advice, and in 2008 I did and passed my first test for bowel cancer.

In April 2010 I took the test again. Things were not as pleasant this time, with the test coming back positive for blood in my poo. I took the results to our GP who agreed with me – as bowel cancer takes a while to develop, and I was clear two years prior, it would be due to other issues. But we booked me in to see a gastroenterologist as soon as practicable.

Unfortunately it was July before I could see the doctor and, as my wife was pregnant with our first (and now only) child, the appointment date clashed with baby’s due-date. But due to some vagueness, I actually turned up a day before the appointment. Doctor was able to see me, and we booked my colonoscopy for 30/8/10 (the eve of my 45^th birthday).

After the procedure, the doctor wanted to see me to give me the results. They were not good. I, indeed, had bowel cancer. Timing much? Our boy was not even six weeks old. And bowel cancer was not for someone of my age. But there it was.

And not only was there the boy to consider, but I had just started my very-last semester at university (This may be the subject of another post). Having started my journey through the higher-learning phase of edumacation in 2002, I had come through so much to have to throw it all away! Thankfully, however, my tutor told me of the provisions for withdrawal which allow for circumstances like these. While I had to get a letter from the surgeon stating exactly what was going on, it simply meant filling-in-one-of-these, attaching that letter, putting my own story forward, and hoping for the best: fortunately the university was more understanding than my workplace, as I will go into later.

The gastroenterologist then made some calls and referred me to a surgeon who said that the disease was so advanced that it had to be removed poste-haste. But it was going to cost us $5000, payable before the procedure (which, on Tuesday, was scheduled for the coming Friday). Bedside manner? I doubt it! And his receptionist was less feeling. So I got onto a woman at his main office who agreed to speak with him, and he accepted half-now and the rest in instalments. That was doable.

So in I went for major bowel surgery. I was in hospital for four days, on morphine for one, and in bed for almost all of it. But we know how impossible it is to sleep in hospitals. And my being diabetic didn’t help, with the pills (for pain and diabetes) and checks required every six hours. The worst thing was the lack of visitors. My wife and son came every day (you’ll see a photo from one of those visits on my foursquare account), her parents came on the Saturday, and my father came (I think it was) on Monday. I did request no-visitors for the weekend, as I expected to be non-compus for the first couple of days. But I was there until Wednesday and was quite put out by a seeming lack of caring.

And on the Wednesday, when I came home, there was a message from work. How did you want to take this leave? When I left work on the Wednesday after the consultation with the surgeon, it was agreed that I would sort this out on my return. Apparently HR would not accept this. Great – how is one supposed to recover from major bowel surgery while worrying about how to organise leave?! It turned out that I had hardly any personal / sick leave left, so I would have to take a great swathe of my recovery month unpaid. But someone somewhere along the line (I think it was this same HR person) told me of the ability to access the Department Secretary who has the power to extend personal leave in special circumstances. Is this special enough? Apparently not – because I had used a lot of my leave in the previous year, the Secretary deemed my illness as not falling within the realms of that specific part if the Act (or whatever it is). So along with physical and emotional pain, now we had to look forward to financial pain as well.

So we booked a follow-up appointment with the surgeon. He was pleased to announce that he had removed the main mass of the cancer, but not so pleased to announce that the growth had come to within 0.04mm of bursting into the peritoneal cavity and being inoperable. Again with the timing (and the bedside manner – this absolutely horrified the wife). But he wanted to refer me to an oncologist for a second opinion.

So off we went to see the prof, who prescribed a course of chemotherapy. What the…? How is this a second opinion?! The prof explained that, while the surgeon had removed the main mass, the chemo would make sure that there were no nasty microscopic bits left. That was to start on 01Nov10 – one week of treatment, three weeks off, a follow-up with the prof in week two or three to see how it was going (chemo is ½ science and ½ witchcraft he said: the science is knowing what drugs are best for what cancers; the witchcraft is used to determine just how much of the drug is needed, and how to adjust the dosage to make sure the treatment isn’t as bad as the disease).

Because of what I do with the agency by whom I am employed, I was slightly aware of how this was going to be for me – cancer treatment makes one quite ill, and I was in for six months of it. Unfortunately I didn’t have the time to be able to have treatment and take time off to recuperate: I had to do the treatment in my own time in accordance with how they booked me in. Fortunately for the way the system works, they book the long-termers in early, and the short-termers like me in late. My treatments eventually fell to 16:00, and there was a definite cycle to how it all worked. Mondays were manic: at one point because of how things worked out, I didn’t turn up until 16:15. They kept me waiting there for a half-hour. Then there was the rush-round to see where my drugs were, whether there was a “bed” for me, etc etc.

But don’t get me wrong – I wish I could name every one of the nurses in that centre, from the one who took me through the first course (in one of the consult-rooms so I could have the fam in with me), to the one who took a particular shine to me: offering me a drink or ice-block “because I’m special” when it was part of the treatment that no one else did; to the one who got me in and out in record time, to the ones who only looked after me the once. I won’t name any of them for fear of leaving any of them out. The work they do is fantastic – from dealing with the angry woman who had been sitting there for two hours and had yet to have the drugs go through, to dealing compassionately with the long-termers who were very obviously not going to make it, from joking with those of us who still had a sense of humour, and all doing it for the menial amount that nurses are paid. They do all the work, the doctors get all the kudos – that’s how I see it.

My ability to cope with the treatment ebbed and waned. Obviously these are hefty drugs – super-powerful, and accumulative. After a couple of cycles, my ability to back up at work declined, and my ability to carry on with every-day living over the weekend diminished as well. At one point I slept from 19:30 on Friday to 11:30 Saturday. But if this was the worst with which I would have to cope, then so be it. I always kept reminding myself that it was better than the alternative. Eventually, however, I succumbed to a chest-infection which meant that I would have to defer my very last cycle. Combined with the cumulative effects of the chemo, I was unable to attend work for the best part of two weeks.

With the second deferral came a request from one of the prof’s registrars that she see me with a chest X-ray. The first time, this registrar had prescribed me super-powerful anti-biotics to fight the chest infection, but they had not done that much. The X-ray, however, was clear of any pneumonia or other nasties. So she went around to the prof, and came back to say, “You’re done”. It turns out that the minimum number of cycles in cases such as mine was 4, and the maximum six. I had done five, and was waiting to start the last one once this infection had cleared. But the prof said that five was enough. Not exactly the finish I wanted, but the end is the end.

So to all those who supported me through this ordeal: the doctors, nurses, friends, family, and tweeps – thank you: it would not have come out quite the same way without any of you!