Episode 6: Living in the mutants’ regime

It has been just over a year now since the mutant invasion was discovered. I celebrated the anniversary with a bone marrow biopsy to see how many of the mutant beasts were still kicking around. Their numbers have dropped but they are still there and still quite effective in doing what they do.

The preferred method for the mutants to let me know they are still around is the baseball bat*. Some nights they pound my legs so that when I wake up my thighs and calves ache.  Sometimes, they take the bat to my hands and fingers.  The overall sensation is that I’ve just finished four quarters against Barry Hall. (For those who don’t follow Aussie rules, substitute thuggish player from your football code of choice). 

They also manage to whack me over the back of the head with the bat every so often, imparting a fatigue that is hard to describe. As you would expect with a baseball bat to the head, it happens suddenly. It is less like fatigue and more like some form of quick onset concussion. (Or was it Barry Hall again?) The effect is to send me to bed to sleep for an hour or so.

Cancer zaps you as a large part of your energy is going into producing the cancer. The drugs then zap the cancer. I think the zapping takes place in the bones, in the marrow, and that is why the bones hurt. I can report that those bits of me without bones generally feel okay.

Apart from that I seemed to have been spared (so far) many of the side effects I have read about or heard about from others – rashes, hot flushes, vertigo, becoming more prone to car sickness … There are some side effects that linger in the back of your mind.  Those related to heart disease sit in this category. A very small number of people have had heart failure leading to on-going death. Regular ECGs show that this isn’t an issue for me at present.

I know of people who have other diseases – non-life threatening in most cases – that, to me, have a much bigger effect on their quality of life. I can still work and I am fortunate to have an employer who will allow me time off whenever I need it. I can still go hiking and ski-ing and camping. My trips are modified a little (my Easter hike to The Fainters didn’t quite make it to all the way to The Fainters, for example, but I still managed a couple of days toting a pack around the Bogong High Plains - here's a link to some pics from that hike Hike to The Fainters - almost if you are interested).

So I continue to live pretty much as I did before but with sore legs and an occasional afternoon nap. I get sympathy because I have cancer and kind of feel guilty sometimes that maybe I should be a bit sicker than I am. I live with the sword of ‘blast phase’ hanging over my head and trust in the latest drugs to keep it from falling. I have the inconvenience of medical appointments and a weird medication regime involving fasting at stupid times of the day, like when everyone else is off to the pub for a beer.

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* Being an Australian, you would think that a cricket bat would be a more suitable weapon than a baseball bat. However, using a cricket bat in such a way is, well, just not cricket. For those who fail to understand this, I suggest you get yourself to Melbourne for an Australian Christmas of roast meat and vegies (despite the temperature being a zillion degrees) followed, of course, with backyard cricket. Boxing Day should then be spent at the MCG for sunburn and beer watching day one of the Boxing Day test.

Episode 5: The news spreads

I live in a small town, a couple of thousand people nestled together in a fog filled valley. It is the type of place where you smile and say hello to everyone; chances are they are related to, a mate of, or work with someone you know. While the local newspaper reports on cattle prices and footy scores, what’s really happening is learnt at the pub or over a cup of coffee.

Some ailments are publicly acceptable topics for conversation. A broken bone, the flu, or a knee reconstruction can be discussed. Mental health is generally taboo – a conversation regarding your bipolar disorder is unlikely to be comfortable. Cancer seems to fall in the middle. People will talk about it but for some there is awkwardness.

Advice from the Leukaemia Foundation is that “it is usually better to be as honest and straightforward as you can … Keeping a diagnosis of cancer a secret for a long time is exhausting and in most cases impossible.”  So I never tried to keep it a secret. When I was diagnosed I mentioned it to two or three people at most. Soon I had friends knocking on my door to see how I was.

It’s just not possible to be away from work and sport and everything else for a few weeks without any explanation – especially in a small town where the people you play tennis with are people you work with or your wife’s friend’s husband or have some other connection. Taking a month or so off without explanation would probably have led to some interesting rumours.

Having the news in the public domain has allowed others to open up to me. I have shared stories of cancers and other weird diseases. It has helped.

It’s been over twelve months now and there are still those who don’t know. When I walk down the street and people ask “How are you?” I’m not sure what they are asking and seek little clues rather than blurt out “I’m still having chemo but it seems to be going well and … oh … you didn’t know.”  I’m thinking I should update my Facebook status to “Not dead yet (wink, wink)”.