Sunday, October 25, 2015

This is not a drill

Right now I'm part way through the battery of tests that inevitably follows a cancer diagnosis. It is still too soon to know if the lymphoma has spread. This post, enhanced by the pleasing effects of a mild steroid, captures the big reveal last Tuesday when I learned the result of my biospy, and some of my early reflections on the experience. At the moment I'm at home mustering my strength ahead of the start of chemo on Wednesday.


While sitting idle in my hospital bed awaiting the results of biopsy, in my head I had an image of how a patient got The Big News.

I pictured notification from a friendly nurse that I was expected at an appointment an hour or two down the track.

I pictured bringing together my wife and parents.

I pictured walking into a tastefully decorated room in the hospital, fresh flowers and a box of tissues on the table, a comfy chair awaiting me.

I pictured a collection of kindly hospital-scrubbed experts sitting around the table, there to meet every facet of my curiosity.

I pictured being gently broken the news and then slowly being supported by the experts around the table to care for me.

I pictured calm words of reassurance – “This will all be okay”.

Sure, the whole scene would be drenched in tears, but it felt right.

The reality was a bit different.

Last Tuesday morning I was laying in my hospital bed reading The Economist. Suddenly a young doctor, a junior of my main doctor, wandered to my bed side and pulled the blue curtain behind him to give us the illusion of privacy in a room shared with three other patients. “Ah, right, so we’ve got the results from the biopsy in,” he ventured with a moment of eye contact. “Looks like lymphoma,” he said, leaving the words to hang in the air.

“Holy moly,” I thought. “This is the news. This is the cancer. This is the thing I’ve been mulling over for days. And I’m here on my own reading The Economist contemplating my breakfast order.” I kept my calm and let the news wash over me. The process may have lacked ceremony, but it was information I’d been craving.

I imagine patients react in all sorts of different ways to been told news like that. Some rush to anger, others to denial and others to grief. Some, like me, head to curiosity. Perhaps it’s a defence mechanism, but to put some emotional distance between me and the problem I was confronting seemed sensible. If I could treat it like a tricky problem of logic rather than one of life and death, that might make it more bearable. So quickly I jumped in with some questions. Do we know what caused it? Do we know if it’s spread? How do we treat it? What do we do from here?

Understandably at this early stage the answers to most of those questions were beyond reach. We were looking at a non-Hodgkin lymphoma, a comparatively common occurrence. The cause would likely remain elusive, but treatment was definitely an option. Beyond that, I’d need to wait for my haematologist, who would come by later in the day to fill me in on more details. My wife returned to by bedside for the tail-end of the conversation and caught the details. Then the young doctor headed off to break other life-changing news elsewhere, and left us to mull over the realities of my new existence.

Right. So this is not a drill. We can now discount the fantasy that this is all a big mistake and that I really did have a sore throat best treated by gargling lemon tea and honey. This was lymphoma – a cancer – and if I didn’t fight back it would destroy me. I was facing a test of character as well as health, and it would take all of my inner resolve to meet that test. My wife and I shared a tender moment as the situation sunk in. The Economist didn’t hold nearly as much appeal as it did a few minutes earlier.

The next few hours was a daze as we waited for more information from the haematologist. We spread the world to the people who needed to know and sought to gather some information of our own from the internet and other experts that we knew. But knowing so few of the facts at this stage meant the search was fruitless. We would have to wait.

So instead we sought to map out what this would all mean. A change of lifestyle, a change of career plans, a test for relationships with wife and parents, an abandoned holiday plan, a hit to personal finances. All these ripples of consequence emanating from the stone (well, mediastinal mass, really) that had been chucked into the pond of my life. It was disturbing to think of all the sudden change, but then strangely comforting to know that there would be so many people around to help my with the transition.

That afternoon we met my haematologist, the blood cancer specialist who was there to cure what ails me. My charming doctor filled my mother and me in on the detail. This was a non-Hodgkin lymphoma, he confirmed – primary mediastinal B-cell lymphoma, to be precise. Yes, it was unfortunate, but it was also reasonably common and quite treatable. He presented me with a page from a recent report from The New England Journal of Medicine on that particular lymphoma, which included the eye-catching claim that a survival rate of 95 per cent over five years had been achieved with a particular course of treatment.

Chemotherapy would be the course of treatment for me – six to eight rounds of three weeks each. It would be a cocktail of chemicals administered intravenously, complemented with some oral medications to ease the side-effects. He ran through the different drug regimens on offer like a cocktail barman – there was R-CHOP and EPOCH and a few others, each with subtle differences. He had one in mind, but we weren’t sure quite which one it would be.

If I wanted it, treatment could be at the new cancer centre attached to The Canberra Hospital, adjacent to the very building in which I now sat. Here they had leading care, leading facilities and leading nurses, and an army of specialists willing to work together to help me battle the beast. Sounded pretty good to me.

It was then that I ventured my most na├»ve question. I had not altogether given up hope of following through on a long-planned trip to Hawaii to celebrate my mother’s 60th birthday. Would it be possible for me to go on the trip and then return for treatment? The doctor looked at me through disbelieving eyes and suggested that would not be wise. Treatment should start the following Wednesday, and I should get myself ready for it.

Game on.

It was such a joy for Mel and me to come home to a goodwill hamper from a great friend.

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