This is the first of an occasional series of articles that describes a journey of a battle with cancer. The articles are anonymous but I hope that the words within them and the snippets of observations that are already appearing on my blog will help someone in their fight – whether they are on a similar journey or know someone on that journey.
Cancer is a journey that doesn’t only affect the patient. It affects every person around them. In particular partners and close family. To this end, my partner also intends to write and publish occasional articles that tells their story. The topic will be the same. The angle of the lens and the filter will be very different.
Doctor: “With this treatment, your skin will definitely get thinner and maybe your hands will get weak.”
Me: “After it’s all done and dusted, will I be able to play the piano?”
Doctor: “Of course, no problem at all.”
Me: “That’s amazing, I can’t right now!”
It’s an old joke, but clearly, not one recognised by the doctor I was talking to, who eyed me quizzically. I started laughing and she caught on … moving on to rephrase what was just said …
Your piano playing capability will be no better or worse than your current expertise once this process is completed.
I highlight this small story as I reflect on where we are. Let me explain.
Cancer is no joke. But throughout my life, I have found that humour is an excellent ice breaker, if not a great ‘weapon’ to disarm people. To take the seriousness out of the process. To lighten the subject matter.
Health professionals see so much of this and people react differently, such as by ‘curling up’, move into denial, and makes it very hard to engage. The seriousness of what is going on almost consumes them. It’s hard. Very hard.
Outside of the professional teams, it is interesting that when news like this breaks, how most people react by their voice ‘dropping a tone or two’ – along with the ‘volume of their natural speech’ and pull out their ‘I’m so sorry voice’. They then move on to tell you ‘not to worry’. That ‘everything will be ok – you got to stay positive’.
Curiously I am. Since getting the news, I think all I have done is been positive.
“I know – but you have to stay positive.”
I listen silently. I find myself laughing and making light – almost to help put others at ease – even as they then move on to words like;
This is your journey. You must follow your own path …
.. and then move on to describe experiences that have had – either personally or what they have witnessed family and friends go through.
Wait – what relevance is that to me – I thought this was my journey? Didn’t you just say every journey is different?
I get it. I really do. People do not know what to say.
I am being careful with who I share this news with, partly for that very reason. I just do not want to be inundated by platitudes and ‘prayers to you’ messages. I just don’t’, but in later articles, I will share words from friends that don’t take that line. That speaks from the heart.
For example, this message really moved me – though as my friend surmised, I am not cut from that cloth.
Whether or not a “higher power” is something you embrace, it matters not – as we will keep you in our prayers of hope and healing, my friend.
And the funniest message received said;
What’s the equivalent here of “Break a leg,” I wonder?
I grabbed a couple of apps that people told me I should use during this process. Calm and Headspace. Early days yet, but interesting that Headspace has a ‘Cancer Program’. I hope to talk more about these in future articles – along with things I am doing that help me. (I do need help … I might be joking with people, putting them at ease – but I do not miss the seriousness of what I have.)
When I got the news, I reduced the diagnosis to ‘Throat cancer’. I was talking to someone and explaining the situation. Their response was to correct me and point out that I was making ‘the same mistake’ as Michael Douglas. (You see what I mean about people?) I knew the actor had been through something like this a few years ago – what I hadn’t understood was the backstory.
So yes. OK. Not throat cancer – tongue cancer.
The best estimate is that this problem has likely been building up in my throat for over two years.
In that time, the tumour has had time to get settled. Established. I recall having odd issues with swallowing/digestion of pasta and bread at that time but wrote it off as a little ‘acid reflux’ and it never really came back, so under my personal health management program of ‘if it ain’t broke don’t fix it (and it didn’t seem it was), I didn’t.
And who knows if it was/is connected anyway?
That said, two years sitting in there, not doing anything, no visibility, it has had a bit of time to make itself at home. It’s down my throat and until I developed some mouth ulcers and one of my lymph nodes was swollen … well, nothing really.
That’s where the name of this series of articles and the sister website comes from The site isn’t about me, nor my specific cancer. It’s about all of us and all cancers. What we can do. What we do do. When the unexpected slaps us in the face, how do we react?
In future articles, I will comment on my observations of what goes on around me. It might well get more specific to my story since what I have is very specific. Not many cancers require a mask to be made by moulding a mesh to your face, so your head can be locked into position while they pulse radiation into your throat! Other cancers will have their own specific personal and medical impact. I won’t write about them because I don’t know about them.
That said, I hope to highlight and talk about personal observations on my journey that will resonate with large numbers of people. Maybe even help.
For example …. things like the science of the treatment where over a period of weeks my entire head and neck have been scanned. With that scanning, a full 3-dimensional representation of my head is now stored in computers – alongside the size and current growth rate of the tumor – so that – starting today – I will have daily radiation pulses shot into the tumour from different angles, in different places, with different levels of intensity for two months. Doctors, Computer Scientists, and 3D Physicists worked together to build the treatment program. Not to mention those that designed and built these machines and associated software. The entire technology program behind this process is extraordinary.
Meanwhile, I also know that today – when I go to the hospital to have my first treatment – I will fill in a piece of paper using a pen, declaring my name, address, birthdate .. as I will on every other daily visit over the next two months.
That’s it for now – hope to see you here next time.