Consultant surgeons are like CEOs of multi national companies; they have their own ideas and foibles and inevitably they are followed slavishly by hordes of invariably bright, handsome and pretty young things.
So it is quite intimidating to go into a consultant surgeon’s office and watch him struggle to say, “you’ve got cancer”. But we had 4 days to get our heads around it, so when it came out of his mouth the Scottish black humour descended and our jokey response was obviously not what he expected. He talked about millimetres and clearance and going for complete cure and slicing and dicing. And this bit and that. And 10 hour major surgeries. And blah. But it was obvious that once the mechanics were out, the conversation was going to be uncomfortable. In this moment we were 3 humans trying to connect around the C word. I wanted dates and schedules, Craig wanted reassurance, and the consultant surgeon wanted the conversation to be over! It was harder for him than for us – he knows what’s coming – and I wanted to give him a wee cuddle as we were leaving; it’s obviously a horrible part of the job and not one that gets any easier.
We left his office in a state of giddy excitement and, on reflection, shock. We were off to make a plan. I love a good plan! So off we went to the woods. In the teeming rain (honest, I’m not making this up!). And in this one long, wet walk we formed the basis of our approach.
Plans should start with some governance – who is doing what and making what decisions – and principles. Our number one principle is that, as far as humanly possible, nothing would change for Roscoe. He’d still go to the same clubs and activities. We would still be on the same sidelines of the same football pitches. And that, barring a couple of days, all things would be as was. We also agreed that he was never to come to the hospital, not to visit or attend any hospital appointments. Another principle was to use the word ‘cancer’ when telling him, and to use the consultant surgeon as our communications model for this conversation. Simple, factual and geared to Roscoe as the recipient. We also agreed that we were outsourcing the cancer to the consultant surgeon. We didn’t want statistics and details, we wanted hope and outcome thinking.
At no point in this discussion, or any other we’ve had, did I ever doubt Craig’s love for me. From the get-go we were in partnership on this; maintaining this lockstep gives me rhythm, and his sense of humour brings me real tears of laughter and joy. This bedrock of togetherness gives us both strength, and all big decisions we make together.
We made a ‘stakeholder list’. Who did we need to tell because they were part of the support/back up team, who did we need to tell because they were precious to us and who needed to know from a work perspective. And in what sequence did we need to share the news. Sometimes these conversations were really hard. I learned as I went along to say “I know you love and care for me, please don’t express this right now as I need to keep it together”. To a man and woman they all offered help and support – whatever we needed and I was left in awe by the generosity of spirit that adversity brings. Often these conversations were snatched moments in car-parks and shopping malls and for this I can only apologise. The best way to describe this period is the dark half-life – the one where you are there, but you’re not.
But there were also other moments and conversations which helped shaped the life ahead. Speaking to Andrea – the young Mum from the next door village – who two years previously had been through the same procedure was incredibly helpful. Those three hours of crazy questions, from what clothing to wear based on how much access to tubes and wires they needed, right the way through to how to wash hair, loss of sensation in hands and neck, how to deal with scars and healing, reshaped my approach. Andrea and I are very different but our overall attitude is similar; let’s sort it, learn from it and move on. Cancer does not define us and who we are.
From the Andrea conversation I called back the consultant surgeon. Could I have more time? I had more questions. He saw me that evening. Craig, running from work early so he could be there for Roscoe’s club, made sure we lived our first principle! My questions were wide-ranging and holistic in their nature. I explained that my approach was not to question him on the cancer itself – this was his job to sort – but that I wanted to look at the whole system, both in terms of change itself and of the support on offer. What could I do in the future to prevent a re-occurrence? What could I do to make his job as easy as possible (‘weight gain’ was not what I wanted to hear)? What did I need to do differently? To be told that I didn’t present as a normal case (non-smoker, light drinker, no HPE virus) wasn’t really what he wanted to say, or what I wanted to hear. Somehow it’s easier if there is something, or some behaviour, to blame. I told him I am focused on the superficial – the scars, the location and treatment of scars – and wanted to know about camouflage make-up, counselling for Craig and general support (none available). I informed him he was part of the outsource plan – to get rid of the cancer. By this point he was so far back in his chair he was practically horizontal and the power distance between us had changed. He didn’t want to discuss alkaline or acidic diets (no proof), the location of skin grafts and scars were non negotiable (well I’d like the option to wear a bikini again), speech therapy and dietary advice would be provided by specialists in the hospital (I could get access to these as often as needed but don’t bother him with these questions) and complementary and supplementary health treatments were not part of his repertoire.
Mid way through the conversation he threw a curve-ball “what was my degree in?” My response “I’ve a Masters in intercultural communications” seemed to really confuse him. I followed up with “if you were Spanish or Italian or French or something exotic , you would understand but as you’re English please don’t try. What you need to know is that is my degree is not science based” In this moment, he was the Martian and I truly spoke from being from Venus! There was no right nor wrong, just two different languages trying to find some similarity and a base to move forward. He regained some comfort level when I asked about how the tongue functions, so I could work on memory recall and visualisation. But then he heard my non specific use of such knowledge and started to emanate all the classic signs it was time to go.
What did I really learn?
That he is the regional cancer specialist for the head, neck and throat and that is his job. This is what he’s brilliant at. So I am in the hands of a specialist. A well-trained, knowledgeable and skilled expert.
I am in the best hands to get rid of my cancer.
