Scheduling cancer

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.

group of medical doctors and nurses

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.vyne-estate-map

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.IMG_6622

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.exit stage left

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.

 

Meeting Silvana: through the looking glass

As part of my need to feel in control I’ve wholeheartedly embraced all alternative therapies. Well, I’m not wearing musk yet, my hair is not in braids and it’s too cold for jesus sandals.  But I’m doing virtually everything else.Hippy_by_Jinxxxi

Part of this philosophy is to use the cancer to treat the cancer.  So when my homoeopath suggested I ask for a slide of my biopsy, I took great pleasure in crafting a finely tuned missive to the PA of the consultant surgeon.  I wish I’d seen his face when he read it!

At our meeting with the team involved in my surgery, the consultant surgeon pushed a piece of paper with some scant instructions into Craig’s hand.  ‘Pathology 2, Dr Di Palma’.  It was made clear this was an unusual request.  Undaunted, we set off on our new hospital adventure, to find the ‘path 2’ building.  At one particularly confusing turn – neither Craig or I are blessed with a great sense of direction – we met a delightful old dear who had worked at the hospital for many years.  She was very keen to know where pathology lab 2 was located herself and, after asking directions, she took us into the bowels of the building, popping us out – like Alice and the white rabbit – next to the main incinerator. She then scuttled off, delighted with her new morsel of knowledge.Alice handles the white rabbit

‘Path 2’ is a modern building by Royal County Hospital standards, and after pressing the array of dizzyingly labelled buttons (none of which mentioned pathology directly) we were let in by a workman welding a paintbrush.  We came to a floor that had a tiny little Christmas tree and a bell. A young girl appeared, proudly wearing a knitted Christmas jumper, and was startled to see “real” people  in the building! She made a couple of calls and led us down into the basement, along a narrow newly painted corridor and into the offices of Doctor Silvana Di Palma.

This was the moment where I absolutely, knew I was going to be fine. As she ushered us to sit down I looked at this powerhouse of a woman and was totally impressed. From her perfectly coiffed hair, to her beautifully made up face, to her Dolce&Gabbana heels and chic fitted outfit, this woman oozed class and passion. And she was interested in me and what we were going to use the slide for.  She unwrapped it carefully from its paper and presented it to me solemnly; “the cell is cut on the diagonal”, she intoned, sounding like a cross between Sophia Loren and Gina Belluchi. “The pink pieces are healthy, the blue rings are carcinoma”.  She paused.  I could find nothing to say.  I was looking at pink blobs and blue blobs, and desperately wanting to impress her.  My mind itself had turned into a blob!

She seemed to sense that I did not share her passion, and my diplomatic husband valiantly came to my rescue by asking about the black and white photos on the wall.  They are her childhood village in a small part of Italy near the Umbrian mountains.  Smart, talented, beautiful and grounded; I wanted to ask her round for dinner!

So, as a scientist she wanted to know specifically how we were planning on using this slide.  I waffled on, talking nonsense, seeing my new best friend evaporate before my eyes.  Eventually I blurted, “I don’t know how it works, I don’t care how it works, what is important to me is that I’m doing absolutely everything to eradicate this and make the cancer go away”.  She patted my hand and gave me her email address.  “Stay in touch”, she said.  “I understand and support you in what you are doing and I’ll look out for your cancer cells and deal with your case personally”.

I am going to invite Silvana for dinner, along with my smart, bright girlfriends.  We will have much to talk about; I’ll be happy to discuss colours, just not pink and blue blobs!