Here we go…

Standing by the window, I watch the first streaks of orange burst through the grey sky, making grey-black silhouettes of the trees which line the edge of the car park and the world beyond.  A solitary man, head bent, runs across the empty space, rushing to get into the hospital before the wind grabs him. The birds are only now beginning to wake.  I look at the clock – an hour to go – and wonder at the hours I have already been standing, still, heart beating, head swirling, rise and fall breathing.

Last night Craig dropped me at hospital.  I ran inside – a bit like the chap in the car park – eager to move, to talk, to smile, to ‘be me’. Two hours later, after both consultants had left my room, I was in no doubt about the hours and days ahead and the associated risks.  They had taken great care to explain in detail the various elements of the procedure, the order in which things would be done and the quite substantial risks attached.  They had even used my whiteboard to draw this out.IMG_6716  No burning question had been left unanswered.  Many responses left me scared and uncertain.  There were still unknowns ahead and they could not give me definitive and accurate responses.  I signed the waiver sheets, refused the sleeping pills they had prescribed and sat down to explore.

At crux times, when I cannot control and I can only react, I have learned to watch my mind dance in the fear.  It dances like a demon, hard and fast, twirling, jumping, pointing.  Questions like “what if…”. Worries such as “what about…” Imaginings around catastrophe, disaster, disappointment are all there.  But I also know, through practice, that this is just the initial stage, and that if I listen beyond the cacophony of noise, my subconscious brings the true questions, and many of the answers.  Am I strong enough, mentally and physically, to go through this?  Yes, I am.  Can I do anything different to change the cancer and the treatment I have chosen?  No I can’t.  Do I have the right team around me?  Yes I do.

And I let my mind settle enough to practice some deep breathing.  It’s just a change, a moment in time, I am fine, I will be fine, I can do this, I can visualise my way though to the other side.  I feel the softness of the bed beneath me, the quiet ticking of the clock is soothingly repetitive.  I watch the hands go round, ticking every minute forward.  My books lie discarded.  I look at my bag, neatly packed as if ready for my flight.  I think of others, collectively and individually, and I reach for my phone.  Jill’s voice soothes me, and the meta blessings at the end of her meditation session pulls me way beyond my current situation.Budda meta blessing

“May they be safe, well, at ease, happy and content and live their lives in harmony”.  I send this out to everyone that comes to mind.

I am calm now.  I recognise I can influence no more. It is what it is, until it isn’t.  I am on the surgery train; no stopping, getting off or pulling the emergency cord.  So when the consultant surgeon pops in to say hello and to find out how I am, I respond, “I’m ready, let’s get going”.

compression socksAnd to prove that you can never be too clever, outside my door is a poster on how to put on the hospital gown.  I had studied it the night before and managed to follow all instructions completely.  So, after struggling with the compression socks and eventually managing to get them on, the theatre staff are more than amused to find me keen as mustard and as pleased as punch, all dressed up but wearing my hospital gown backwards.  Apparently the poster is for visitors who are visiting infected patients. Only it doesn’t say this.  So I get ribbed mercilessly all the way down to theatre and have to endure the anaesthetist insisting I put the thing on the right way before he knocks me out.  And, they take off my knickers.  There is no dignity left.

knickers in a tree

 

Questions

curious childI learn a lot from my inquisitive child.  Never to give up if the answer I get doesn’t  make sense, to re-frame the question or wait to ask the same question at a different time or even to give the answer and ask the recipient what they think of the response (Roscoe is particularly good at this!)

So I’m sharing some of the questions related to my mouth Questionscancer which I’ve asked in the hope that they are useful for others in similar circumstances.

Initial Consultation

  • Tell me, in simple terms, what it is?
  • What is the best way to treat this for complete cure/eradication?
  • What is the length of this proposed treatment?
  • Are there any alternatives and if so what are they?
  • What are the pros/cons of these alternatives?
  • What are the side effects of the treatment you propose?
  • What is my survival success rate if we go ahead with your proposed treatment?
  • What are the long-term effects as a result of this treatment?

2nd Consultation

  • Will my HRT patch cause an issue, if yes, what is an alternative solution?
  • How does the tongue work ? (I asked this because of my mouth cancer and I wanted to start visualisation and memory recall)
  • What are the odds/chances of me needing a tracheotomy?
  • What can you do to avoid me having a tracheotomy?
  • What level of scarring will there be?
  • Where exactly will you take skin grafts from, are there any options on this?
  • How many dressings and wounds will I have immediately after surgery?
  • Will I need a feeding tube?
  • How much pain relief will I be given?. Can this be self-administered?
  • Will my taste buds be affected?

During Surgery

  • How much physical manipulation of the body is there likely to be?
  • Which part of the body will have the most trauma?
  • What risks are involved?
  • What can I do now to enable the operation to be a success?

Post surgery

  • How do I communicate with the nurses if I’m unable to speak after surgery?
  • What can I do to help the healing process?
  • Are there any spousal counselling services available?
  • Are there any camouflage make up sessions available?  (asked because my scarring is visible)
  • How much speech therapy can I have?
  • What guidance can they give to stop a re occurrence

– dietary guidance

– lifestyle guidance

– well-being guidance

  • How often will my dressings have to be changed?
  • Can the dressings be changed locally?
  • How long is it likely to be before speech returns to normal?
  • When can I drive?
  • How often do I see the consultant surgeon?
  • How often do I see one of his team?

On returning hometraveling-returning-home

  • What changes in my mouth do I need to look for that should have me worried?
  • What medicines do they give me to take home to manage the pain?
  • Can I get my neck wound wet? (I was worried about hair washing!!)
  • When will the plaster cast on my arm come off?
  • How do I best protect the arm wound?
  • How do I minimise the scar damage?
  • Do I need a special cushion for being in the car?
  • When do my neck stitches/arm stitches/tummy stitches/ mouth stitches come out?
  • When will we have a longer term prognosis?
  • Who do I call if there is a problem?