Unable to speak…

Unable to speak, I could only scribble short messages on writing pads my wife provided. During the day she would transmit my questions and requests to the nursing and medical staff. But looking over those notes, which my wife saved, I can see that constantly scribbling messages, many of which were of no conceivable importance, was my desperate attempt to maintain contact with the world. At night, when I seemed most in need of ventilatory support and suctioning of my mouth and respiratory tract, the nurses would try to understand my written requests and do their best to comply. My neck pain was often severe. I asked for the least amount of morphine to relieve it, because I wanted to remain alert. I feared morphine would suppress my respirations and increase the possibility of pneumonia. However, the record shows that in the first two or three days I received considerable sedation and morphine.

Despite the medication, my physical distress and utter helplessness made these first days in the ICU a terrible ordeal. I survived by concentrating on each physical problem. My life hung in the balance, as did the risk of quadriplegia, but I did not think much about these threats because I was totally concerned with relieving my immediate symptoms.

Worst of all were the endless nights. I slept very little and spent most of the time watching the minutes go by on the big wall clock in my room, waiting for daylight and the return of my wife, and other family members. They tell me that I seemed more affectionate than usual; perhaps it was because I needed them so much.

In “On Breaking One’s Neck” (The New York Review of Books, 6 February 2014), ninety-year-old senior physician Arthur Relman describes his experience of the hospital system.  Critically ill after a fall in his home, he has had a tracheostomy and describes the “physical distress and utter helplessness” and the “endless nights”.

Two-and-a-half years have passed and yet I vividly remember “watching the minutes go by on the big wall clock” and, when I finally dozed off, waking to find that only three or four minutes had passed.

Rachel’s lovely life

My friend Rachel passed away yesterday.

I only got to know her earlier this year, through our blogs and through a lovely train of emails that I’ve just read back through.  She was so caring, thoughtful, generous and loving.  I admired her immensely for the way she dealt with recurrent cancer (breast and eventually brain cancer) and the way she cherished her little family.  In one of her emails she said: “I love how you ‘get’ the love for our girls, it’s so intense when you fear for your life, their beauty and innocence is simply magnified and I love being able to see it.”

I’ve thought of her so often over the last few weeks and I just realised I only emailed her yesterday morning to wish her Merry Christmas.

I only just got to know you Rachel and I’ll miss you and your wise, funny, beautiful words.

Zebras not horses

Among the things I’ve learnt on this crazy adventure is that I, and I alone, am truly responsible for my health and care. I can assemble a wonderful team, but I am responsible for following up, asking questions, and making choices. Much of my thinking on this crystallised when I read Jerome Groopman’s wonderfully thought-provoking […]

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The year mark

9 May was the one year anniversary of initial diagnosis. And today?  One year since THAT surgery. iPhone shots, early morning, 1 August 2012 No filter, just the glorious morning light in our apartment Necklace from Danielle 

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One year

Today marks one year since I was diagnosed.  One long, testing, amazing, roller-coaster, reflective, challenging, herculean, interminable, silver-lined year. On 9 May last year, my mother had spent the night with my grandfather, my last surviving grandparent, as he died.  I saw my dentist at 8.30am and, within an hour, knew something was wrong.  Very […]

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Low threshold

When I last saw my plastic & reconstructive surgeon, one comment stuck with me. Have a low threshold, he recommended. We were talking about recurrence and monitoring.  I have a stabbing pain in the joint just below my ear and I’ve not had a scan – xray or CT – since December.  If I’m worried […]

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Surgery photos

Are you ready?  These photos are in your face. Well ok, they are in my face. And yet, I wasn’t shocked.  It must be surgery-fatigue.  I’m not even shocked anymore. But I didn’t want some poor soul happening upon this site by accident and being greeted by my dissected neck.  With their morning coffee.  It’s […]

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It’s lovely to have you stop by. On 6 May 2011, I found a strange lump inside my mouth.  Three days later, my dentist sent me for an x-ray that confirmed a ‘cyst’.  The cyst turned out to be a tumour.  The tumour turned out to be ameloblastoma. The ameloblastoma turned out not to be […]

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Another surgery. And why not?

Today is one month since my fifth surgery.  Five surgeries in the nine months since I was diagnosed with a tumour on 9 May 2011.  (The precise diagnosis of ameloblastoma did not occur until later.) Sometime in late March, I will have my sixth surgery.  No more counting them on one hand.  Indeed, I may […]

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One week later

It’s been one week since the operation to remove the titanium plate from my jaw. This is how I looked on Sunday, the day I came home from hospital. The monochrome hides quite how awful I looked, but let me tell you the skin around the left eye was yellow and puffy. By Monday morning, […]

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