Sunday 10 April 2011

How the hell did I get here?

In mid-October 2010 I was at my wife's cousin's wedding. It was a nice day and I recall clearly carrying my 5 year old son, Charlie, on my shoulders. By the end of that month and the arrival of the half term holidays I could hardly pick up our more diminutive three year old daughter, Alys, without my whole body shaking, particularly my legs. But those memories have only been recalled in more recent times as doctors have struggled to put together the jigsaw of a diagnosis.

What was apparent at the time was the daily struggle to get from my car to my office, a walk of no more than five minutes. Each day it became progressively more and more of a hardship as after a few steps away from the car one foot started to drag behind the other and my legs started to feel as though they were full of lactic acid, almost as though I had run a marathon the day before.  Of course, I'd done no such thing.  My office is on the third floor and involves ascending six flights of steps. These became more and more challenging as I encountered them each day after an increasingly difficult walk from the car. The stairs took on a new significance for me. Until only a few weeks ago they had always represented my daily dose of step aerobics and I usally went up two at time with a verve like spring. Now they became the daily challenge, a challenge that I refused to be beaten by, despite the searing leg pains as I struggled on each step.  By mid-November I was unable to rise to this challenge and I was using the lift. By the start of December my boss was so worried about my daily struggle from the car, she got me a disabled parking space that was much nearer the lift. By January I could only walk with a stick and a few weeks later I was only able to walk with a frame.  On 23rd March I er, "celebrated" my 50th birthday on a bed that I had been unable to get off for a week and I now can only move around in a wheelchair.

After a period of hospitalisation in Oxford and a myriad of tests, biopsys and scans, the diagnosis is POEMS syndrome. You can Google this and you'll find a lot of information but in a nutshell I have a problem with the production of stem cells in my bone marrow which in turn is confusing my immune system into believing that it should attack my nervous system.  I'm now having daily shots of a drug that will increase stem cell production and on Tuesday I go back to hospital for a few days so they can harvest the good cells.  In the next few weeks I'll then go back and have a massive shot of chemotherapy in order to destroy the bad stem cells. As the good ones will also be wiped out in the process, the good ones that will be taken later this week will then be transplanted back and that should start a recovery process.

So that's where I'm at and how I got here. I will write in a few days when the stem cell harvest takes place. The fight back has begun!

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