I’m hesitant to say the words but in the main I’ve had a settled time with my health. I’ve a million smaller complaints and I have tried to thole them. Just build them into my normal and accept that someone in my position will have many symptoms and that chasing all of them is the way madness lies.
When Beverage planned the NHS he thought that if everyone had access to free healthcare at the point of need then the need for the NHS would decline. But instead he discovered the onion principle. That as you peel off one layer of illness the another emerges.
And that’s what I’m like, I get on top of managing one problem and symptoms from something else emerge. I’m almost embarrassed to talk about the long list that affects me.
The truth is distraction helps at least initially. But the trouble is……..at night it’s so different. I’m less sheltered from my daily reality. And I’ve noticed that time seems to pause or stretch each minute. Sometimes I awaken around 11 having slept for just over an hour and fear encompasses me. Is this my night ahead? Checking the time and groaning in pain whenever I change position. My back has been so troublesome that at my last hospice appointment I asked for a massage from the therapist. What a good move that was and frankly it’s not been as bad since then. It’s always a plus to find a non drug solution.
I’ve also had the chance to talk about my book with a group of health and social care professionals. It’s such a buzz to hear what the book stimulates in others. I’m booked to speak to a book festival in the summer and a local compassion salon. It’s exactly what I hoped would emerge. I miss working, especially coaching and developing policy from those with lived experience so any chance still to do that is just wonderful. Here’s a link to the book to buy . https://www.ebay.co.uk/itm/394965421080 It’s also available on kindle https://www.amazon.co.uk/Journey-Better-Times-long-term-conditions-ebook/dp/B0CM82XJTS?dplnkId=9bd2d467-50e2-48a6-8431-414798dceaaa&nodl=1
And the final treat for me was the hospice newsletter covering my story and putting my photo on the front page! Thanks so much to that team for totally understanding what I’m trying to say in my book and giving me a platform for it.
Because they know that although I have stage 4 cancer and my future is uncertain, I still have a contribution to make and that makes this special time in my life even more precious. I start my book saying I wish that people will read the book and find hope and purpose from it.
It’s certainly given me that…..thanks to all of you who have enabled that.
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