A letter from Sarah, introduced by Ronnie.
Have you ever known anyone whose fingers were gradually curling up into the palms of their hands, couldn’t be fully straightened out and were getting worse over time? If you have they might have a disease called Dupuytrens Contracture. Actor Bill Nighy does, you may have noticed from his films, and so do a good many people over the age of 50, including Sarah Horton. Here’s the story of her hands and what’s been happening to them.
Everyone likes a happy ending and some good news. So I’m delighted to tell you that I’ve now completed treatment – on the NHS – for my Dupuytrens Contracture, or DUPS (a benign but frustrating hand problem, which is often hereditary, as it is in my case).
This week I had my follow up appointment with my NHS Consultant Dr Syndikus and we both agreed that I have had a good result. Good news. It was not so easily achieved though.
This week I’ve been here in the Linda McCartney building, the cancer treatment building in Liverpool. I spent many hours of my life here between 2007 and 2010, and a few since, but mostly in those early years when I became a breast cancer patient.
In February this year I wrote a post on here called ‘Ten Years’. Ten years since my diagnosis of breast cancer, reflecting on the anniversary, and also because I was trying to get access to treatment for my hand condition, and was meeting some substantial barriers to that.
My GP, true to his word, followed up my request to access treatment, and spoke to Liverpool’s most respected hand surgeon, Mr Brown.
(Note – this was a surgeon I couldn’t get an appointment with as an NHS patient, as the not-a-doctor ‘decision maker’ had decided I wasn’t eligible for treatment until my condition got considerably worse, and required surgery. Whereas in early cases of DUPS radiotherapy is now considered a very effective treatment, especially beneficial for the patient as it avoids having surgery, as recurrence rates of DUPS after surgery are significant – about 40% after four years.)
Anyway my GP got in touch Mr Brown, who then advised my GP him I should be referred to Dr Syndikus at Clatterbridge Hospital on the Wirral. She’s an oncologist, and one of her tools is radiotherapy.
I was at first told that I wasn’t a priority and may have to wait to see her – but Dr Syndikus and her team worked swiftly, and by mid May I’ve seen her and most of the team at the radiotherapy department in Clatterbridge. They have very expertly made moulds of both of my hands, and by the end of June I’ve had my two sets of treatment, two series of five sessions of daily radiotherapy at Clatterbridge. All of this was arranged in a most patient-centred way, and allowed me to continue my work as a self-employed funeral celebrant.
I cannot speak highly enough of the whole process and everyone in the NHS teams who looked after me. An extra bonus by the way, and in contrast to all of my years of breast cancer treatment, is they also have a free car park at Clatterbridge for all patients. Proper and caring like.
After my treatment things happens without me noticing why. I start knitting again. I hadn’t consciously stopped, but all sorts of things are now easier – sea kayaking, gardening, knitting, driving, most of my everyday activities.
On the day I see Dr Syndikus this week I leave the hospital, successfully signed off. Walking happily along the corridors that I know so well, too well, having spent hours walking them with Ronnie when I was a breast cancer patient here.
I leave full of gratitude for everything that happened to me here, including today, and I go straight to my beloved Abakhan, to buy wool for my next knitting project.
The normality of all this – shopping for yarn. So far removed from being a breast cancer patient. Then the normality of a breakfast in TJs.
Even the ‘strange’ day, the day we had this week of the yellow light and orange sun as we wait for the Storm Ophelia to arrive is still miles more normal than being a breast cancer patient and my hands are miles better than they were just a few months ago.
So it is gloves that are delighting me right now. I love knitting gloves, and especially fingerless gloves, my favourite type of glove. And I have a ‘glove cycle’ where my gloves are worn ‘for best’, they are then gloves ‘for walking’ and then they become ‘gardening gloves’.
Clearing, as you’ll know from Ronnie’s recent posts, is in full swing in our house at the moment. My last two pairs of knitted gardening gloves are about to find their final resting place on the compost heap. They have done good service.
The lilac pair came up to Knoydart with me but after a muddy tumble up there they are now ripped and beyond repair. My current gardening gloves are fairly worn, but still have some use in them yet.
Since I’ve finished my treatment for my hands though I’ve knitted myself some new gloves. A new pattern that I’ve wanted to try for a while.
I haven’t had the time, space or inclination to try this new pattern, and was put off by the new techniques of short row increases (written as ‘wrp-t’) and ‘three needle bind off’. Thanks to the recent clearing, I now have time, space and inclination, and the pattern isn’t as hard as I thought. (Note – clearing allows the projects you want to do to get started, it’s a magical effect).
Buoyed up by my success I even try another pattern with some yarn I’ve been hoarding which I have discovered during clearing – it’s a lace knitting pattern. After 16 rows, and a lot of frustration, I decide it’s not for me and so am able to clear that, plus the several lace knitting books that I possess – realising that I will never have the time, space or inclination to knit a lace shawl.
So with that out of the way I have time for gloves, yes, I have plenty of time for gloves. In fact it’s so pleasurable knitting that first pair, that I am already knitting a second pair, with the yarn I bought on Monday.
I had kept my hand moulds, as they seemed such an important ‘thing’. They are, or at least they were. But now their work is done they too are cleared. But thank you so much NHS.
Here at Plot 44, as you’ll also know from Ronnie, the autumn is arriving. I am grateful, as always, to be here to see it.
The geese fly across the sky in their ribbons and I hear them squawking. It feels normal for this time of year. And I am happy.