Tag Archives: knitting

Sarah’s Hands and Gloves

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, until recently, Sarah Horton. Here’s the story of her hands and what’s been happening to them.

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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. Continue reading

I remember you: For Rachel

rachelwithconifertree2

Rachel

Today a very personal post from my partner Sarah about her best friend Rachel, who died three years ago.

When Sarah was diagnosed with breast cancer eight years ago now, she fairly soon wanted to find her sisters. Other women who’d shared some of her experiences and ‘been in some of the same rooms’ as we always described those places and days of rapid diagnosis, treatment decisions and prognosis. Other women she could really talk to.

Well finding these sisters took a while, a great while. But eventually, through social media, into her life they came. Americans for the most part, and an Australian living in the States in one very particular, opinionated and lovable case. Rachel from New Jersey.

Their friendship was brief, as you’ll hear, but deep and intensely joyous. Their regular Skypes changed the sound of our house. And Rachel’s love brought the sparkle back into Sarah’s eyes. A spark and a sparkle the eventually ebbing grief of these past three years has never subsequently extinguished.

And of course Rachel and these years since changed my life too. Made me value the living of it more than ever before. But you’ll know about that already if you’ve read my ‘Year to live’ posts.

So here is Sarah, remembering Rachel. Continue reading

Liverpool essentials: TJ’s and Abakhan

TJ's in the mid 1990s, with pigeons.

TJ’s in the mid 1990s, with pigeons.

Two major Liverpool institutions in one day? Yes, it can be done. We’ll be visiting a few others before the day’s out too, so let’s go!

This is what me and Sarah call a ‘Saturday Ramble’ these days. A bit like the Friday Walks, but at some point Sarah usually does one of her ‘shopping exhibitions’ – as she will today. These rambles happen to give Sarah a deliberate day off from her funeral work. A lightly planned ramble where we go where our feet take us.

Beginning just off London Road.

Beginning just off London Road.

At Sarah's beloved Abakhan.

At Sarah’s beloved Abakhan.

Continue reading