Dealing with Doctors

Update on my plea to NHS England to save my life

Posted on Apr 30, 2015 | 23 comments

Update on my plea to NHS England to save my life

Today, I received the call from my doctor that I’d been waiting for, that all of you – my friends and family especially – have been waiting for: My second transplant has been approved by NHS England. The past six weeks have been some of the darkest days of my life. That so many of you got behind me, including hundreds of total strangers, was completely overwhelming. I am very grateful. But, the truth is the real heroes here are my doctors, who pressed for this treatment despite it being expensive and only given in very rare circumstances. They toiled behind the scenes on my...

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An open plea to NHS England

Posted on Apr 28, 2015 | 50 comments

An open plea to NHS England

Two years ago, my world fell out from under me when I was diagnosed with Acute Myeloid Leukaemia. I had no idea. The day my GP phoned and asked me casually if I might be able to make my way up to King’s College Hospital that afternoon for further tests, I had been on my way to the leisure centre. I continued on and swam 30 laps before I arrived. When the doctors told me, the first words out of my mouth were, “But, I don’t have life insurance.” I felt a dread, as if Death with his scythe, lurked just behind me. “My children,” I thought over and over again, “my children.” It was...

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Why I love my half-brained baby

Posted on Dec 1, 2014 | 6 comments

Why I love my half-brained baby

Praise be all parents who lovingly pack a hospital bag for their child knowing they will be wheeled into surgery the next day. On Sunday night, I packed up my daughter’s clothes and nappies and all the essentials — plus her Minnie Mouse pillow and treasured, baby blanket — for her hip surgery the following day. Finally, I packed her favourite toy, a monkey music toy. On the bottom, I wrote in big letters “Property of May”. Last time she had surgery, someone took her monkey toy and placed it in the black hole of the children’s toy room in the ward. I...

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Upcoming hip surgery grrrr: Part II

Posted on Nov 23, 2014 | 1 comment

Upcoming hip surgery grrrr: Part II

It’s a universal truth that all parents want to receive as little information possible about their child being cut open and stitched back together. Right? Oh, joy. It’s surgery season. May will receive surgery on her hips this coming Monday. Previously, you may recall that the hospital was refusing to allow us to do her blood test at our local hospital. They relented, thankfully. What would have been hours in the car and pushing her across the length of a huge hospital when I am weak and my immune system is suppressed, turned into a 15 minute drive and 30 minutes in the hospital....

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What’s happening to May’s hips?

Posted on Nov 11, 2014 | 2 comments

What’s happening to May’s hips?

A year and a half ago, May had a major hip operation. She recovered well. There were some lingering issues — like she still crosses her legs and you can see one of the metal pieces holding her hip bone in place under her skin. Not nice and not ideal, but much better than the pain she had been in. Why did she need surgery at three years old? You probably shouldn’t read this if you are squeamish. In recent months, May has not been doing as well. At the time of her dental surgery, we suspected her pain wasn’t entirely in her mouth and that theory has been proven right. She can...

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