Posts Tagged "nhs"

My husband is literally giving the shirt off his back

Posted on Jul 31, 2014 | 0 comments

My husband is literally giving the shirt off his back

…and swapping it for an Anthony Nolan Trust one. And here he is! Wearing his brand new Anthony Nolan Trust racing top for the charity cycle he is doing in my name. It’s my last day of the first round of my new chemotherapy – one week on, three weeks off. To say I’m thrilled to see the back of this place for a few weeks is an understatement. The chemotherapy day unit is one of the most depressing holes I’ve had the pleasure of being made to wait three hours for a five minute treatment in. Or, spa treatment as I insist my doctor calls it. Which she does. Why not...

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Retrieved from the post office today…

Posted on May 1, 2014 | 0 comments

Retrieved from the post office today…

Retrieved from the post office today: one package too large for the slot in my door addressed to May. A late birthday gift? No. Six nappies. May turned five a week ago. That is one year since she was eligible for free nappies (AKA diapers for my American friends). A year of nappies we have purchased for May, at our expense – and in return, SIX. Children in the UK who cannot be potty trained receive free nappies on the NHS once they turn four. And so, I find myself with six nappies. For the past year, I’ve been begging for… six nappies. I should add the package, which I...

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For once, the kind of madness you’d vote for…

Posted on Mar 3, 2014 | 2 comments

For once, the kind of madness you’d vote for…

Mama Lewis and the Amazing Adventures of the Half-Brained Baby has been nominated for a MAD Blog Award. Want to help us to win? Consider this: In the last year, this blog: fought the supermarkets and won shopping trolleys for disabled children across Britain. helped families with special needs kids to visit London’s attractions in the series Kids All Access… London. shamed the councillor from Cornwall who thinks children like May should be put down. started a petition demanding Florida not lock away children in old folks homes just because they are disabled. battled through...

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When there is no answer

Posted on Feb 28, 2014 | 5 comments

When there is no answer

A couple of weeks ago, a professor running a vision clinic drew my attention to my daughter’s eyes. Her beautiful, big eyes. “She has very large corneas,” he said. “Do you know what happened to May? Has she been seen by the geneticists?” She has. In fact, she’s had two MRIs, many brain scans of various types, three lumbar punctures to her spine, blood tests (hundreds?), genetic photographic testing (where they examine her facial features) along with tests for Strep-B, infection and vitamin deficiencies. They’ve revealed nothing. “How was your...

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It’s three weeks post-transplant and…

Posted on Oct 23, 2013 | 12 comments

It’s three weeks post-transplant and…

I’m home! I’m home, I’m home, I’m home… (that last bit was sung but thankfully for you I don’t include audio downloads on this blog) I was meant to stay in the hospital for 4-6 weeks, maybe longer. I was out in three. That makes me some kind of superwoman. I don’t exactly feel like a superwoman. I feel pretty ill most of the time. But what a result! I am back at home with my May-May and Ieuan and husband and I’m loving it. May didn’t even have time to visit me in the hospital. The day we planned for her first visit was the day they...

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