Visit to Edinburgh Book Festival in August 2018

My husband and I visit the Edinburgh Book Festival every other year or so, and were back again last week. We’d booked to go and see a talk by Brian May and photographic historian Roger Taylor. But I was also keen to see the bookshops again, which I always find excellent.

This is the first year that I’ve found the crowds a particular problem. I have to use my wheelchair when I’m there, with my husband pushing, and this year getting past other visitors, who’d often stop to chat in the walkways, was a significant problem. I don’t know if there were higher numbers of people attending this year, or what, but it seemed more of an issue than usual. Note we were there on Wednesday 15th August, in the late afternoon and early evening.

I was also struck by how difficult it can be to get the wheelchair into the tents, bookshops, talk venues etc. There’s always quite a slope to go up, and a ridge to get past or bump over. I could never wheel myself in. Even my husband, who’s been pushing my wheelchair for years, struggled, again not helped by people milling around.

On the plus the bookshops were a delight. I always find things there that are real gems for me, that I wouldn’t know of otherwise. My particular highlights this year included a book of 100 Gaelic WW1 poems, most of them written during or shortly after the war, with dual language Gaelic and English translations facing each other in the book. My other main highlight was finding a book of essays by Philip Pullman about storytelling in its many forms. I was reluctant to buy such a chunky book – I have too many books already, and wondered where I’d shelve it! But it drew me back, and I was very pleased to take it away and delighted when I started reading it. Something else I’d have bought before had I known it existed.

Book haul from Edinburgh Book Festival

The talk by Brian May and Roger Taylor was fantastic. They were speaking about Scottish Victorian stereoscopic photographer George Washington Wilson, and launching Roger’s book about him. The audience were all given 3D glasses to wear, which worked from a vast range of seating positions, and enabled us to enjoy the original stereoscopic photos. Quite magical, and enormous fun. Sadly Brian and Roger couldn’t do a signing afterwards, having to dash off to a BBC interview, but we were all offered signed bookplates to go in the book.

Audience at Brian May and Roger Taylor talk (photo by Nicole Ettinger and from Brian May on Instagram)

So a fun trip, but some disability niggles. We’ll be back in future, but definitely with my wheelchair, albeit anticipating problems.

Read Full Post »

Chemotherapy and auto immune diseases

Was just commenting on a post in the Vasculitis UK Facebook group today, and reminded of the devastating daily nausea I had for years from Azathioprine. I started taking this drug in 1998 to control my life threatening neurological auto immune disease cerebral vasculitis. Basically the drug controlled the inflammation in the blood vessels in my brain, and kept me alive. Azathioprine is a very old chemotherapy drug, though not just used for cancer, but also auto immune diseases like mine. It’s quite mild, but it can cause the horrible side effects. I would feel sick within 90 minutes of taking the pills, and it lasted for up to 8 hours a day. Every day, for most of a decade. That’s what I lived with from 1998 onwards. Every single day. For some people the sickness goes away. Not me. I stuck with it because I suspected – rightly as it turned out – that all the cytotoxic drugs (including the main alternative drugs I could be switched to, and ended up trying later anyway) would make me hurl. Eventually, after another drug had been added to the mix in 2006, and I said I just can’t cope with this sickness from both, the medics put me on twice daily anti nausea drugs for life. That transformed my life. I wish I’d been on them sooner. Years later I had high dose chemotherapy infusions in hospital, which made me even sicker. But they only lasted a few months. Azathioprine went on for years. So yup, chemo and auto immune disease can be a stinker. And not just the obvious high dose infusions.

P.S. A point that I should add is that auto immune chemo patients don’t get the same support that cancer chemo patients do. We’re not given the same anti nausea drugs. Also no similar arrangements re free hospital parking for infusion days. But it can be just as tough. And a treatment that can go on for vastly longer.

Read Full Post »