Getting out and about

Over the last couple of weeks I have been leaving the house more. My friend Daphne made a huge sacrifice and abandoned her husband and 14-month old son to fly transatlantic and spend a week looking after me. They weren’t so much abandoned as well looked after by grandparents but it is still a tremendously kind thing to do. It was a week filled with laughter and we even managed a couple of lovely outings while she was here. Each was a logistical nightmare as I can’t see well and still need help to walk and navigate so wasn’t much help to Daphne who drove a manual hire car brilliantly and most of the time was on the correct side of the road.

I had a rather depressing meeting with Dr H where we talked about my inability to go out in crowded places. He explained that when confronted with a sensory overload (which frankly is two things at the same time – listening to the radio and trying to have a conversation, talking and walking – I have a new found empathy for Gerald Ford) my brain doesn’t know how to process the information and just shuts down. So when I’m in crowds and people are walking towards me, I just freeze in panic.

I also told him that I can’t remember things, especially important dates (I have missed a few birthdays lately – sorry) and I can’t multitask. His diagnosis? “You’ve turned into a man.”  It is lovely to have a laugh with one’s physician but on a more serious note he said I shouldn’t worry and just write a list. He said I am a “new me” and I won’t ever be totally the “old me”. I need to reflect and consider what the “new me” can do whilst celebrating the little things that are “old me”. Hmmm I shall have to work on that one.

After Daphne’s tearful return we went to Belgium with Adrian’s family to celebrate his Dad’s 70th Birthday. Adrian did all the driving and I slept the whole way there and back. We had a super time with lovely food in a place called Ave-et-Auffe which is pronounced ‘ave-it-off. Negotiating hills and cobbled streets was challenging, but the scenery was beautiful and it was my first night away since hospital so it was good to prove we can do it.

Last week my Dad took me to the Gauguin exhibition at the Tate Modern for my birthday treat. No-one realised the irony of taking a blind woman to an art gallery until we arrived. I had my nose pressed so close to the paintings I was in danger of setting off the alarms but it was worth it – it is a wonderful collection of his paintings, sketches and letters from his travels around the world.

Next week I am back at the JR for another MRI after which my team should decide on the next phase of treatment. My hair is growing back quite well. Now rather than an undercut I have more of a mullet. Still there is seven months to go until the wedding and if anyone knows of any Miracle Gro for hair, please let me know.

My mullet

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