Meetup

Last night B and I attended the London Meetup dinner for the Brainstrust charity. We were a bit hesitant about it as we’re nervous when meeting new people, but it was a really good night. On the way there I had a moment of uncertainty – what’s the protocol for an event like this? Is it acceptable to ask people details of their cancer experience? After all, that’s what we all want – the lowdown.

I needn’t have worried. After 5 minutes we were happily exchanging details of diagnosis, treatment and prognosis. I felt right at home. There aren’t many gatherings where you can casually drop the words ‘oligodendroglioma grade 3’ into conversation and be met with a sympathetic nod rather than a blank look.

We all seemed to know the same doctors so it was amusing to exchange anecdotes about our experiences with The Business and The German.

The evening had a positive effect on B and I. Obviously, by the nature of the event we were only going to meet the success stories, not the poor sods whose tumour has killed them. But we did meet quite a few people with a very similar diagnosis to B who are a few years further down the line and have returned to a life that is fairly normal.

It struck me that many of the brain tumour sufferers we met work in finance. I counted at least 5. I speculated in conversation that perhaps there is a link between brain cancer, stressful jobs and high IQ (to which one woman replied ‘nah, my husband isn’t that bright’).

It was very interesting to compare details like tumour size and initial prognosis. One man was told he had 2 months to live and is still here 5 years later.

There were a couple of people with lemon-sized tumours and one guy whose tumour was as big as an orange. What is it with these citrus fruit comparisons? We didn’t discuss B’s tumour in those terms with his surgeon as I don’t think he wanted to scare us, but I believe it was the size of a lime.

Perhaps the Society of British Neurological Surgeons could join forces with the Department of Health to raise the profile of lesser known fruits by including them in the tumour lexicon?

Patient: How big is it, doc?
Doctor: It’s the size of a pomelo.
Patient: A what?
Doctor: The pomelo is a crisp citrus fruit native to Southeast Asia. It can be pickled and is delicious in salads.

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7 comments

  1. Lol Jilly ure funny. Great post.

  2. It’s not until you become a member of the bt family, that you realise how comforting it is to be able to discuss your bt with people who don’t respond with that panicky ‘Oh no what can I say?’ look!
    I love the way your blog normalizes and pokes fun at what is for many simply life at the moment.
    On a more serious note, we’ve always been concerned by the link between mobile phone usage and bts.
    xxxx

  3. Great post! Glad it went well x

  4. Will have to go to one if they have it in Cheshire!! I was told mine was the size of a golf ball not as exotic as a fruit lol x Fingers crossed for me on Friday x

    1. Sports balls is another way to categorise – ping pong, tennis ball, softball? I’ll be thinking of you on Friday, hope it all goes well and you’re not in hospital too long xx

  5. Have just signed up to the Manchester Meeting in December x

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