What’s it like living with a brain tumour?
My friend Jude Bissett can tell you – she first got the news in 2003 and has just launched a new blog about life with a brain tumour, Bomb in my brain. The site is pretty new, but it’s easy to see how Jude’s powerful and honest testimony of a life changing experience will be an important resource for others undergoing the same thing. And even if the issue isn’t something you’ve experience of, it’s an engaging and insightful read.
Jude explains: “I evaded writing about what happened for 15 years. Why? I don’t really know. It was in my head for all that time, usually safely in the background, largely ignored but with occasional flashbacks and incidents that forced it forward. And this time it’s back in a way I can’t ignore and the time feels right to document it, in part therapy, in part to have an accurate record and in part to help anyone else who may face a similar situation and be seeking clues as to what they might expect. Though it will only be clues, we are all different, we all experience life differently.”
Here’s a recent extract from September:
By the end of my “break” I am feeling basically back to normal. The summer holidays have been particularly long with glorious weather, it felt like they would go on for ever. Then before I know it, Posy has her birthday and I am due back at hospital for round two. No tears for me this time, not now I know the drill. I fair skip into the Colney Centre, ready for my spot in a comfy chair and a nice cup of tea from a McMillan volunteer. During the week I had a blood test done at my local surgery. As ever they found it difficult to squeeze much out of me but there was enough apparently for them to check my platelets which were excellent, thank you smoothies! They need to check the white count but they have a machine on site to do this.
My Portacath is used to get the blood and I am delighted it can be used both to get blood out as well as do the infusion, what a clever device, how smug I feel for getting it put in!After a few minutes the nurse returns. She is very sorry but they can’t proceed with my treatment. This news comes as an absolute shock to me, this is not something I thought would happen. It seems my white count is too low. It has to be over 1 and mine is languishing at 0.24. But I feel fine! What has gone wrong? What have I been doing wrong? I’ve had all the smoothies with spinach and seeds and other shite, why hasn’t that been good enough? “it’s just the treatment” the nurse keeps repeating. I don’t understand and I feel unaccountably upset. The nurse tells me they’ll defer me a week and my count will come back up. I should be pleased at the reprieve but I am fretful as I’ve plans to attend a good friend’s 50th at the end of the summer and I’m worried this will throw out my timing. But I calculate the next week will still be ok and I defer for the week and return home.
You can read more of this extract at Bomb in my brain by Jude Bissett and please share widely.