Amy's Brain

The egg in my head

Brain Update 2b

February 10, 2017

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Not much new news yet.  I spoke with the specialist nurse yesterday who didn’t have much positive to say except that we can’t be sure exactly what’s going on until after the surgery and the biopsy results are back.

The nurse said “it’s definitely diffuse” this means that the tumour doesn’t have a clear boundary and is growing into the surrounding brain tissue, this is bad news. Once the tumour is diffuse it’s very hard to get it all out so there is a tendency to leave little bits behind which then regrow and cause further damage. The more aggressive they are with the tumour removal the more likely cognitive damage. The less aggressive they are the more likely recurrence is. The best outcomes, it seems, come from the “awake craniotomy” so they can tread this line most carefully. The next step on that path is to meet the neuropsychologists who do lots of assessing in advance of the surgery then they would talk me through the surgery in process presumably asking me to solve problems, recall memories and chatter away to prove the brain is still working. I have been reassured that they put you to sleep for the bit when the skull is getting drilled. Phew.
On the plus side they’re trying to get me an appointment with the new surgeon next Tuesday, unfortunately the organisation seems to be pretty shambolic. The surgeon is just coming back from maternity leave so there seems to be a lot of uncertainty about her whereabouts and there is also uncertainty as to whether there will be a consulting room available. I have helpfully offered to meet in the cafe. We’ll see!
Better news, I have managed to arrange a 2nd opinion / consultation at the Walton Centre in Liverpool. This is fixed for Thursday afternoon with the head of neurosurgery there. This is great, the Walton centre doesn’t seem as shambolic or scary. My new brain tumour buddy is very enthusiastic about the Walton centre – apparently they a) pick up the phone b) have space to park and c) have great food. Two out of three of these Stoke have already failed on and I’m a little worried about c). Also, it seems that they are able to efficiently make an appointment. Hope is that I can go there for my treatment instead but it will be good to see the two places and meet the two surgeons. Easier to make a good decision now about where I get my treatment as it likely to be a lifelong relationship.
So on the plus side…
  • still some unknowns which at this stage can be read as a good thing, I’m still holding onto a tiny bit of hope that it’s all been a mistake and it is a DNET after all
  • prognosis stats are always wrong (see this article for an explanation, especially if you defied my advice and did some googling – http://www.journeybraincancer.com/single-post/2017/01/10/Prognosis-Statistics—Cancer)
  • turns out I have amazing friends who are kind, loving and generous. I knew this already but now I know it extra special
  • to quote my uncle Adam “In the hundred acre wood lives a bear with very little brain but everyone loves him anyway.” this made me smile x
  • I voluntarily surrendered my driving licence which means I should be able to get it back quicker when the time comes and… I can get a free disabled persons bus pass which is quite exciting!
  • I can’t be sad for too long with this little munchkin’s smiles and giggles…


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