Brain Storm

      i can't sleep because this is weighing too heavy on my mind, I’m also having an attack of my heart arrhythmia I think, I’m over 100 beats a minute lying in bed, but maybe it’s just anxiety.  I’m so grateful for this blog, before thoughts like this would keep me up for days worrying. Being able to write them down and post them allows me to forget about them for a while without actually forgetting so I can sleep and get on with days as if it’s not happening. Good mental health is important, stress lowers your immune system and your bodies ability to fight cancer, cancer grows faster. not good!

the problem:
  • Surgeon A said the motor zone was right next to the tumour meaning it would have to be careful conservative surgery with functional MRI for brain mapping before surgery.
  • Surgeon B said the motor strip was far away posterior too the central sulcus so brain mapping not necessary and surgery could be more aggressive in these areas.   
  • Text books that i've read suggest its anterior to central sulcus

  •  Surgeon A said awake craniotomy would halve the risk of paralyzing me
  •  Surgeon B said it wouldn’t make any difference.

  •  Surgeon A said monitor it
  •  Surgeon B said imminent surgery required.

  •  Surgeon A said he would peel away my healthy brain tissue and excise tumour beneath. 
  • Surgeon B said he would take a wedge away and that the brain doesn’t need that bit, that the brain could lose 7cm in the frontal region without any impact.

  •  Surgeon A was very cautious about his approach to surgery whereas B was far more cavalier, yet B was the more experienced surgeon so it could be argued that confidence comes with that territory.

I’m so uncomfortable with the MRI diagnoses of probably grade 2 with maybe some 3 but we can’t possibly know until a pathologist has a look. It’s not a diagnosis that I have four months’ worth of faith in. if it’s wrong, which a third of the time it is, and we wait four months for a scan I won’t be doing so well. ive also just been recommended by a fellow glioma sufferer that surgery soon is important because theirs was misdiagnosed before surgery. and im so grateful for their advice, it confirms every gut feeling i have been having since diagnosis. theres a small hole in the middle of my tumour, that no-one wants to comment on. if its a necrotic area that might indicate fast growth. my symptoms came on fast, my exercise tolerance before seizure deteriorated fast. obviously i want the grade 2 diagnosis to be correct, but on the relatively high chance that its not i need surgery now and treatment soon after. if it is grade 2, then surgery is still the treatment of choice.

Pros of surgery now:
  1. a real diagnosis of both grade and cell type = oncologist can choose best treatment, peace of mind (grade 2 and grade 3 come with different treatment options)
  2. i will need surgery eventually. have it now while i have the time so i can move on with my life and not waste more of it waiting for surgery.
  3. potentially gives me a better prognosis, depends on what research you read
  4. may alleviate some symptoms by removing the mass effect (unlikely, but nice thought)
  1. potential to paralyze myself earlier than the tumour would
  2. small chance of not surviving surgery
  3. miss christmas?

I’m uncomfortable with the differing opinions on my motor strip and the best style of surgery, but like my oncologist says ‘the problem with more than one opinion is you get more than one opinion’.

I want a third surgical opinion and i want a functional MRI but I don’t want to be on another waiting list for weeks and weeks either, but I don’t think there is much choice. It’s the biggest decision of my life and for the first time in my life I don’t feel like I’m intellectual enough or informed enough or brave enough to make it. 

Meeting my oncologist on Tuesday to make the decision between Bristol or London. i'll probably leave it up to him, i don't know what i'm doing. 


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