Monday, 11 February 2019

What do you wish someone told you when you were first diagnosed with a brain tumour?

There are so many levels to this question… 

My first instant reaction is I wish I had been told:   

“That you will still be alive almost 3 years later!”

as just knowing I would get through the operation would have calmed my first fears…

I also certainly admit the fact that I WAS told that it was a hemangioblastoma as soon as I saw the scan photo and that 'they are slow growing, non cancerous tumours and can be fully removed during surgery' was a massive help in itself! Some positivity in the terror…

Certainly in the wish there would most definitely have been an:

 “I’m so sorry we didn’t listen to you, we truly fucked up in not diagnosing or referring you, or even realising there was an issue” 

from the doctors at Giggs Hill - my GP surgery.   
A personal sorry. 
Bringing me round some flowers or a card. 
Actually saying and meaning sorry, admitting they messed up and were at fault for not picking up any concern from my symptoms… 
(I’m still waiting Dr Vo and Dr Milne - better late than never...)

But trying to work out what else I would have liked to have known, left me muddled, as I don’t know what order of things, if at all, I would have liked to have known… 

  • If I knew pre op that I wouldn’t feel ‘normal’ for a very long time, would it have upset me? 
Yes I am pretty sure it would have.
  • If I had been told that I would leave hospital after 48 hours, would it have reassured and calmed me massively? 
Yes, just the thought of staying in for 5-9 days after surgery was terrifying.
  • But if I had been told that I would leave hospital and come home with what felt like no support, would it have scared me? 
Yes for sure.
  • That my vision would not be the same almost 3 years later, and I would still struggle to see things close up? 
  • That my abilities would change - that I would struggle to multitask or even cook dinner; forget how to spell or even think of the correct words, let alone struggle to say them and it take ages to get better? 
I wouldn’t have wanted to know, I couldn’t have coped.
  • That my hair would cover the scar almost straight away, then grow back and no one could ever see it?
Massive relief, like someone telling me I no longer needed a limb amputated!
  • That I would be able to go back and listen to my husband’s bands playing rock music a few weeks after? 
That part of me will still be there. Gratitude.
  • If I was told I would have a numb, lumpy and dented head forever, a dip in my neck and none of it will ever feel the same? 
It would have been hard to accept, as don’t think you can fully understand until you can actually physically feel and understand what a numb skull means…

It took a couple of weeks after diagnosis to be told:

 ‘Your head might never feel the same, but you'll be alive’… 

I wish I’d been told that when I was diagnosed. 

The same words that have come to haunt, as well as comfort me, many a time since.

…in fact that is the hardest part. 
Not knowing. 
Finding out your own answers from struggle and time. 

Not knowing if the extreme dizziness after surgery would last for a week, a month or years. Even the neurosurgeons don't know. If you knew you only had another week to cope with, you could face it easier, not feel so down and defeated and just damn exhausted. It’s the not knowing that’s hard. Not having a crystal ball.

Other brain tumour survivors that I asked, who have had the same type of tumour, also had similar feelings:

"D'you know, it's probably a completely 'backwards' way of thinking, and not really answering the question, but I was so delighted to be told I had a brain tumour, having suffered horrendously for 3 months where it was feeling more and more like my GP practice thought I was making it all up, that confirmation that I WAS seriously ill was more than I could have hoped for.
It was an enormous relief!"

"I am sorry that I was not told how much suffering and struggle the recovery might cause - that it would change my life and my abilities. All the info given was based on the tumour and it's removal."


"I thought I'd have the op and be the person I had been 4 years before all the symptoms started. I'm worse now and can't work."

Although I am very grateful for not being religious after hearing this comment!:

"They would encourage me, instead of telling me that it may be a punishment from God. And that I need to search whom I had wronged and ask them for forgiveness!"

How punishment can come into it, I have no idea! 😳

And if you also had a brain tumour...please comment as to what you wish you had been told. 



1 comment:

  1. As like you, i wish i had been told a little more about the recovery.
    I had a giant menningioma on my front love removed June 2018, had a grand mal seizure 5 weeks later at home but had no choice but to go back to work 3 months after the op.
    Tbf im still struggling with good and bad days but I'm alive.
    I can live with the yearly MRI scans but the numb skull and dizziness is the hardest to deal with.
    Im glad you are going on well and with you the best.
    You mention cbd somewhere, how do you find it?