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My story continuing at:
Copyright © 2017 by Jo Barlow
The Price You Pay
The Financial Impact of a Brain Tumour
30th April 2018
I find this PDF hard to read 😥
... as the time between being diagnosed with a brain tumour and the weeks of healing after were TOUGH. When I could barely move off the sofa, walking into the garden or to the toilet took major effort, I was scared to shower by myself incase I fell and then didn't have the strength to even dry my hair! I felt drunk beyond control 24/7, and was trying to hold myself together and ignore the constant spinning in my world. I couldn't see straight as much as I tried, nor could I look at moving TV or computer screens without awful travel sickness type nausea after just a few minutes, I often couldn't think nor explain myself without it draining so much energy it resorted me to tears... when my husband and family had to do EVERYTHING around the house, basically my kids had to ‘baby sit’ ME, and to top it off -
We had NO support, advice, help or idea how I would heal or what I should, or could, do.
We were incorrectly advised that we couldn't claim any PIP, ESA or carers allowance and told that we could not get any more financial help than Tax Credits. Despite this I had sent off for some claim forms, but I couldn't see, or think, enough to fill them in -
During these few months, several of my husband’s clients’ disappeared-
So not only did we have the stress of not knowing what was happening with my health, the fact 3 of our kids were taking various exams (GCSE, BTEC and Degree levels) and everyone was under pressure with the extra house chores, and their attempt at nursing! We had the extra stress that our income had almost disappeared and we had no way of increasing it, or even knowing if we could pay the bills that month and buy enough food...
Almost 2 years later we are still struggling... if I do too much I cannot function for a day or two. Even on a good day I can still struggle with coordinating cooking dinner and the 'turning in circles' in the kitchen, as I get food and cook, as it throws my balance off. I still need to rest each day, some days (if i have been busy the day before) for most of it! I cannot book things in advance as I don't know if that day I will be just too tired to go. If I get up too early then I feel ill and exhausted for the whole day-
Yes, maybe I 'could' go to work, but its pointless as we would just lose the same income in tax credits. I want to do more self employed work, on my terms that suits my energy and build up our income that way.
'I' know that I had a 3 cm lump removed from my brain...but most people say I "look ok now", that I "look like normal" or “just back to how you were”... so it feels not many others seemingly know or care that I am not the same. My problems are invisible to most. I don't even have a visible scar on my head. The scar that you could see just after surgery on my neck, now no one can see as it has healed so well, and most of it is under my hair... the hair that is now almost as long as it was before the surgery. No one knows. My scar is inside my brain...
I wish I had known about this support back then, and this information is just showing the starting of the support that needs to change (as highlighted in the PDF booklet), as we need FAR more than basically being told “Your tumour is removed, now go home and get on with your life”
So I decided, I order to help get this support to others, I am going to be helping with fundraising for The Brain Tumour Charity -