It's been 8 whole months since second surgery (0.2) I'm going to call it for the purpose of today's blog...
Over the past few months I have met with my Neuropsychologist in London. I was a bit apprehensive as I've felt for a while now that inside maybe things internally aren't what they used to be but equally I know that none of the big major deficit stuff happened such as the not talking or not walking again but nonetheless I feel differently and it seems like even the most basic of tasks takes me forever to understand and complete and I'm not sure why but hopefully I can try to explain.
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| I heart London! |
First time around with my surgery it was different. I think I felt physically in pain more, not that I am pain free now but generally second time around I have recovered, in a physical sense, so much better than before. First time around I had support locally which meant for example, I could meet up with people who were going through similar things and people that I could relate to, but this time around unfortunately that group no longer exists however I have reached out to some of the organisations that I have used previously such as Brainstrust- through them, I attended an amazing calm Mindfulness Art class which was super and it was great to be around others who understand what you are going through and can relate to you.
I also have some awesome friends who have really been there for me too however we are all dotted around the country so we can't always meet up as regularly as we would like. And then of course there is Carl and he's my rock really. I'm not sure what I would do without him or my Mum. Just want to take a moment to say thank you to all the other people who have been there and supported both of us- sorry it's all so complicated at times but we really appreciate all of you.
It can be very hard sometimes as with all this you go through a constant state of anxiety which is waiting scan to scan- scanxiety is so real. And then knowing that the likelihood of news will be either stable (the best we can hope for) or that the tumour is back or has changed and it's time to fight it again. I never know what might happen and I also feel a tremendous sense of guilt because physically on the wellness trajectory, for a brain tumour patient, I am doing well, however inside I feel a bit lost in terms of the what now or what next and who am I etc?
I know I am an Activist so I'm almost better when there is action being taken, so being back in the 'watch and wait' cycle is tough but also the guilt creeps in because I have friends in the brain tumour world who are going through very tough things right now and I guess I then feel bad as if none of this is happening but equally it is, it's just I have a barely visible scar too so I know people maybe don't believe this is true but I can assure you that it is- have a feel of my head that has the lumps and bumps still! Again fine line between needing to identify as a brain tumour patient but also just wanting to be you, the old you. I think I'm maybe I'm in mourning now of the old post surgery me as I am now post surgery me 0.2!
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| My hair is growing back very oddly in places and tends to stick up...that really is the last memory of surgery 0.2 now. This is a trivial thing really as I am so grateful that I have thick hair and can style it to disguise. It is just be a little harder to work with as the texture is completely different to the rest, it feels more coarse so definitely no bleaching there! Maybe that also affects how I am feeling as for many years I had highlighted my hair blonde, however these days I am more brunette ombre thanks to my brilliant hairdresser Kat |
So back to the first Neuropsychology appointment- we went through the tests again that I completed pre surgery and some of those I struggled with. I think I put a photo on an old blog which shows you the names of colours written in different colours so that is one example of the test part. It's a long old test which took approx 2 hours and we also talked about the above and how I am feeling. I still need to have a full report of this to know exactly whats what but essentially there are some new deficits from surgery.
There is nothing major as I said above but a lot of it is to do with cognition and understanding. And some is then compacted with the anxiety and worry I feel and then I get myself into a "I can't do this" state of mind and then it's a vicious cycle really or I forget words and just sit there feeling overwhelmed, helpless and frustrated. There is work that can be done to try and support me there but equally it could be a case of accepting that this is the new me and trying to go from there. I will say it again this journey is difficult and I am desperately trying to hold on to who I was pre all of this and it's so hard. I must practice patience and kindness towards myself, as I would to someone I know and love.
To help with some of the above there is also therapy too. I have through a previous employer met a great counsellor who specialises in trauma. I no longer work for that organisation so I have self funded some therapy sessions, however with limited funds it can be difficult to access therapy. I may have to consider another route such as talking therapies, however this could be quite brief and I am not sure if this would be the right kind of therapy I need at the moment. For now I am grateful for the support of the Neuropsychology department at my hospital. I think as well they are best placed initially to conduct any tests as they are they are specialist Psychologists with neurological expertise.
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With love,
Gem xx
