Several days ago I saw a fundraising post online about someone who also had a Hemangioblastoma and the headline:
“Now, 10 years on, she feels it is as if the experience never happened.”
As well as her words:
“I feel like it’s as if it never happened. I feel the same as before I started to be unwell and I feel so very lucky to have survived a brain tumour”
And whilst I fully relate to the lucky part... I am nowhere near feeling the experience never happened.
Every day, several times a day, I am reminded about my tumour. With various pains from my head, tightness, pulling in my scalp, itching, my neck feeling tight, blurry eyes, foggy numbness of my right side of head and behind my right ear, feeling wobbly, doing something uncoordinated, feeling a bit spacey. Plus all the other daily and exhausting neuro-fatigue issues. The ones I am not ‘supposed’ to have.
Plus its winter, which is never an easy time for me as everything feels it is shutting down, dark and cold. So when I am already struggling I start to overthink again … Will I always have these issues? Will I ever feel properly balanced again? Why is the hole at the front of my head aching more now? And why is it so wide? Why do I even have it? The gap between the sides of my skull bone I now feel are a fingers width! It's not even where my tumour was. Was I this bad last year? Am I getting worse? Will I recognise if I have signs of the tumour reoccurring again? Will it reoccur? Could I cope if I had to go through this all again? … my healing going back to the start ..?
I don’t want to walk the dog, I don’t want to walk alone, I feel wobbly. It reminds me of those months of feeling ill and everyone saying I was alright … trying not to panic several times a day as I wobbled, or did something that felt wrong and feeling like I was drunk or in another place. The fight or flight reflex constantly sending jumbled messages that my brain couldn’t cope with.
I feel the wobbliness is just inside me, a feeling I have - as no one else notices it. Or they are too polite to say? But then they didn’t notice until I was very ill before …
I try and think, have I really been better since surgery, or is it just the same type of reaction but I am struggling with dealing it today? And I remind myself that in the summer I went out many a time feeling wobbly and wondering if it was as I was too hot, last winter I had to keep the hood on my coat up as my head couldn’t cope with the cold wind. I remind myself of these posts I wrote about my surgery side effects. This one written in December last year saying I have been struggling for the last few weeks and this the following February. Not much has changed, I could have written them yesterday!
In theory with my type of tumour it is out and gone, and it is unlikely it will come back, but if it does it's not much point me worrying about it. I knew last time it was more than just anxiety, I am sure I would know again. Plus there was nothing showing on any of my scans since surgery, the last one being only 6 months ago – I just have to question my logic. Where I have seen 1+1 = 3, but I haven’t stopped to check and count! To stop worrying and make the best of what I have. I will just have to hope that in 7.5 years I too will feel like its never happened 💜
So I walk the dog, fuck it if I am wobbly, it’s not that ‘brain spinning’ dizziness or the wobbly after surgery when the world constantly moved and I got travel sick from just looking at things. It’s just a day where I wobble, similar to many in the last 2 ½ years…
After I do a couple of laps of the park I feel I have lost much of the wobble, being able to walk when I don’t need to follow a ‘path’ is much easier than walking through people or along a narrow footpath. Then as we are about to leave the park I hold on to a tree there. I often sit on one of its low branches and ground myself connecting to the earth, but today its really wet and so I just lean on it instead. As I am leaning I think I can feel this branch move, swaying in the wind, or is it me moving inside again? I lean a bit more and with another gust it once again moves. This big tree with thick branches is moving in the wind, it's wobbling. Its top half sways, but it still has roots firmly in the soil. Grounded. Today just realising a tree does the same, its top half sways and yet it is grounded, is enough.