Over the last week or so I have been struggling. Again, I have tried numerous times to start this blog post with a sense of positivity, a sense of accomplishment of the things I have achieved each day, but I can never get more than a paragraph or so deep. This mirrors how my days unfold and I have realised it is impossible to use this blog as a tool to convince myself I am okay, to make myself happier.
Every morning I awake stronger and, after shaking the initial feeling that I have been hit by a bus in the night, I get ready for the day, each time a little more independently than ever before. Indeed, today I showered and washed my hair for the first time since the operation and it felt good. I smelt good, and I was good.
But it seems each day after my initial burst of energy I begin to get lower. I set myself goals for the day, pushing myself to become more active, trying to prove to both myself and the physiotherapists that I am getting there, that soon I will be able to go home. Whilst I may be happy with my physical progress, I know deep down that I am trying to overcompensate for that feeling of weakness and desperation that I experienced in intensive care, and that I continue to feel even now deep in my bones and my mind.
Little things are difficult. Little things that I took for granted before, like the ability to point my foot or spread my toes. The physiotherapists don’t test for this, and don’t realise that these things matter to me; they are nice but not necessary. But not being able to do this makes me feel old and tired, and it frustrates me.
My body doesn’t feel like mine…It feels detached somehow. Parts are numb, whilst other parts are hypersensitive and burn to touch. I feel like I want to stretch but I can’t stretch far enough, and it is driving me mad. This morning I looked in the mirror and I didn’t recognise my own body. There is swelling around my stomach and back, which a recent MRI has shown to be a cerebral spinal fluid leak. This is nothing to worry about, since I am totally asymptomatic, but it does mean that the swelling on my back will never go down. This is such a minor thing and I shouldn’t care about it, but I couldn’t help it as I stared at myself in the mirror. I felt ugly, and to me, it matters.
I feel guilty that I am not more grateful for how the operation went, because as I said before, it could not have gone better. It was an eleven hour whopper of an operation, and I should be thankful for how little has changed considering the enormity of what was done to my body. For four and a half hours I was lain on my back
and opened from the front. My organs, including my bladder and bowels, were moved to the left slightly, and I was sewn back up. I was then flipped onto my front for six and a half hours, opened from the back and the right side of my sacrum was removed along with a disc, several nerves and the tumour. Titanium screws were put in to reconnect my spine to my pelvis, a massive cerebral spinal fluid leakage from my last operation was repaired and I was sewn back up. So yes, considering what the operation entailed, I am lucky that not more has changed. But I don’t feel it, and I feel awful admitting to that.
And it is shameful that I should feel this way because I am so lucky the operation went so well. I am lucky to be at such an amazing hospital where there is such expertise and highly skilled staff. I am lucky the biopsies showed what they did. But sadly these things aren’t hitting home in the way they should: rather than being happy for the above, I just feel sick when thinking of their alternatives. Rather than being happy that I will not need another operation, I balk at the idea that there could have been another and scold myself for the fact that deep down I honestly do feel as though I would not make it through a second. Physically, yes I’m sure I would have got through, but mentally… Mentally, I am not so sure. This operation has taken its toll.
So yes, I am struggling. I am not ashamed to say that I am struggling more than I ever have before. I will need help this time to get through this, through the coming weeks and maybe even months ahead because this surgery has hit me in a way that I never thought anything ever could. It has made me weak, it has made me ashamed and it has stripped me of my pride. But I hope that in my cries for help I have taken ownership of these things, that as I speak about my feelings they become more normal and I learn that they are not things to hide away in the dark corners of my mind.
These are my feelings, my thoughts and I will take ownership of them and hope that this makes me stronger, mentally and physically. Because that is what I want more than anything, to feel strong and better again.