Do your feelings do as they are told? Like, brush their teeth and go to bed on time? Or do you sometimes catch them, resembling a naughty child, peering down from the top of the stairs in darkness?
Since the diagnosis, I have kept my feelings in check. I’m not sure if that’s really a thing, but you’ll have to bear with me.
In the run-up to the operation, psychologists wrote to my neurosurgeon, noting the fact that I was “coping very well”. Displaying a “normal range of emotions” and therefore “a good candidate for awake craniotomy”. I found the letters reassuring.
They say that with a diagnosis of this nature, akin to the grieving process – anger usually comes first. In my case, it didn’t.
Self-talk and tears
Last week, things were different. It all stemmed from the need to undergo an assessment.
When the assessor arrived (late!), I noticed his tanned arms (which were hard to miss in the short sleeved shirt that he wore). I was quite envious, to be honest. The best I can hope for is turning salmon pink before going on to achieve just one shade up from milky white. He declined suggestions of brews, (presumably well accustomed to earnest offers of hot-drinks).
So, we made a start.
The night before, I cried. Not neat well-manageable tears. They were sizeable and serious. Slopping down my face, no matter how hard I tried to stop them.
In the morning, before my slot, I attempted to get into the non-crying zone. This consisted of ‘self-talk’, power posing, and anything else I could think of.
I recalled the things my specialist nurse had said I should mention a few days before. Uncontrolled seizures; cognitive deficit (that’s the all-encompassing term for poor attention span, memory loss, processing skills etc.), and fatigue.
The review had to be thorough and that’s what made it difficult.
Now, could you tell me in your own words
We started in the present. How does your condition affect you on a day to day basis, he asked? I reeled off the list (my husband was there too. And he chipped in when I’d missed anything).
Then, we had to go right back to the beginning. What about the diagnosis – how did that happen? A massive Grand Mal seizure, I said, and before that, some sensory things (also probably seizures).
And then? Scans (lots of them), and MDT meetings.
Planned surgery followed. It was unforgettable, (since I was awake), and what with the drilling and exorcist style seizures – felt long, and invasive.
Afterwards, I was physically broken. Neuro-physiotherapy began during those first few weeks spent in hospital, and has continued ever since.
At first, there was the inability to move. Now, my leg, hips and ‘trunk’ (the ridiculous, and amusing physio term for your stomach!) remain weak, and the sensation on my left side hasn’t fully returned.
I have an arsenal of walking sticks (and crutches) that I keep in the hallway, near the front door, and an array of orthotics too – splints, ‘foot ups’ and fancier things like functional electronic devices. I store them in a repurposed umbrella stand, and yet, they still manage to behave badly, getting in the way and ready to cause injury if knocked over.
My surgical team was considerable in size and experience. Although these things happen – no one expected it to go that way. They were apologetic and expressed shock and disappointment. A couple of weeks later, my oncologist would declare the tumour inoperable.
We covered all of this. And, the subsequent treatment. Brain zapping (radiotherapy), and 12 months of chemotherapy. It builds up and makes you tired.
My sadness was overdue
The assessor was patient and didn’t laugh at my tears, or the tissue that found a way to stick to my face, including my forehead.
You see, like a lot of people, I dote on feeling strong.
I do things on my own and (as my friend recently pointed out) – have a tendency to avoid seeking help. As a result, the whole thing made me uncomfortable.
I’ve struggled to put my rational head back on. The one that has become my default, and says things like “it could be worse”. I know that there is truth in that, yet looking at it all laid out chronologically was hard.
Sure, there have been some positives: the classic re-evaluation of life and finding renewed purpose.
But, after 18 months – in the physical sense at least, this might be as good as it gets. There’s no way to be sure, and I can live with it, but, that isn’t the same as wanting things to be this way.
For the rest of the week, I was sadder than sad.
Despite my dogged tenacity, my brain tumour had found a way to break my heart.
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