Today I’ve seen Mr Paul Fewings, my consultant neurosurgeon. The surgery is next week, and should be confirmed tomorrow.
He’s an approachable, friendly man, straightforward and confidence-inducing. He interjects with a gag from time to time while writing up his notes as Tony the neurology oncologist nurse, Mum and I talk. I don’t think I need worry about the cape.
He thinks mets are unlikely, tells me I have gut inflammation (which I have had before) and which is the reason for the notable lymph nodes on my CT scan – the ones I was thinking reinforced the concerns about metastasised cancer. There is no sign of primary tumours elsewhere. I feel huge relief about that, because the thought of coming straight in with stage 4 cancer was pretty scary. Mr Fewings says the CT is “very reassuring”.
He’s categorical that we don’t know what the tumour is till we get it out: “Could be anything” and explains the craniotomy, the bit where he takes out a chunk of my skull “like an upside down horseshoe”.
I won’t be able to see the actual tumour (I was hoping to trap Hunt in a little pot where I can give him the evil eye), but will be able to get pics of the slides which will be nice. Nice? Seeing Hunt magnified?
So it’s wait and see, with a more positive second option. I know I’ve done too much research and thinking, and I did drag too much information from Titus the first surgeon. Not making that mistake again. I was up blogging from 3 am last night, no chance of sleep at all. Hopefully I will sleep later – and from tomorrow my dose of dexamethasone is halved which will most certainly help. The blog feels cathartic, get it all out now. And my mental state is okay, but so random.
Mr Fewings hasn’t emphasised the likely malignancy of the tumour either, although I have been clearly warned. But then, likely isn’t definitely. I see no value in being wholly unprepared for the possibilities, and most especially in blanking the likelihoods of what’s to come, but equally I seem to have wound myself to a tangle of accepting that one of the two worst options is going to be the outcome. Of course those extreme potentials also contain hosts of other variable factors, as do the lesser ones.
People assume that if you have any kind of medical background you know everything about your illnesses (and often theirs). As a paramedic I know lots about different conditions because I encountered most of them, some only tangentially, many repeatedly. Trauma, MIs, strokes, diabetic crises, mental health crises, people at end of life from diseases or age, social problems, disability. I know what to do in the crisis, I know how to assess, manage and treat the immediate, life-threatening concerns, manage the situation and the incident, access the right care pathway (if it still exists in the face of austerity). I’m fascinated by it all, and I research anything I meet, chat to doctors about how I might have managed a condition better, or whether a certain intervention might have been better avoided, or talk generally about a condition. But medicine is a vast area of highly specialised and rapidly-advancing knowledge. I know nothing. Yet I know too much.
I hadn’t realised till today how caught I was between the polarised negatives. I know it’s still potentially nasty, but there is some hope.
I’ve signed my consent form which says there’s a 1 percent chance of death or serious disability, post operative bleeding and infection.
A 3 percent chance that the deficits I have will be permanent in some form, or become worse, but a good chance I will recover once the tumour and associated swelling are gone (it’s the swelling that is causing my symptoms).
Once Hunt is out and identified, the treatment plan proceeds, and I should get the results hopefully on day 3 after surgery and be able to go home on the same day if all is well.
I feel my head is lighter somehow.
I have prepared myself for the worst, but I can also hold on to some hope that there’s a future. Whether that’s a long future or a curtailed one, it’s still a future. And one other paramedic insight – you have no idea how many random, flukey things can happen to you out of the ether, nor when you’re going to die, nor what from. The C word is one to muse on later, but there are some equally bad, and many worse illnesses that don’t carry the same Jihadi snuff video potency. In the meantime, if you are interested in such debates about how we frame our experiences and are in turn framed by them , the late Susan Sontag, when she had cancer, wrote a book called Illness as Metaphor about this very topic. I’m intending to re-read it in the future.