After waiting over a week and hearing diddly squat about the results of my MRI or next steps I need to take it was made clear surgery won't be happening before Christmas (seeing as they wouldn't book me in for Christmas week just incase there are any complications and I'd like to think they'd give me a bit more notice than a couple of days to prepare myself before scooting around in my brain). Being kept in the loop and being told this by one of the team would be nice though, instead of me having to calculate and try and figure it out myself.
I gave the good old secretary a call to find out about my MRI and try and get a vague picture of what was upcoming before Christmas. She said she didn't know anything, but the usual protocol is for Dr. Gilbert to write to me when she does. Oh come on! We're in the 21st century now, why is it so hard to get hold of someone who actually knows what they're talking about? All I want is a five minute conversation so I actually know what's going on! But seeing as I only actually received my MRI appointment letter 5 days after I actually had it, it looks like I'll be enlightened on what's actually going on in roughly 2060. The last time I managed to speak to Dr. Gilbert, she said she wanted to put me on medication to get my cortisol levels down if surgery has to be after Christmas, so surely they need to get in contact some time soon in order to fuel me up with my appropriate Christmas drugs...
Then, yesterday, while I was in the blissfully in the shower, I got a voicemail asking me to confirm that I can make an appointment at the PIU for a Day Cortisol Test next Monday (whatever the hell that is?). I called them back to confirm that I could attend it but wanted to actually know what it was or what it was for. The phone got flung around person to person and I finally ended up on the line to a nurse who had a vague idea of the procedure. Still, she wasn't too clear though, it was obvious she was just reading off scraggy notes and trying to piece it together. All I gathered from her confused talk was that I had to be there at 9.15am, it was testing my blood, it would take at least six hours and something about figuring out dosage for a drug they want to put me on called Metyrapone. Fantastic. Still don't even really know what I'll be doing but at least she reassured me it was non-invasive... I guess that's a positive? I should be able to go to work the next day and rake in a final bit of dollar before I become a doubling, bedridden, lifeless recovering sack. But what the hell am I supposed to do for six hours?!
And then today, Mum forwarded an email she'd got from Dr. Gilbert (she was also pestering to find out about timings or results as she has to know when to take time off work and make other arrangements so she's able to tend to her princess (aka me)). The email basically said that the results of my bloods and MRI are 'in keeping with pituitary Cushing's' (I'm guessing they identified a tumour on the scans (which I wanna see!)) and they need to be put on metyrapone as prep ahead of surgery. And then at the end she signed off by saying 'it is envisaged that the course of treatment to optimise the cortisol levels ahead of surgery will provisionally be 12 weeks.' as if it was nothing.
...TWELVE WEEKS?! THREE MONTHS?! At first, I was told the whole process from diagnosis to treatment would be less than two months and now you're telling me the prep for surgery alone is gonna take another three months? Not gonna lie... I'm slightly pissed off. Not only do I have to be anxious about this buggar growing inside my head the entire time but I have to be on medication for three months too.
I don't like taking meds. Before this whole saga, I rarely even took Ibuprofen. I once took Paramol and it knocked me out for six hours so it's always last resort to dabble in the pharmaceutical realm for me. When I took Dexamethasone for my suppression tests, my insides bubbled for a week and finishing a snack, let alone a meal without an 'interruption' was impossible. Even taking common Amlodipine for my blood pressure has given me an abundance of shitty side effects. Ugly rashes all over my chest and neck that external creams fail to make a difference to (my bastard GP owes me £8.60.), thinning and more sensitive skin, furriness, escalated forgetfulness, decreased cognitive abilities and generally feeling weaker and tired for most of the day.
This metyrapone shit they want to put me on doesn't sound the greatest either. It's highly likely to make me feel nauseas, dizzy, give me the shits and make me even hairier. I cannot wait for the next three months. Joking. I really can. -_-
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