Seems like plans are a thing of the past. I can't make any without something popping up and ruining them! If you know me you'll know how anal and organised I have to be... I don't leave the house without my diary, notebook and a pen in my bag and I've made an excel spreadsheet mapping out my finances for the whole of uni (fail to prepare, prepare to fail!). So having to wait on things and not knowing what's going on really puts me on edge.
When I handed in my 24 hours of wee at the PIU (Planned Investigations Unit) I was told that although my blood results for the dexamethasone suppression test had 'probably come in', they didn't wanna give me them yet and they'd want to tell me the results and the next step of investigations altogether. Then, I was told that piss analysis usually takes two weeks to get results back from, so I assumed I had a little slot of time to get my shit together. Packing up my room in Manchester, organising for someone to find the time to drive it all back down and maybe squeezing in a little party, seeing as I'll be a little worse for wear and most probably not in the state to be enjoying any kind of boogie in the next upcoming months.
I went ahead and planned a nice little farewell shindig (even made a facebook event where whilst trying to avoid the morbid 'tumour' word, I said I had a 'friend' and people thought I was pregnant), booked a train ticket for a few days earlier so I could spend the weekend with my friends and sort out my room leisurely, bought tickets to my friends drama showcase, and spoke with my dad about driving up in the week. Great, fine, all sorted. Well no... Turns out the forces are determined to shit on any ideas I have.
I've needed to get a letter of supporting evidence to grant me time off uni, so nosey Wends (mum) has been emailing my consultant and her secretary. She was finally sent the letter but instead of just saying 'thank you' and leaving it at that, she proceeded to prod around and ask about more tests and dates etc. (even though we got told it'd be two weeks before we should expect to hear anything) ...Lucky that she did though because she was told I had an MRI booked in for next Monday at 4.50pm.
Brilliant. The day of my Manchester shindig! The ONE evening that I had solid plans for. Hired a room with staff and everything... I can't cancel!! I have put effort into guilt tripping people into clicking attending!! Altering plans sends me into panic mode!! Surely they should have contacted me earlier and told me about an appointment I'm supposed to attend? A phone call? A letter? A messenger boy? Anything?
I call up my consultant's secretary (can't get hold of prestigious people directly) and explain to her that the appointment time is literally the only time I can't do and she robotically tells me that I'll have to contact the MRI department to reschedule if I can't attend. I call them. They say the next date is the 5th January but I'll have to be quick to secure it cause appointments fill up quickly... For goodness sake!!! The MRI department is obviously really busy and if my consultant had the power to book me in for as early as next Monday I didn't want to piss on her power and reschedule it for a whole month later just because I don't want to let people down and want to have a party. So I call up her secretary for some more advice... I explained to her that Dr. Gilbert said in our previous appointment I was urgent and asked her if 'urgent' meant that a month wait was too long (considering she said she wanted me to have surgery before Christmas in the back of my mind I already kinda knew the answer). She said she'd try and talk to her but her advice was that nothing is guaranteed and I should really just try my hardest to attend the appointment I've been given.
Don't know what happened in this subsequent conversation between them but about 15 minutes later I got a phone call from my consultant, the golden woman herself, the woman behind fixing me, the one with all the knowledge and power! Finally! Firstly, she explained to me that my dexamethasone test results had come back and my bloods showed that the low dose had no effect (confirming a tumour) and the high dose showed levels of suppression (suggesting that the tumour is in/on the pituitary gland), so she's booked me an MRI of the brain. Then she said that she'd been informed I can't do the appointment time.... I begged her any other time except for monday evening. Monday morning, fine. Tuesday evening, fine. Tomorrow, fine. Now, fine!! ANY time that wasn't Monday evening :(. She apologised and said that I should have really been able to make arrangements and plans because yes, my 'pee is still cooking in the lab' and they wouldn't usually arrange for anything until the results for both were back, but the blood results were enough for her to know the next step so she tried to be as efficient as possible. This inconvenience is nobody's fault really. But anyway, she said she'll get on it, and get all the other endocrinology secretaries on it too. I came to terms that I probably wouldn't be able to get on my train on Friday and spend the weekend basking in friend's company because they'll either find me a cancellation or slot within the day/ next day or I have to just attend the original appointment and head up after.
Anyway so that was the task ahead- pestering the MRI department until they're sick to their bones of us. Only problem was that I didn't play much of a part in the team because I could never ever seem to get through to them. Didn't manage even once... and I tried consistently all day! Maybe the number I was using just called an old empty room. After my unsuccessful attempts, I called up Dr. Gilbert's secretary to see if she'd had any luck and she said she'd been on the phone to them ever since my consultant had asked... but there are no appointments or cancellations coming up. I could hear that one of the other endocrine secretaries were actually on the line to them when I called (being told no again), so you can imagine how important I felt that they weren't lying to keep me sweet and were actually doing all of this for me. She said that she'd never seen my consultant so eager to find something that suits me so she was really trying her hardest (she said her and the team had been telling them porkies like that I'm in hospital monday evening etc. but they were still having no luck). At the same time of feeling chuffed that I was so important to her I felt so guilty. I am being a spoilt brat making them do all this work just so it's convenient for me. So I accepted that I should go to the Monday appointment. I asked about rough time scales to see if the party had to definitely be cancelled (cause I'd need to call up and get Revs to cancel their staff and prep, and then explain to all the people I invited that they're gonna have to find alternative monday motives) or whether I could potentially wiggle some things around so it could still go ahead.
We put our logistical heads on and called up the MRI department again to give us an indication of how long everything will take. Looks like I'm gonna have to delay the party by an hour, rock up fresh, straight from the station, and have to pay for an expensive train ticket but it's a mission I'm ready for. Let's hope that everything runs smoothly and on time and the NHS, traffic, virgin trains are on my side.
Oh, I also asked my consultant whether surgery before Christmas was still likely and she said there is a possibility but to keep an 'open mind'. She said she'll probably put me on meds to get my cortisol levels down if surgery has to be postponed but seemed to hint that it will happen just after christmas (which is ideal for me :)) But I really need to stop thinking of ideal situations and then convincing myself I can have everything my way... the forces do not tend to work in my favour.
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