14. The waiting game…

So yes, we’re still here at the VU, and no, we still don’t have a plan locked in. And for anyone who’s worked with me, or is just getting a sense of me through all this, you can probably imagine that this is driving me absolutely nuts!

I even have a blog post drafted entitled “I love it when a plan comes together!” – all I need is content to go in it!

Monday – movement but no progress

So on leaving the OLVG on Monday, I was told the VU were expecting me at 2pm. On arrival I’d be seen by a Neurosurgeon, who would examine me and confirm if surgery was the right option as step 1 in the treatment plan. I’d then be scheduled in for an operation as soon as possible – potentially Tuesday or Wednesday…

Well I arrived at 4pm, saw a neurologist (no surgeon) around 6, who repeated the same checks the neurologist in OLVG has been doing since Thursday: Can you stand? Can you walk? Can you raise your hand/arm/leg/foot? Can you wiggle your fingers/toes? Can you feel this? Any nausea? Headaches? Double vision? No? Has anything got better/worse? No? Fine. So basically I’m stable – mostly thanks to the copious amounts of steroids I’m taking to try and keep things at bay… but for now nothing’s changing.

I’m told the neurosurgeon will come and see me at some point… no idea when, but they’ll call to ask…

Nothing further happens on Monday.

Tuesday – losing my shit

On Tuesday morning, another neurologist appears, repeats the same checks, the same speech, and leaves with the same promise – we’ll call the neurosurgeon and ask when they’ll come and see you.

By lunchtime, still nothing. And I’m starting to lose my cool… I understand that there are other patients who also need treatment; I understand that some are a higher priority than me; I know they need to make sure they have the right people in the room when they decide what to do, but in the meantime I’m just sitting here doing naff all.

So when the neurologist returns at around 10:30am, poor Dutchie gets it both barrels, Boxy Style: tears, swearing, not quite table banging, but she gets the message and quickly disappears to ‘see what she can find out…’

Two hours later I tell them I’m going out – if they have news, they call me. And off we go. An hour later, I get a call to say a neurosurgeon will come and see me at 3pm.

Sure enough, 3pm and a Neurosurgeon rocks up and escorts us off to a little room for a chat.

So what do we learn?

Honestly? Not much. It turns out that my little outburst got a Neurosurgeon to come and see me, but he’s not the one who will actually work on me. They still need their planning meeting to determine who needs to be involved, and when they can get them (and me) ready.

Me and my simple questions:

• Do they have a plan yet? – Well they feel surgery is the right first step (we kinda knew that) – after that depends on the outcome of surgery – so no Gameplan spreadsheet yet, I’m afraid!
• What would ‘success’ look like for them? – The aim is for me to come out better than I am now (kinda logical), but it’s likely that I’ll wake up worse at first, as brain surgery is pretty full on! So there may be a lull in blog updates again at first, I’m afraid (although I’ll have a couple prepared and ready to go, obvs 😉
• Can I do anything to accelerate things? – No, they just need to plan things in and they’ll give me a date as soon as they can.

Wednesday – still waiting

So guess what happens this morning? I have my vitals checked at 6am, breakfast arrives at 8am, the neurologist I saw yesterday arrives around 10am, same questions, same checks, I’m still stable, the neurosurgeons will have their planning meeting this morning and they’ll give me a date as soon as they can. I repeat my outburst, they show empathy and promise to call the neurosurgeon to find out when they’ll come and see me… Mum and dad arrive at 11am, we tell the nurses ‘You have my number, call me when you know what time the neurosurgeon will swing by… I’m going out to sit in the sun.’

4pm and still no sign of the neurosurgeon.

So realistically, I’m not expecting anything to happen this week… which is driving me insane…

No really, how am I feeling?

I know The team here will do the right thing; so I’m not worried, scared or frightened about having surgery.

And I know they need to plan it carefully, with the right people involved; and coordinating all that isn’t straightforward – specialists, surgeons, neurologists, anaesthetists, scans, bloods – a free slot in theatre is probably the simple bit!

But the waiting game is infuriating – they know that and they see it in my face every time they come round  to see me. I just have to be patient, type blog updates with one hand, and keep my cool. I can’t influence surgery – that’s all in their hands – my battle starts after that when I move into recovery. So I need to maintain my mental, physical and emotional strength for that part of the plan.

How you guys can help

Just keep being your crazy cool selves!

Send me photos of your smiley faces enjoying simple or silly things…

Do stuff that makes you happy and relish every second of it…

Funny memes and normality are better for me than “Any news…?”

And as soon as I have content for my “I love it when a plan comes together!” post, I’ll get it up on the blog, I promise!

#BoxyOut