Tomorrow, five years to the minute since our scheduled wedding ceremony start time (and actual start time because miracles do happen and I wasn’t late!), Graham and I will be “celebrating” our anniversary with my Consultant Neurosurgeon at the RVI, Mr Holliman.
Not quite what we planned. In honour of the occasion, Saturday was due to be our first kids-less night away since Drama Boy joined our family. We had planned a country or coastal walk followed by the Toon match on TV (we are still gluttons for punishment even after two relegations and countless disappointments, embarrassments and false starts for our wandering zebras during the course of our relationship) and then a meal and the best room in the Northumberland Arms in Felton.
The timing of the appointment therefore could feel less like a cruel joke, but there’s no good time to need a neurosurgeon is there!? Please forgive me the sentimentality in this post (as well as in all future posts – I might as well request blanket approval for sentimentality as I lapse from my icy persona from time to time during this saga) but in some ways, when could be a better time to live out how seriously we took our vows?
Snap Health Check
Not much has changed in the last few days health-wise. I’m still in no pain, on no painkillers and my movement is about the same in my right leg, which means I can get about mostly fine and (briefly) pretend to be a paw patrol pup, pony or whatever else Jennifer has dreamed up for our role plays. To keep you in the loop, Grandma’s pony name was “Grass”, Jennifer’s was “Glitter Queen” and mine was “Beautiful Blonde”! Poor Grandma didn’t do so well on that one!
Back to movement, I just have to concentrate more to achieve what I can. It’s a bit like when you’ve had a few too many glasses of wine and require extra focus to look like you’re walking normally: I probably don’t look normal but I mostly get where I want to be and I haven’t fallen over despite ambitiously choosing the swing chair outside a fair few times.
The only real change is the steroids-induced hunger, which has ramped up a lot over the last couple of days even as the steroid dose has already started to go down. My food intake started at 4 am this morning with packet of crisps and most of a packet of cheese crackers and I’ve just finished my umpteenth meal/snack with a bowl of Shroomy Soup!
- I’m not expecting a definitive diagnosis of tumour type tomorrow as I understand that this is not possible without operating and testing the squatter, although maybe they can give me an educated guess.
- I am hoping for a surgery date (preferably early next week).
- I obviously plan to suss out the level of expertise of my surgeon but am planning to hold off on trivia quizzes as I don’t want to intimidate him (I’d be pleasantly surprised if he too could recite the American states in alphabetical order but I’m not listing it as a pre-requisite for the man who will examine my brain).
- I expect he will want to ensure that I have all the information I want and need based on what we know so far.
- We’ll no doubt spend some time talking about our illustrious family history of brain tumours.
- I want to know what to do if I feel a migraine coming on as the regular migraine medication seems a bit irrelevant in all of this. Hopefully the anti-seizure medication will do its job and this will be all academic.
My two biggest fears worry me in equal measure and I need to set them down right here and right now as there’s no easy way to express them.
I worry that my kids might never remember me if this doesn’t turn out well.
And I worry that the impossible odds mean that there’s a genetic reason why Jennifer and/or Leo might develop a brain tumour too.
I don’t yet have much to add to this, but it’s what I’m contemplating the most. I have to warn you, there will be a lot about these happy scenarios in the days and weeks ahead so brace yourself.
Unfortunately, most people have personal experience of how little actually changes in the real world despite life-changing news and events. Food shopping, hoovering, cooking, washing and everything else all still need to be done. Happily for me, they were never my areas of expertise anyway so my life hasn’t changed too much this week in that respect. Indeed, I announced to Graham just last week the news of my retirement from cleaning given a shower cleaning incident that jarred my back and clogged up the pipes. If Graham were a less generous husband, he might have expressed surprise at the news that I hadn’t retired years ago!
I digress as ever but I mention this to thank people for their kind and generous offers of help and for the massive help that’s already been provided. Soup; childcare; anecdotes; book, TV and film recommendations; and: visits, texts and emails to name just a few. I assure you that we are not too proud to ask for help so don’t offer unless you mean it!
Seriously, when we have a clearer path for next steps, we will be calling more and more on the collective power of our amazing group of family and friends. Thank you in advance!
PS I updated the “About” part of the blog this morning, which I hadn’t realised was there until I got notifications of how many people had read that part of the blog! I have also hopefully removed the generic “Add Widget” text, which wasn’t adding anything to my cyber world – I spotted it when trying to clean up the settings. This is more sophisticated than the blog site I used when Graeme was dying, so I’m unfamiliar with it. Please do let me know if you spot any gremlins or have any tips or suggestions as to how best to use it. I have been known to argue with my bosses about the correct use of a comma at 1am so I’m also happy to take spelling and grammar suggestions/corrections!