Leo seems to be embracing the Mother vs Son competition I introduced in The Benign Prerogative. He’s been checked over and there’s nothing to worry about unduly, but a high temperature and some spots cut short his nursery day today. The doctor thinks it’s Hand, Foot and Mouth disease, a virus that he had without any problems a few months ago. He’s a bit clingy but is eating and drinking ok, which is the most important thing. Calpol is keeping his temperature under control.
In light of recent events, the little man might well be trying to earn some Drama Points and regain the title and limelight of being our immediate family’s “Most Worried About Cole”. He therefore gets top billing on the blog today, which I hope will appease him and stop him developing any more exotic ailments.
What’s the Frequency, Scanman?
The scan this morning went absolutely fine. To give away the ending first, Mr H confirmed that the scan showed what he was hoping for, which is that the Squatter is not living in (or too close to) the part of my brain responsible for my fine motor skills.
The lovely Neurological Tester Consultant Scannerman thankfully didn’t try to run anywhere or hide me under a rock. Unfortunately (or fortunately, depending on your point of view), he was not called John with a couple of hits from the mid-1990’s but was called Philip and was wonderful. I highly recommend him for all your neuro-MRI scanning needs. The aim of the scan was a success, which is the most important thing, but I’ll also share some minor disappointments (one of which is with myself).
(i) Whereas I had Smooth Radio to help cover up some of the strange and loud noises during my previous MRI scan, this time the “testing” meant I was allowed headphones but no music. Two of the constant noises reminded me of: (a) metronomic dog barking; and (b) the bassline of a generic pop song. The various other noises were of aurally offensive frequencies and volumes that were piercing and mean the MRI suite gets a 1-star rating for ambience.
(ii) Limited Testing
I was slightly disappointed by the limited testing carried out (I’d stayed up late revising and everything). All I had to do was touch each of my right fingers with my right thumb until I was told to do the same with my left hand (mutatis mutandis*) and concentrate on what I was doing. I swapped between hands at least half a dozen times.
I should clarify that I swapped hands at the Consultant’s request each time, not just unilaterally. I don’t (yet) feel that I’m enough of an expert in MRI scanning to assume control (see (iii) below for proof that this is true). Give me a few more scans to crack it.
(iii) Time Waits for No Idiot
I took out my earrings and had no rings on before I even left the house this morning at what felt like the middle of the night. I confidently confirmed to Philip that I wasn’t wearing any metal; I had the scan; and, I left the MRI area by 8am this morning. Less than five minutes’ later, Mam wheeled me back into the MRI reception to double-check that I’d not messed up the scan as I had just realised that I’d forgotten to take my watch off. D’oh! Thankfully, the scan was fine and the only casualty was my watch battery, which stopped as soon as the scans started.
Master of My Brainiverse
Within a couple of hours after the scan, Graham and I met Mr H and Katie (one of the specialist nurses). Graham had arrived at the hospital after dropping the kids off at nursery and took over responsibility for wheeling me around on my hot wheels. This gave my Mam some respite care (during which she went food shopping for relaxation).
The aim of the appointment was to go through the consent form for Thursday’s fun and games. I (of course) had a further list of questions as well. I got my iPad out to check that I hadn’t forgotten any of my queries and now realise that I missed a chance to take a photo of the man himself. D’oh again. This is what happens when I’m forced into an early start, I get knocked off my game!
The key points I took from the meeting are:
- I have to be nil-by-mouth from 2am on Thursday. The Steroid Baby hasn’t required food overnight for a while but I might need to set an alarm to avoid a tantrum on Thursday (see the next bullet-point).
- I was gradually weaned off the steroids by Saturday so had none yesterday. However, in preparation for the operation, which will cause swelling, Mr H put me back on a relatively high dose of the dex as of this morning so I’m expecting the Baby to stop sleeping through soon.
- I need to report for duty for brain surgery assistance by 8am on Thursday at Ward 17. The four-ward flush will be mine, hurrah! Gabrielle was right all those years ago.
- There’s an operation scheduled before mine so, as I suspected, I’m unlikely to be allowed into the theatre until midday at the earliest.
- Assuming it goes as planned (i.e., no seizures or other problems and good access roads for Mr H to get through my brain channels to the Squatter), it will take about three hours in theatre, plus a bit of preparation time for starters and some recovery time for afters. So, just to set some expectations, don’t expect to hear from Mr Pithy until after 5pm at the earliest.
- The RVI’s procedures are such that, following each “awake” craniotomy, the patient must be taken to HDU. Therefore, if there is a sudden rush on urgent beds in the HDU over the next few days, they might have to postpone my procedure, so let’s hope not (both for my sake and for all those who hopefully won’t need to be rushed into hospital this week).
- My worry until today was that a postponement would mean the next “awake” surgery day, being 27 October, would be my new surgery day. The prospect of having my second brain operation on the 10th anniversary of Graeme’s death did not fill me (or those around me) with a whole lot of pleasure as it felt like a day that would have too much for everyone to cope with. Mr H is away on holiday that week, though, so that date is out. Phew.
- As I suspected, I’m going to be in a propped-up almost-sitting position, rather than lying flat on my back.
- My head will be pinned to a frame that is bolted to the theatre table. Apparently, attaching the frame is the most painful part so they drug me up a bit with both sedatives and a “halo” of local anaesthetic. I’m unlikely to remember the first part of the operation. For a weirdo like me with a neck sensitivity/phobia (who can’t wear necklaces very easily and never wears T-Shirts that are close to her neck), thankfully the frame is only attached to my head and does not involve neck braces or other horrors to send me into a tailspin.
- Sometimes, Mr H adds an extension to the frame on which he can hang some surgical instruments, although he doesn’t think that he will use it for my op. After he described it, I suggested that it sounds like a tool belt and he agreed with my analogy.
- Screens will be put up around my head so that I can’t see any movement above/around my head. The frame prohibiting any head movement and my lack of x-ray and 360-degree vision makes me doubt I would see much anyway but I kept that thought to myself. Mr H likened my view during the surgery to sitting under a table. There’ll be a Neurological Consultant (and possibly others) at my eye level during the surgery, who’ll be responsible for keeping me entertained during the show by monitoring my movement and other relevant brain facilities, checking I don’t lose any more marbles than have already deserted me. Mr H will also be asking me questions but he’ll be behind/above me getting stuck in.
- The team will need to shave a larger area of my hair this time to enable them to peel back a bigger area of my scalp. I’ll have a bigger bandage 🤕: I told him Jennifer had been disappointed with the last one and it’s unlikely that will happen this time.
- Mr H then explained, and I promise I’m not paraphrasing, that he will “cut out part of [my] skull using a sort of jigsaw”. I’ve now got mental images of him hanging his jigsaw on a tool belt attached to my head. No wonder Hannibal keeps coming to mind!
- I’ll have staples again but am likely to have more pain this time in and around the wound. Pain means a legitimate reason for legal drugs, though, so it’s all swings and roundabouts.
- After all that, I signed on the dotted line and managed to resist writing in something inappropriate (e.g., “but only if Clarice turns up too”).
Days of Our Lives
The recent absence from the blogging circuit has been caused by a good few days. There have been lovely times with the kids as well as visiting friends and family. You should know that I’ve prioritised getting this blog post out over watching a recording of last night’s Debate or listening to any podcasts about it. In other words, y’all are more important to me than the American Election (just).
I’ve had a definite increase in energy levels over the last few days. As I’ve said to a few people, I was never Little Miss Duracell to start with, so I’ve got less distance to travel to recover than most, but I’m pleased nonetheless. My movement is slightly better too, and my confidence is increasing.
The Twilight Saga
The Stacey family braved the rain and completed the 10km Twilight Walk in Chester on Sunday evening to raise money for The Brain Tumour Charity. It means a lot that they stepped in (literally), that our places didn’t go to waste and that so much money has been raised. Thank you all.
All photos on today’s blog come from those who Walked the Walk and the link to sponsor them is here. Bek’s status after the Walk on Sunday night was:
Thank you so much to everyone who sponsored us today! (Not too late if you still want to…) My 2 year old who insists on being carried whenever possible managed an amazing 5km before jumping in the buggy and the two bigger ones made it round the whole route with plenty of smiles and high-fives. We will however be driving to school tomorrow 🙂
The day our Twilight Walk pack arrived containing our T-Shirts and fundraising information, was the first time I ever used the words “brain tumour” to Jennifer. I talk about Uncle Graeme quite a lot with her. I mostly talk about things he liked and memories from our childhood and I show her photos, much in the same way I would if he hadn’t died. I made a conscious choice not to talk about his illness and death with Jennifer until she’s older, hoping to build up a cache of positive thoughts of her uncle before she is old enough to understand what happened to him.
The pack arrived just a week or two before Squattergate kicked off. I opened the parcel and told Jennifer that it was exciting because the four of us were going to be taking part in a walk to raise money for charity. I showed her our T-Shirts and she asked me to read what they said, which I duly did. On further questioning, I explained that the Brain Tumour Charity helped people who have Brain tumours. “What’s a brain tumour?” was her obvious next question (unsurprisingly, given that she’s my daughter, she likes to know what’s going on).
I said that a brain tumour is something that has gone wrong with people who have poorly heads. “Do you have a poorly head, Mammy?” I suspect that she asked because she was aware of my sporadic migraines so I inadvertently lied in seeking to reassure her. “No, darling, Mammy doesn’t have a poorly head, don’t worry.”
That’s a memory I have flashed back to a fair few times over the last month or so. After deliberately avoiding the words for the first 43 months of my daughter’s life, it’s striking that the first time I mentioned “brain tumours” to my daughter was less than two weeks before I was diagnosed with one.
We haven’t yet told Jennifer specifically that I’ve got a brain tumour (although I’m almost certain she’ll have heard it mentioned by someone, no matter how careful we are trying to be around her). She knows that I’ve got a poorly head and a poorly leg. We will tell her tomorrow that I’m going back into hospital on Thursday for another operation (and bigger bandage this time!) and we will explain things one step at a time as we go along.
Corrections and Clarifications
My reference in Cole’s Miscellany (Part Seven) to a “selfish swine not worth her salt” has unsettled a few people worried about which nasty person has upset me. As I was talking about the lovely Elmer, it brought to my mind a comparison with the least “moral” pre-school character that I’ve come across. The character is mean and gets away with it: she never seems to get any come-uppance or to teach kids any useful life lessons. For those reasons, I’ve never let Jennifer watch an episode.
I thought I’d left enough clues but it was possibly a bit too cryptic for those lucky enough not to have come across the nasty hog. “Selfish” was my description of the character; “swine” pointed to the fact that I was referring to a pig (in both the literal and metaphorical senses); and, “not worth her salt” both described her uselessness as a role model and, I hoped, acted a pointer to her name by association. Yes, Peppa Pig, I’m talking about you. You are an abomination.
P.S. I have added another scorecard to the segregated section of The Benign Prerogative, which occurred to me yesterday.
[*I’m not a fan of (and don’t understand) most Latin terms used in legal writing so I usually go with plain English, but I had to use this one as it always makes me think of my all-time favourite project and client when we set up a children’s TV channel. The client noted that the phrase sounded like a “Hakuna Matata” clause and so we referred to it as such during meetings, even when the other side were present. Ever since, the term has made me chuckle (you have to take the laughs where you can get them!).]
Two-thirds of Team Stacey.