When I was younger, we played a lot of board games. Today’s appointment can be summed up by putting the titles together from two such games:
The biggest risk of surgery is that it leaves me temporarily or permanently without mobility in my foot or leg. I was expecting Mr H to give a percentage chance of this as much higher than 30% (the percentage he gave me the last time) but the odds remain the same.
I haven’t had much upward/downward movement in my toes (and the tiny movements have been fleeting and infrequent) and no movement in my ankle since my very first seizure. I was willing to sacrifice further mobility when we thought it was a grade two tumour so now it’s almost certainly a grade four then, to me (and my family), it’s a no-brainer to go full steam ahead (puns intended). Besides, even if we don’t scoop as much out as we can now, I will definitely lose my mobility and the degree of independence I’ve built up anyway as the tumour continues to grow. From that perspective, I don’t think I’ve got much to lose.
Mr H explained that when he performs awake surgery on grade two tumours (which is how the Squatter was categorised pre-Craniotomy), he is aiming to remove as much tumour as possible without causing any mobility or other issues that patients have to live with for years and years. Grade four is a different story. It’s time to “go for broke” (yes, those were his actual words!). The aim is to remove as much as he can to prolong my time in the game of life.
He added that, even if I was awake, if he hadn’t removed as much as he thought he could, he said that he “would probably ignore” what I said and carry on regardless! As well as avoiding the irritation of Mr H ignoring me, being under a general anaesthetic reduces the chances of seizure activity occurring during the operation. He said that, from the evidence of my ongoing seizures, my “brain is very sensitive to irritation”. There you have it: an expert medical opinion as to why I get so exasperated….
A Waiting Game
I said that I was almost certain that I would go for it. Mr H said that he wouldn’t ask me to sign on the dotted line without giving me a chance to digest what we had discussed. I will sleep on it and ring up tomorrow to confirm assuming I haven’t changed my mind. In the meantime, plans are afoot. My surgery is set for a week on Thursday (12 April). I’ll have to go to the RVI for a pre-op check (an “MOT” in Mr H’s words), which will probably be on Monday.
Colour Me Beautiful
The photo below is from my scan a couple of weeks ago. After asking if I wanted to see the scan (duh!), Mr H brought it up on screen. The green box shows a bit in the cavity that shows up on the perfusion scan as having some blood flow but could be a mixture of scarring and disease. The bit in red is beneath the cavity. This is the bit that Mr H is worried about. It is almost certainly all tumour tissue because the perfusion scan showed a lot of blood flowing to it and through it.
The almost-certainly-tumour bit (circled in red) is underneath the cavity and, in my amateur neurosurgeon’s opinion, I thought it might be harder to get to. In Mr H’s opinion, it’s a piece of cake (there’s just my scalp, skull and part of my brain in the way!). I’m happy to defer to Mr H’s expertise!
To scoop it out, Mr H will need to cut into my left ventricle. This is not as problematic as it sounds, it just means that the expert might need to insert a drain to avoid the CSF (cerebrospinal fluid) leaking from my holey ventricle and out through my wound. CSF in my wound would interrupt the healing and increase the risk of infection. Instead, the drain will take it to be disposed elsewhere – my back is a potential exit site.
Transformer: Tumour in Disguise
As usual, the Squatter is atypical. Mr H said that, after the disappointment of the upgrade to grade three, he had gone back to look at the scans to see if he could see any possible sign of cells that were in the process of transforming into a higher grade tumour. Even with the benefit of hindsight, he couldn’t see anything. The tumour’s recent growth spurt is also atypically progressive (in the regressive sense of the word). “I don’t do normal” was a sign I had on my door at university. It’s turned out to be tragically true.
My parents had said a few weeks ago that they would have the kids for a couple of nights so that Graham and I could have a break. We decided to wait until after my results before booking. With my appointment today and the unknown of future appointments, on Wednesday night we booked a last-minute trip to Lakeside, at the bottom of Windermere. We drove over on Thursday evening after Graham got back from work and came back on Saturday afternoon.
On both nights, we ate in the hotel’s restaurant. On Thursday, when I looked at the menu, the first thing that I spotted was steak.
The words “Grade 4” jumped off the page and hit me smack in the forehead! We took it as a sign that we should both have the Wagyu. It turns out that not all grade fours are bad; this was the most mouth-wateringly gorgeous steak we’ve ever had!
Also of note were little steak knife blocks and a “flight” of wines for Graham.
On Friday morning, Graham went downstairs for a swim and spa while I had a lie in.
I wrote my previous post as I looked out over Windermere.
On the left is the view from the living room of our hotel suite; and, right, the view from the conservatory/orangery where I had lunch on Friday when Graham was having a decadent 105-minute full body massage.
After lunch, we drove round to the other side of the lake to a National Trust place, Fell Foot. We took a short walk along the lakeshore and enjoyed the fresh air and views.
Easter Fake ‘N Shake
The reason I didn’t refer to being in the Lake District on my last post is because I had a secret mission to accomplish before making my whereabouts public. My dear friend Gilly manages a hillside cafe and is working every day over Easter. On Thursday, just before we set off, Graham had texted her husband Nick to ask if the cafe was at all accessible for us to surprise Gilly by turning up at her cafe to report for duty! (She had joked a couple of months ago that I had been a rubbish waitress in her dream.)
Nick hatched a secret plan with her colleagues to get me up there. We needed an ATV (All Terrain Vehicle) after parking at the farm. Gilly’s colleagues had ensured that there was one in the barn for Nick to bring us up in. It was a two-seater vehicle so Nick drove with Graham in the passenger seat and me sitting on Graham’s knee. It was too bumpy and bone shakey to take a team selfie mid-drive up the winding and steep bridleway. It was an absolutely awesome way to surprise someone. Nick pulled up right in front of the glass doors to the cafe and got out. I saw through the steamed windows that Gilly was standing there at the front door and heard her ask what Nick was doing there. He said he had brought someone to see her, by which time Graham had opened the door. Gilly burst into tears even before I got out of the vehicle.
Once we got in through the doors, Gilly looked at her team and asked if they’d been in on it. Their grins showed her that they had indeed. We then had a chat, hugs then, as Gilly had wiped her tears away, we took some photos. After a while, Gilly then took us for an even hairier drive back down in a six-seater ATV. We went down a steep and bumpy wet field for some red deer spotting (no deer, oh dear) and along the side of the lake. It was bumpier than any rollercoaster, camel or safari drive I’ve been on and it was awesome! We then finished the trip with a walk to a field to see fresh lambs that will grow up to taste nice with mint sauce. We also saw a couple of Herdy sheep.
It was one of the most rewarding surprises I’ve ever instigated. Gilly had no inkling that anything was about to be sprung on her and didn’t realise that it was a surprise until I was right in front of her. Gotcha girl!
Thanks to Nick, Nicola and the rest of Beckside Farm’s Cafe staff for making my dream come true. It made a holey-brained lady very happy to see her amazing friend’s delighted reaction.
We got back home on Saturday afternoon and enjoyed Easter Sunday with the kids and the Rents. After an Easter Egg Hunt and feeding the two newest members of our family, we had a relaxing afternoon before enjoying a Sunday Dinner cooked by the Silver Chef.
Following the interest in last post’s Book cover (which elicited some strong opinions on Facebook), I thought I’d share some things in the Hotel that made me smile or wince. Guess what made me wince. And guess which photo is going to be my new profile picture on Facebook!
PS I almost forgot to mention the quote of the weekend. We were sitting in the conservatory after dinner on Friday. Graham spotted a large plant about six feet away and said, “oh, is that broccoli?” and then on going close enough to read the label, he answered his own question, “no, it’s a geranium”! He’s a silver fox but not a green-fingered one.