After meeting my Brain surgeon on our fifth wedding anniversary (scheduled at exactly the same time that our wedding ceremony had started) and my first surgery being on the anniversary of my Uncle’s death, there’s been a degree of confluence of dates during my “journey” so far. It’s been a while but today is not just a double date, it’s a triple one. It’s the day that I have started my Hexycle (and final cycle) of chemotherapy. It’s also five years since I had my 12-week scan with Jennifer and 103 years since my late and beloved Grandad Jim was born. Grandad Jim was such a special person in my life, he deserves a full post, so I’ll hopefully finish and post that soon.
Many Happy Returns
I went to the bungalow briefly on Monday to see the furniture that had been moved, all of which I’ve not seen since 1 September last year. I honed in on the exceedingly good recliner chairs and immediately sat on one: it was just as good as I remembered. I also saw and sat on our Kingsize bed, which was also as comfortable as I had remembered.
Yesterday, after my appointment with a neurologist at the RVI, Graham and I went back to the bungalow. As Graham was re-assembling Leo’s furniture, I sat on the recliner that had been put in position and plugged in. I sat down, duly reclined and watched Wimbledon for the first time this year (Johanna Konta’s match, a great match and result). Not only was it heavenly to be fully reunited with the chair and its electric-reclining wonderfulness, it was very comfortable for both my back (from which I’ve had a few sharp twinges recently) and right foot and leg (which are not fully functional to say the least!). I think it will herald the rebirth of a beautiful friendship!
Keep Your Friends Close…
Yesterday, Graham and I had a reunion with both the RVI generally and the Costa we pass from the main entrance to the outpatients area. After my neurology appointment (see below for details), we marked the dual-reunion with a coffee and a cake for Graham (I only drink mineral or filtered water these days). It was just like the bad old days but it was a happy reunion so I took a “hospital date selfie”:
…And Your Enemies Closer?
I had seen Graham’s piano in the living room on Monday evening but, with my excitement at seeing and sitting on the recliners, I hadn’t thought anything of it. Yesterday, however, as I was watching the tennis, I noticed the piano stool and realised that the last time I had sat down on it, I had almost immediately fallen off it with what turned out to be the start of a full body seizure leading to the discovery of my tumour. I’m not superstitious to fear that the same thing might happen again if I sit on it. Nonetheless, it was strange to see it and think about that day, which at once seems so long ago and as if it happened last week. An ambivalent reunion but the piano stool is not my enemy, the Squatter is!
Today, as I noted above, I was given the go-ahead to be reunited with Temozolomide chemotherapy tablets. I’ll find out late in August when I get my Scan results whether it has been an enemy, friend, frenemy or anemone to me over the last six months.
A minor long-term enemy of mine has returned: cold sore. I’ve not had one for a while but, when I get them, they tend to resemble boulders rather than a mere blemish. A couple that I’ve had in the past have become infected. Still, it’s a minor issue in the scheme of things.
In With the Old…
Yesterday, as mentioned above, I saw a Consultant Neurologist (seizure dude, whose name I can’t remember). We hadn’t met him before and probably never will again as he was an interim Consultant. He is filling in the gap between my previous Consultant, Dr A, leaving in April for pastures grim (Sunderland!) and my new Consultant, who will see me at my next appointment. Yesterday’s Consultant said my new Consultant is a great doctor.
Although it was first time I’d met him, the Consultant had clearly read my file thoroughly so I had the utmost trust in him immediately. He was pleased to hear that my seizures have reduced dramatically in terms of severity and frequency since I last attended the clinic in February. The good Doctor said that he was reluctant to try to reduce the clobazam that I was put on “temporarily” at the end of October (not only have I taken it every day, I’ve since had my daily dose trebled)!
The reason that it’s often prescribed temporarily is that it acts as a sedative so it can reduce quality of life. As I’m coping on that front (the severe daily seizures were tiring me out more than the clobazam is), he recommended continuing with the Status Quo rather than risk knocking me back, particularly as I’m about to start my last cycle of chemotherapy. It doesn’t take much to knock my current relative equilibrium! This is what I hoped he would say (maybe that’s why I liked him so much!) ’cause I don’t want my boat to be rockin’. I will see my new Consultant Neurologist in about three months to check how my seizures are going after my chemotherapy has finished and we have my results.
…And In With the New
This afternoon, I was given my new anti-sickness tablet. It’s a one-off tablet that lasts 88 hours! It will therefore last until Sunday morning, before my last tablets that I will take on Sunday afternoon. In addition, I can continue to use my existing anti-sickness tablets. Hopefully, this combined defence against sickness will work!