Yesterday was an emotionally weird and difficult day. I spent the day unable to identify most of what I was feeling other than “meh”. Here’s an update about things I can identify, albeit not as eloquently as I’d like (I’m feeling sleepy).
His Loss Is Heavy, He’s My Brother
I miss him desperately.
One of the things that I have thought a lot about in recent years is trying to fit Graeme into my current life. I left London as a direct result of Graeme’s terminal brain tumour. I met Graham (who was working for my new firm as an indirect result of a different terminal brain tumour). If it hadn’t been for Graeme’s death, I therefore probably wouldn’t have met the silver fox. I wish it didn’t have to be one or the other.
We have two lovely children and a family home we love, none of whom or which Graeme ever met or saw. Four years ago, my parents moved out of the only family home Graeme ever knew, so he never saw their current home either. Of course, had he lived, who knows what Graeme would be doing by now and where. Whether he had gone back to Inuvik and settled there, stayed in Stockton or done anything else, I have no doubt that he would be an integral part of my life. I miss the actual Graeme who lived and the 10 years of hypotheticals. It gets more difficult as the years go by to try to reconcile my two lives with and without my brother.
Illnesses to Jennifer (probably Hand, Foot and Mouth disease), Graham (tonsillitis) and Ma Rent (sneezing and cold) meant that I didn’t see any of my immediate family yesterday other than my Dad. That left me feeling a bit sorry for myself and made the day even stranger and more difficult.
Seize and Resist
The increased doses of two anti-seizure drugs has undoubtedly reduced the frequency of the fits over the course of the week. I had a seizure just before 8.50am on Wednesday and, as time went on, was hopeful that it marked the last one in a while. However, yesterday’s rubbish day ended rather fittingly with a fit at 10pm. Of course it did, because what else could add to the joy of being in hospital with a brain tumour, unable to see my hubby, Mam and kids, on the 10th anniversary of Graeme’s death from a brain tumour?
The neurologists decided this morning to introduce (for a limited period only) a third anti-seizure drug, clobazam, into the mix. I had my first tablet earlier this afternoon so let’s see what side effects I develop over the weekend! Nothing so far, thankfully.
My biggest worry about the return of Dr Strangelove has been that he will either delay my surgery further or reduce its efficacy. On the delay front, the neurologists are not recommending a delay but the final decision is Mr H’s and he’s not back until Monday.
The introduction of a new drug, seizure uncertainty and my lack of mobility mean I’ll be staying in hospital over the weekend. I’ll be transferred from here at the QE Hospital in Gateshead to one of the Neuro wards in the RVI in Newcastle either sometime on Sunday or first thing Monday morning. I won’t know until Monday whether the surgery is going ahead so that’s a bit of suspense that I’m sure will help the mental health of all those around me!
Although I obviously want the surgery to go ahead if it’s safe to do so, my worry about what a delay might mean for my longer-term prognosis was eased by the news earlier this week that the tumour has not noticeably grown since the start of September.
I hadn’t worried (consciously at least) about the tumour growing given that Mr H said it won’t have grown much in the five months between my migraines starting and diagnosis of my tumour. Logic sometimes goes out of the window, though. As I was about to have my scan the other day, the radiologist explained that they would be doing two scans: one without dye, then another after dye had been injected into me. The reason for the dye is that it can light up cancerous areas like a lightbulb.
Immediately, a bit of internal panic set in. I wondered whether they were using the dye because the doctors suspected that, not only had the tumour suddenly exploded in size, but it had transformed from a grade 2 to grade 4 tumour. I then flash-backed to Graeme’s surgeon telling us that his grade 4 tumour (nicknamed Marla by Graeme) had probably been there 6-9 months. I wondered if Marla might have been there longer but had experienced such a sudden transformation that threw off the estimate. If that had been the case, I therefore worried that I might actually have a worse prognosis than we have been told.
Fortunately, 🐱 scans are quick so I didn’t have too long to panic about this (less than 10 minutes). When I got back to my en-suite room, logic came back. I reasoned that Mr H would have mentioned any super weird Tumour transformations that could occur. My panic therefore subsided as quickly as it went even before the news of the scan results came in.
Message of the Week
I had subconsciously “banked” this week before my rescheduled surgery as one that I would be able to spend with friends and family before embarking on an unknown period of time with an unknown amount of energy and an unknown level of mobility. Instead, I’ve been in hospital all week, I haven’t seen the kids since a fleeting visit on Sunday evening and my mobility is poor.
Although the movement in my right side is better than it was on Saturday and has improved gradually each day, this is very much relative. I can walk 10 or so steps with my splint on if I’ve got a frame or a helper or two to stop me falling. Leo is definitely winning on the independence front: he’s walking around the house no problem!
My right arm would have full movement except for the side effects of the IV drip on Monday. The swelling and redness are much better, as is the tenderness, but I’m not back up to full typing speed. See photos below with the progression (and recovery) of my alien arm.
So, it’s not been easy the last few days but I’ve cried when I’ve needed to and I’ve ranted and rambled when I’ve needed to. I’m still standing (metaphorically at least) and I’m ready for what’s next (or not next if surgery is postponed).