After today’s launch of the 20th radio rocket to knock it (time for a Double Length Testimonial perhaps?), I have eight sessions to go. So the traditional Starter from Ten Countdown has already begun, it’s just taken me a couple of days to write a post about it.
Down to Zero
I feared beforehand that it wouldn’t be recommended (or even permitted) for me to begin radiotherapy treatment while the seizures were still continuing at the pace they were. I further worried that, even if I wasn’t delayed in starting the treatment, a seizure on the table or increased seizure activity generally would halt or suspend the radiotherapy. I will naturally be pleased if I finish the prescribed schedule and complete the Countdown Down to Zero.
During radiotherapy to date, the primary focus of each “working” day has been getting me to my appointment. This has meant that I’ve been unable to do anything “active” (in the loosest possible sense) even on those mornings when I’m feeling relatively energetic. I fear overdoing it and triggering a seizure before or during radio. The end is in sight for that daily commitment/worry.
The end is also in sight for the two-hour round-trip (including contingency and zapping time) that it typically takes out of each day, which will be freed up for something. In the short-term, that freedom will probably just involve more resting in the Ice Cave (a Double Hour Restimonial perhaps?), but hopefully I’ll be able to spend more time with the bairns as well.
A Donkey’s Tale (Part One)
On the other hand, the Countdown has brought sharply into focus the issues of what the end of this phase of treatment means. Primarily, how effective has the radiotherapy been/will be in stopping the Squatter moving into other parts of my brain?
I will have another appointment with Dr M between the end of my radio and the beginning of chemo to run through exactly what it will involve and the possible/likely side effects. I assume that they’ll do another scan before I (all being well) start my chemotherapy in February/March. In a bid to predict what any such scan might show post-radio, I have been trying to gauge the success of the radiotherapy going by “how I feel”. I accept that this might be the medical equivalent of trying to pin a tail on the donkey. Just like the donkey game, though, my low chances of success haven’t stopped me from participating!
I’ve been attempting to assess and weigh up each factor that might be relevant. This is based on, among other things, what I (think I) have gleaned from my various consultants, the changes in frequency and severity of my seizure activity, side effects (or lack thereof) and general Squatter symptoms. Add to that mix a great big dollop of guessing and I’ve got an enigmatic mystery wrapped inside a conundrum in the middle of a labyrinth. In other words, I’ve not even found a tail to pin on the donkey!
An expanded edition of this Donkey’s Tale might well warrant its own post if I can sufficiently articulate my Brain of Thought. I tried to write it down logically yesterday afternoon. I didn’t follow my own meandering thoughts upon re-reading it and so I didn’t know how best to edit and restructure! A work in progress or another draft left on the reject pile of posts? Time will tell.
Radio Blah Blah
One thing that concerned me yesterday was the calling of my second Bingo number (see The Midterms). I am usually in Room 6 and have contact with two of a pool of radiographers “working the room”). My ears pricked up when a (new to me) radiographer read from my sheet of Bingo Numbers “plus 1.3 on the lateral”, which is the first of three instructions to the second radiographer to set the 3D coordinates for my Radio position. You will know if you’ve paid attention that this number had always been “minus 1.3 on the lateral” for every single one of the previous 18 appointments.
I thought for a second that I hadn’t heard properly, partially because, as usual, I was wearing a swim cap and The Mask, and partially because I was enjoying the music at the time (Man In the Mirror) and therefore my attention was not fully on the Bingo game (I already knew the outcome, or so I thought).
She immediately repeated the number (as they often do) and I was even more certain she was saying “plus” rather than “minus”. For the first time, I attempted to speak through the Mask to correct her by saying “minus”. Speaking wasn’t easy as my face is literally locked into position, so I couldn’t be sure that my words weren’t muffled. I repeated it louder and the second radiographer, standing next to me, told the unknown radiographer who had read a false positive, “she’s saying minus”. The unknown radiographer immediately said, “minus 1.3 on the lateral”.
The rest of the session proceeded as normal but I was lying there slightly worried (a slight understatement) that they would have put me in the wrong position had I not spoken up. As the position is the basis for which the machine is programmed to target my grey cells hosting the Squatter, I imagined a wrong trousers/brain kind of zapping.
The familiar radiographer who came back into the room to release me from The Mask implied that the radiographer had indeed made a mistake (she talked about “all of us” getting confused). She reassured me that they always check the numbers a few times before they leave the room and again once they are in the control room so that there are multiple checks and balances before the machine is programmed. I said that I was pretty sure the other radiographer had said “plus” so I had just wanted to confirm and clarify and the radiographer absolutely agreed that I should check or ask questions if something doesn’t seem right.
There is a reason why there are checks and balances, including multiple radiographers, because human error can creep into any situation. I’m almost certain (99%) that any mistake would have been caught without my intervention given that the later numbers are measurements that are determined by reference to the position I should be in. Nevertheless, gee whizz, do I have to supervise my own radiotherapy treatment as well as my own craniotomy?!
For Whom the Bell Tolls
There’s a bell near the radiotherapy/chemotherapy reception with a rhyme printed on a plaque next to the bell. The rhyme invites people to ring the bell when they have completed a course of treatment, in response to which anyone and everyone around (including radiographers, nurses and consultants) gives a hearty round of applause. We’ve heard a lot of bell-ringing as we’ve spent time in the waiting area.
The bell-ringing doesn’t mean that the patient is cured or in remission so we (as well as they, perhaps) don’t know exactly what lies ahead for them. Some people tentatively ring the bell quickly, possibly embarrassed by the attention or perhaps emotionally overcome by the end of whichever Act in their tumour journey it has been. Some people have their photos taken as they ring the bell, smile excitedly and practically skip away down the corridor.
On Tuesday, we saw an older lady ring the bell and give a big hug to one of the radiographers, which was touching. My Mam said that when she and Dad were waiting outside while I was in the Room, an older lady rang the bell and her husband had said gently “see, you made it all the way through”. My Mam told me that she welled up. There’s a different combination of emotions I see with practically each bell ring: excitement, relief, tears of sadness, fears and/or uncertainty about what’s to come, but I don’t usually dwell on them much more than a couple of minutes.
Yesterday, however, we saw and heard a bell-ring that affected me deeply. A woman who looked younger than me (not hard at the minute, I confess) rang the bell while holding a baby who didn’t look newborn but certainly wasn’t much more than a few months old. The baby was hooked up to an oxygen tank. I don’t know whether it was the mother (I assumed it was her baby) or the baby who had finished a course of radiotherapy or chemotherapy. Either way was heartbreaking to think about.
I haven’t previously looked at someone and speculated as to their prognosis but, whether it was the baby or the mother who has had treatment, I can’t help but hope on their behalf that they have a positive prognosis in the circumstances. Not that I don’t wish the same for everyone undergoing treatment, you understand, whether they ring the bell or not!
It Tolls For Me?
I haven’t yet decided whether I’m going to ring the bell after my last radiotherapy session. It seems weird for me to ring the bell signifying the “end” of treatment when I’ve hopefully got six months of chemo to follow. Also, I am naturally inclined to avoid attention in real (non-blogging) life, which is one of the reasons why I choose to blog not go around shouting from the rooftops:
“Writing is something you do alone. It’s a profession for introverts who want to tell you a story but don’t want to make eye contact while doing it.”*
(Another reason for not shouting from the rooftops is my ongoing mobility issue, meaning I’m unable to climb up on to any rooftops from which to shout!)
Graham has encouraged me to ring the bell, but I think I’ll make up my mind on the day.
On the Cole pre-schoolers front, we applied just over a week ago for a school place for Jennifer to start in September. No prizes for guessing whether it was Contingency Cole or me who submitted the application with plenty of time to spare before the deadline of next week!
I Just Can’t Stop Cuddling You
From my perspective, Jennifer’s birthday was a success (relatively speaking). It was an effort to get up and watch her open her presents in the morning and then again to leave the Arctic West Wing of the house to spend an hour or so with her after nursery in the Fiery East Wing. We played her new “Bunny Jump” game, complete with carrots to pull out (although Leo kept putting them back in), lit the four candles on the Unicorn Cake and sang once again to our little lady. It cost me a couple of seizures, one at about 7.30pm and one just before midnight, but that was a Sports Direct-esque rock-bottom price to pay to spend a couple of hours with my girl on her birthday.
On Tuesday, when she got back from nursery, Jennifer happily spent some time in the room that is Cold as Ice with me and Mam. She snuggled in under the duvet between us and giggled with the excitement of it being “the girls together” in bed. She reached out like the Angel of the North that she is, put an arm around each of our necks, brought us in tightly to cuddle and pronounced: “I Just Can’t Stop Cuddling You because I love you so much!”. That made me so happy, I could hear harps and angels sing.
All By [Your]self
On Wednesday morning, I popped into the dining room briefly as the kids were having breakfast with Daddy and Grandad. Jennifer beamed and exclaimed when she saw me: “Mammy, you’re standing up! All by yourself!”. And indeed I was!
Bish Bash Bosh
Leo has been (affectionately) known as “Basher Cole” since we found out at the third or fourth (of six) scans that he was going to be on the heavier side of baby bell curves. The name has been somewhat revived recently as he likes to walk around like he owns the place bashing some form of object on the floor as he goes. He knows that the wooden/tiled floors outside of the carpeted living room makes the most noise so that’s usually where he heads.
The longer the “bashy stick”, the better. The cardboard tube from a roll of wrapping paper is good, despite it being (or perhaps because it is) longer than he is. The Real I Am, however, was the wooden stick that he pulled out from a Christmas wall-hanging. He was delighted to discover that it made an absolute racket on the tiles and walked about bashing it until we took it off him.
Leo also has a different nickname with the acronym CC (just like his contingent-loving Daddy, which is appropriate for the visual carbon copy mini-G that he is). “Cleaner Cole” squeals with excitement when he finds a wet wipe, tissue, cloth or equivalent, and happily sets about cleaning a particular section of the hallway floor. I definitely can’t take the credit for that side of his personality as I’m pretty sure he’s never seen me wash or clean a floor!
I’m feeling less infected and affected by the plague that afflicted me so much earlier in the week. Certainly, my temperature (which was what I believe triggered the multi-seizures on Sunday) has not been more than 0.3 degrees higher than the RRP**, whereas it was hovering around 2-2.5 degrees higher on Sunday morning and 1-1.5 even after the IV paracetamol had seeped into me. I’ve not had a Doozie since Sunday but instead have had a number of meizures and inbetweeizures.
Leo’s been a bit under the weather this week with the hacky cough doing the rounds. He’s getting plenty of fluids and eating sporadically and seems to be bouncing back. Graham, meanwhile, has succumbed to flu-like symptoms over the last day or so. Of course, it could just be frostbite, as he swore this morning that he had been snowed on overnight through the open window! Meanwhile, Mam is on her third lot of steroids, with an official diagnosis of Drama Queenage coming if it doesn’t clear up soon.
*I saw this quote on Facebook the other day but it was not attributed. Goodreads tells me it is a quote from John Green. I’ve not heard of him or any of his books.
**Recommended Radiotherapy Phlogistón. I came across the latter word yesterday, derived (according to Wikipedia: it’s on the internet so it must be true) from the Greek word φλογιστόν. I felt that I had to shoehorn it into a post somehow!