Samantha Dickson died from a brain tumour at the age of 16. Her parents saw the lack of funding for research and support for brain tumours, were duly horrified and set up the Samantha Dickson Brain Tumour Trust in 1996. This Trust merged with two other brain tumour charities in 2013 to become the Brain Tumour Charity, which is now at the forefront of brain tumour research and support for those affected by them. See here to learn more about the charity’s history and achievements. #BTAM
Specialising on the Beat?
Earlier in the week, Leo was resisting a nap, showed his displeasure through screaming and got increasingly worked up. Graham decided to leave him either to calm down or, preferably, fall to sleep. After a minute or so, Leo quite suddenly stopped his noisy protestations. Graham was sitting outside in the sunshine with the baby monitor by his side. He said afterwards that he heard a “strange” but not alarming sound through the monitor so he went back upstairs to see what it was.
He found Leo sitting up in his cot scribbling with a pencil on a reporter’s notebook! In his sleeping bag, he must have stood up, leaned over to the desk to pick up the pencil and the notebook and sat down to scribble. We think he must have been writing an entry for the blog, recording his memoirs or writing a letter of complaint to us or perhaps the NSPCC for our insistence on making him sleep when he’s over-tired (cruel family). If the latter, perhaps he was planning to use a carrier Red Kite instead of the more traditional pigeon?
Swinging to the Beat
When any type of music goes on or if we start singing, Leo immediately stands up (if he isn’t already standing) whether in the bath, living room or sitting on our bed. He smiles, swinging his body and arms from side to side and even twirling. If he’s strapped into his high chair, he still swings his body and arms as best as he can within the constraints of his circumstances. He is moving and grooving and the beat seems to take over him! The next Billy Elliot perhaps or maybe the lion equivalent of Happy Feet?
Sitting on a Seat
I’ve had increasing amounts of time sitting up in the living room. This has meant that I have watched, played and read to the kids a bit more than usual over the last few days.
Springing into Spring
The trampoline is proving an increasing source of happiness for the kids (bouncing) and me (watching and cheering). The kids have their Batman puddle suits so will happily go outside in the rain but I’m reluctant to get soaked! They are getting a bouncy workout to keep themselves warm – I often watch them through the window from the living room if the temperature is not too warm.
A lovely couple from London visited for a few hours yesterday. The last time I saw them was on 22 October. Rather than the homely visit we had planned, they ended up visiting me in A&E after the Blues and Twos were called upon for the third time in less than two months. Thankfully, yesterday was not at all dramatic and it was lovely to see them.
My steroid dose has gone down to 3.5mg a day as of this week. The last time it was at that level, I had the increased seizure activity described in Two Steps Forward, Eight Kicks Upwards, although we don’t know whether it was the steroid reduction that caused those seizures. In fact, although my seizures are ultimately caused by the Squatter, my seizures are “intriguing” to my medical team.
Recently, I’ve been sleeping much better as my Steroids (aka the Sleep Stealers) dose has come down. However, what one hand giveth, the other taketh away. The sleep stealers that currently plague me are the birds with their dawn chorus! As we are sleeping with the window wide open to avoid me overheating, which might trigger a seizure, it’s a Catch-22 situation as tiredness can trigger them too. Thankfully, unlike the Steroids’ sleep stealing shenanigans, I can usually get back to sleep after the cacophony is finished.
Sleepy (and Super Sleepy) Times
Over the last few weeks, I’ve had at least one morning of exhaustion a week when I’ve slept, apart from a breakfast and tablet pit stop, until the early afternoon. On top of that, I’ve had a couple of mornings and evenings where I’ve been sleepy and need to rest. Overall, the further time that has elapsed since Radio Ta-Ta, the less fatigued I’ve been, although it’s still all relative!
I’ve had two seizures this week, the first of which was on this week’s super sleepy day. I sensibly took it easy that afternoon but still couldn’t resist a bit of drama at tea-time. One minute I was sitting at the table with the family laughing at how the chef had said my tea was distinguished from my Mam’s by the fact that mine was the one with carrots on. The five tiny slices of carrot were hard to spot so my Mam and I were laughing almost hysterically (we try to make the most of any humour we can find!). The next minute I was being helped back to bed by Graham as I felt a Snoozie Doozie coming on. Maybe laughter is a trigger for seizures too?!
Stress is apparently a trigger for seizures. Some people say that moving house is among the most stressful times of your life. We are simultaneously trying to buy a house and sell our house to enable us to move out of Hotel Rents. Although the service and hospitality has been first-rate, we feel the hosts deserve a break! Add to that housing stress, there are the practicalities of looking after the two young children of the house, my attention-seeking demands (seizures, mobility issues, medical appointments etc), all the usual gubbins of running a household (washing, cooking, cleaning and I’m not sure what else – I’ve never claimed to be a domesticated wife!) and some specific stresses indirectly and directly related to my illness. There’s also, of course, the emotional stress of having a Squatter in one’s head or having a daughter/wife with such a Squatter. All in all, I think we are all doing just about ok!
Start of Second Cycle
All being well with my blood tests and meeting with my oncologist on Tuesday, I will start my second cycle of chemotherapy on Wednesday. Last time, with the benefit of anti-sickness tablets, I didn’t have any nausea or sickness so I’m hoping the same will be true.
A gentle reminder to get your entries in for the (black humour warning) Mrs Potato Beard competition (see R[est]2D[oozies]2 for details). I will pick a winner on Easter Sunday so get your entries in before then! A real (inexpensive) prize is on offer to the winner. If that doesn’t make you get your Whatsapp or other photo-editing apps out then I don’t know what will….