The last month or so since the surgery delay hasn’t been the most exciting for anyone through the COVID pandemic and in the Dawson household it hasn’t exactly been a barrel of laughs either, but we’re still going and after an ‘eventful’ month I’ve finally got something to write about and some time to do it.
Let’s circle back to about 4 weeks and after being pretty much symptom free since the famous fatigue gate I started to experience some similar sensations to those prior to diagnosis, the ones where I was feeling trapped on a boat and dizzy in the shower, yeah that weird shit. This time, a little bit different, this time I felt like the air generated from my bedside fan was pinning me down to the bed. I woke up feeling like this on my front and I was speaking like I’d just had 8 pints of the good stuff. I started feeling dizzy through the days and had the feeling that waves of energy were travelling through my bloodstream from my nose to my toes. I also had pins and needles and numbness in my fingers. I spoke to my epilepsy nurses who informed me these were symptoms of auras/partial seizures, so they increased my Keppra medication to 750mg twice per day. They also told me to get my hands on some vitamin B6 to try offset some of the anger/irritation side effects that Keppra brings, think this was for Sarah rather than me.
Although my partial seizures weren’t completely going away they did improve but I kept badgering my epilepsy nurse and the entire neurology department at LGI until finally I was booked into another MRI.
This MRI or as they are now known, ‘Claustrophobic Fuck Holes’, was similar to a previous one where I was injected with contrast dye to help show areas of the tumour and look for signs of growth. I was in there for 40 minutes and although I was listening to Radio 2, it was a pretty nasty experience. The MRI machines aren’t that bad, but it’s just the length of time you’re in there and when the dye is administered you can feel the liquid coarse through the veins and can taste the metallic like flavour of the dye.
Anyway, a few days pass I don’t hear anything, in the shower one morning I was feeling particularly positive, signing away I decided that as I hadn’t heard anything quickly it was good news and no growth had occurred so I’d get on with waiting for COVID to end and another MRI in August time. Springing out of the shower and telling Sarah about my positivity theory, I went downstairs to make myself a coffee…..the phone rings, it’s the Neuro ward…..For Fucks Sakeeee, I thought I’d got away with it.
It turns out that my tumour has grown slightly, which is normal for a grade 2 tumour but there were also some areas the dye had picked out as more ‘troublesome’ and had started to ‘manifest’. To be honest, I was in a bit of shock with the news and it took a while to sink in, but ultimately this new development had made me ramp up the waiting list to get an OP ASAP. He was trying for that week, but wasn’t able to fit me in, which I was quite glad about as I don’t think I was quite ready for the big match just yet.
Anyway, I’m now booked in for my awake craniotomy for the 30th June at LGI and have to quarantine (COVID regulations not normal procedure) 2 weeks prior to the operation and 2 weeks after. So, now the fun really starts and all of a sudden, I’ve been inundated with calls from the hospital scheduling different appointments to get me ready for Timmy’s eviction date.
So far, I’ve had a Goldman Field test where they check my peripheral vision, help map my visual cortex and ensure they don’t damage my eyesight during surgery. Apparently, they check this by holding up sticks in my peripheral (like an airport marshal) so I can tell them if something changes.
Next, I had a 2 hour call with the famous Dr Dan, now I don’t know how famous he is, but three different people mentioned his name in the lead up to this call and everyone had that light up feeling when they said, “oooo you’ve got a meeting with Dr Dan, he’s great”.
You know what, they were right, Dr Dan is a bloody nice fella. I went into the call with thoughts surrounding me like; would I be alive after the 30th June, would I come out a vegetable, will I walk or see again etc. However, after listening to his soothing northern tone, I came out of the call with nothing but positive vibes and with the most information about Timmy and the operation to date. I’m going to try go into detail of how he described everything to me as it might be helpful for others having an awake craniotomy but also help people supporting those who are too with a better understanding…..watch me fuck this up ;-/
So, Timmy has set camp in the right side of my brain right on the insular cortex. To visualise this, make a fist with your right hand with your knuckles facing the left, leave your thumb on the outside (should look like a brain) Now, the insular is under that bit of the thumb. The brain is full of wiring systems that all meet up at the insular and Timmy has been growing in the middle of it all. Now the brain is a fantastically adaptable organ and while Timmy has been growing, the brain has been adjusting to keep all these wires working. However, now Timmy has reached a size where he needs to fuck off, hence the symptoms. So, what they’re going to do is cut my skull open to see the brain, lift the flap and see little Timmy so they can start to ‘debulk’ him. They say debulk as this isn’t going to be a full eviction, he’ll probably leave some old unusable Ikea tables in there. Dr D said they usually get between 30-99% of tumours out with most crainotomy’s getting over 50%. However, the brain will adapt again and then the second operation will mean they can safely remove more of the tumour.
D-Man also gave me a bit more information on recovery and what to expect. When I always thought of brain surgery I thought people would be out of it for a long time, basically fed baby food and straw fed for the next year.
However, he said I should be discharged between 2-7 days, most likely 3, depending on how surgery has gone and some people are back to work within 6 weeks. The time frame for recovery is usually between 6 weeks and 3 months, however, in that time I will be able to walk about, talk, eat etc. The biggest symptoms I should have are fatigue and lack of concentration….no change there then. He also alleviated some of my fear by saying in his 10 years working with the neurology team in Leeds there has never been a serious complication which is good to hear.
I hope I managed to go through that making some sense, it made sense in my head, although I have a tumour so what the hell do I know? I’m now booked in for more memory exams and coordination tests as well as get my swab, pre-op questions and another psychologist call to check on my general mental health as well as a couple more that I’m not sure of yet.
So, on the mental side, it is pretty tough going, but it’s nothing like what I thought it would be like. I’m sure everyone has thought about or talked with their friends or partners about a bucket list and said something along the lines of “If I was told I had a year to live, what would you do?”. Well, I’ve always loved travelling and eating so my bucket list was something along the lines of; Brazil, African safari, Philippines, Peru etc. Since having kids the goalposts for my bucket list have adjusted dramatically and rather than trek to Machu Pichu petting alpaca’s I’d be much happier watching Sophie ride her bike around a park or go pet a billy goat in a petting zoo…..okay maybe the kids can come to Brazil too. However, this whole COVID situation has taken the bucket list and ripped any kind of idea up and thrown it into the wind. Instead, all choice and power has gone out of the window and the most excitement I’m going to have in lockdown is watching it rain out of the window, try to stop a hyperactive toddler from ripping her own hair out from boredom, walk around a 3×3 metre square like a caged polar bear trying to soothe a baby to sleep and play monopoly with an overly competitive wife. However, when I think about it, it is all about choice. If I had the choice right now, I wouldn’t be getting last minute flights to pet alpaca’s or to see the Great Wall, I’d probably be here, walking around my livingroom….maybe less rain would help though, seriously, it’s June, some sunshine would be nice.
Anyway, that was a long blog, well done if you stayed with me. As always, please share with people who this might help or share in general and be nice. If you want to have a zoom call over the next week I’m pretty free so please get in touch – it would be nice to see people before the big day arrives.