HOME IS WHERE THE HARD IS
The drive home from hospital was a roller coaster - literally. Before everything I never really struggled with travel sickness but due to all the brain swelling from the op, my visuals weren’t able to cope with the speed and depth perception. Until then, I had been sat in a bed looking at the poster on the wall but now my eyes kept having to readjust to everything that was in front of me, moving past me and my brain was overloaded.
The twists and turns felt like vertigo, my brain was trying to orientate where we were going and how fast. We didn’t realise this would happen but I made it home without making a mess. I was happy to be at my dad’s home - “it’s ALWAYS good to be home”. I had an unexpected present for me when I arrived, a shower stool. Although it's not my favourite surprise gift ever - the stool sadly is very representative of this period of time. I was still wobbly on my feet, due to the brain swelling and therefore it was dangerous for me to be stood up in the shower alone.
Every morning was a repetitive and extremely embarrassing routine. First off, my Dad would help me to get up and take my pills to reduce the swelling and prevent any seizures. Afterwards he left me to undress on my own to force me to get my left arm moving, only helping when I got completely stuck. Then we'd go to the shower and he'd pass me the shower head, help me down onto my beloved stool and wash me over with the water then help me back up to use body wash.
(PLEASE NOTE: I did all my ‘bits and bobs’ myself, with my right arm! Need to keep some dignity here.)
Upper body was a real struggle, I still couldn't properly control my left arm so things like cleaning the arm pits...let's just say my left armpit was definitely cleaner than my right. I had to swing my left arm up and rest it on the wall of the shower to clean just to clean underneath. Dad would wash my hair carefully avoiding the scar on my head, it was still pretty scabby and sore. Then help to dry me off and get dressed. Poor him, right?
We think of washing as something so easy, right? In fact I doubt I ever even thought about it before this situation. "I'm 22 for goodness sake?" Take back 20 years and this would be socially acceptable. This is baby stuff. I doubt I can really get across what this felt like. As most of you know, coming back home from University is a hard adjustment.
All these simple actions; spraying deodorant, washing my hands, holding cutlery, squeezing toothpaste out of the tube - they were so hard! I was feeling down and bottling my emotions as I couldn't even really talk well enough to express my emotions. It took weeks on end to start getting the hang of things I did normally at home, as for the outer world ‘hurdles’, that wasn’t my focus yet.
This period of recovery felt like an eternity, progress was slow but I WAS improving. My family could see it but not me. Not at all. Dressing was still a struggle, talking was still a struggle, everything was STILL a struggle. Wimbledon had started and I play tennis with my friends on the odd occasion. Watching the tournament I decided, "Screw this, stop sulking about the arm, stop sulking about the speech, I WANT to toss a ball in the air with my left arm and run to play a return and speak the score."
Mindset changed 👍 Step 2 complete.
For anyone going through this phase, I did try to make it as nice as possible but it really is like trying to pick up a turd by its clean end. It is not going to be fun or easy but you're left with no choice but to get on with it and work hard. You will have a lot of fails BUT you’re on the right track. I promise.
I’d moved home to my Mum's and started radiation on 22.07.2015. I was prescribed the full dosage of radiation that is humanly possible for my oligodendroglioma (established from biopsy results - I call her Olivia now). It was simple enough, 5 days a week for 7 weeks I’d get picked up by my Taxi driver Brian, he'd drive me to Guildford where I'd arrive in the waiting room at Mount Alvernia before laying on a bed for about 2 minutes, sporting a custom plastic mask to hold my head still whilst the machine zapped my tumour/brain.
Radiotherapy I found really difficult. The side effects were draining, I got tired ALL the time, literally as soon as I was dropped off back at home, K.O. My hair was slowly falling away down the shower drain day by day. If you’re coming up to this stage I can’t emphasise enough that you should just ‘brave the shave’. I shaved my hair short and took some control. This way you lose your hair by your choice. The main bulk of my hair fell out in the shower on my birthday! I'd done the shave but I wish I did it sooner. A couple of days later I buzzed it shorter and an old school pal took me for my first Turkish shave! Fancy!
The team in the radiotherapy department were a breath of fresh air. They made it easy to turn up, have a chat about football or music, lie down on that bed trapped in the mask and get zapped. They were so friendly and I truly can't thank them enough for their hard work on making these things...enjoyable . Unfortunately, the radiotherapy wasn't successful, the tumour actually grew. Waste of time? Yes, in terms of treatment. No for my well-being, as the team were cheering me up and I had something to get out of the house for. A chance to speak to new faces was a good opportunity to improve my speech. This failure only got me more fired up as I realise that this tumour was a fighter, and I consider myself one now as well. We’re both in the ring throwing punches (in my mind), it’s not about how hard you can hit, it’s about how hard you can get hit and keep moving forward (good ol’ Rocky Balboa).
After a hard time on the radiotherapy we decided that I should have a longer rest before the chemotherapy (temozolomide). I was still bald (much to my displeasure) and tired when I finished the therapy.I felt like I was loosing the fight, I needed a break between the rounds so I had a holiday to Madeira and I decided that after the trip, I’d try to get back in the gym. I really missed it and I hated how I looked in the mirror - skinny and limp. Working out can release pent up anger and endorphins. I still wasn't expressing my emotions due to my speech issues but the gym was a way I thought I could. Plus, graduation was in November and you need to make an effort right?
Everyone will agree that at graduation through until Christmas time I didn't look good. Personally, I felt like I was dying. Rapidly. The operation combined with a hefty and unsuccessful dose of radiation in my brain knocked me for six. I kept to a routine and continued trying to go to the gym, going to the pub with friends, doing more dog walks, waking up earlier. I was focussed on the getting better for the treatment in the new year.
On the 6th January 2016 I was to start my temozolomide and I was very apprehensive about it, as you hear all these stories or see scenes from movies. I was contemplating not doing the treatment as I’d heard such bad things about chemooo. But my friend Jack (thank you) and my family convinced me to trial the first 3 months (5 pills per month), and see what the scan results showed and then make a decision. It was a rough start but nothing unexpected. My hair actually came back and although I was nauseaous I was never actually sick! The first scan showed a shrinkage! At that point I think me and my whole family would have fist-pumped over a stable result - none of us had considered it shrinking. Best shock ever. I got the results a week before a ski trip so I posted an update status on FB to update my friends as I’d been doing with every result.
I was so pleased on the trip. After skiing, I realised my body, in terms of movement still really wasn't all there yet. My left leg lagged, the motor-neurones for reactions weren’t up to speed. I was walking and running fine before the trip and I naively thought I was back to normal. So, I came back with a renewed motivation to work on my weaknesses in the gym and to push my body harder. If I wanted to get better I had to not avoid the weight lifting programs my body couldn’t do.
Overall my chemotherapy went really well. I trained 5 times a week leading up to every round then I was out of action for the 5 days taking the pills. I needed to rest and eat well and not let myself get over-loaded in terms of tiredness, I use those 5 days as recuperation. The day after I'd finished ‘popping pills’, I was back in the gym. Admittedly there were times when I thought I was going to puke from training too hard but I enjoy pushing myself. I think any fitness freak will try too soon to get back into shape.
I finished the year's course in November 2016, I rushed through some pill rounds due to collisions with holidays/events so I actually finished it a little early. Over the three-monthly scans they showed the following: shrink-stable-shrink-stable. Which is really good. The key to the shrinkages I believe was not drinking too much, eating well, avoiding sugar and not to eat many carbs (ketogenic diet) oh and this wonderful drink Berberis (25 drops in water – just shot it every morning). This combined with training hard to force my body sweat out the temozolomide before the next round really helped me cope physically.
If anyone has any questions regarding what I took/ am taking , there will be another blog coming soon about all the details!
This year went so SO fast. I really did just get my head down and keep the routine. The rounds got progressively harder but I had a very okay time dealing with it and getting back in the gym and regaining a sense of independence and normality was just as valuable as the scan results. I needed a new goal for 2017. I needed new purpose and ambition that was about more than just my own well-being. I wanted to turn the situation into something good and the cogs that would eventually dream up Resolute started turning...