5. Radiotherapy & Chemo Week One
6 weeks of radiotherapy with chemo alongside sounds and little daunting don’t you think? Well, it did to me, and so once my mask was made and scans were done, preparing myself mentally was the next big thing to do. I had so many questions!
How would it affect my day-to-day activities?
What routines do I have to learn?
What happens when I start to feel ill?
Would radiotherapy hurt?
For myself (pre-treatment) and others on through similar paths who have yet to begin treatment – there will be questions, worries, grey areas, and concern about what comes next. With this post I hope will put some minds to rest.
Day 0 – Monday (14th October 2019)
When you start a 6-week schedule, you’d think it’d start on a Monday, right? Well, for some weird reason, my schedule started on a Tuesday.
On Monday (let’s call it day 0), I travelled into the hospital to collect my Temozolomide (Chemotherapy pills, commonly referred to as “Temodal” or “TMZ”) – nothing major to report here.
While my mum and I waited on sign-off from the pharmacy, we sat in a room which was provided by the Teenage Cancer Trust. These guys offer support in many different forms, in Day 0’s instance, their support was in the form of a comfortable & modern waiting room where I could play a game of pool, sit on a comfortable sofa, or watch TV. This makes a huge difference to those sterile white waiting rooms myself and others are used to.
Badly-taken photo of the pool table in our waiting room.
Day 1 – Tuesday (15th October 2019)
So, it all starts off today – 9 months of mixed treatment to try and put Ted into a long hibernation.
With TMZ (the chemo pill), you can’t eat for 2 hours beforehand, and 1 hour after. Along with that, you should take the TMZ one hour before the radiotherapy so the combination works more effectively – though it’s ok if you’re delayed or it’s 5 hours beforehand, it’s just suggested that you do. Combine that with anti-sickness, antibiotics, anti-seizure meds, and transport timings, it gets a little complicated!
Radiotherapy was booked in for 4:10pm, though when I arrived I was notified of a 1 hour and 25 minutes delay due to “issues with the machine in the morning”. That’s exactly what you want to hear just before your first treatment! Luckily it is only a suggestion that the TMZ is taken 1 hour early, otherwise, I’d have been screwed. Finally, after a lot of waiting, it was time for my radiotherapy.
I wasn’t quite sure what to expect, to be honest. I did look in one of the many info leaflets I was given by my oncology team, and it didn’t sound too bad – but still, radiation being fired into your brain can’t be a nice feeling? I was called in, and what stood in front of me was a weird four-armed claw that you’d expect to see only in a sci-fi movie!
My radiotherapy machine – The white blob is the ‘cradle’ that was made during Radiotherapy prep.
I lay down on the machine’s bed (the black surface), and my mask was placed over my face and clicked into place. For my first session, the team of specialist nurses instructed me that I would first have a scan, and then they’d do the therapy. Once the team had evacuated the bunker-like room (so that they don’t absorb any radiation), the machine started spinning slowly and began to make a high-pitched buzzing. I thought the buzzing was the scanner, but before I knew it, the nurses came in and told me I was all done. Time to head home!
After experiencing just the first day of this routine, I spent the evening creating a very detailed calendar schedule so I knew when and what to take, along with what times I was supposed to be in certain places – It took a while…
Day 2 – Wednesday (16th October 2019)
Day two went down without a hitch – No issues with the radiotherapy or chemo. This time there was only a 20 minute delay, whoo! Nothing really to report about day 2.
Day 3 – Thursday (17th October 2019)
No more delays today, I was taken straight into the waiting area for my radiotherapy room. No nausea today, no fatigue. It was pretty much as though the chemo pills are tictacs, and the radiotherapy is just a buzzing sound played through some speakers – I’ve been extremely fortunate not to have any side-effects as of yet. I decided to spice things up and ask my nurses to take a few photos of me prepped for the treatment.
Looking “like a bank robber” (according to my girlfriend) with my radiotherapy mask on.
Some people are claustrophobic with the masks on – luckily it doesn’t bother me. You head does get a little warm towards the end of the 3 minutes you’re clipped in though.
Day 4 – Friday (18th October 2019)
Friday was all plain sailing – No delays, no side effects. Once I was done with my therapy I sat in the Maggie’s centre with a cup of tea in the garden. They’ve got some really nice spaces in the centre, perfect to feel at home and not as though you’re in the all-too-common hospital environment.
The kitchen at Maggie’s, looking out into the garden. Not a great photo of the garden, but it shows how non-hospital-y the centre is.
Day 5 – Saturday (19th October 2019)
Weekends are my break from radiotherapy, although I still do take my TMZ pills and anti-seizure medication. This weekend I planned to spend with my girlfriend, and also go to a friend’s birthday house party! Just because you’re going through chemo & radiotherapy doesn’t mean you have to be a recluse. If you’re feeling tired or sick, I’d not advise overstretching yourself by any means – I’ve been very fortunate not to feel that way yet, and so I took advantage of it and had fun.
Alcohol is a big no-no when chemotherapy is going on, so for me, it was water, coca-cola, and this mocktail I asked the cocktail guy to make – It wasn’t great. Having fun and going out to parties is all well and good, but make sure that you listen to your body! If you start to feel tired and that you should go home – Just go home, it’s not worth wearing yourself out.
Day 6 – Sunday (20th October 2019)
Sunday was bacon sandwiches, baking chocolate-orange cookies, jaffa cakes, and making Halloween decorations. Many articles that I’ve read online have suggested sticking to diets that are rich in vitamins or are pretty much 100% kale. That’s all well and good, I’m not knocking healthy diets one bit, but don’t starve yourself of the niceties – Live a little and enjoy food!
By 6:00pm that night, I’d realised that the last few days I’ve started to feel a little tired earlier in the day than normally. The fatigue that is commonly associated with my treatment was starting to set in – luckily not too harshly though.
Northern Rail’s thousand-year-old trains…
A cold train-ride back home ready for tomorrow’s devastatingly early 5:00am wake-up – one of thankfully only three super-early morning sessions. I was not looking forward to waking up so early…
Day 7 – Monday (21st October 2019)
Day 7 – The end of week one, or at least after today’s radiotherapy it would be! I did not want to get up at 5:00am, would you?! The motivation of getting up before 5:20am was real though, otherwise I’d not be able to have breakfast due to the no-eating times of my TMZ. Once all dressed and sorted, I walked my little sister to my grandparents’ house and awaited my transport to the hospital.
Getting into the waiting area nearly 10 minutes late due to traffic, fearing I’d missed my slot – I was called in to get on with my 5th session. This time I decided to video my session so I could share with you what a Radiotherapy session is like. The nurses have a decent taste in music.
The specialist nurses clip your mask into the machine’s bed, and it’s just a waiting game. I admit I’m a little nervous each time I’m clipped in and awaiting the radiation – I’m sure I’ll get used to it in time. Most of it is just waiting for the machine to calibrate, and then it buzzes for 46 seconds (may be different for other people) as the radiation is emitted. Once all done, the nurses come back through and you’re free to go. Today I had a clinic review (these are done with me every Monday) to ask me about side-effects, ask me how it’s going, and if I have any worries.
5 more weeks of radiotherapy to go, and a total of 31 more weeks of chemo, but I’m excited to have the first week done and dusted. Roll on week 2!
