When I heard I needed radiotherapy, quite simply put, I was not ready, I mean who is?! – but I was also completely and utterly clueless and fearful about what to expect next. I wanted to do something positive with this situation and so I have put together a short video of the radiotherapy process that some brain tumour patients experience. I’m hoping it can be helpful, informative and relieve some of the anxieties associated with brain radiotherapy for both patients and their family & friends. Please give it a watch and let me know what you think – was it what you expected?
- Did you know: radiotherapy is required by 50% of ALL cancer patients
- What is radiotherapy: a type of treatment that kills brain tumour cells with high energy X-rays, gamma rays or protons. The most common method of radiotherapy for brain tumour patients is called Fractionated External Beam Radiotherapy – this is what I had.
- How does it work: you basically have small fractions or ‘sessions’ of high intense radiotherapy, divided up over a period of time. For me, this was daily from Mon-Fri (with weekends off). So depending on how many sessions you require, you will need to attend your hospital or radiotherapy centre everyday (that’s really important because this becomes a part of your daily schedule – I had 30 sessions of radio, so that was Monday to Friday every single day for 6 weeks… we’ll talk more about this later!)
Based on my experience, I thought it might be useful to break this process down into practical steps:
Accepting Radiotherapy:
Coming to terms with the fact you’re having radiotherapy is not easy but very important – it’s a very real step and it’s happening. You can accept it, ignore it, be sad about it… whatever you want, but at some point you have to shelve the negative thoughts and get ready for it.
The First Oncology Meeting:
I’m not going to try and dress this up – I hated this meeting. Well, hate is a strong word, but I wasn’t quite expecting it. Firstly, I thought it would be a quick 30 minute meet and greet with my new team – it was not. It was 3.5 hours 😳 and we covered EVERYTHING. This is THE meeting to get the next stage going – and they do not leave any stone unturned. We went through the story so far, what radio is all about, what to expect, the mask fitting, every single potential side effect and I had to sign consent forms for everything. Looking back now, it wasn’t so bad, but it’s just the unexpected sometimes catches you off guard and puts that fear back in you. The best part of the appointment was meeting my new oncology team – I’ve said it time and time again, but your relationship with these people (well to me anyway) is so crucial because you’re quite literally trusting them with your life. Thankfully I’ve been blessed with another great team 🙏🏾 Without doubt the most difficult part of the meeting was when my consultant was explaining life expectancy – she gave me the facts and figures honestly as she had to. That was so hard, because I wasn’t ready for those numbers 😔 BUT they are just numbers and stats – and my philosophy through this journey is that ‘numbers, stats, averages’ are there to be broken, and I will break them!
Just coming back to the actual radiotherapy sessions, I mentioned going into hospital everyday – during this meeting, speak to your oncology team and see if you can arrange timings that fit in and around your life (especially if you require more than just a few sessions). For example, I was keen to get it done as early as possible so I could get on with my day and be available for my kids drop offs/pick ups – so the team kindly arranged my appointments to be first thing every morning! It was a massive help and I’m eternally grateful to them for that.
Safe to say I came out of that meeting totally drained – I felt wiser about the process but more fearful about the reality of the situation. At least I knew what was coming and we could start. Big meeting complete… now we get to the more practical stuff.
Fitting the mask:
For many brain tumour patients, the mask is the worst part of this radiotherapy process – whether that’s having the mask made or having it on during each session.
So why the mask? The main purpose is to stabilise your head. The radiographers are using some pretty sophisticated state of the art technology and they need to be precise with where they are targeting the tumour. So the mask is a way of keeping your head stable and ensuring accuracy (it is also a way of protecting other parts of your head and face from any stray radiation beams).
How is it made: think of it like baking a cake (you’ll see in the video)!
- The mask is made of a thermoplastic sheet or mesh which starts off flat as a pancake
- The team will ‘warm up the oven’ & put the thermoplastic sheet in to ‘bake’
- Once it’s soft enough, it is ready to be moulded to your beautiful face 😍
- You lay down on the table and they gently cover your face with the thermoplastic sheet and begin to mould it. I have to say, the radiotherapists looking after me were brilliant and made it feel more like a spa experience! “We’re now going to gently press around the eyes and cheeks”! (point to note – it’s warm but not too hot on the skin)
- Once everything is shaped and moulded they leave it on your face for a few minutes to set! And before you know it, you’re finished! You will be unclipped and they will store your mask away safely (they keep it at the hospital so you don’t have to worry about brining it in everyday).
- Go home, enjoy your day!
What did I learn and what advice can I give for the mask fitting:
- It’s not a long process and it’s not physically painful, just a little awkward!
- Breathe! Only start once you feel calm – it will be best for you and for the radiographers doing the fitting
- It can feel a little claustrophobic and that’s not to scare anybody but to be realistic – hence why I can’t stress the importance of being calm before you start
- Try and stay still to help the radio team do what they need to – also the stiller you stay, the quicker the whole process will be finished
- Be comfortable in your facial expression during the moulding – by that I mean don’t sit there with a big grin on your face (like I started off with!), because you’re going to have to hold that facial expression every time you go in for your radio therapy sessions… just relax your face and try to feel as comfortable and natural as possible while the mask is being moulded
- Remember the mask is your friend, a very awkward friend, but your friend – it’s there to help & protect you
Doing the Radiotherapy sessions:
Your mask is moulded, your measurements are set and you have a rough schedule set out for the next few weeks… now you just gotta turn up and do it – simples!
I mean in theory, you do just turn up and lie on a bed for 10 mins and go home! I remember feeling a bit like a fraud when people would call or message and ask how it all went, and I wanted to give them an exciting story, but personally speaking for the first few weeks, there was very little to say about feeling different physically.
For me, the toughest part was ironically in my head! It was a mental test – I needed to be in a mentally good and happy place before I went in. Listening to uplifting music, wearing my Arsenal shirts (or anything bright coloured), having a coffee, speaking to my wife or my mum, seeing my favourite radiographer and giving her a hug!!! WHATEVER IT TAKES FOR YOU! I can’t stress how strongly I feel about having a positive mindset – your brain talks to your body, let your brain talk positive things!
Process:
- Turn up on time and check in with reception
- Take a seat and wait for someone from the radiotherapy team to come and collect you
- Before each session they ask you 3 questions to confirm your identity: full name, date of birth and home address
- Lie down on the bed and get comfortable
- When you’re ready they will place the mask over your face and clamp it firmly to the bed (not fun!)
- The radiographers will then spend a couple of minutes checking measurements and angles to ensure you’re in the correct position (it may require a couple of shuffles while on the bed)
- Once you’re all set, they will leave the room and go next door to conduct the session, while keeping a very close eye on you through the cameras
- 5 mins later you’re done! And you’ll hear the reassuring sound of footsteps as one of the team come back in to unclamp the mask and set you free! This is the best part!!!
And that is it – get back to the rest of the day! Easy! 😂
Side effects:
The side effects of radiotherapy are completely unique to each individual. One thing I didn’t realise is that radio is a cumulative therapy i.e. it builds up in your body over time. So even when you finish radiotherapy, the side effects can go on for weeks and months after.
There are a whole host of side effects but here are some of the most common (which I also experienced):
- Tiredness / fatigue: can’t get away from this. I think it applies to any radiotherapy to any part of the body. It will tire you out, and that tiredness will build up over time. So listen to your body and get that sleep in! Some people like to go straight home and sleep, some people try to fight it (like me!) but it will catch up on you. For example, if I don’t nap during the day, I will be asleep by 7pm. You will hear it a million times – LISTEN TO YOUR BODY.
- Hair loss: urgh, the sh!t bit! I’m sorry but it was all I could think about at the beginning, I did not (and still do not) want to part with any of my hair. But sadly it is an unavoidable part of brain radiotherapy – it is targeting your head, so wherever those rays are focussed in on, you’re going to lose hair in that area. There is nothing you can do to prevent it – but there is something you can do to own it. It’s still your hair, your head – my advice… get a hat! You might not be a hat person but there’s always a time to start – chemo hat, baseball hat, beanie… whatever you want. One more little bit of advice, if you are thinking of shaving your head or changing your hair, speak to the radiotherapy team because the mask has been fitted around your head with your hair in mind, so changing that might mean readjusting how you lay down or potentially refitting the mask again.
- Nausea / sickness / loss of appetite: I’m lucky to say I didn’t experience this quite as badly as I know other people have. Personally it was just a loss of appetite and almost having a feeling of laziness to eat – I just couldn’t be bothered! Anti sickness tablets are an option so please just keep your team informed and ask them if you need it. There is absolutely no shame in asking for any sort of help – don’t ever forget that.
- Brain swelling: Final point to bear in mind and a reason for the worsening of some side effects is temporary swelling in the brain. This is because of the treatment and to some degree it is to be expected. Again, there is medication to help with it. When I was struggling with my appetite, I was put on a short course of steroids and literally within 24 hours I was eating everything in sight! 😂 You just have to be honest with your team about how you’re feeling, don’t let it linger… I’ll say it again… LISTEN TO YOUR BODY!
And that is your radiotherapy round up! I hope there was something useful in there for brain tumour patients – this is a process we would rather not have to do but our reality is that it probably will happen. When/ If the time comes for your radiation “glow up”, I hope this video helps you feel a little more prepared!
Walk With Sam 
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