Burn baby burn...
I was told radio would be a walk in the park after chemo. And it probably would have been if my body had anything left to give, but truth is, after having endured a mastectomy and 6 months of chemo, there wasn’t much left in the tank. Less walk in the park, more strolling through a field of stinging nettles in 50 degree heat.. with the sunburn to match.
15 fractions of chest scorching radiotherapy left me completely and utterly exhausted. I thought I knew what to expect, but the reality was quite different. Because it’s not as invasive as chemotherapy, it’s easy to forget that radiotherapy is still active treatment… it is still zapping healthy cells as well as any bad ones, and if your body is still recovering from other treatment, rebuilding those healthy cells take A LOT OF BLOODY EFFORT, sometimes too much.
Yes each treatment is only about 15 minutes long (once they’ve managed to line you up, which can take forever in my experience!) but having to go up to the hospital every day apart from weekends, for three weeks, means it pretty much takes over your life completely. And it will make you bone achingly weary.
I had never even heard of radiotherapy before I found out I was going to have to have it. We’ve all heard of chemotherapy, but I bet most of us never realised that radiotherapy is actually an integral part of cancer treatment for post people, so here’s what to expect…
First up there is the CT scan. This is the easy part, the planning session. You lay there while they shuffle you about, line you up and take all the measurements for your positioning (arms above your head for breast radiotherapy, which can be slightly awkward if you’re still recovering from your mastectomy). They then mark you with 3 tiny little tattoos (unfortunately another permanent reminder) and you head off thinking you know exactly what’s coming for you over the next however many weeks.
The reality was quite different to what I expected.
The treatment itself only takes a matter of minutes, but what I didn’t realise, was how long it would take to actually line you up each time, and that as my old surgery site and scar tissue got more and more aggravated and inflamed by the treatment, it would be more and more difficult to get my arms where they needed to be.
Most of my sessions took a good 20 to 30 minutes to get me in the correct position, with me laying there, arms above my head, as still as I could be, while the team pushed, shoved, shuffled me up and down the bed whilst muttering what appeared to be random numbers (96 ant, 100.5, 0.5 to the left…) and even measuring my chest alignment with a ruler. One day it took them a whole bloody hour. They had to reposition me that many times and I was that cold and uncomfortable that by the time they left the room to zap me, I actually cried I was so fed up.
Once you are eventually lined up, the team leave the room, the machine (which looks like a giant food processor) whizz’s and whirs around you, gets in position, and belts you with direct beams of radiation to try and eradicate any rogue cancer cells that managed to escape the wrath of surgery and chemotherapy. It takes a mere 10 - 15 minutes and then you can be on your way.
Tip - wear something that’s easy to get on and off, and if you’re having chest radiotherapy, don’t wear a dress (otherwise you will end up laid in just your pants), or any neck jewellery. It’s also a good idea to wear something warm on your bottom half as they keep the rooms absolutely fucking freeing to stop the machines over heating (I actually took a blanket with me a couple of times) You will need to strip off your entire top half so you will be cold, especially as you could be laid there for a while.
You will be told to apply cream, most likely E45, 3-4 times a day… DO IT. I absolutely smothered myself in the stuff from day one, and pure aloe gel, and I still ended up with a pretty painful burn which blistered and peeled. Especially at the top of the treatment site where I hadn’t realised would be exposed until I asked a few sessions in, so check with your radiotherapist where you should be applying so you don’t miss any spots. I went back after my skin got worse and was given a couple of other creams to help with healing so if you’re struggling, ask your treatment team.
Be aware that surgery scars and the surrounding area will be affected. The radio waves kill healthy cells as well as cancerous ones, they will aggravate and tighten any scar tissue, and any issues you had from surgery will most likely rear their shitty ugly head again. For me, I had experienced chording in my right arm from my surgery and this came back within the first few sessions, despite me carrying on working out, doing yoga, and my physio exercises. It became quite painful to lift my arms above my head and lay there so if you experience the same, take some painkillers half an hour before your treatment to help. The hematoma and swelling on my side inflamed as well which is still super uncomfortable now. You will also lose any hair you have in the area being treated, so I said goodbye yet again to my armpit fuzz.
Also, the side effects are progressive, and will carry on getting worse for a good couple of weeks after your last radiotherapy session. You are not home and dry when you leave the hospital for the last time. My skin got worse and worse for 2 weeks, to the point of blistering and peeling about 2/3 weeks after I had finished treatment, and then started to get better. Six weeks on and it’s still not healed completely but I can at least wear a bra again without being in pain.
You’re not radioactive. Contrary to popular belief, it is quite safe to stand near someone who is going through radiotherapy, your brain isn’t going to fry from unseen radioactive waves emitting from their person.
For me, radiotherapy was the final push in a series of pretty brutal events, it was the flourish across the finish line of active treatment. I think if you haven’t been through it yourself, it’s easy to think that, as it’s easier than what has come before (surgery, chemo etc) and more often than not the last part of treatment for most patients, the feeling of relief at being so close to the end will carry you through on a high. Coming home from my last session, I was ecstatic, but also I felt kind of numb. Cancer treatment had been such a massive part of my life, the only goal I’ve had since November last year, and when all of a sudden it wasn’t my sole focus, I felt really overwhelmed. I put unrealistic expectations on myself that now I had finished treatment I would be “better” straight away, because from an onlookers point of view, I wasn’t sick or going through treatment anymore so why wouldn’t I be back to normal? That’s a subject for a whole other post.
Don’t get me wrong, radiotherapy was WAY easier than chemotherapy, but let’s be honest, no aspect of cancer treatment is going to be fun. You are just doing what you need to do to survive.
Until next time
L x