Radiotherapy. How was it for me? The mental and physical side effects.
When most people think about cancer treatment, chemo is usually front of mind. But radiotherapy takes up a chunk of time too and comes with its own long list of side effects.
Here’s how it affected me. And how I dealt with it.
First off, what is radiotherapy and what does it do?
Radiotherapy is a treatment using ionizing radiation to kill or control the growth of cancer cells. Normally, it’s delivered by a linear particle accelerator.
In English, that means you get in a big machine that fires very accurate ‘lazers’ at the area of your body where you tumour is / was. These are designed to kill any remaining cancer cells or stop them growing.
It’s normally delivered 5 days a week for 3-5 weeks. So you have to go to hospital Mon-Fri and normally have the weekends off. The appointment itself is very quick, but obviously it takes up a chunk of your day getting to and from the cancer centre. That in itself becomes tiring and gets in the way of life, work etc.
What does a session involve?
Depending on where in your body you need the treatment will determine exactly what a session looks like and what the side effects are.
One of the most important things is that the lasers are lined up accurately so I had to have four tiny, pencil dot tattoos around my chest, which are used to help line up the machine. They’re almost invisible, but still a daily reminder of what I’ve been through.
For patients who have radiotherapy to their brain or neck, they may need to be fitted with a special plastic mask to hold their head still. I totally get that you wouldn’t want to zap the wrong bit of brain, but I feel very fortunate that I haven’t had to go through this. I don’t think I’d cope with the claustrophobia!
My radiotherapy sessions took less than 10 minutes each time. I was lucky to be able to go to a new cancer centre, where the flow of patients was very slick. And the machines never broke down (it’s a thing, apparently, they’re complicated!). I’d arrive, check in, be shown to a changing room, where I’d take off my top half and jewellery, and wait for a knock on the door.
Then I’d go through to the machine, which is like a ‘donut’ with a bed in the middle. It’s pretty noisy but the treatment is quick and doesn’t hurt. The nurses would help me into position, lying me on my back with my arms above my head, holding onto two handles. I’m super claustrophobic and although the first session was a bit nerve wracking, overall it wasn’t a hard or unpleasant experience.
What are the risks?
Ironically, high dose radiotherapy is carcinogenic. It may also cause other long term issues such as heart disease, reduced cognitive function, thyroid damage, osteoporosis and more. All of which may not appear for many years, or even decades after treatment. But these long term side effects are hard to prove and are usually considered to be minimal compared to the benefits.
In the short term, the most common side effects of radiotherapy are fatigue and skin rashes / burning. For anyone who has radiotherapy to their abdomen or head, the side effects may be more acute and can include nausea, digestive issues, headaches, cognitive disfunction and more.
What were my side effects?
For me, I got away with virtually nothing for the first 3 weeks. I didn’t feel particularly tired. My skin was a bit red but nothing major. I felt very lucky. And wondered if it was actually doing anything.
Weeks 4 and 5 became harder. I started to feel really tired. My skin was red and sore. It was uncomfortable to wear anything tight and I was itchy and a bit blotchy.
Then, it really hit me after it was all over. I don’t know whether this was just the radiotherapy or a cumulation of a year of active treatment. But when it was all over, I crashed. I expected to be getting back in the game. Working on my fitness and strength. Starting to feel like myself again. Instead, I felt like I had been hit by a truck!
Eventually I gave in and stopped pushing. I gave myself grace to relax and rest. I focused on sleep and healthy eating for a couple of months and took my foot off the go pedal. It helped!
Months later, although the surface of my skin was healed, apart from a slightly pimply texture, my chest felt itchy on the inside. I think that was the deeper cells healing and regenerating. Even now, over a year later, the left hand side of my chest sometimes feels a bit scratchy and uncomfortable. Writing this is making me want to itch! And the skin is definitely thinner and less elastic than the non radio side.
Top tips
Remove jewellery. I made the mistake of forgetting to take off my necklace one session. I was left with a really sore, deeply burnt stripe across my neck. Luckily, it hasn’t scarred but I didn’t do that twice!
Find a good book or podcast. Radiotherapy takes up a lot of time, even if the cancer centre is close and the appointment doesn’t take long.
Apply cream. It’s important to go into radiotherapy with clean, dry skin. Any lotions or potions can ‘magnify’ the rays. But I would apply a thick layer of aquaphor (a petroleum based skin healing cream) each afternoon and then wash it off in the morning. Who knows how much it worked as I didn’t try not using it, but since I didn’t get serious burns, I think it helped.
Stay out of the sun. And use high factor suncream on the affected area forever after!
Rest. I am all for pushing through. Often, I don’t feel like moving but when I do start, actually, I feel so much better. But it’s important to listen to your body carefully and actually rest when you need it. For the first 3 weeks of radiotherapy, I had energy and felt like I was rebuilding fitness after chemo. I could run further and push myself harder. But the last two weeks, I was properly tired. I needed to slow down.
Be prepared for afterwards. It’s common for fatigue and other side effect to hit after the event. It was definitely my case. I so wanted it all to be over. Radiotherapy was the last hurdle. I wanted to celebrate and start feeling like me again. But I felt wiped. Probably for a couple of months. Maybe this was just the cumulative effect of a year of treatment, but I feel like the radiotherapy played a big part.
And now?
I don’t really think about it. My skin is a little 'thinner’ and less elastic. My scar on that side of my chest is a little darker. I sometimes feel like I have ants inside my chest. And I sometimes worry about the long term side effect of heart disease, as my cancer was on the left hand side. Other than that, I feel incredibly grateful for modern medicine and I hope it did its job!