So the mysterious world of Radiotherapy… personally I found this part of my treatment plan one giant roller coaster from an emotional point of view, and I would say also, that for me it was the hardest physically – although I know many others breeze through it. It just goes to show, different courses for different horses…
I don’t know whether part of why I found it so hard was because I expected it to be easy, and therefore had a shock to the system, or whether it was the cumulative effect of many months of treatment, coming as it did after chemotherapy and surgery.
By this point my nerves were shredded, my body exhausted and my mind one big swirling soup of mixed emotions, so maybe this was just the final straw.
As the last part of the treatment plan (at least in my case), and at this point, cancer-free, everyone seemed to expect me to be rejoicing “only a few more weeks to go, and you are done” “you must be glad it is nearly all over” etc.
The problem was that I found that there was something reassuring about having treatment. Even on the rubbish days, you know that you are doing everything you can to fight this “thing”. Coming to the end, knowing that this is it, is a weird feeling with some very mixed emotions – a bit like “is that it?” and “so what now?”. On top of this, I was too bloomin’ knackered to celebrate anything!
So my head was all over the place – the insomnia that I have struggled with throughout my treatment hit new heights, and on a really good night, I averaged about 4-5 hours sleep; some nights I didn’t go to sleep at all and this clearly didn’t help the situation. Combined with the fatigue caused by the treatment itself (if I’m honest I’m still not entirely sure where the effects of the insomnia/treatment related fatigue began, met or ended) this meant I had a month of feeling like an extra from The Walking Dead, and as anyone who knows me can tell you, I hate zombies!
Preparing for radiotherapy
So my first bit of advice for anyone going in to this part of treatment is, keep up with the self-care. I know many people are back to work by this point, so I would say factor in time in your day to chill, to do nice things for yourself, and if possible, to be looked after a bit.
Even just the physical act of going to the hospital every single damn day can be a drain, and for me there were definitely days where I was like a two-year old in a tantrum about having to go to the hospital – again, where I seriously considered running away or bunking off for the day, of course this isn’t something you can do.
Despite having read lots of literature and having been through the treatment, I’m still not entirely sure how external beam radiotherapy works.
I know the theory, but my mind simply refuses to compute. But essentially, they use high energy rays to blast the cells to destroy any remaining cancer cells. Before I began, I had visions of star trek style zapping machines with laser beams etc but the reality is far more banal. I shall describe the process that I went through to hopefully give some insight, because I went in really not knowing what to expect, which for a natural control freak was tough! Spoiler – there is no light show to be seen! 🙁
The Planning Appointment
Two weeks before radiotherapy started, I went for my marking/measuring scan. As the radiotherapy was to my boob, I had to lie on a bench with my baps out and my arms over my head, whilst the radiographers positioned me, tried different supports for neck, knees etc to get me in the ideal position, and drew on me a lot with felt tip pens, whilst periodically scanning to make sure that they were getting the right place.
Because my cancer was on my left side, I had to “breath hold” which is where you wear special glasses that shows you two lines, you have to take a deep breath in, until a bar shows in between those two lines and hold your breath for as long as possible, keeping the bar within the two lines. This technique is to protect your heart during the radiotherapy, and is actually pretty easy once you get the hang of it.
Once they were happy with all of the positioning, I was marked up – three tiny tattoos, one in-between my boobs and one on each side just below my armpit. These tattoos are the size of a small pin prick, and literally look like a biro dot. It was a brief scratch and didn’t hurt, but as with all tattoos are another permanent reminder of this fun, fun journey to wellness.
The room is cold! It has to be for the machines, but it is not pleasant when you have been laid half naked for an hour. Someone suggested getting some long gloves, and this was excellent advice – so much so, that we now stock long finger-less gloves here on the site! Guys, if you are there because of your prostate or testicles you are (probably) going to be naked on the bottom half your body – I recommend warm socks!
Radiotherapy is brutal on your skin, but you can minimise the damage through endless moisturising, starting before you even begin treatment and continuing until the skin is completely healed. From my research, it looked like the best time to start moisturising was from this treatment prep appointment onwards. So from this point onwards, I began moisturising twice a day with a specific regimen of natural oils/remedies to protect my skin.
First day of radiotherapy
On the actual day, I went along and was told to strip from the waist up and put a dressing gown over the top until it was my time to go through. Then I was asked to lie on the bench, and the radiographers hurried around setting me up according to the positioning and measurements from the pre-treatment appointment.
Once again, they drew on the markings for the “borders” of where they are targeting the machine, and positioned the bed and machine so that I was in exactly the right position. Then they used a light beam to double check alignment, left the room and gave me instructions of when to hold my breath over the tannoy.
The machine buzzed and whirred in my general direction for maybe 30 seconds, but I didn’t feel anything, then it moved around me, buzzed and whirred again, and that was it, free to go home.
The first day took the longest, maybe 20 minutes in all, usually my appointments were 15 minutes of which the treatment takes about two! All in all, completely unremarkable, and definitely not the sci-fi light show that I was expecting, which was a bit disappointing really, as I do love a good light show!
Then the next day, you go and do it all over again, and so on until you have done your allocated number of sessions. You go every day from Monday to Friday, with weekends off. I was absolutely fine to drive myself to and from appointments, so after the first few, this is what I did.
The impact of radiotherapy on skin
I had twenty sessions of radiotherapy in all, fifteen standard and five targeted “boosts” – being of the bigger-boobed variety, it was to quite a large area (blush!) I should also point out that I naturally have very sensitive and quite reactive skin. Neither of these things helped me during treatment.
Although my radiographers told me my skin held up brilliantly – much better than was to be expected, the truth is that despite my best efforts, my skin burned, blistered and then peeled, and it hurt, a lot!
It wasn’t until about two weeks post-treatment that my skin was healed, although I have heard of it taking longer. Two months on, there is still a perfect circle on my boob that looks like I have a slight tan from the extra boost sessions, and it is recommended to keep the area protected from the sun for at least 1 year post treatment.
Expected side effects from radiotherapy
Other symptoms that I experienced were as follows: after a few sessions I had shooting pains within my boob, and all of the post surgery swelling that had disappeared by this point, came back.
Two months on, it is all still a bit lumpy and twinges at times (particularly if I do vigorous exercise) so I’m hoping this will calm down soon. Although this is apparently very common, it was something I didn’t know about until I mentioned it to the radiographer.
I was also (despite drinking like a fish) permanently dehydrated, and got lots of headaches – whether this was a symptom from the radiotherapy or the subsequent dehydration that it caused, I’m not sure, but it was pretty rubbish either way.
But, on the plus side, my armpit hair seems to have waved a surrender flag and gone for good, I’m hoping this is a permanent side effect and shows that there are positives in every situation!
Last but definitely not least, I was knackered beyond anything that I have ever experienced up in my whole life, like seriously knackered. I can’t describe how bad I found the fatigue, and I know that not everyone gets this. But for me, I found that everything was monumental effort, and even just thinking about doing something more active than watching box sets on the sofa exhausted me. It is worth preparing yourself for this eventuality and taking everything that is better than this as a bonus.
My top tips
Other top tips that I was given that may help you if you are about to start radiotherapy:
drink water and then drink some more – if I drank any less that 2.5litres of water a day I found I got terrible headaches and was massively dehydrated, keep a water bottle with you at all times and try to avoid caffeinated drinks wherever possible
avoid taking baths and keep your shower a little cooler than usual
use allergen-free/chemical-free shower gel that is PH neutral to ensure you don’t unnecessarily irritate your skin N.B. Tropic Skincare have a really nice shower cream that is great for this and fulfills all of these criteria
Moisturise, moisturise, moisturise! Please try to use products that are as natural as possible – your skin is in major distress at this time, and needs products that are gentle, free from chemical nasties and allergen-free.
rest as much as possible – for the fatigue or simply because you have a great excuse
avoid swimming (although for me, this wasn’t a problem as I was so fatigued I think I would have drowned if I had even attempted it!!)
take painkillers if you need to – I got quite bad, shooting pains in the radiated area and had to resort to codeine prescribed by the Doctor for relief
if your hospital allow, bring your own dressing gown, you can also use this as a blanket over your legs during the session for extra warmth
don’t expect it to be a walk in the park, you may be lucky and it may well be, but I genuinely feel that this is where I went wrong and why I found it all so difficult
Each treatment plan is personal
Obviously, depending on where you are having the radiotherapy and your specific situation, will depend on the routine, number of sessions and the side effects that you might experience.
For example, if the radiotherapy is to your head or neck, you will have a special mask that keeps your head in position to protect your brain.
If you are have had prostate cancer, you will have to drink a certain amount of water and not pee before your session. Your medical team will obviously tell you more about your particular treatment and what to expect, but hopefully, me sharing my experience gives you an idea of what it may be like.
However, I have realised through all of this, each treatment plan is completely different and tailored to the individual. Even if we have exactly the same plan, our experiences, symptoms and side effects can be completely and totally different.
Either way, I wish you good luck, good vibes and the strength to continue to fight fierce!