Yesterday I finished my course of 24 radiotherapy treatments. Today I begin my course of 9 proton treatments.
I cannot believe that I have already been having treatment for nearly five weeks – that I have been here for nearly seven weeks – and if I’m honest, I’m beginning to wish I could slow down time because I feel so totally safe here. It seems to have rushed by in the blink of an eye and it really does feel as though I have been in some sort of time warp that has madly sped time up.
I have been planning for weeks, as soon as I had my first radiotherapy treatment in fact, to do a post on my experiences of radiotherapy. However I am horrendous at actually getting things done and as I found more and more ways to blab on about myself in various different posts, this entry repeatedly got put on the later base. I will be blaming this on the pain killers and sarcoma; my mum is not buying it as she says I have always been this way (hopelessly forgetful), but as I say to her: the sarcoma party is an exclusive VIP party and she doesn’t know the struggles we face! (This is best said with a sincere look of long-suffering and glassy eyes that gaze out into space, with a hand on the heart – I’m allowed a little drama, I have sarcoma… I don’t know if I mentioned that.)
So anyway, in this post I hope to shed a little light on radiotherapy and dispel any myths you may have heard about the treatment. Because, for me anyway, radiotherapy has been a total doddle. I know this may not be the same for a lot of other patients because compared to a lot of people here at the centre, I am having a massively easy time of it. I only need to have one treatment a day (compared to others who are having it twice a day), I am not having chemo alongside it and, because of the location of my tumour, I am avoiding some of the nasty side effects that others who had/have brain tumours are experiencing, such as mood changes.
I was warned that I may get sickness and that redness of the skin would develop around the treatment site – redness which will later develop into burns and possibly blister. So far I have had no redness or soreness at all, which is great for me. My doctor ominously tells me that I will get this soreness any day now, but I am willing my skin to prove him wrong. With respect to the sickness – I don’t think I’m getting this at all. I vommed out of the car window today on the way home which wasn’t pleasant at all, but I think that was less to do with the radiation and more to do with the fact I hadn’t eaten anything all day, but had taken lots of strong painkillers (including opioids). I’m hoping that anyway, because I’d much rather keep that as a one off. I was also told that I would likely become more and more tired as the treatments went on; I think that maybe I am beginning to feel this. It’s just a feeling of lethargy in my bones that I get every few days, and when I get that feeling I will not move for anyone or anything… except maybe for chocolate and the TV remote.
The radiotherapy itself is easy breezy. My radiographers are just the loveliest people, and I will really miss them now I don’t have my daily treatments. They have made me little booties so my feet didn’t get cold, cooked me at least 10,000 calories worth of biscotti and bought me a big bottle of root beer so I could sample some for the first time. They made me feel relaxed at all times, which was no mean feat considering how anxious and scared I was at first about pooping myself on the radiotherapy table. I don’t know how a group of people made me feel okay about doing that, but they did. And I am so thankful for that. And good news too: I didn’t poo on the table at all! Which is, I would imagine, the greatest present I could have given to my radiographers. I am also unbelievably grateful to them for turning what was five and a half weeks of treatment into what felt like five and a half weeks of catching up with friends. And now we are all official Facebook friends so at least one good thing has come of this: I can increase the Tumour Has It Facebook page likes by three – thank you UF Proton!
Back in July when I came first for proton therapy, before I was sent home for the correct operation, I got five tiny dots tattooed around my abdomen and hips so that they could line me up with the machine each day. I also got a body bag (much less horrific than it sounds) moulded around me as I lay on my back, which was used to make me lie straight in each session. Using these tattoos, some little stickers and this body bag, I was each day positioned into place and then I would lay on my back for about twenty minutes whilst the machine blasted me with radiation. You can’t feel anything and I would just fall asleep each day, gently drifting off to the soothing sounds of the radiotherapy machine and Christmas FM.
Today I will be having my first proton therapy treatment. I am hoping I will be able to spark some sort of bitter rivalry between the proton and radiotherapy sides, by casually slipping into conversation topics such as how many cookies the radiotherapy side made me. If I have not received a full size chocolate cake by the time my treatment is over, I will have failed. I am not worried at all about starting proton; I have been put so at ease by all the staff at the centre, I have total confidence that I will get on with my new radiographers and that they will continue to support me through to my final treatment.
So that’s pretty much all there is to know about my experiences of radiotherapy. It is beautifully unexciting, which is actually a fantastic thing for me to be able to say. So much of my diagnosis and treatment has been crisis ridden and fraught with worry, stress and set backs. I had to fight for what felt like forever for answers and a diagnosis; I had to be sent back for a second surgery the last time we came here; I was required to go through extensive spinal surgery that still haunts and terrifies me. So the fact I have nothing particularly crazy to report back on about radiotherapy feels amazing to me and I couldn’t be happier about it. So although this may not be the most exciting or interesting post for you to read, please take from this that that is because I am totally content in how this stage of my treatment is going. And that is why I am loving it here.