Radiotherapy - a patient’s perspective

A month ago I wrote about the experience of having my pre-radiotherapy ‘planning scan’ and the three little tattoos that came with it [My First Tattoo]. I have now nearly finished my radiotherapy and it is about time I wrote something about it [I should say at this point that this post is the first one that I am writing in response to a request - one of the radiographers that has been doing my radiotherapy saw last month’s post and liked it, and asked if I was writing anything about the experience of having the treatment].

Before you have radiotherapy the doctors decide what total dose of radiation they want you to have. This is then divided into a number of smaller doses, called fractions, to allow the non-cancerous cells to recover between the treatments. In my case it was decided that I would have a relatively small dose, so I am only having fifteen fractions, rather than twenty-five or even more, as some of the other patients I met were having. The radiotherapy department is only open Monday to Friday and so I have been going in to the hospital (James Cook University Hospital in Middlesbrough) every weekday since the middle of August and will have my last two fractions on Monday and Tuesday this week.

I had been warned that it might make me very tired and also result in other unpleasant symptoms such as soreness of the skin and damage to my oesophagus (my gullet) which would possibly make swallowing difficult. This last one was because of the location of my cancer - in the middle of my chest right next to my oesophagus. It wouldn't be the same for everyone having radiotherapy and there might well be different symptoms that other people get when the treatment is to different parts of their bodies. However, because I was having a relatively low dose I was told that I might not get any of these symptoms very badly.

On the first day of treatment, before the actual radiotherapy happened, my wife and I were brought into a room for a chat with one of the radiographers, and a radiography student, who told me again about the process and the possible side effects and answered any questions we had. Then, after a short wait I went through to the room where the machine is that would be used for all my treatments. A quick google search for ‘radiotherapy machine’ will show you that there are many different designs of machines but the one being used for my treatment looks almost identical to the one in the picture below (I was allowed to take a picture of 'my one' but I am not allowed to use that picture in social media or my blog).

 [photo from https://www.itnonline.com/content/renovated-uk-radiation-oncology-department-chooses-elekta-igrt-solutions]

Once in the room I got acquainted again with the ‘bean-bag body mould’ that they made for me when I had my planning scan. It was fastened to the bed and, once I had taken the clothes off my top half, I got onto the bed and wriggled until I fitted inside the mould, lying down with my arms stretched back horizontally above my head. Then they had to get me into exactly the right position, which is where the tattoos came into play. As I am lying down when they do this it is hard (impossible actually) for me to see what is going on, but what I think happens is that they use beams of light to get me lined up properly - all I can hear is various numbers being called out (e.g. “17.1, 69.3” and “I’m 2 millimetres supe on the head” or “4mm post on the patient”) and various other mysterious things of this sort. If I am slightly out of position they might ask me to shuffle up or down a couple of millimetres or else they might just push my body down slightly on one side (by the way - any radiographers reading this - you are all brilliant and all really lovely but it would really nice if you could somehow warm up your hands before this bit - brrr).

Once they have got me properly lined up, the machine springs to life and does a couple of turns around me (presumably to check that everything is okay) and then the radiotherapy staff all leave the room for about ten minutes while the machine executes a pre-programmed dance around my body. Until a couple of days ago I thought that it was different every time, but apparently it is exactly the same each time - but from my point of view some treatments seem longer than others.

While the treatment is going on I don’t feel anything - just as you don’t feel anything when you have an X-ray (and this is basically just an extra-strength X-ray), but as I have to lie completely still it can get a little uncomfortable and the urge to scratch my face or rub an itch on my nose can get almost unbearable. It is probably a good tool for meditation. The room that I have my treatment in has a large picture of Whitby harbour and abbey on the ceiling so I can distract myself by counting the windows on the buildings or focussing on one point on the abbey - I use different tricks each time. Also, there is usually some music playing so that can also be helpful - although once or twice the song has been something that I really want to tap my foot along with, and it has been hard to lie absolutely still. After about ten minutes the radiographers come back in and tell me that  can sit up. Then I get my shirt back on and go home until the next time. 

I have so far got off very lightly with the potential side-effects. I have been using moisturiser on the skin of my chest (but not as often as I was told I ought to) and I haven’t had any soreness or redness of the skin. Likewise, I have not noticed any difficulty swallowing that might indicate damage to my gullet. My wife thinks that I am a bit more tired since having the radiotherapy but I haven’t really noticed it and it’s certainly nothing like as bad as I was expecting it to be. As I am nearly at the end of the treatment I think I may get away with it altogether, but I have been warned that it might take me up to six weeks to get back to normal, so it is possible that I may get some of the side effects (and particularly the tiredness) after the treatment is finished.

My radiotherapy has been an additional precaution after the main treatment for my cancer, which was my chemotherapy (about which I intend to write more soon). As I understand it, I am having it just in case there are any stray cancerous cells still hanging around that the tumour might grow back from. As my haematology consultant explained it to me, with my kind of lymphoma the best chance of curing it is on the first go, and if it comes back it is likely to be much more problematic. The scan I had after the chemo had very positive results and I think that my cancer is now gone.

The radiotherapy staff that have been looking after me, and doing my weekly reviews with me, have all been great - very caring and gentle and willing to answer questions and I want to take this opportunity to say thanks so much to all of you.