Last Friday, I went to see my new oncologist to understand what the next steps were after finishing chemotherapy. I went along with my very first Uncle H friend, Dana, or as I now call her, Donna (due to my oncologist calling her that in the write up letters from our appointments). Donna, looking for opportunities for further development, has taken up the voluntary post of chief scribe during the meetings with the various medical establishments, in order to allow me the ability to just listen and process, and to have notes afterwards to aid my chemo-addled memory.
Obviously that’s not all she’s good for – she also asks good questions and is there for me post the meeting so I can play back what was discussed and chat about how it made me feel, all of which I have found to be immensely useful!
Anyway, my oncologist was recommending we start radiation asap in order to capitalise on the effects of the chemotherapy. The radiotherapy would be given externally, where a machine is used to carefully aim (‘laser”) beams of radiation, controlling the cancer wherever it might be in the body and hopefully killing or reducing in number the cancer cells. That said, it isn’t to say, it doesn’t damage normal cells, just that they can usually repair themselves.
Now, whether radiation works or not, like chemotherapy is not known until you’ve done it, and it comes with a shopping list of potential short term and long term side effects (dependent on where you are having the treatment). Donna (not one of Santa’s reindeer) was dutifully writing down the long list as my oncologist went through the consent. Unlike those American commercials for medication, most of these side effects were of high probability and some higher due to the chemo drugs I had previously had.
It wasn’t till we got home, that Donna asked to see the consent form and laughingly said, “Have you seen the three side effects that have been crossed out?” – i.e. that I won’t get? I looked at the form and laughed – of the three, one was male impotence and the other two (infertility and early menopause) I already have from previous treatment! So much for upside!
Anyways, after a 2.5 hour planning session, which saw me get scanned with various levels of fluid in my bladder and receiving three tattoos (literally tiny dots that they will use to line me up at each session), all that was left was for my oncologist to plan where the “lasers” were going to zap.
I was told I’d have to have an enema prior to each session, which I then found out had to be self-administered – I mean seriously. If you want to picture how this works, I would liken it to when the toothpaste is nearly empty and you origami roll it up to squeeze the last bit of toothpaste out of it. Now imagine doing that but up your bum – honestly – it’s actually a real skill – but perhaps not one to feature on the CV.
Next, follows a period of waiting for it to take effect and then drinking 500ml of water quickly and having your bladder scanned to make sure you have enough but not too much in there. If you’ve got too much, you’re handed a very technical piece of apparatus – that of a plastic cup with a line on it and told to pee that amount and no more – pelvic floor muscles are being tested fully. This dance continues until your bladder is at the right level. The first week, I find myself in the hospital for many hours. As someone that is super hydrated, my bladder fills up quickly and therefore I end up having to pee lots of times, even having to get off the table to pee as my bladder is too full. You see, the levels of precision that the radiotherapy team follow are incredible.
When you’re on the bed, they pull you around until everything is fully lined up. Then you are scanned and they compare where everything is versus the planning scan. There are small margins of tolerance as they try to only zap the bits they want to and ideally (in my instance) protect as much of the bowel and bladder as possible. As an IBS sufferer, I am on a strict diet – more or less based on the FODMAP diet (for fellow IBS sufferers in the know), which is ZERO fun. No bubbles, no avocado, no cake, nada – the idea is to reduce the side effects and ensure that the bowel has hardly any gas or bloating in it, which helps ensure the radiotherapy is directed to the right place. It does seem to be working, but means Christmas dinner is going to be rubbish – no brussels, no Christmas pudding or cake, no chocolate – did I mention NO FUN!?!!
Now, as a massive fan of Austin Powers, I literally imagine him with the bunny rabbit ears saying laser beam, so in actual fact, when you come to radiotherapy, it’s quite underwhelming. A giant machine whizzes round you and makes a little bit of noise, but then it’s all over. 15-20 mins and you’re done – it’s the faffing around beforehand that takes forever.
So, this is the dance I am doing every Monday to Friday for six weeks. I’m seven sessions down and can honestly say, I can’t wait to be done with it. The side effects are awful, but the radiotherapy team are amazing – the number of people working with you to ensure you’re in as best shape as you can be – from the dietician, to the radiotherapy nurse and team. Everything is checked, weekly cotton buds are shoved up your nose and down your throat to check for COVID, your bloods are monitored carefully to ensure you don’t have any deficiencies and I’ve never been asked so much about my bowel habits.
Roll on January when this dance is over!
Dear Kat, I was really saddened and shocked when I learned only yesterday what you are going through, as was Chris when I told him. We read your blog posts together last night and being the amazing woman you are, we were filled with awe and admiration at the depth and strength of your courage. We really hope that your current treatment, however exhausting, does what it’s meant to do and that you can ‘kick ass’ to this and get back to embracing life to the full as you always have. We both wish you all the luck in the world. Thinking of you and sending you much love from
The Bonds
🤗 Lesley & Chris x