I was originally told I was unlikely to need radiotherapy, although they said occasionally things change as treatment goes on. When the pathology results came back, however, the tumour was clearly larger than expected, and had spread into more lymph nodes than anticipated (it sounds like more than 3-4 triggers radiotherapy, and I had 5), and therefore this was to be added to the treatment plan too.
Preparing for Radiotherapy
Today’s appointment was to prepare for radiotherapy, to ensure that all measurements have been taken, so that when I come in for treatment, everything is set up and the treatments can be fairly swift. I was told to expect to be there around 90 minutes, although the first thing I was told as I was sat down was that the room I was going into was running 30 minutes late (I’ve got use to having things to do on my phone or reading a book, so, no big deal).
A lot of people say radiotherapy is a walk in the park compared to radiotherapy, some say that people who have been fine with chemotherapy struggle with radiotherapy – as always with this disease, it’s wait and see how it affects you! The one thing that everyone is agreed on is that radiotherapy increases fatigue (which is already there from surgery/chemotherapy), and typically takes around 8 weeks to get back to normal (if you’re not one of the unfortunate ones that doesn’t really get over the fatigue – again – have to wait and see!). Here’s the link to the Christie’s information on radiotherapy.
Chat with the Oncologist
Shortly after, I was called in to see Dr Chittalia – another very efficient appointment, to check I was at the expected level of health post chemotherapy, and asked if I had yet started taking the Tamoxifen? No, I hadn’t because the GP yesterday said the letter just said ‘mid-April’, and as I was seeing people at the Christie today to check and see … so I guess that answers that, and I’ll start tonight! There’s differing accounts of whether it’s better to take at night or first thing in the morning (again, down to the individual) but whichever, after a bit of experimentation – stick with it… but hurrah – possible side-effects = menopausal hot flushes and insomnia, fluid retention/weight gain, bone thinning, and more indigestion – whoopee – maybe I should have ordered a larger bottle of Gaviscon (aniseed flavour please)!!
Dr C confirmed that the radiotherapy would be to the mastectomy scar area and the lymph nodes in my neck, warned of side effects (tiredness mostly, but also increased risk of lymphedema to the arm), told that Aveeno and hydrocortisone cream between them should help manage the damage to the skin. I then had to sign the consent form for treatment, before heading back out into the waiting room!
Scanning for a Plan
Not long after that, I was called into the scan room and yes, it was really cold – so thanks to those who warned me to have trackie bottoms and warm socks on. Other warnings were not to wear your favourite white bra, and some wet wipes (forgot those) to wipe off the ink marks that get drawn on your skin as they measure everything up. Standard questions re name, date of birth, address, not pregnant, then it was explained what is being done, and to yell if not comfortable, as will need to keep the same shape/place for the 15 treatments that are coming.
Then sent behind the – erm – not particularly privacy giving – paper curtains to put on the top (which will keep throughout treatment so is no cross-contamination between robes, and leave behind at the last treatment):
I was then instructed to get onto the following contraption (a 3D CT scanner):
Bum goes at the base of the slope behind that little lip, black wedge is for your knees to go on, feet need to be wedged up against the foot rest. Neck goes into the headrest, arm to be treated is placed above your head in the red arm rest (the other side is removed whilst your scan is underway).
I was asked to shift a little bit this way, that way, the other way, whilst various people came and went, drew things on me, stuck things on me, a green laser on the ceiling pointed at me, and they mostly discussed what they were doing with each other whilst my job was to lie as still as possible (ALWAYS at that point that your nose itches, etc. isn’t it!) and keep my other hand wedged into the waitsband of my trousers so it was out the way.
When they were happy that they had me in the right position, they wrote down a load of positioning numbers, then the table slid back into the scanner (thankfully a polo-type one so not as claustrophobic as an MRI scanner). Keep still, keep still, ignore the itches, mostly close eyes – but I wanted to see what was going on (remember NOT TO MOVE MY HEAD!)…. As the machine got ready – whereas the normal CT scanner sounds like a washing machine in cycle, this sounded more like a jet engine waiting to take off! Whole load of green lights spinning around the black track area, few movements back/forth of the table, and then the team came back into the room….
The sticker marks were picked off, and then three tattoos were inked onto the skin (who knows if these will be the only tattoos that I ever have?!):
These marks help your radiation therapist accurately aim the radiation at your treatment area. You may be having five days or six weeks of radiation, and every treatment should be aimed at the same place in order to prevent recurrence and to spare healthy tissue.
The reason for the tattooing is a bit like using a bulls-eye target for archery, darts, or rifle practice. Having a clear target area to aim at improves results. Verywell.com.
And I think this is one of mine (it’ll be easier to see once the pen is scraped off) – as they say, they look like freckles *The scar line is from the extra surgery I had in January):
I’d walked back to my car and was 3/4 of the way home, when I pulled over to take a call. I was asked to come back and have a re-scan done, as my arm was not high enough – this could be down to lack of movement, but they wanted another try, as otherwise the radiation will hit my arm rather than my neck – doesn’t sound ideal.
I headed back in, Dr C happened to be there and was apologetic, but said we need to get it right! About 20 mins later, I got called in and went through the same process again, a little faster as had done the talk, the robe and the tattoos. Arm was pushed a little further, asked to wriggle a few places, a test scan was taken, more wiggles, and a couple of minutes later (I think), it was all done – and I headed home again!
The first treatment date is Weds 25th April, and will finish on Tuesday 15th May (although sometimes people get booster sessions, but I think these are usually known about pre-treatment). I’ve got the first 5 dates in the diary (obviously not early mornings), and they’ll add a new date on at each appointment… I’ll start the medication this evening, and then we’ll see!
Planning another part-day into work tomorrow, whilst some work is being done on my house, and new kitchen is being fitted next week 🙂 Planning for that has been something great to do whilst off sick!
P.S. Port Removal
Last week I had my port removed, and today was allowed to remove the waterproof dressing (which makes me itch like mad), and the stitches should have dissolved:
Dr Bex Lewis is passionate about helping people engage with the digital world in a positive way, where she has more than 20 years’ experience. She is Senior Lecturer in Digital Marketing at Manchester Metropolitan University and Visiting Research Fellow at St John’s College, Durham University, with a particular interest in digital culture, persuasion and attitudinal change, especially how this affects the third sector, including faith organisations, and, after her breast cancer diagnosis in 2017, has started to research social media and cancer. Trained as a mass communications historian, she has written the original history of the poster Keep Calm and Carry On: The Truth Behind the Poster (Imperial War Museum, 2017), drawing upon her PhD research. She is Director of social media consultancy Digital Fingerprint, and author of Raising Children in a Digital Age: Enjoying the Best, Avoiding the Worst (Lion Hudson, 2014; second edition in process) as well as a number of book chapters, and regularly judges digital awards. She has a strong media presence, with her expertise featured in a wide range of publications and programmes, including national, international and specialist TV, radio and press, and can be found all over social media, typically as @drbexl.