So, Monday morning starts with a hospital appointment (only 3 this week!), at a hospital new to me. The Christie has an outpost at Salford Royal, where stereotactic radiotherapy is undertaken (this info is on brain, but mine is on spine – a part of the body where it’s not (yet) standard practice). I had my sparkly purple boots for #waitingroomfeet (also thinking of Angela – purple/sparkles):
Once the team were ready, Kathy came to collect me, and talked me through what was to happen – now, and for the actual appointments (also to be held at Salford Royal) – I mentioned it had taken 3 x CT planning scans for my standard radiotherapy, so hoping today’s is all that is needed. So, today, was around 20 minutes for the scan within the CT scanner (and I also have a half hour MRI on Thursday at Christie main site), so there was a lot of lining up, and discussion of where best to place me/how I could be made the most comfortable possible, and I got to see the (silicone?) sheet that will be used to make the mask – designed to hold my head/shoulders in place so they can more precisely target my spine. Once I had stripped off the top half (again, though they very nicely kept me covered where possible – especially as the air conditioning is fierce to keep the CT scanner cool), and was in place, the mask is then heated in water, and stretched into place over my face. There is only a very tiny hole (less than a 5p piece) in the soft sheet – thankfully, as I don’t have brain mets, the hole could be made big enough for nose AND mouth, so that was pulled back into place (here’s the mask afterwards)
As the mask settled into place, and they were happy enough that it was set enough to not move much, but as it continued hardening, I was fed back into the CT scanner, and the scans were taken. I could see a little bit through the holes around my eyes, but mostly just shut my eyes and ‘tried to relax’. Started to get bone pain on right shoulder towards the end (where portacatch is also still pulling a bit), but then heard the machine slow down (sounds like a washing machine on a rinse cycle), and the doors open as the staff return, and it was done – after the addition of 3 more radiotherapy tattoos! I’m sure there’s plenty of jokes that could be made about the dodgy looking-ness of the mask, but still, if it’s keeping me alive…
After having my portacath stitches removed Wednesday afternoon, I’ll be back in the Christie Thursday morning for an MRI scan, probably with this mask on. Hopefully after both of those, they’ll have all the information they need – and I might even know the size of the tumour (more than smaller than 3cm). Then the appointments are 3.30pm 29/03 (that date familiar to anyone?!), and again 1st and 3rd April, with 5th held in reserve as 29th March will be a test run, and ahead with treatment if all is good. Treatment likely to be around 20 mins in the machine – hopefully a quick set up (unlike original radiotherapy)… been told safe to drive myself there/back, but likely to take the week off so I can rest a lot (fatigue being the most likely side effect). Got the pleasure of my Portuguese cousin and her son coming early the next week – so just hope I have enough energy to join in … but we’ll see! As Suzanne said right at the beginning ‘take it one appointment at a time’, and as I say in my BBC Radio 4 Lent talk:
Cancer treatment requires a huge amount of flexibility, the body can react in unexpected ways, and the machinery can break down. As Gillian Straine writes, cancer is a journey defined by ‘loss, uncertainty, and fear’: our life shrinks to focus upon healing the body, handing it over to the experts.
So, for now, on with work for the afternoon… important for my sense of purpose!
You can see the machine, and some other images of the mask, plus my face before/after here (not sure my face liked the damp silicone, but hopefully now it’s hardened… but anyway, we Keep Calm and…:
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) 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.