This morning I went to the first of a course with Maggies called Where Now? They’re run by a clinical psychologist, and obviously are run under Chatham House rules (which mean a secure space for sharing, and nothing individual/identifiable shared outside the space – as with most support groups) with a very small group.
The Where Now Course
The course focuses on the following areas over several weeks:
- Exercise (I’ll miss this one next week, but I’m doing pretty well with Life Leisure – typically 1 gym session, 1 class, 1 swim each week + Pokemon)
- Healthy eating
- Emotional wellbeing
- Managing post-treatment challenges
- Partnering with your medical team
- Keeping up momentum
Today we got to know each other, a few tears were shed, people talked about the effect that cancer had had on our lives, and what we hoped to get from the course, and our lives. People have very individual ‘journeys’ We were told that anger, guilt (for impact on family, etc.), and tears are all normal, and looked at the fact that most people’s lives have ups and downs, but most people with cancer start from a higher stress point, and therefore the highs hit, e.g. irritation/tears more quickly, and the difference between tiredness (relieved by a good night’s sleep), and fatigue (not). We did a relaxation exercise before having lunch together (in future sessions, we’ll all bring a contribution to the meal), before heading home (feeling surprisingly tired):
I’m always being asked at the moment if I know when things will be too much for me (those of you who know me, know that I’ll just keep ploughing forward, and I use work/food to keep me going – sometimes that’s OK, other times I want some time out), so in the workbook we’re given, it fell open at:
I will need to talk to the course convenor once I get my scan results, as the course is intended for those who have finished active treatment (barring hormonal/maintenance treatment), so we’ll see. Looks like it’s going to be great though…
Scanxiety and Bone Scans
With all the scanxiety currently surrounding my life (for several weeks now), and the Christie event (which I thought about not going to, then went to), my brain is wavering between ‘well can’t change what is going on, and they can keep people living for years even if you do have spinal mets’, and ‘oh, Manchester Town Hall reopens in 2024, will I still be here; what else can I throw away to make it easier if someone has to sort out my house’, had a surprisingly nice day yesterday!
My friend Claire came with me, literally held my hand/talked as the cannula was inserted (thanks to Liesl who for the second time, got it in first go … I am someone who has been sent home from that chemo unit before after everyone had had their allotted attempts at cannulation), then kept me company as the nuclear infusion went in (I last had a bone scan October 2017), and the three hours that you then have to wait (drinking much water, and keeping away from pregnant women/young children) for it to circulate the body, 45 minutes under the scanner (not claustrophobic like the MRI), and then I headed into work to teach 5-7pm, before heading out for Griff’s leaving dinner.
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I have been told that my name is on the MDT (multi-disciplinary team) meeting for Monday 17th, so should get the bone scan results (good or bad). Best possible news is that it’s a benign hemangioma as they originally thought, other options are – well, it’s something we want to investigate further with a biopsy, or we definitely know it’s bad news… I’m feeling pretty resigned to the fact it’s bad news, because it’s not the first test done, the team are concerned, and the face that everyone pulls when you say that whatever is on my spine has shrunk (which indicates there are cancer cells there that have responded to treatment), but we’ll see… carrying on with life as far as possible is the plan, whilst dealing with extra fatigue and emotional stress.
I was supposed to have an MRI scan within 2 weeks of the last appointment (so by next Tuesday), but I’m still waiting for a cancellation (or a date, likely post Christmas) to also check the shadows on my liver, so those of you who pray/good thoughts, etc. it would be good to have that soon. Scanxiety is (almost) worse than knowing what you’re dealing with, so you can start a treatment plan, and understand how it might impact your life!
The Badge Blanket
So, you may know that I’ve been decluttering for years, with extra piquancy added with cancer/potentially life shortening – and felt that I have pretty much got there over the past year (aside from digital decluttering – though I might just leave everything on an old hard drive), with one of the last things to sort (aside from the house) my badge blankets. My friend Christina helped create them, I’ve sewn a lot of badges on, my friend Sian has sewn a lot on, and my mum has sewn a lot on – plus suggested that the ‘iron-on- badges be sewn on with fabric glue (excellent idea).
These badge blankets started around the campfires with Girlguiding, with every badge on there (aside from the Guide/Brownie unit badges) either earnt, or purchased from places I’ve visited/been involved in (with the occasional extra purchase on ebay when I just can’t find one locally) … which saves a load of £ on feeling like one wants to bring any other souvenirs back (aside from food/drink, and photos). The morbid side of the brain wonders what’s the point (and with my annual photobooks), but … I Keep Calm and Carry On (makes a lovely Christmas present option, LOL)
Blanket 1: Front
Blanket 1: Back
Blanket 2: Front
Blanket 2: Back
Lovely, aren’t they … helps keep one warm (although tonight having the fire on, and finishing the port, brought on the medical menopause heatwave!):
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.