So, today is the first day of October, and your timeline may have been full of (pink) breast cancer awareness campaigns … also noticed that it’s ADHD awareness month, Black History Month, Downs Syndrome Awareness month – so hopefully we’ll learn about a range of different things this month…
Facebook ‘Secret’ Campaigns
You know I’m not a fan of these right? How does posting some kind of random emoji, your underwear colour, or an untrue statement (that caught you out) help us to be aware of what we should be doing to check our breasts (women and men) on a regular basis. As I said yesterday, but worth a reminder – I find ‘the lemons’ a useful illustration for people who don’t have cancer to look out for – and if you notice any of these – get to the GP as soon as you can (especially with the delays that many have faced with COVID):
For those who have already had primary breast cancer (and, for some, who will be ‘de novo’, notify GP if these are concerning even if you don’t have cancer) – around 1 in 3 will get secondary cancer (like me), with an average lifespan of 2-3+ years (only 20%, especially those with triple negative, are expected to make 5 years) … so spotting earlier is key:
Although I am trying to slow my life down, of course I want to get involved in things to make a difference to my life (and those in similar situations), so earlier this year I joined METUpUK, who are “are a patient advocacy group aiming to turn metastatic breast cancer (MBC) into a chronic illness and support MBC patients to gain access to the best medicines to prolong and improve their quality of life. We work towards a day when MBC can be cured.”
Although October is Breast Cancer Awareness Month #BCAM, only 13th October is a day for a specific focus on secondary cancer, although it’s only this that kills (the data around secondary cancer patients is still very poor, so it’s hard to establish exact figures, life span, etc.)… and METUP UK has some material coming for that day too!
We had a couple of meetings recently – one to look at the overall pattern of where METUP-UK is going, especially with early member Beth’s death this summer, and founder Jo dealing with brain mets this year, and the other to look at how some of us can take responsibility for the various social media aspects – and ensure some consistency. As most of us are (young) secondary cancer patients – already trying to balance cancer, work, family, and rest of life – we’re trying to find a couple of people to support each aspect (and we’re open to family/friends/primary patients – and also keen to advocate on behalf of all metastatic patients, not just cancer).
So … I’m starting to look into the options for what we can do with blogs on the website, how we can share more stories, link to news, and other options … if you’ve an idea for something to contribute – let me know (or even what you’d like to know/see, that I can maybe get someone to answer…
31 or 3:1
So, knowing that 31 women in the UK die every day from breast cancer, I am taking inspiration from a fellow secondary friend … the month out of hospital I was managing 1-2km per day, last month around 2.2km per day – so today I ended up walking 3.1km – and wondering if I can manage that distance (as an average) every day for this month. If you fancy supporting Metup for this – e.g. 31p per day would be £9.61, or if you were feeling particularly flush, £1 for each woman that will die this month = £31!
Another support I’m keen on for secondary patients, is this initiative set up by Gemma (who has had to deal with spinal and brain mets), which provides ‘goody bags’ for secondary patients, seeks funding for more research, and also has an associated Facebook group.
The Younger Breast Cancer Network was the first Facebook group I truly joined, and particularly connected with those that were going through treatment at the same time, or met at events. Aside from the public page, there are a number of secret groups run by volunteers. I have resisted becoming an official volunteer, but I am an ‘admin’s mate’, so keep an eye out for those who haven’t been responded to (no post goes unanswered), and look out for activities to add some joy to the group (e.g. predictive sentence games).
I joined the admin team of the ‘Building Resilience in (Breast) Cancer’ just before my latest diagnosis, but were I being fully active, I would be welcoming new members, setting up topic prompts, engaging in the Sunday evening discussions (and taking my turn at writing the summaries) and then sharing those.
I’m also engaged in some other groups on a smaller aspect, but otherwise, it’s about keeping an eye out for Instagram and Twitter for hashtags, playing with a Discord group, etc. and trying to learn more about what is available online and offline for various types of cancer. Unfortunately just heard yesterday that our NIHR bid on social media and cancer has not gone to the second stage – we await more detailed feedback to see how/if we can take that bid further forward – I think it’s so important that we know so much more about why/what/how people use (or don’t use) social media alongside the rest of their treatment – and what helps and what hinders (so much good advice, but so many people dying – 50 young women from YBCN alone this year…).
October is going to be my month of Scanxiety – as I have my CT-with-contrast scan on 14th October, might get the results by 28th October – although there are lots of delays, so not to be surprised if I don’t hear til early November. In some ways, this is a relief, as I thought I would have no idea if my treatment is working or not til December, so hoping for best-case scenario – that the treatment is working (and that we’re managing the side-effects) – then I can start to work out how to work back towards some kind of normal life, with (I think) another set of scans at the end of the treatment plan (December?) – if it’s working, we continue (it’s heavy going – 4+ hours in an oncology suite every week + side effects) – if not, then we have to try something else…