It’s Metastatic Breast Cancer awareness today. This is a tricky topic, as most people don’t know what it is Many primary patients don’t want to hear about it – but no oncologist/surgeon can promise you are cured – and as with the standard awareness campaigns – the sooner any new tumour is found, the better – so you need to stay aware too. This time last year I didn’t know it was going to be something I had to deal with … and I’m doing my best to be #BusyLivingWithMets (although it involves a lot of sitting/sleeping and #waitingroomfeet). I have just joined up with MetUpUK, which has just launched a new website today (although it’s been active online/offline for quite some time), driven by the wonderful Jo Taylor (@abcdiagnosis) who runs exercise retreats for cancer patients, and has been working to get the NHS and major cancer charities to adopt her ‘red flag infographics‘ for years (they are already widely circulated in the cancer community):
I recognise quite a few other names of people on there who are in Mission Change … patient driven change within the health service.
I’m dropping in a few useful bits of content from around the web to help people understand more:
There’s a useful video from Breast Cancer Now as to what Stage IV cancer is:
and one of the things we really could do with is a specialist support nurse:
— Dr Bex Lewis (@drbexl) October 13, 2019
Someone told me the percentage of Breast Cancer Now money that goes into secondary research (bearing in mind that this is what actually kills us – primary cancer is officially curable) – somewhere between 5-20% – I can’t remember. They do, however, provide support groups for us, and this year got together a group of secondary patients who came up with the #Unsurvivors campaign (I’m not particularly comfortable with the term, but please sign the petition anyway), and see the rationale for it:
Make Seconds Count is one of the few charities that focuses specifically upon research to find more treatments for those of us with secondaries:
But finding it early can make the difference of living longer with a better QOL than living wothbworse progression of the disease – it WILL become common place to talk about #secondarybreastcancer as we @METUPUKorg are making it that way with #BusyLivingWithMets #SBCinfographic https://t.co/ssyoXhonw2
— Jo Taylor (@abcdiagnosis) October 12, 2019
YBCN is a very supportive online community (mostly Facebook) which has been sharing stories from those with secondaries all week in The October Project – and today’s is (‘mental gymnastics’ is a very apt phrase):
View this post on Instagram
But what is a metastatic cancer? And would you believe it if I told you every woman in this photo had it?????????? ?????????? There are many names for this type of cancer – secondary / stage IV / metastatic / terminal (only if you’re trying to win an argument though!) They all mean the same thing……..????????? ????????? A secondary cancer is when a cancer spreads, metatasizes, from the original location to somewhere else in the body. Once it has spread it is no longer “curable” and, whilst it might become dormant in a person’s body (NEAD – No evidence of active disease) it will always be there and someone with MBC will be in treatment for it for the rest of their life!????????? ????????? In my case, my cancer went from my breast to my bones, But breast cancer tends to like spreading to the bones, the lungs, liver and the brain. ????????? ????????? If you’ve had a primary cancer and you are concerned about a spread in your cancer, please look up ABCDiagnosis and check out the infographics Jo has created. They’re truly one of the best resources you could have on your side!?.??????????????????? .???? . . . . . .??????????????? .??????????????????? #metastaticbreastcancerday #bcam #secondarysisters #secondarybreastcancer #metupuk #cancerthriver #metup #metastaticbreastcancer #breasties #walkingmiracles #dyingforacure #womenwithcancer #stageivneedsmore #researchnotribbons #thriver #truecancerbodies #cancersucks #cancerrightnow #fuckcancer #emmaVcancer #ybcn #thegramgang #BreastCancerAwareness #standup2cancer #su2c #breastcancerawarenessmonth
And Shine Cancer Support published something similar (by the way, I assume all queries come from a good place, but it’s great if people educate themselves as to the impact constant queries have on us):
and sometimes we just need reminding that nothing in the world can prepare us for living with a chronic/life limiting illness.
See what BRiC has to say about this:
And #NoBraDay was an interesting one on Twitter – it does have a good purpose – but obviously was being misused (but was trending pretty much all morning):
It’s for them we are trend #NoBraDay… So don’t get carried away by the people turning it into sexual content … we are doing this for our aunties, mothers , friends and every woman fighting and winning the battle of breast cancer. Lost an aunt to it so I understand the impact. pic.twitter.com/QC6wOKAheW
— IgboMade (@volqx) October 13, 2019
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.