I woke up early this morning (unusual) and sketched out the idea for this blog post, noting that Rachael Bland’s last tweet had struck a chord (and not just with me).
In the words of the legendary Frank S – I’m afraid the time has come my friends. And suddenly. I’m told I’ve only got days. It’s very surreal. Thank you so much for all the support I’ve received. Debs and lozz will continue with the #youmebigc podcast. Au revoir my friends. ?? pic.twitter.com/DhMurbqMJz— Rachael Bland (@Rachael_Hodges) September 3, 2018
By the time I’ve come to edit and post, Rachael has sadly died:
Our beautiful, courageous Rachael died peacefully this morning surrounded by her close family. We are crushed but she would want me to thank everyone who took an interest in her story or sent messages of support. You’ll never know how much they meant to her. Steve and Freddie xxx pic.twitter.com/soq7YHvF9u— Rachael Bland (@Rachael_Hodges) September 5, 2018
I felt like I’d got to know Rachael through the fabulous #YouMeBigC podcast on BBC Radio 5, which is currently in it’s second series… it was already doing well, but yesterday got to the number one spot:
We did it @GIRLSTOLELONDON @bowelbabe @MikeHolt12. #YouMeBigC is #1 and I promise you @Rachael_Hodges is very happy about it. While we’re at it, I’m doing my best to read as many of your messages to her as I can. Can’t tell you how much comfort they’re bringing us all. Thank you.— Steve Bland (@blandsteve) September 4, 2018
I had also had a handful of short DM chats, and listened to her chat with another friend, Kate Bottley – covering death, faith and all sorts. Knowing that quite a few people have found it hard to see stories about Rachael in their timeline (as it is something they don’t want to think about – too close to home), I loved this quote, referring to the fact that the podcast had changed the conversation round cancer:
Above all, Bland reminded me how social media can still be a huge force for good. She had found personal comfort from people sharing their cancer stories, so she continued to share hers. Her treatments, her days out with her husband and young son – and her race to write a memoir for him – were all documented with purpose and beauty. Guardian
If we get the funding from Macmillan, I hope that we can continue expanding that conversation, and highlighting the strengths and weaknesses of social media as a space for people affected by cancer.
Just to give a sense of how much Rachael affected people’s lives see:
For the incredibly courageous & inspirational @Rachael_Hodges & her family. Love @allontheboard x— All on the board (@allontheboard) September 4, 2018
Please listen to the podcast #YouMeBigC by Rachael, Lauren Mahon & @bowelbabe link in the comments.#RachelBland #cancerwarrior #Cancer #cancerawareness #beatcancer #noonefightsalone pic.twitter.com/Caejlzajnx
And here her podcast pal Deborah James talk about how it’s possible for one person to make a difference (see also her article):
“She leaves a wonderful legacy”#YouMeBigC’s @bowelbabe pays tribute to her friend and co-presenter @Rachael_Hodges, and says we need to “celebrate her life and continue the work she started”.— BBC Radio 5 Live (@bbc5live) September 5, 2018
Full interview: https://t.co/x5bOeQxbOU pic.twitter.com/UscOWQItvb
With an awareness that treatment options were running out (both triple negative and metastatic cancer are things that need much more research), the first podcast of the second series was focused on the topic of ‘death‘, and the focus was that we need to accept that death is a natural part of life (it’s the only sure thing for all of us), and stop using euphemisms, etc…. and you’ll see her colleagues avoiding ‘passing on’ and saying ‘she’s died’.
One of the things that has kept me going through treatment, aside from the huge amounts of support – digital, practical, prayerful, was having listening to a Greenbelt talk by my friend Andrew Graystone, about his own experience of prostate cancer, and one of his opening lines was ‘I’m going to die as many times as the rest of you, just once’. We’ve had conversations before about the fact that everything is talked about in 5 or 10 year survival terms, which makes you assume that that’s the best that you’re going to get – so it’s been lovely to hear from people who are 30+ years on, and from another friend that they rarely see people in the palliative care home, because it’s ‘rare’ for people to die from breast cancer these days… though that rarity includes people like Rachael – and is 11,500 women per year. The 5/10 year survival rates are basically tied to research targets – no one wants to fund hugely long-term studies!
When I attended ‘A Space for Sharing‘, we talked about the fact that those of us with cancer are much more aware of death – it has come so much closer. There are some who really struggle with the social media spaces and forums, because you see the best and the worst of everything – including when people die. As the Chief Macmillan Nurse said, however, once you are in ‘the cancer world’, you are in a circle of people where the likelihood of death is higher, and this has always been the case – whether in physical support groups, or now online support groups.
Within Facebook groups, there are spaces made to remember those who have died, a couple that have affected me particularly include:
Mhairi Fleming, a friend of my cousin’s, who gave great support online, and introduced me to YBCN, posted this video about her expectations about death (from a faith perspective). She was diagnosed with secondaries about a month after I was diagnosed with primary breast cancer, and her funeral was held on the day I had my first chemotherapy (benefit was being able to see the love poured out for her via Facebook, and also people sharing things that had struck them at the funeral).
Tracey Keers (nee Brown), who I met at the BCC Younger Women Together event (but had also talked to via Instagram beforehand), and discovered she had secondaries during her pregnancy, and died shortly after giving birth (very early), and was able to get married just before she died.
To note that there are a couple of academic research areas related to death, that I’ve had some (light) involvement in: Centre for Death and Life Studies at Durham University, and the MA in Death, Religion and Culture at University of Winchester (with associated Facebook group).
With death in mind, it certainly makes you think about how you live, and not making life about ‘waiting for retirement’. I waver between ‘I really want to be a Professor, and I want to be one sooner rather than later’, and ‘there are more important things in life than work, so don’t lose the rest of life’ – this is not something particularly new to me obviously… but there’s a new intensity to it. There’s a certain amount of peace about the hope I have for when I die, but it’s very human to hope that that won’t be for some time!
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.