So today, I’ve just finished the ‘Moving Forward‘ course run in partnership between Breast Cancer Care and hospital trusts (Stockport in my case). For 3 hours over the past 4 weeks, around 12 of us have gathered in a (rather hot and stuffy) room at Stepping Hill Hospital to think about where next. In the past, people used to finish hospital based treatment and effectively ‘waved goodbye’, but this is the point at which help is needed – as the survival tactics that have kept you going throughout everything, and the regular rhythm of appointments, have disappeared … plus everyone thinks you’re through it, and assumes that you’re going to ‘go back to normal’ (if there’s ever such a thing!)
Week 1: The Menopause and Lymphedema
The information here was very similar to that from the Younger Women Together event, but it was useful to have things reiterated as the treatment to bring on early-chemical menopause (and all it’s fun side effects) is about to start. Managed to avoid lymphedema so far, but it’s a lifetime risk, with 1/4 likely to get it post surgery (I can see from others it’s not the end of the world, but it also brings with it more hospital appointments, and a need to manage it, so reducing risks is key).
We were given a ‘Moving Forward‘ book to take home and read at our leisure, and were shown a couple of graphs normalising the fact that recovery is not straightforward – one is in this article and the following diagram demonstrating that as physical health improves, the mental health has to work harder:
I did discuss this diagram with my counsellor at the Christie a couple of weeks later, because it seemed to have embedded itself into my head that part of the process will be having to fall off a mental health cliff, and that, in many ways, is more scary than any thoughts of cancer recurrence (yes, there’re there, but if you’ve ever been down a depressive hole, you’ll understand!).
Week 2: Symptoms & Services
The second week focused upon the symptoms to look out for in the case of a possible recurrence (something we all fear) in a way that sought to emphasise that it’s not a given that it’ll come back but that we need to become familiar with our new shapes, and highlight anything that’s not normal. There was a discussion between those who felt every symptom was possible cancer, and those, like me, who don’t like to waste people’s time, but also don’t want to leave it like I did last time… general advice is that if it’s obvious then get it checked, if it’s something else, then 2-4 weeks is a reasonable timeframe – and continue using the BCNs for advice (even if they are seriously overstretched!). One tool recommended by someone in the group was the CoppaFeel Remind Me App, which will send you a text once a month to check for anything unusual (same as the rest of you should be doing, as the earlier this stuff is caught…).
We then talked through the range of services that Breast Cancer Care provides, including the BECCA app (which John Knight from Big Lottery Fund mentioned to me as being super impressed by the research it was based on), and also a host of other online and local resources that we can tap into, including counselling, retreats, podiatrists, freebies (I’m looking forward to urban axe throwing which I won via Ellie’s Friends)…. Breast Cancer Care finds that this information can be patchy depending upon which hospital you’re seen at, so are looking to create (well, update) their list that can be easily circulated.
Week 3: Counselling and Lingerie/Prosthetics
In the third week we got the opportunity to talk about the things that worry us/make us anxious (it’s helpful to hear you’re not alone in your fears!), including managing expectations of other people, recurrence, having a short fuse, etc. We talked through how normal most of these are, some ways of managing anxiety, including the 5-5-5(-5) breathing technique.
We then had the super-enthusiastic Geraldine Hurd, from Betty and Belle in Altrincham, a lingerie designer for 20 years, who went to volunteer for Macmillan and discovered the dire state of post-surgery bras and swimwear. She set up the shop 11-12 years ago, and people travel from all over the country for fittings as they “specialise in fitting women who are traditionally difficult to fit”. There’s definitely a massive range of products out there, and they’re not all granny bras!
Week 4: Fitness and Relaxation
Today, we met Claire from Stockport’s PARiS scheme (which I have engaged with, but post-radiotherapy fatigue, and decluttering have taken precedence, but I can reboot!), did a few chair based exercises with elasticated stretches, and talked through the possibilities – and I was not the only one to feel like we used to be super-fit, and now have to start again (and I’d just been doing that pre-diagnosis) and there’s a real danger of over-stretching – but that’s the point of the scheme.
We then had Colette from Beechwood Cancer Care, which I’ve not engaged with (been to Maggie’s, which sounds similar), who gave us a guided visualisation (something that, along with mindfulness, I still feel pretty rubbish at), talking about ways to manage anxiety, and also the things that we can do at Beechwood.
Apparently what is done at each of these courses is different, partly depending upon availability of experts.
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.