Honestly, having cancer is like having a full-time job (when you already have a full time job that you’re trying to keep engaged with!). In the past few weeks, I have seen the surgeon, the oncologist, the dentist, been to Maggies for psychological support, GP, radiotherapist, yesterday the ENT specialist, and today counselling… so plenty of #waitingroomfeet (and of course trying to keep my exercise classes going!).
Ongoing Side Effects
When I went through primary treatment, I truly thought that I would get through the treatment, and get on with things, pretty much as normal, but there are so many things still going on.
- The ENT specialist was to check out if there’s been any ongoing problems with my hearing/ears, etc. as I struggled with my hearing through chemotherapy. Feels OK now, but they wanted to check. They are happy that it’s back to normal – though they said could come back if further chemotherapy, or as it was particularly in my left ear – it could be my treated arm pulling.
- My eyelashes are back, but are very stubby … I look a bit like I’m crying a lot of the time.
- The surgery around (left side, including armpit) is very numb, and I don’t (quite) have a full range of movement, despite continuing my physio regularly.
- My joints creak – especially first thing in the morning *feels a bit like I’ve aged 20 years
- Peripheral neuropathy in fingers/toes, though think that may be fading.
- Ongoing fatigue … I never used to be much use in the mornings, but now the evenings can be a struggle too.
- Hot flushes (thankfully not too bad) arriving at random times of day/night.
- Bad skin, and stomach not always 100% happy either
- Random memory and concentration blips.
- Underlying anxiety and insomnia, and just generally feeling a bit out of things…
Some caused, and some controlled, by monthly hormonal injection, daily hormonal tablet and calcium/Vit D tablet, antidepressant, all on prescription, with Omega 3 Fish Oil, Probiotic, Vit B12, Evening Primrose Oil, and Glucosamine Sulphate, non-prescription.
So, we’ll see what the new round of treatment does to me, hoping will be gentle!
I was due to finish counselling at the Christie by Christmas, but the new diagnosis means that this has continued. Typically I’ve seen someone for an hour every 2-3 weeks, and we’ve worked largely to ‘compassion focused therapy’, seeking to untangle the thoughts that are in my head, fears about treatment/the future, learning to be kinder to myself, trying to fit life aims into a shorter time, tackling any feelings of guilt for letting people down, and all sorts of things. I definitely appear to have ‘made progress’ .. with a lot of help from those around me.
Today we talked about the ‘worry box technique‘, as I am concerned about the number of scans I’m going to be having (I may #blackhumour joke that I no longer have to worry about secondaries, but there’s always question of progression) – so suggestion is to find a set point to try and get worries out of the head, onto a piece of paper – then see which ones can be ‘problem solved’, and which are uncertainties that have to be lived with.
Researching Secondary Cancer
Compared to primary breast cancer, secondary breast cancer is quite underfunded:
It is the women & men dying of metastatic breast #cancer who are doing the most for women & men dying of #metastatic #breastcancer. That doesn’t seem quite right. A little help, people? #BusyLivingWithMets #dyingforacure #stage4needsmore #researchnotribbons
— Double Whammy (@double_whammied) February 1, 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; 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.