So, I said I was waiting for CT scan results to investigate something on my spine (which I’d already had an MRI for) … which 6/9 months ago they thought was a hemangioma (harmless collection of blood cells). As the GP this afternoon gave me extra sleeping tablets to help me sleep (writing this whilst I’m waiting for it to take effect, so hope I make sense), I think it’s fair to say that the results this morning weren’t what I wanted to hear …
Now the news I wanted…
When the surgeon/nurse make themselves comfortable, you know it’s not going to be straightforward. But I do really appreciate that they are gentle but straightforward in giving bad news (Mr D did jokingly ask me if my eyes are ever dry – and I said – you keep giving me news I don’t want to hear)… in this case they are saying it’s not bad news, but it’s not (yet) good news, and might not be good news. As you’ll see here, whilst he was giving my chest a proper poke around to make sure nothing concerning there, also complimented me on my lipstick (also trying to make me smile then too):
Got big hugs all round, with lovely BCN saying sorry to make me cry again, because I’m usually so smiley!
Anyway, the gist of the news, as I understand it, is that whatever is on my spine has changed shape – which if it was a hemangioma, would make it atypical (aka unlikely, although possible) – so it looks like it has responded to the treatment I’ve been having, which makes it a concern that it could be metastasised cancer (so Stage 4), although it could be some of the other treatments I’m having for e.g. ovarian suppression.
They said they are ‘more concerned now’ than they were before, so we need further tests (within 2 weeks, though that does mean results might not be back before Christmas) – both of which – horror – involve cannulation:
2) Another MRI on my liver which shows shadows (although they may have been there before, but not shown up because they couldn’t get the cannula in when I first had a CT scan so didn’t have the contrast) – and may also be nothing.
There could still be good news to come, but it doesn’t feel much like it at the moment. They were very clear that cancer in the bones is seen as very treatable (if not curable, whereas my whole treatment has been done with curative intent) – likely with current meds and possibly more targeted radiotherapy, other places is more problematic. As it says here:
Keep in mind that metastatic disease is NOT hopeless. Many people continue to live long, productive lives with breast cancer in this stage. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.
Check out the hashtag #busylivingwithmets, e.g.
PS the reality is that most Stage 4 cancer patients are NOT dying in hospices. They look like you and I. They are working, exercising, fundraising, being parents etc . They are #busylivingwithmets. They need more. They deserve more.
— Liz O’Riordan (@Liz_ORiordan) December 4, 2018
Keep Calm and Carry On?
It’s difficult to know quite what to do, but although I went under the duvet for a couple of hours, my parents have been here with me (they live in Suffolk), and fed me, took me for a walk, drove me to the GP, fed me again… and mostly I feel like getting on as usual, although maybe at a gentler pace, more time with friends (and lying on a beach wouldn’t go amiss – live in the wrong place for that though), carrying on with my exercise programme – otherwise I feel rather like I’ve written myself off already… and I want to see my students do well, and do this stuff:
Various panics in my brain about work, finances, and all sorts, but hopefully things will shake themselves out. I am overwhelmed (in a good way) by the support from friends, people at work, the NHS – and appreciate all prayers/concerns. Writing stuff in a blog makes it easy not to have to keep explaining myself… if people want to know, I try and direct them here.
I will be looking out for people to come to further appointments – you may get your hand squeezed, or I might cry all over you…
For now though:
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.