It’s been a long few weeks – and it’s not quite over yet! Yesterday I struggled to get out of bed – combination of fatigue, scanxiety, emotional exhaustion and a cold (first one since before diagnosis, because I’ve been staying out of people’s way!), although I did make it to Inspire Church’s Beer & Carols, and onto Life Church’s carol service, although the opening cheerful welcome, and first carol ‘Joy to the World’ just made me realise how unjoyful I was feeling and I spent most of the service letting several weeks worth of tears go!
Something’s Not Right?
In January, I was recalled, after a refresh look at some scans taken a couple of months earlier – as there seemed to be something on my lung. That was investigated, and came up clear, but revealed something ‘of concern’ on my spine. That was MRI’d, and was deemed to be a hemangioma (benign lump of cells). Another MRI was taken 3 months later (so still in the middle of treatment), and nothing had changed. MDT decided I should have another scan 6 months later ‘just to be thorough’. That came through for 24 October, and waiting for the results in ‘one word’ I described as ‘unsettling‘.
On November 5, I saw my surgeon – MRI results weren’t back, but I had a lump on the right breast, so he checked that out – nothing to worry about there (phew), but on the way out I had a call from the Ovarian Suppression Clinic to say they thought my drugs wouldn’t be working – so more blood tests there (and drugs are, so phew for that). When the MRI came back the following week, it appeared that whatever is on my back had changed shape, so I was sent for a CT scan (with contrast – so cannula – when you’ve got my veins, you don’t want that) for more investigation, and the results from that confirmed that the lump had shrunk – which you would think was good news – but this meant it had potentially responded to one of the cancer treatments – which caused concern that it was therefore a cancerous lump (metastatic, stage 4, incurable)… it also highlighted 2 shadows on my liver which also need investigation. It’s good to have a team so on top of this, but scanxiety is exhausting…
I was then sent for a nuclear bone scan last Thursday – I’d forgotten what a long process it was. Cannulation first, then a quick chat with BCN, then nuclear infusion, then 3 hours for that to embed itself into the bones, then a 30-45 minute scan (and then I went out for dinner afterwards):
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I have a lovely team – they pushed my scans through for today’s MDT (I thought I was going to be phoned with results Christmas Eve … they don’t like phoning, but as I’m going to be at my parents, I’d rather know, and I didn’t want to wait any longer than I had to…)… and I was keeping myself occupied (been working on my journal article half the weekend), with lots of cheerful messages from friends, and today headed out for a walk with Suzanne who has cheered me on the past 15 months:
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Just as we were nearing the carpark, that ‘No Caller ID’ came up on the phone (99%) of the time it’s the hospital, and the lovely Katie was on the line, saying it’s good news… there is no evidence of disease in the bones, so they are about 90% happy, although they want to do a biopsy on the spine to confirm what is actually there and that it’s not a problem, and I still need my liver MRI (should have had it by tomorrow, but the NHS is struggling with enough slots). Apparently the ‘lump’ is on T10 on the spine (just below bra line), and the option of a biopsy needs to be discussed with radiologist to determine if it’s possible. I said ‘can I relax a bit now then?’, and she said yes – we still need to check those other things out, but the bone scan is not showing any signs of cancer – anywhere…
After looking at Suzanne in disbelief – news not really going in, I posted on some social media, called my mum, let work know, went to Helen’s house for hot choc (and a chocolate roll with ‘much joy’ on it), went to Tesco for a pizza and some cold meds, then sat on the sofa reading the marvellous replies (keeping record of one set for myself) and trying to get up the energy to go to bed.
Mostly exhausted, relieved, a bit unbelieving, but not quite there yet! The 90% figure does cause some anxiety … when I first went to the GP, I was told 90% of the time it’s not cancer, when my results first came back as cancerous, I was told 90% of people with my diagnosis don’t need radiotherapy. The oncologist also said at the end of chemo/rads, that I’d had everything chucked at me, to try and live my life as if the cancer has gone and isn’t coming back, and that if it does – or it spreads – (about 20% does, I think), we’ll deal with it then. Try hard to hold onto that, but, well, I’m only human and being shoved into the waves/surf of appointments, tests, scanxiety is EXHAUSTING (say that in a Craig Revel-Hallwood voice)..
So, I’m waiting for a date (post-Christmas) for the urgent MRI on the liver, I’ll see the surgeon for official feedback post Christmas, and potentially that biopsy, I have an appointment with the oncologist (booked months ago) on 7th January. I’m also seeing the counsellor at the Christie tomorrow, where I also need to have another blood test done for the ovarian suppression unit (just one vial this time, and they seem to be quite good at using the tiny vein in the back of my hand – rather than poking at my arm and getting nothing but holes!)….
So, your prayers, support, cheering on, etc. are appreciated, as I continue to try and find a way to juggle ongoing issues with trying to get on with life!
But for now – happy Christmas, here’s to 2019 and:
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.