I thought once radiotherapy finished, it would feel like I was off the appointment treadmill, but they just seem to keep coming. The regular ones are every 28 days at the GP for a Zoladex injection (and any other concerns), intermittent ones with the surgeon, oncologist, ovarian suppression, and currently ongoing with counsellor and exercise rehab!
Is that another lump?
Last Monday (5th November), I went to the hospital to get results from an MRI Scan (from 24th October, which should have been discussed at the MDT meeting earlier that day). The results hadn’t yet come in – they would have rung me to say not to come in, but I’d left a message to make them aware that I had a small spot/lump in my right breast, which I was trying to hold onto the ‘wait 2 weeks to see if it goes away’ we’re advised to do, but it was concerning me (OK, I noticed it on a Sunday, and by Friday I was pretty well convinced I had breast cancer in the other side, despite the fact I’d had a clear mammogram only a few weeks before). They checked that out and said it was ‘just an infection’ – if the infection spread to get antibiotics, and if it keeps recurring, it could be cut out. I was then asked to come back the next week for results – one other bonus was running into a friend in the waiting room.
View this post on Instagram
In the Menopause or Not?
As I was leaving the hospital, I read an email from the Ovarian Suppression Clinic, saying that the ‘more sensitive bloods’ had come back from Wythenshawe hospital (4 weeks after the test). I rang the specialist, and she said that the tests showed that my oestradiol levels were still too high, and therefore I was not in the menopause, which means the medication that I was on (exemestane) wouldn’t be working, and I would need to return to tamoxifen (whilst continuing with the zoladex). I was quite confused, so she said, to double check, head into the Christie the next morning for another blood test (the results are returned in 2 stages, one that day, and the more sensitive one 4 weeks later). So, after going to the GP for zoladex, I headed to the Christie – where it was lovely to bump into another friend who was waiting for a scan! That afternoon I got a phone call to say that there was ‘unexpected results’, and that my levels now appear to be low enough, I AM in the menopause, so to continue on the exemastane, and we’ll do another blood test just before Christmas to double-check.
MRI Scan Results
Tuesday morning, having already had a chat with my research mentor via Skype, I merrily bobbed back into the breast clinic to see the surgeon (yes, on my own). This was the third in a series of MRI scans designed to investigate something on my spine that had shown up in the background of a lung scan … as they say, once they start scanning you, they find all kinds of things that you could happily live in ignorance of for years – and I mean happily – because Scanxiety is the worst! Was sent some more tips on managing scanxiety this morning too!
If anyone wonders how I’m dealing with #Scanxiety. Yesterday I cried, today, I’ve been trying to get some things sorted #controlfreak … tomorrow – who knows! Friday = counselling, swimming and going out for dinner with good friends! 🙂
— Dr Bex Lewis (@drbexl) November 14, 2018
In the previous two scans (three months apart), nothing had moved, so they had decided that it was a harmless hemangioma, but wanted to do one more (after six months) ‘just to be thorough’. So I thought this was going to be a straightforward appointment, in which I’d be told to go away, and carry on getting on with my life as best as possible.
When the chairs came out, I looked at them and thought ‘OK, what’s this’, and it appears that the shape of whatever is on my back has changed ‘a bit’. It’s still entirely possible that it’s a hemangioma, that it’s something to do with the drugs I’m on affecting bits of my body, but there is also a chance that that cancer has spread. The surgeon said ‘please don’t let your brain go straight there’, but yeah, I still burst into tears – logic and emotion don’t really go hand in hand! After a bit more discussion, and several more tissues, I went off to find the company of a friend to decompress a little (see her blog here), and was comforted by thoughts and prayers from friends on Facebook (they do matter!)
So, a request for an ‘urgent’ full body CT scan within the next 2 weeks has gone into the system. The ‘fun’ is that now my port has been taken out, and this CT scan will require cannulation (and I think is the one you have to drink a tonne of water anyway, and feels like you’ve wet yourself once you’re in it). Bearing in mind that the last time I had a CT scan, they didn’t manage to get the cannula in, and I did it just with the liquid that I’d ingested earlier that day (so the images are not as clear), and I find blood tests part of the most stressful part of treatment – my stress levelsare going to be building up before this event (so I might be giving a shout out for someone to accompany me to it, once I know the date!), and I’ll need to go to the chemo ward to have it inserted – as they have more experience than anyone else in flaky veins. And yes, they only have one arm to work with, as my left arm shouldn’t be used for injections/blood pressure, etc. if possible (there’s disputed medical opinion on this, with the Christie saying that after 12 months, although they’d avoid it where possible, they would use it). The results should be discussed at the MDT meeting on Monday 3rd December, and I should get the results on the morning on 4th December (I’ve got a friend coming with me to that!).
If it’s not clear from the scans, then they’ll do a spine biopsy to see what’s going on … by which time my stress levels will probably be off the roof, but trying to hold onto the sage advice I was given on diagnosis, deal with one appointment and one treatment at a time! Surgeon (Mr D) apologised for causing more anxiety, but said, obviously we have to check this out, and not wait 3 months for another MRI.
And let’s hope they don’t look at me like this *stock photo – wrong on so many levels!
What’s going through my mind?
Well, I feel very sick most of the time, and at times of course I’m convinced that it’s spread to my spine (and of course psychosomatic – my back hurts – well it hurt from the medication anyway, plus I’ve sat a lot this week!). The surgeon can’t promise that it isn’t, though I think by his demeanour he’s not expecting it to be that .. but the conversation going round my head ALL THE TIME! Thankful for people checking in, though not necessarily managing to respond to everything, as seeking chunks of concentration time, time out, etc. Got counselling, swimming and a meal out to look forward to tomorrow, and my mum’s coming up for a couple of days soon 🙂
Sleep weirdly seems to be working – maybe down to these (and sheer exhaustion), though a bit of Stephen Fry reading Harry Potter on Audible doesn’t go amiss:
View this post on Instagram
I had a ‘welfare Skype’ with my HoD already arranged shortly after my appointment, and he suggested that I didn’t try to come into work this week even for the one day that I usually go into teach at the moment… (although I’m still working at home – keeps my mind busy, but not having to worry too much about what other people want/need) – so have a bit of time to process.
Working on a paper on WW2 VD posters (and recent @PHE_uk STI campaign), massive restructure, got 16 sections, and need to come in at 10-12k words (currently around 15k). Done drafts of 2 more sections tonight! Bed #amwriting #research #academiclife #keepingmindbusy
— Dr Bex Lewis (@drbexl) November 15, 2018
I’m anticipating going in for the next couple of weeks (I’ll talk to HoD on Monday), and then hopefully it will be good news, no? No idea how I’ll deal with it if not good news, but let’s keep hoping and praying that I don’t have to deal with that (obviously I have friends who have had, or are having, to deal with this, and most are #busylivingwithmets, not sitting waiting to die!). Oh, and thinking about death and grief, please do listen to the award-winning #YouMeBigC podcasts if you haven’t already – the new one yesterday was on ‘Grief‘ – here’s a snippet:
Right, important stuff alert. Last week I recorded a pod ‘About the Loss’ with the inspirational @bowelbabe, @GIRLSTOLELONDON, @SimonThomasSky and @griefencounter. It’s out today so please, please download it from @BBCSounds or @bbc5live. Here’s a taster…..#YouMeBigC pic.twitter.com/qk7rLP2I1u
— Steve Bland (@blandsteve) November 14, 2018
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.