So, here we are, scan results…
And we waited #waitingroomfeet:
*only about 45 minutes late.
Scan Results: #NEAD #ClearStillFear
So there was a lot of confusion at the beginning of the appointment, as my oncologist’s registrar came in to see me and talked through a range of smaller things (all whilst standing, please sit :-)), and then asked if there was anything else – and I said I was there for my scan results! He then disappeared for a while whilst my heart was in my mouth thinking they’d not been done (which would mean coming back next week), but I’d seen one of the BCN’s who had hugged me on the way in and when I said I was en route to get scan results said ‘you’ll be fine’ – as she would have been at MDT that seemed good!
He then came back and said that I didn’t have cancer in my spine. The way he said it, both Suzanne and I looked at him in shock, and I said ‘so, I’ve never had stage IV cancer on my spine’ … after a few confusing back and forth we established that he meant that I had had a tumour on my spine, but that the treatment had successfully cleared that – and that there is Schmorl Node but they are not worried about this. When he brought in the letter/report for me to look at when I’d said I was supposed to receive all letters but hadn’t had any for ages, I saw ‘no evidence of metastatic disease Other than focus on T11 as described’ – this led to more questions. Does that mean rest of spine clear, except for T11 (that T11 tumour hadn’t grown), or… eventually it made sense that ‘signal change’ on T11 referred to scar tissue – so effectively ‘complete pathological response’.
“NEAD is what all stage IV patients strive for. It is the best-case scenario after being diagnosed metastatic.” Christine Hodgdon
(The term ‘remission’ used to be used, but NEAD (sometimes NED, but for Stage IV definitely includes the A) = No Evidence of Active Disease is now the preferred term – so the cancer is probably working away somewhere, but it can’t be seen on any scans so there’s nothing to treat).
Is it all over now?
Nope. This simply means that we’ve had the best case scenario for this tumour – and the cancer may stay away for many years with the ongoing treatment (Herceptin/Perjeta, Denosumab, Zoladex, Exemestane), or it may pop up somewhere else, which could require further harsh treatment, or lead to a rapid decline (I see this happening in the Facebook groups I’m in, also these thoughts from Dorothy Devine).
I, therefore, have another scan (CT this time – I did ask about that hideous scan at the Christie and seems that might have been a PET scan, and not required all the time) in 3 months…. Stage IV cancer patients basically live in 3-6 month blocks in between scans (although of course we need to yell if we spot anything else – ABCDiagnosis infographics on ‘red flags’ to look out for).
“When I was first diagnosed with my secondary breast cancer, my oncologist said that the disease was “treatable but not curable” and those words ring regularly in my head…. We die when there are no more treatment options left to keep the cancer in it’s box” Jo Taylor
Survivors say: ‘The fear never really goes away, you just learn to live with it”, and I’d like to reach “I have learned to be much more accepting of my limitations and much kinder and forgiving of myself.”
For now, however, the mortgage needs to be paid, so continuing with work and working with various members of faculty/department to make the work manageable so I can continue with (at least aspects of) it … been very good so far.
I’ve got surgery in September or October, which will require an 8 week recovery. Until that point think my brain will continue running overtime – then maybe it will start to ‘feel real’ that this has/is happening and I will find a bit of mental space to deal with the emotional headf**k cancer causes!
Since I was told that my breast cancer had spread to my spine in January, it’s been a bit of a whirlwind of scans (including the horrible 1 hour+ one) and treatments, including stereotactic radiotherapy, chemotherapy, and now onto targeted therapies and hormonal treatments – all of which continue to have physical side effects… (and the radiotherapy gave a 20% lifetime chance of fracturing my back)
The fatigue is still the most punishing thing associated with the cancer. So far as I can see, all of us with Stage IV cancer are seeking to ‘make the most out of life‘, but that is exhausting in it’s own right. Days are short, I often share the best of the day on social media (though I actively try and share the more difficult bits too – but often too tired to manage those bits). I was thinking, after spending time with 2 sets of friends at the weekend (both followed by early to bed), there’s lots of other friends I want to see, other things I want to do – and my brain defaults to ‘oh, I’ll catch up with it at x point’ – and now that doesn’t happen – either I need the mental rest, or I’m asleep or…
So there’s a whole load of learning what is managing… and just because you see me doing x, doesn’t mean I’m capable of Y. I was thinking as I was driving home on Saturday – thought about popping into a shop ‘whilst I’m out’, and realised that all I wanted to do was get home, put my PJs on, and watch TV/read a book – anything else on my ‘to-do-list’ needed to roll over… and often things that seem ridiculously small are just ‘too much’… I’ve got a week’s work emails to catch up on, just about got through my personal emails, I’m behind on Facebook messages, etc… If you’re up for a catchup – bearing in mind am trying to work (just working from home) – need to get out for fresh air, etc. every day so short catchups work really well for that… typically if I do something bigger I have to chill the day before, and day-2 after… and emotionally I’m up/down like a yo-yo!
I do feel a bit overwhelmed at some of the things in my to-do list, as I’ve found I’ve managed to keep being productive by being very focused on certain tasks within my energy, and trying to make sure space is one that allows me to work without too much distraction – (all being well) my big deadline is next Monday evening for a draft of my paper so everything else will have to sit to one side.
Meantime, eyelashes have nearly all fallen out = itchy, gunky eyes. Stomach still works overtime. Bones ache. Knees creak. Feet burn. Not sure what body temperature doing… etc etc
I’m taking 2 August-2 September as leave so looking forward to that – and seeing people at Greenbelt!
Keeping My Mind Occupied
Over the past few days, as I’ve been waiting for my scan results, I’ve been reading/watching some bits and bobs, as my brain scatters all over the place, as well as trying to concentrate on the university writing retreat (useful conversations), team meeting, and keeping head occupied over the weekend spending time with friends on gentle strolls.
If you get a chance to watch Songs of Praise: Christianity and Cancer (a repeat from last year), it’s totally worth it (on BBC iPlayer for another 28 days).
This paper also came around. There’s always a wonder as to why cancer gets such ‘special treatment’, and aren’t we all going to die someday, maybe we’ll all get run over by a bus, etc. Thought this analogy worked really well:
So imagine this: You wake up everyday and there’s this bomb. It’s a bit heavy, it makes you tired, but overall you can function with this bomb. It’s not the fact that you have to carry it that makes it so difficult; it’s the the fact that it’s A BOMB. Bombs make you uncomfortable. Bombs make other people uncomfortable. Sometimes you wear a baggy sweatshirt so you can cover the bomb. But everyone who knows you still knows it’s there. Other times you jump on your bicycle and toodle around the neighborhood and that helps you forget about the bomb. It also makes people wonder how you are able to bicycle with a bomb. (That sounds unsafe.)
As a historian, I was always trained to cross-reference content to try and extract the evidence base behind claims, and in looking at propaganda (and now digital) – was in fact due to contribute to a session on fake news just after my cancer diagnosis. Related to ‘false cures’ and ‘big pharma’ arguments, etc. I have talked to my BCN about this, and she is concerned that even those things that we take, such as vitamins (and oncologist has said it doesn’t interfere with the treatments he’s given), all cost money, and she worries that we waste money (at a time when we can be vulnerable/desperate for anything to help) on things that won’t help – and could never be expected to help:
Online, dubious claims about cancer are rife, from outright “cures” to assertions of a conspiracy to suppress “the truth” about it. In 2016, more than half of the 20 most shared cancer articles on Facebook consisted of medically discredited claims. And this goes far beyond Facebook – the Wall Street Journal recently revealed that YouTube was hosting accounts with thousands of subscribers that promoted bogus cancer treatments. O’Sullivan’s scepticism gave her some immunity to the lure of empty promises. But having lost her mother to breast cancer, “fear left me more vulnerable to pseudoscience than I would care to admit”, she says.
Kate Bowler: Everything Happens for a Reason:
A theology professor diagnosed with stage IV cancer talks about the notion that we all buy into the idea that our lives should be ‘blessed’ if we live good lives, and how her husband, when told, ‘everything happens for a reason’ responded to people with ‘please, tell me what it is’.
I read Kate’s book earlier this year:
This was a really resonant book for me to read at the moment, also preparing for Stage IV cancer treatment, and considering the impact on my life/faith, etc. Apparently I made 65 highlights on this book… and I think I’ve made them public… one of them was about friends coming round with armfuls of Kale (lol!)
Also useful more widely for tackling the prosperity gospel, and encouraging to see that overall identity not lost to cancer!
Deanna A Thompson: The Virtual Body of Christ
And I’m currently reading this book, which both personally (living with Stage IV cancer) and professionally (challenging the notion that online is ‘something lesser’ and ‘virtual’ especially within Christianity, and actually Christianity has always been ‘virtual’ (scattered geographically/part of a bigger picture than the local church/we’re left with the Holy Spirit) – and that we should care for those who are the weakest.
Obviously I am not spending all my time in ‘cancerland’, but these are some of the things that have helped me get me through to today’s scan results.