[CANCER] It’s #Scanxiety Time Again #BreastCancer

I’m going to have to get used to this, as this will be a regular thing, every 3-6 months depending upon how often the oncologist thinks he needs to take a look at my internal workings! This scan feels SUPER HUGE as it will determine whether my first line of treatment has worked – has the tumour on my spine disappeared (there will always be scarring) with the radiotherapy and the chemotherapy, and can we keep it under control with the ongoing treatment (next infusion Monday; and swapping Exemestane to evenings seems to have improved my sleep considerably – the knees are creaking a whole lot more though)?

Mentally I am feeling very battered and exhausted (as well as physically, but it’s the mental that is harder to manage), so my friend Beth came to stay with me (and is currently working on one of my jigsaws) to help ‘Keep Calm and Carry On’. I’m on a writing retreat with work next week, so that will keep me busy, and then results come in on 15th (hopefully they won’t be late!). So yesterday, I caught up with emails and worked on a form in the morning, then we headed in for the scan:

Back through the paperwork (again), and then it was ensuring that all metal was off, and into the ‘smartie tube’ or ‘toilet roll holder’ of an MRI scanner. It’s 15 years old (I was told), they make them a little bigger these days, and I think the music actually works in some of the others. Anyway, I hummed to myself and thought about some of the stuff I’m writing to keep myself occupied – felt longer than the half-hour they said it would be, and Beth said that I was gone for over an hour! Always a relief to be ‘released from the tube’, though despite the air conditioning, my arms stick to the side, so always fun to be pulled out.. and the relief on my face always a picture!

Amazing how exhausting lying still in the machine is – must be all the adrenaline pumping around my body! So we headed to the cinema (don’t think I’ve been since Greatest Showman in Dec 17?), the ‘new’ one near me … I like it – good seats (reclining), foot room, can buy hot drinks or wine and take into the cinema for Toy Story 4:


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Cinema time … #busylivingwithmets. If ever early enough to get front row = footrests!

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We enjoyed that, included a few actual LOL moments, before heading to Pizza Hut, where Beth has discovered she can eat there despite her multiple allergies – having not had pizza for about 30 years!


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Look how excited Beth is – wheat, egg & dairy free pizza! And the film was good … #busylivingwithmets

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By this point was totally shattered, so it was off to bed… very weird dreams last night. Think am rattled by waiting for scan results, the fact that 4 people in my age group have died this week from secondary breast cancer (which I have), and something that I thought was sorted at work doesn’t seem to be, requiring further conversations.


[CANCER] Undergoing a full body scan for Spinal Metastatic Breast Cancer

At the base of my post the other day, I said that I will definitely be having stereotactic radiotherapy, assuming that a full body scan confirms the size of my tumour, and that there are non anywhere else (they have done a lot of scans, so I don’t think they’ll be expecting to find anything new) …. this is essentially a baseline scan, and then I think will be repeated around every 3 months, although they said could be spread out more if periods of stability are good (so previously, I was told NED (no evidence of disease), but people with secondaries seem to say NEAD (no evidence of active disease)).

I’ve had a few MRI scans, so I thought I was prepared for this one, even though I knew it would be a lot longer than previous ones (an hour or so was the information given). So I had clothes with no metal, my earrings were out, easy kick off shoes, etc. :


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Going in for an hour long scan. Just time for #waitingroomfeet

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Very nice team, who called me in at 6.10pm (my appointment time). We quickly went through the paperwork (no risk of death on this form!), put my items in the locker, and I think was getting onto the machine not long after, I’d say 6.25pm latest. I hadn’t really registered that I would be strapped in to this extent (this isn’t me, but this is similar – my head was the other way up, my knees and below I think were free, and I had a lovely mirror over my face so I could see my mouth/nose, and down my body).

The ear plugs went in, the headphones on with some 70s disco (I was offered a choice, and just asked for something poppy!), and in I went. I spent the next 60-80 minutes been shunted backwards and forwards, with various beeps and bangs surrounding me, and frequently having to follow the instruction “breath in, breath out, and hold…”. Probably around halfway through my shoulder started to hurt, and the whole process tried my patience quite somewhat… ended up with tears sliding out of my eyes with about 10-15 minutes going (I was told I should have pressed the buzzer, but to be honest, just wanted it completed, but maybe next time I’ll ask for a halftime break! This was my face afterwards… (the time as I left the room was 7.50pm). I don’t know if it was the stress, the reality that this is now my life, or too much time to think (been keeping myself busy and distracted with work, friends and house stuff!

To be honest, it’s a small price to pay for keeping the cancer at bay, but will be thinking what can do to make the process easier next time – think I need talk radio – I love Kate Bottley (and her approach to life), so maybe Radio 2: Good Morning Sunday will help, or maybe some of those Audible books I’ve not let listened to! Terrible night’s sleep afterwards, but made it to Yogalates this morning (stretch out those old age areas of my body – knees, shoulder, back), and then into work for some useful meetings!


[CANCER] Thinking in Metaphors … and Occupational Health

The other day I read Illness as Metaphor by Susan Sontag, and was interested at how the idea of things ‘being a cancer on society’, etc is a relatively new thing, and surrounds the fact that there is still so much we don’t understand about it … and that in the past tuberculosis held largely the same place in ‘fear’. At the time of writing ‘Illness as Metaphor’ (late 1970s) for most people, ‘cancer=death’, whilst 10 years later as she wrote AIDS and its Metaphors, cancer (which she had) had moved on and was much more of a chronic condition – and AIDS had become the thing feared above all things. I’ve still to make my notes, but a good recommendation from someone, that was!

Illness As Metaphor; And, Aids And Its MetaphorsIllness As Metaphor; And, Aids And Its Metaphors by Susan Sontag
My rating: 4 of 5 stars

This was quite hard work to read, as most philosophically inspired texts can be – as it’s encouraging you to think differently. The book includes two papers by Sontag – one written in the late 1970s as a response to the cancer she has been diagnosed with, and another in the late 1980s as a response to the AIDS crisis. I can see where some of the comments I get about cancer come from now – and there’s also insights into perceptions of venereal diseases (which I’ve just written a paper on), and the current focus on diet and self management.

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Metaphor or Analogy?

An analogy comes from a widely circulated paper – good for friends and family to read to understand – and good for thrivers to read to understand the process post primary cancer – we don’t bounce back to ‘how we were before’, however ‘well we look’ (you’re more likely to see us on carefully managed good days):

Imagine a roller-coaster. Some of you will find this an exciting and thrilling image: others of you – like me – will find it terrifying and beyond belief that anyone in their right mind would willingly subject themselves to the torment of being transported at high speed and with great discomfort in this manner. However, I have chosen this image to represent the process of the diagnosis and treatment of cancer. On a rollercoaster, you will be strapped in and sent of into the terror, knowing that there is nothing you can do about it until you emerge, wobbly and battered at the other end. You manage by getting you head down and dealing with it as best you can at the time. It is only afterwards, when you are on solid ground again, that you can look back with amazement and view what you have experienced and marvel at your courage. Download PDF from Dr Peter Harvey

I’ve been thinking about how cancer has made me feel, dealing with the uncertainty, the lack of control, the fatigue and had three comparisons that come to mind (probably think of more once press publish!):

  • For the ‘One Word’ event at the Christie, I picked ‘unsettling‘ as my word, and illustrated it with me hanging on the end of a whirlpool, not sure when I’m going to get caught (by the final straw?) and flung back into the chaos … and my finger-tips are getting tired!
  • Elastic Band – another explanation I’ve given is that over the past 17 months, I have been stretched, and stretched, and stretched (physically and mentally), and now the elastic is overstretched and struggling to get back into shape.
  • On Friday I was having a chat with my cleaner (life-saver, best £ I spent even before I got ill) and said that at the moment it feels a bit like when you’re trying to get out of the surf and can see the beach, but you keep getting knocked over by another wave … and can feel your energy draining as you try to get to dry land… and start to wonder if you’ll actually get there!

Occupational Health

So, now that the official hospital treatment is over (though of course we have tomorrow’s scan results to come on spinal biopsy and liver shadows), over the summer I went to Moving Forward with Breast Cancer Care, and I’m currently doing Where Now with Maggies. Also last summer, I went to see Occupational Health, and went for another check in with them last week. Thankfully occupational health seem to be pretty holistic in their approach to what is needed to give me the best chance of returning to work, and making a decent contribution to work.

Those who’ve never been to see Occupational Health, they should be there on your behalf, so I was told before I went to the first visit to be clear about what I’d managed whilst I’ve been on treatment, the things that worry me, the kind of things I thought I was capable of … I’ve not had cancer before, whereas they will have seen loads of us… so I wanted their advice, as typically, I would try to rush back in (although I was aware that I’ve had post-viral chronic fatigue twice in the past, so not surprised the the fatigue is still hanging on now: at Where Now? last week someone asked how long to expect post-cancer fatigue to last, and someone said 5-10 years, which is possible, although 2ish years is very common – your whole body is rebuilding itself, and once the treatment is over, is when your brain starts to move beyond ‘right, next appointment’!

I had returned to teaching one afternoon a week last term (and a late one, because mornings are a real challenge), and otherwise largely working at home (as the commute, although not extensive, has a real impact still – and no, I’m not back on my bike yet – I’ve been given ‘licence to search for a parking place’), on the more flexible aspects of work – research, admin, marking, distance supervision. That worked pretty well last term, and it was a surprise when I got the bad news about more scans to realise that I had rolled back in energy levels, I hadn’t realised they’d improved that much actually. I also managed to get my planned journal article submitted before Christmas… weirdly though I have less time, I become much more ‘I have to do this now’, because there’s not a second chance – and all-nighters are a thing of the past!

Now, however, am a person of very little energy – as per my analogies above, as the process of waiting – who knew waiting was going to be such a big part of cancer! This term I was going to be teaching Masters 2 days a week, and continue with my other class – but the scanxiety, the waiting, the constancy of appointments has meant that everyone has agreed it’s better that I keep going with the work that I can do as/when without too much ‘have to be somewhere’ (and gives them a chance to make sure the classes are covered), and I’ll still have much marking, distance supervision, plus I’ll also be working on a research bid, and an auto-ethnography of having cancer in a digital age – which thankfully starts with reading other people’s articles (although a bit of a shock when the first one you find, you look up the author, and they died about 5 years after the paper).

Occupational Health is pretty happy with the arrangements I have at the moment, as essentially the ‘being present’ teaching pressure doesn’t come in til September now, but they stressed they want me to aim not to do more than 37 hours, so….!! Also went to the gym this morning, and Vinny said that I usually look like I’ve pushed myself to the limit, but as my back’s a bit gippy still, and I wanted to get some bike riding in for #TeamYouMeBigC for #TRIJanuary – just 5k on the bike, walk to/from gym, and a few no-weight weights *I keep most of that to Strava:

So, now, it’s all just about waiting for the results in the morning… I think I will shamelessly take a sleeping tablet tonight!

Photo by Ruslan Valeev on Unsplash


[CANCER] Semi-Phew: 90% Good Test Results

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‘.

More Scans…

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…

Going Nuclear…

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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It’s #waitroomfeet time again – waiting for nuclear ?? infusion with @worthyontheweb

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Results Day…

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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Out for some fresh air and distraction whilst wait for phone call with @suzannestolberg #scanxiety

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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.

What Now?

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:



[CANCER] A Series of Appointments: More Scanxiety with Spinal Scans #BreastCancer #YouMeBigC

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.


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It’s #waitingroomfeet time again … #breastcancer #MRIResults

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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!

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!)

CT Scan

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:


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Despite #scanxiety I seem to be sleeping. A combination of #audible and these things maybe?!

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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.

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: