So, the other week I was getting my biopsy sorted, and we thought we knew where we were heading for next steps for cancer treatment. Cancer, however, doesn’t seem to like being predictable – and having gone from NEAD (No Evidence of Active Disease) and clear scans, to ‘a mass’ somewhere around my sternum (which I’ve not yet been able to visualise because of the fun of being able to get in/out of hospital in times of COVID/whether the screens are working.
The Puffy Face
I had a lovely day on Saturday – I’d made chocolate mousse, and enjoyed a walk with Andrew and Jane – I was asking them – did they think my face looked puffy (and how much of that might have been doing to having managed to get my hair cut on Friday)… but when I woke up on Sunday – could not mistake that the face (and quite a lot of body) is puffed and messed up (I’d had COVID tests because I thought I had a cold, so just thought it was congestion) … I rang the Christie emergency number – and they said I sounded wheezy, and maybe it was an allergic reaction to some of the painkillers, and next thing we know I’m in an ambulance en route to Stepping Hill Hospital (and when I look back at photos during the week, can see the puffiness growing).
Sunday: At the Hospital
We had a half-hour of chats and checks at the house before heading in on the ambulance – straight into ‘Cold ED’ (department is split into ‘cold’ (non-COVID) and ‘hot’ (suspected COVID-related). Lots of poking, prodding, questions, ‘how long since you noticed’, ‘what products have you changed’, ‘how does it feel’, etc… and then the intensive care team came down for more chats. I’ve not noticeably changed any products – aside from morphine/pregabalin for pain management – so these were the first suspicions…
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Stuck in here at present. Thought to be an allergy – then someone looked at the new tumour from CT scan which due results Weds – think tumour is pressing on a vein that usually drains everything … flipping awesome #IFHC. Am I stuck in overnight, I don’t know .. waiting someone who’s off doing some more checks …
They fairly soon decided that it wasn’t an allergy – so next decision was to wheel me down to CT (they had managed to get hold of my Christie CT scan, which I’d not yet had feedback from) as there was a suspicion that something was twisted or trapped. The hospital doesn’t use portacath – so had had the joy of a cannula put in at a weird angle – but meant got my scan with contrast and back to the bay – which was now getting noisier with new patients. More waiting – then they did come back with more news:
- The tumour that is growing in my lymph nodes (was mentioned the other week) is pressing on 3 major veins around my chest leading to problems breathing, and fluids unable to drain.
- There is also a blood clot in my jugular vein which also needs to be unblocked … with some mean bruising needles expected for next 6 months 🙁
So, they decided they were going to admit me (in just under 3 years of this rubbish, have managed to only spend only 1 night in post-mastectomy!)… lovely nurse wheeled me out to catch up with Andrew and Jane who had raided my cupboards for some overnight stuff (need to get that hospital bag pre-packed again). It was pretty much midnight til I got onto the ward, and they were still admitting others til around 2am. I’d been given late night steroids (dexamethasone – yes, the one that helps those with bad COVID breathing), so there wasn’t much chance of me getting any sleep, even if I could ever sleep on a ward (or a plane)!
Monday: Still at the Hospital
Well, it’s an early start for breakfast isn’t it … and the morning was mostly trying to ‘relax’, have some Facetimes, and some conversations with the medics. I had emailed my oncologist’s secretary and the oncology ward about 5am to say where I was, so they had a heads up on decision making! The original plan was to be sent to Wythenshawe to have stents put in to widen the veins up again, to let breath in/fluids out, but they decided that (positively), my veins are in good condition – it’s the tumour pressing from the lymph nodes that needs dealing with, so instead, will have some emergency radiotherapy. Many laughs on social media as to the quality of food /extra bland coming through (thought food was supposed to be part of the recovery process!). Very thankful also to be connected with a friend on Facebook whose dad is chaplain at the hospital, and that was a valuable visit:
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Thank you Hannah for arranging for your dad, Graham (chaplain) to come and see me. Excellent chat for an hour. Then medic arrived. Change of plan. No stent – none of my airways are fully closed, though we think have blood clot in neck (more common for cancer) – so instead continuing to monitor and treat with steroids and jabs. Dr C org radiotherapy for tomorrow pm. At least 2 more nights in hospital. 🙁 Still not clear when see my scans and have more convos with Dr C as don’t know if see him tomorrow – I think another email to his secretary to ask! #IFHC *And asked for knock out drugs for tonight!
I was desperate for sleep by Monday evening – but of course timing is not my own (all my drugs have been locked away in a cabinet, to be given at a time not down to me) – so was glad to be told morphine/zopiclone was on its way to me. Then there was a sudden last minute decision to move me to a new ward – I was quite grumpy about this as had to be repacked – and then when arrive, have to document everything you own (plus Andrew was bringing a few more bits for me) – the new ward was bigger, hotter, smelt of wee and I just was NOT FEELING IT! But anyway – I finally got my meds – and got SOME sleep – though blood pressure was taken around 6am, and was woken up 7.15am to get ready for ambulance to be taken to the Christie for the day!
Tuesday: Between the Hospitals
My appointment at the Christie was 9am, the ambulance turned up 10am to get me across – they are clearly all used to dealing with these changes of plans. Had a v nice companion for the day – and we settled in for a long day:
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We got taken to a day ward, parked up – offered food/drink (bit less beige!), and lots of conversations about what was going on, where had my CT scans got to re hormone receptors (no information yet), etc. Then I got wheeled off for a planning scan (rads staff are very calming – I guess it helps keep us calm/still) – much easier than the previous radiotherapy as just needed to lie flat – not with arms in weird angles. Then we’d arranged for me to speak to Dr C – so we tried to find a room with a working/connected computer – nope … but he did tell me that the hormone receptors have come back as triple negative – aggressive and hard to treat – having been triple positive with my last tumour…. this statement of course has knocked me for six even more than finding out that I’d gone from NEAD to a new tumour…
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Had planning scan. Waiting timings for 5 appts – first this afternoon we think. Seen Dr C briefly – we couldn’t get scans to work but basically is a mass behind sternum causing pain/pressure/swelling and sternum to crumble (I think). Will talk more to him next Weds but he said need to be off work next 6 weeks at least whilst we deal with this and plan next steps. But new tumour is triple negative – which means – I think he said abraxane chemo. Will be up to SHH dr how long stuck in hospital – main concern I think is moving around/breathing when live alone .. #IFHC – so tired. Trying not to overthink. Being looked after …
The new tumour is pressing on my sternum (causing it to crumble?) – there’s a huge amount of bruising and purple veins all over my stomach – the fluid retention is collecting in my scarring – it’s all deeply uncomfortable and scary … and definitely feels a very long way from the optimism I felt last year as treatment finished (all that talk of ‘think about retirement, what do you really want to do with the rest of your life’, etc. will do that… Dr C, however, said, that for the next week the important thing is to deal with the immediate problems, and I’ll have another appointment with him next Wednesday to talk about the implications for long-term (or not) possibilities, impact on health, work, finances, housing, etc. all mixed up in my head. I know people think that I share everything on social media – I very much do not – and it feels like moving to Manchester was where I could finally see some positive future settling down… carrying on with the trying to be grateful for all kinds of bits/pieces but my head is totally mashed … talking to my friends in similar situation – and how they try and hold onto things mentally when the cancer is always close by – either physically or mentally.
Dr C is sending off the biopsies that we have, plus having some more conversations – but at present it sounds like Abraxane will be the next treatment (Macmillan nurse said not as harsh as docetaxel, though still sounds like hair might finally go – might just play the crazy wig game this time!). I spent most of the afternoon napping in tears in a side room at the Christie, being looked after by lovely nurses/HCAs, before returning to the radiotherapy suite for the first treatment, then back to Stepping Hill for the night. More tears, chats with fellow patients/nurses, and raising the question of being able to get home so can sleep (was still wondering what was going on with my new bed… then got a call saying it was coming Thursday!)….
Wednesday: Hospitals and Home
Some more drugged sleep, and another early start for hospital ambulance (arrived earlier this time) – same HCA for company 🙂 Pretty fast service today – they apologised for delay in taking me into radiotherapy, but although I’d been sat there a while, they were actually 20 mins early! We then got to enjoy a bit of sunshine in the Christie garden whilst waiting for the ambulance back to SHH – even got back in time for lunch! Then started conversations with medics … and they agreed to let me go home (but had to sort out a lot of drugs to take home) – saying intelligent/independent enough to know to come back if breathing or fluid buildup gets worse… Lovely to get another visit from Graham the chaplain, before I was wheeled over to the Transport Hub and Andrew was able to pick me up and take me home! Love being back in my own home (have made it v nice, if I do say so myself):
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We quickly sorted out the unpacking – the toothpaste got a little lost en route (lol) – my neighbours stuck head over the gate to say pass over the wet washing so they could stick it in the tumble dryer (I don’t have one!) … and then I was able to crash into bed – took the meds – stuck Aladdin on (both versions one after the other) and was drifting in/out of sleep from around 7.30pm for around 12+ hours.
Thursday: New Bed
Andrew was back at the door early morning – we’d been promised bed delivery between 8-2 -I also knew I had a hospital appt in that time (with ambulance collecting me again), and a click and collect later in the afternoon (you make all these plans don’t you)… Post turned up – I finally get an official shielding letter as shielding looks like it’s over … but also get a delivery box! I did hear the bed setup guys arrive around 9.30am, but appear to have fallen asleep on the sofa for most of the morning – managing to shove a sandwich together just before the ambulance arrived!
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There’s a lot of waiting around for ambulances – normally there would be multiple people in each, but with COVID, they can only do one patient at a time. If appointment is 1pm, need to be ready 11am, then get wheeled to radiotherapy area (not allowed to walk distance of the Christie with current breathlessness), where also wait (and often is 45 min delay for 10 mins appt). Then get wheeled to transport area, where a call is put out for another ambulance, and sit and wait – anything up to 90 mins to be expected, though not been that bad so far. So my poor little car just sits there looking lonely 🙁
Andrew had disappeared by time I got home, so I crashed on the sofa before Jane turned up with my Click and Collect order – and we tried to make some order out of chaos of leftover food from last week, etc. Had a lovely platter delivery from Helen, so we had some of that, and worked out how to store some of it! Meantime, we had sheets out drying – and decided to go and check out the new bed:
Then we settled down to watch Marvellous, by which time it was time for a Facetime with my mum and into bed (before 9pm!)… my mum’s hoping to come and help out next week if this new lockdown doesn’t kybosh all those plans (cancer is flipping hard enough to deal with, without all the extra restrictions that COVID brings)…
Friday: Back in the Christie
Well, I guess I’ve gone back to the original idea of a blog as a bit of a diary, eh – sure you’re all hanging onto every word – but it sure does save me some energy trying to re-explain myself. Real combination of stress of wanting to talk to people, having very limited energy, worrying people will forget about you, trying to deal with the now, etc… I was due to have Zoom counselling today, but it overlapped with radiotherapy – which I also had this morning (thank goodness for aircon) – and 2 nice chatty ambulance drivers..
So today I got as far as good sleep, shower, hospital, fit note, brief chat to colleague re bid we were getting expression of interest in for today (cancer’s already taken enough, thanks), and blog post – now it’s crash out time, I think – though I need to check which meds I need to get GP to issue 🙂
Thanks to everyone for sitting alongside me, and low-pressure check-ins, practical and prayerful (or universe) support … it helps get through the day by day …
No treatment this weekend, 5/5 emergency radiotherapy on Monday, district nurses on Tuesday, oncologist on Wednesday – and we see what comes next. Been told to sign self off til 11th September for now… thankful that have 6 months 6 pay for now, but racing through it… though had already reduced working hours by 20% from September.. let’s see what comes next ‘try not to race ahead, Bex’!
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.