So, nearly another week in cancerland has passed… and I’m on hold to an app ‘Push Doctor‘ to talk to a GP about indigestion and sleeping tablets – I’m in position 5, and not moved yet in the 5 mins been on hold – but this is fine – I have a feedback loop, and might as well get updating this..
Once we knew that I was starting new treatment on Monday, my mum decided to stay, so she could give me a lift to the appointment (even though due to COVID we’re not allowed to take any visitors in). Saturday, decided to meet with my bubble family at Abney Hall (felt it would be quiet enough to properly socially distance) – and a short walk, and a lovely conversation was a real tonic:
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Saturday evening ended up with some quite challenging conversations about funerals, etc. thankful that I have so many friends who are vicars and unafraid to talk about all of this. I really do wish that at 18 we all did a basic will, and a basic funeral wish/plan – then it wouldn’t feel so pointed when have to do it with the knowledge that it may be needed! Think I want to exit to:
On the Sunday, quite overtired after all that emotion, so a lot of resting (for me), though my mum was still sorting out weeding my garden, getting some food prepped for this week – and we found a new bit of Reddish Vale to walk around (so glad I have that close by). District nurse had planned to call Monday, but decided to pop past, so had a nice chat with her too … they really are looking out for physical and psychological help they can give.
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Waiting to get into the #chemotherapy suite for first weekly #paclitaxel for #triplenegative #metastaticbreastcancer – 18 weeks initially, then we scan and see if it’s doing anything. Lots of #coronavirus precautions as ever. No visitors, obvs. Be here at least 3-4 hours once we get going … Thankful for #bluebadge spaces. Seeking to be #BusyLivingWithMets via @metupukorg
Comparatively early morning, heading to Stepping Hill Hospital – and the Laurel Suite – who I hadn’t seen since my last routine treatment a few weeks back, but had spoken to in knowing I was coming in for new treatment. I can’t say how many times I say thank you do Katie, one of my original BCNs for her suggestion that I stick with Laurel Suite for treatment – they’re part of the Christie, but a very small team (whereas Christie staff are ace, but can have quite a fast turnover, swapping specialisms).
- We rang from the car park, and then waited for a callback to say that the chair was ready for me (very strict in managing COVID risks!)
- The essential COVID questions, blood pressure, oxygen, weight, etc done at the beginning (another 3kg of fluid disappeared, so 10kg total)
- Assigned to the correct chair – knowing that COVID is going on for longer, plastic sheeting has been put between each chair, so they can all be used, rather than having to only use alternate chairs.
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Bloods have gone off, so hopefully treatment by around 1230. Long convos with the wonderful nurses here… so much happened last few weeks. Watching Lady Gaga star is born. Trying to get the hang of my #AirPods (any tips?) … got my #IncurableAdventurer T-shirt on which supports @metupukorg. #BusyLivingWithMets
- We chatted for probably close on an hour (all masked up) about what has changed over the past few weeks, the new treatment, anticipated side-effects, support available from Laurel Suite, Christie chemo hotline, district nurses and Macmillan nurses…
- Bloods were taken (port totally behaving itself now – maybe shrinking the tumour helped this too) – these take around an hour to be tested, and no treatment can commence until these are cleared. Thankfully came back after around 45 mins, and we were good to go.
- A large dose of steroids and antihistamines were given, and then we needed to wait half-hour for those to ‘hit the system’ – these are designed to manage potential reactions to the treatment. They said I’ll have slightly less steroids next Monday, and then unless there’s a particular reason for things, will stop them. I am still running down 2mg every morning from hospital admission til next Weds anyway… steroids make one ‘quite hyper’ and ‘pinged’… which is an interesting fight with the antihistamines!
- It was then time for the first of my weekly paclitaxel via infusion, which takes about an hour. I’ll have this for 18 weeks (which my maths takes me to the week before Christmas), then a scan to see if the drugs are having any effect. If this works (which is what we want, otherwise I’ve run through another treatment line), then we keep going.
- Unlike my previous chemotherapy treatments, I am not cold-capping, so am expecting to thin or lose my hair in around a couple of weeks, so the wigs are back out of the attic, and I’ll see which of my headcoverings I kept!
- Once the paclitaxel had finished, there was a 15 minute saline flush to clear the toxic drugs back through the system. I’d rung my mum with about 25 minutes to go – because I was tired and wanted to get home – and she was ready for me in the car park… as I arrived with my big pharmacy bag (and we’d also collected a bag of other prescription items earlier too – God bless the NHS!) for anticipated side effects!
Mostly crashed out on the sofa in the afternoon with Andrew’s wonderful new book – Faith, Hope and Mischief – exactly what I needed to make me feel some hope on an everyday level again. Managed some food and went to bed early, and called that a reasonably done day … although the heartburn was already kicking in!
Well there’s some steroid pinged eyes…. Thankful for the zopiclone/morphine – slept well (I’m guessing this is not a long-term solution, which is partly what I’m waiting to talk to GP about – after 40 mins, I’m at position 1), and was up to say goodbye to my Mum … and even got dressed in preparation for visit from the Macmillan Nurse (who had been clear PJs would be fine!) … she got caught in an emergency, but thankfully I got calls to keep me updated about when she was likely to arrive. She made it after lunch and stayed for around an hour – she said I’d already done a lot of the things that she’d normally talk through with me (proactive, me, never?) – and said that district nurse tends to do more of the regular checking in, whereas Macmillan gets involved when things need pushing forward somewhere … but there’s a 24/7 number to call for advice, and visits 7-days week if necessary. They are very clear that this is not ‘end of life’ care, but very much about managing wellbeing, dealing with that tricky term palliative (which is about pain management, etc. rather than imminent death) – to keep living well for longer.
Doorbell is still pinging – Keep calm facemask, flowers/food, and cheese (quite enjoying food parcels – so updated Pinterest food list, recipe ideas, and trying to build up places to visit for socially distanced walks, etc. in case that helps people!).
Also took the time to write an email to the main staff I end up liaising with at work – a health update, some talk about sickness, pensions, workload adjustments, occupational health, etc..
After about 45 mins, got my online consultation with the GP 🙂
I joined a Cumberland Lodge ‘Dialogue and Debate‘ in the morning, and floated around the house doing bits and bobs… , with another lovely gift in the post. I bought some hair dye before I was hospitalised, and decided to use that .. even if it all falls out I’ve had some fun first! I’m nervous about losing my hair – I’ve got away with being ‘invisible as a cancer patient’ by keeping my hair before … although to-be-honest – it’s the loss of eyebrows, eyelashes, nasal hair, etc which causes much more functional problems!
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Wheesht – so hot! Just been for a mini walk, lovely to run into Vinnie who was my PARIS coach at the gym – long chat about life, fitness, cancer and interrupted travel plans. Just warming some supper before Zoom with @andrewgraystone at 7pm around his book – last chance to request login! Also, notice anything new … before it goes! #BusyLivingWithMets
Had planned a Wednesday evening on Zoom with Andrew, with some readings from his book (he’ll do these for a group of you too, if you get a group together), and some Q&A … after which a handful of us stayed online for another 45 mins having a chat. I honestly felt like I’d had a proper pre-lockdown kind of night out – so thanks to Jane for suggesting I ‘host’ (lose term) the event .. and we’re talking about doing some more #BexParties .. I had planned to have a big #CancerSucks #45 #NotDeadYet party this summer (and if I do get a short prognosis, then people and travel is what I want) – but COVID has totally messed with that .. so will take the Zoom option!
@drbexlA random video for TikTok ##NotDeadYet ##CancerSucks ##AndrewGraystone ##ZoomRocks? original sound – drbexl
Well, the weather’s been a tad hot hasn’t it – but we did get a decent bit of a break last night! Been plodding around doing some bits and pieces…. was having a debate at the weekend about how to make my backyard useable in winter (whilst COVID continues, and I want safe visitors) – been looking at gazebos, maybe an awning .. also really missing getting dips in, so wondering about a paddling pool (maybe this one?) … though man, if I’m on this drug for life .. I’m doing some more wild swimming for sure … was having a debate with Vinnie about where might be a safe space to go swimming – I MISS IT!
By this point in the week, the steroid craziness has abated quite a lot (but not quite gone), indigestion is still horrific, like everyone else the heat is making sleep hard, but hopefully some fresher weather … Still waiting to see if my right arm will sort itself out – trapped or cancerous lymph node pressing on a nerve, meaning arm pain/loss of sensation in fingers (total pain for typing, not that you’d particularly notice from this)…
Anyway, now my neighbour is offering to pick up a few things from Aldi in the morning (mmm, yoghurt) – and I’ve got Zooms organised for next 2-3 days to look forward to – then some more to think about – and start to plan some more SD walks.
District and Macmillan nurses checking in tomorrow… having another funeral chat with a friend at the weekend – getting bits and pieces sorted. Make my day – tell me you’ve sorted your will, your Power of Attorney, and some basic funeral thoughts (do you want to be buried/cremated as a basic)….
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.