[CANCER] Ongoing update and why am I walking average 3.1km per day? #IAmThe31 #BusyLivingWithMets

[CANCER] Ongoing update and why am I walking average 3.1km per day? #IAmThe31 #BusyLivingWithMets

It’s been a busy week this week, week 10/18 of the current run of treatments (last blogged a week ago) .. and the beginning of the week came with a flurry of activity as we sought to launch the #IAmThe31 METUPUK campaign for Secondary Breast Cancer Awareness Day on Tuesday.

I joined Andrew and Jane for a walk around Abney Park (ended up eating outside at the local pub, as the bacon cafe was shut) on Saturday, and (Zoom) church on Sunday before a 4km+ walk, chat with my mum, and a film (3 billboards)!

Treatment

Monday was one of the more straightforward treatments at the hospital – after waiting around 20 minutes to get in (for which I had walked up and down outside the building, as I never want to go for a walk post treatment)… if I hadn’t ended up having so many chats with the nurses and pharmacists would have left by about 3.30pm! They’re still trying to get on top of side effects, had some good news to share… and I managed to organise a podiatry appointment for Friday…

#IAmThe31

Tuesday was Secondary Breast Cancer Awareness Day … and I had a flurry of activity on the day, producing some content, engaging online, and chatting to others from METUPUK about the responses we were getting (nothing media based, unfortunately) …

A reminder that it is tying up with the 31 people (mostly women) who die every day in the UK that seeking to draw attention to, and raise sponsorship for METUPUK, by aiming to get my daily distance for October up to 3.1km per day (post hospital was about 1km, September was 2.2km). We constantly hear how if (breast) cancer is caught early, it’s very treatable these days … but there’s so little coverage (and little research) into metastatic/secondary breast cancer – and people (including me) are dying way before their time because of this…

 

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Video created by @metupukorg to showcase real people living with secondary breast cancer …

A post shared by Bex Lewis (@drbexl) on

Thanks to my MP Andrew Gwynne for posting about #IAmThe31 on Facebook and Twitter.

Scan

So, I was anticipating a scan in December (once 18 treatments had been done), to see if the treatment is working, but I am not complaining at having been brought in at the halfway point, as we should already get a clue as to whether weekly paclitaxel is working or not, and if it is, then we continue (despite the heavy ‘load’ of weekly treatment, we want it to be working, otherwise will have run through another treatment line, of which there are not an unlimited amount)… and I am watching (new) friends who ‘look entirely healthy’ dying…

The Christie has changed their entry/exit procedure from Wilmslow Road to Oak Road – which looks like might be working a bit better with the volumes of people being dropped off there. I had learnt from last time, and took a brand new blue mask (saving the NHS a handful of pennies), not a reusable mask. Ran into a friend from Maggies whilst in the queue waiting to get in …

As there’s no particular reason to get dressed up many days, I’m making a bit more of an effort on hospital days – and of course getting the #WaitingRoomFeet in there… the nurse putting my port in said if I took my boots off, she was going to have them … and they generated a lot of comment on social media:

Once I’d checked in, and found my (socially distanced) chair, I was given around a litre of iodine based contrast to drink (yeah, it tastes foul) = with instructions to drink 2 cups immediately, and another every 15 minutes … no one seemed to be getting to the bottom of their drink … nurse asked me to drink one more cup (then said she wasn’t going out drinking with me, as I downed it fast – get it over with!). Then it was time to find another socially distanced chair in another waiting room, before being called into the machine.

CT scan is super swift – machine looks like a big polo, but not claustrophobic like an MRI scanner. My port was attached to the contrast, I was sent into the machine, then given warning that the contrast was coming (at which point you feel like you’ve wet yourself), and 5 minutes later sat back outside – for 15 minutes til port could be removed. Then it was time to go get chip shop chips, walk the long way round to the car … and I thought I was going home to do several things – but fell asleep on the sofa and became a zombie for the rest of the day!

The scan results should hopefully be back on 28th October (oncologist always has Weds clinics) – though am told to be prepared for a week’s delay at present…

#BexParty

Thursday was still quite zombie like – talking to others – post-scan crash is quite a normal thing.. Whilst my cleaner cleaned, I headed out for my daily walk … ended up with a (socially distanced obvs) chat with the 90 year old lady up the road who calls me ‘lady in red’ as she sees me walking past most days! Ended up out for quite a long walk, came back to realise I’d missed my Tony’s Choc delivery – but the DPD driver has got to know me so well, he came back at the end of his shift to drop it off 🙂 Not sure where the rest of the afternoon disappeared to, but in the evening it was time for one of my unorganised chaos Zoom parties (number 3 – keep an eye out for FB events being set up) … friends from many different aspects of my life (many of whom recognise each other’s names from social media) who just make conversation – with people dropping in and out. Always tired, but ‘energised’ by these zooms … I have excellent friends (we ended up over 2 screens):

Podiatry

Along with trying to manage the nausea, heartburn, skin rashes, radiotherapy burn, stomach troubles … over the last few weeks we have been trying to work out what is going on with my toe – is it an infection, is it an ingrowing toenail, is it a callus – whatever – still hurts and not healing well despite copious salt baths and fresh air. Thankfully I have just taken the last flucloxacillin (SO disgusting, plus need to take 4 x day on empty stomach), which was my third course of antibiotics in 6 or so weeks … and have been told there’s no infection, thankfully.

One of the things that happens with chemo is that your immune system is stripped bare … so even small cuts, etc can end up taking ages to heal, or getting worse than they would if you weren’t on chemo. So, we’re not sure how the damage was caused, but the podiatrist Emma (young) said that I clearly look after my feet well, it’s an ingrown toenail, but she cut it out … said to do another salt bath tonight, then leave it out to air again, but to massage a small amount of cooking oil into the toe as the nail grows back, to keep it soft, so it doesn’t impact again! We had a good giggle and chat before I headed back out – no big walks today – we’ll just see what my ‘inside house’ distance is…

Not Working

I’m signed off work til 4th November at present, though no one is expecting me back before January earliest… Meantime, I’m trying to sort out a new version of this website, a METUPUK social media strategy, I’m behind on my emails (there’s sickness related admin as well as personal emails), want to sort out my to-do lists and digital space, I’m doing a couple of sessions with Bryony for Premier Digital Conference, and I’d still like to get my book written (before Christmas, hopefully)….house is pretty tidy and sorted though – attic and garage could do with a bit more ‘death cleaning‘ 🙂 And you know, treatment, and seeing people as per whatever current guidelines are … the awning is up, so if people are allowed to socialise in back gardens, I can keep you dry, and (vaguely) warm …

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