[CANCER] It’s been a long #BreastCancerAwarenessMonth #BCAM #IAmThe31

Well here we are, November… and the focus for cancer awareness moves to lung and pancreatic cancers … basically we hate all cancers, right. I know we’ve all got to die at some point, but it would be great if we weren’t tipped into an early grave by cancer (and other illnesses) – and also that we wouldn’t have to live with the crappy side effects.


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This past month has been a busy one with the focus on Breast Cancer Awareness (although we are still super sad that only October 13th is a day for metastatic breast cancer (the type that actually kills). I have been involved with conversations with METUP-UK for the past few months, and a couple of months ago, agreed to take responsibility for shaping a social media policy (though not doing all the social media) and a blog strategy.

Emma, who works in digital marketing, had come up with the idea of the #IAmThe31 campaign, with a video featuring those of us living with metastatic breast cancer (of which 31 people will die of this every day in the UK, including 6 men per month)… as we try and get across the urgency and realism of our situation (not enough research, poor government policies, limited education about metastatic cancer) – we’re not trying to be negative, but we’re ‘fighting for our lives’ (not against the cancer itself, but against the systemic problems – which could be changed!)

It’s a real challenge, as even the breast cancer charities don’t seem to want to talk about secondary cancer much – it’s all about early detection… *see Tassia’s cartoon in featured image.

Walking 3.1km Average

I said that I was aiming to walk 3.1km+ average per day across October, to raise awareness and funds for METUPUK: super thankful to those of you who have cheered me on, shared information, and donated funds. As someone who used to do 8-10 mile hikes at the weekend, after a full week of week (where had cycled 6 miles each way to/from work) it didn’t seem that far. With ongoing chemotherapy, radiotherapy tiredness, and just a body and brain battered by 3+ years of treatment, it was actually quite a challenge – but I did it!

I am going to maintain my walking, but maybe not trying to catch up from e.g. treatment day! And of course, just because breast cancer month is over, doesn’t mean that we can forget about this … I and my friends have to live with this every day, and far too frequently see our friends dying of it (especially frustrating when treatments are available but not funded, etc.).

Of course, within all this, we’re continuing to seek to be #BusyLivingWithMets… now when/where can I next find an opportunity for wild swimming?!

Andrew Gwynne, MP

I was incredibly grateful to my own MP who shared information about our campaign across his social media:

This Week’s Side Effects

I wrote last week about the overall side effects (and the fact that the treatment is shrinking the tumours), and this week in many ways it’s much the same.

  • Brain still mulling over the phrase from oncologist that ‘we continue with this treatment until the toxicity effects get too much’, although we can reduce the dose (safely, apparently). I’m already on second line treatment (primary doesn’t count, I don’t think, otherwise I’m on 3rd!) – and it’s rare to hear of people on line 7-8 of treatment (a line being a particular set of treatments administered, not including radiotherapy).
  • Having a lot of, ahem, fun, trying to work out how much lactulose is needed …!
  • Most of last week I was still awake til 5/6am in the morning, then the last 3 nights (with a little help from zopiclone) I’ve slept around 12 hours per night! Still feeling really dopey all day so not getting much done… *reminder from counsellor AGAIN – you are ‘off sick’ and not ‘on sabbatical’ … still got things I want to do!
  • I don’t think the fluff on my head has grown at all … and my eyes are getting more and more watery as eyelashes disappear.
  • Naseptin is really helping my nose/bleeds – I’ve got an ENT appointment (for late December) – my voice still sounds like I have laryngitis.
  • Peripheral neuropathy is really making itself felt – I had lost sensation is my right fingers from tumour pressing on a nerve, that had improved, but now both hands feel numb/tingly … may make me a bit clumsy – and my touch typing may be a *little off!

Being Thankful

As we head into a deeper lockdown (doesn’t seem to make that much difference to my life to-be-honest, though still hoping people can come and join me in my back yard before too many more weeks!), wait for the impact of Brexit (and hope that Trump gets toppled this week) – I have an app called ‘3 good things‘ that I use last thing at night to remind me that however dark things get, there’s always something to be thankful for (even if it’s that I’m still breathing, or that the rain wasn’t TOO heavy today, etc.). I am not overthinking this – and doubtless will think of many other things later:

  • Living near The Christie, with a good team that seem to look out for me.
  • Having a permanent job which is still providing me with sick pay (til early Jan) – and decent colleagues.
  • Being able to go to The Laurel Suite, Stepping Hill Hospital for treatment, where the staff are wonderful and know me well.. and seem keen to manage my side effects.
  • Having a wonderful set of friends on/offline (most in a blend!) who send me encouraging messages – online and in the post – and don’t put too much pressure on me
  • Being able to ‘bubble’ with the Graystones – and our joy at going for a bacon buttie at Abney Hall!
  • My lovely cleaner Julie who comes fortnightly … and also changes my sheets (a job I find surprisingly exhausting).
  • The power of Zoom (etc) – for connecting with family, friends and church – and online events – esp as my family all lives 4+ hours away!
  • Getting to know the METUP-UK, YBCN, Stage IV Needs More, BRIC, gangs – supporting each other in up/down times.
  • Having the £ (earnt/gifts) which means that my house is pretty much done (great, as spending so much time in it), a comfy bed, useable technology, a car (though anyone else getting 3 months to the gallon?!), warm fireplace
  • Still decent content on TV through Netflix, BBC, Channel 4, etc…
  • Digital tools such as to-do-list (so I can remember all my meds), games (relaxation), and for connection, etc.

Featured image cartoon by Tassia Haines.


[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)!


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…


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 …

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


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…


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):


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 …


[CANCER] Today is ‘Secondary Breast Cancer Day’, an awareness day. Checkout #IAmThe31 with @metupuk

13th October is officially Secondary Breast Cancer day – the only day in Breast Cancer Awareness Month that officially recognises secondary (metastatic) breast cancer.

And so, this October 13th, MetUpUk are bringing you their #IAmThe31 campaign to raise awareness of some of the issues that people with SBC face……..

  • There are 31 days in October, and there are 31 deaths every day. By the end of the month, 961 women and 6 men will be dead
  • Secondary Breast Cancer is the biggest killer of women under 50 in the UK
  • The median survival for people diagnosed with secondary breast cancer is 2-3 years, although around 1 in 10 will survive over ten years.
  • 30% of early-stage breast cancers will metastasise and become secondary. Sometimes even over twenty years after successful treatment for primary breast cancer.
  • MetUpUk believes secondary breast cancer research is underfunded, and that better access to drugs, trials and treatments could keep women living longer with the disease.

#IAmThe31: See Our Faces

The #IAmThe31 campaign includes a video featuring secondary breast cancer patients:

A webpage includes over 60 people who are living with the disease, and shares a little bit about them and their diagnosis.

The aim of the campaign is to put faces to the numbers, showing that the 31 people who die daily are real people with real lives, families, and friends who will be devastated by their death.

MetUpUk demands change and they need your help to spread the word of secondary breast cancer.

MetUpUk would like everyone who sees the campaign to aim to share it with at least 31 people.

We’d like as many as possible to visit the website and read about some of the `31’s’ living with this terminal illness.

They’ll also find infographics showing the signs and symptoms of secondary breast cancer.

My Story

I’m one of a few of us who have sought to give a little more insight into what life looks like with secondary cancer: