[CANCER] Treatment 14/? has been done! #IAmThe31 .. with a little help from @ogcancerpatient

I still feel like I am recovering from October, with Breast Cancer Awareness Month, and trying to bring more awareness to Secondary Breast Cancer than just one day in the year through (appearing in the Daily Mail and) getting my walking average up to 3.1km average for the month – surprisingly hard considering I look back pre-illness to cycling 12 miles a day to work, walking all over a massive building, then going to the gym/swim after! Please continue to see METUPUK #IAmThe31 campaign (and donate if you can)…


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“How are you” is a complex question when you have cancer

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Getting Informed

I also managed to get hold of my clinic letters and scan reports back to 2017 (though I can’t see the actual scan images unless oncologist shows me on computer in consultation) – which has made for some interesting reading…. it’s one of the funny things in life that you enjoy it when parts of your body are referred to as ‘unremarkable’ … but also strange looking back at the progress of my cancer – at when concerning things started to appear (but were several times defined as ‘probably not metastatic’ – hence the need for all the different scans – and thankful that my team kept pushing for more scans, etc. for last year’s treatment!


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Jumping to conclusions that the cancer is progressing/relapsing for every little ache ?

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Most people know that I don’t want to become an expert in cancer – I want to use the energy/brain capacity that I have (both much reduced) for my own expertise … but I also know that being an ‘active patient’ in the process will give me the best options. I am thankful that my oncologist seems to be particularly proactive – whenever there’s a change to deal with he’s very calm (too calm sometimes, dropping ‘new diagnosis bombs’ into conversation, so I’m like ‘rewind, rewind, what did you just say’) – typically has an idea of what he might want to recommend, but often takes another week to go off and talk to colleagues before coming back with a defined plan – which is often explained swiftly (we all know the NHS is over-pressurised!). I can’t tell you quite how many times I’m grateful that I live near one of the top cancer hospitals in the country – and sad when I see the poor treatment that some others get … I mean, gonna keep fighting for even better treatment options, but also frequently thankful for what I do have!


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Dang look at my SUV ?

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How Many More Treatments Have I Got Left?

Just a reminder to people that I have incurable cancer (or advanced/secondary/metastatic, and some will say terminal).. and yes, my letter in July from the oncologist to the GP confirms that I ‘am being treated with palliative intent’ – I attended a really helpful session on this with Breast Cancer Care – and Jo’s written a blog on how the terminology feels like ‘end of life’, which it’s not supposed to be (yet)!

Extract’s from Jo’s blog:

We have a 2-3 year median life expectancy and some patients are living with and beyond cancer #BusyLivingWithMets with bone metastasis only for example 8, 9, 10 years after diagnosis (quoted by The Global Alliance at their conference)… it’s not chronic, if I have a chronic disease I want to live 10, 20, 30 years later and for us who are diagnosed in our 30’s etc then living only 2-3 years median is a bloody short life sentence.


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? #WordsMatter

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So, I continue to hope that I may be that outlier who gets 10+ years, but also mixed with a huge amount of realism (and lots of challenging conversations!).. and watching friends who look fine and then a notice from their family appears on their Facebook account that they’ve died (whoever does mine, please do say that I’ve died, and none of that flying high language!) when they seemed fine 6-8 weeks beforehand 🙁 The companionship is valuable and you live knowing that you have more friends like this – and probably at some point I’ll be part of the #IAmThe31 … which is why we’re pushing for policy change – so if you have 60 seconds – please do write to your MP using our letter template (they have a meeting on 12th November – TOMORROW!). To be honest, would prefer to not spend weeks declining, so in a weird way offers encouragement that can ‘live life to the full’ til the end … and to be honest, none of us knows – except that at some point we ARE ALL GOING TO DIE – but our culture doesn’t like talking about it!

The next scan will be some point in January (unless I develop any new symptoms that need investigation)…. the recent scan showed that treatment is shrinking tumours (I didn’t realise til I got the scan report that I not only had a 3cm tumour that had cracked my sternum, that the lymph nodes are also described as an 8cm mass – clearly not a solid mass), so we keep going with weekly treatment – number 14 just completed this week. The original plan was to have 18 and then scan, but they decided to scan at the halfway point, so now we just keep going until a scan shows that it’s not working any more (and then there are a few more options, not sure how many – Triple Negative Breast Cancer (TNBC)  seems to be a research area for current pharmaceutical companies to focus on, but as we now ALL now how long trials tend to take (10+ years), and that COVID-19 has knocked research trials/income… that may be too late).

I went to look for a post from The Cancer Patient as there’s a black humour meme somewhere about ‘when do you finish chemo?; when I die’ – didn’t find it but did relate to SOOOO many of the posts (and have an evil laugh; lots about popping back out of the coffin when people say ‘s/he lost her battle with cancer’ (see alsothis article re Alex Trebek)) – and ended up scattering in this blog post… (I love how humour gives the chance to post some serious stuff – and makes good use of Stories to share more serious responses to questions that people have)


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Big chemo mood

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What about the side effects?

I posted about the ongoing side effects recently… one of my oncology nurses has suggested that it may be about time to consider taking a week or two off treatment – so maybe that will work for Christmas (even if we’re all still housebound miles from our extended families…). I also have a palliative Macmillan nurse, and a stream of district nurses – they both came last week and ended up having long chats with both of them about side effects/mental health.

  • Meantime, my oncology nurse had talked to my oncologist – because I’m developing peripheral neuropathy (only in my hands, but as a touch typist, and as it’s making me a bit clumsy – and I have to have an implement to open jars!) I had a 10% reduction in my treatment dose this week, I think they start at aggressively high levels and see how long you can tolerate it for (my oncologist, who I’m next expecting to speak to 2nd Dec, said paclitaxel will last either til no longer effective OR I can no longer stand the toxicity/side effects) – so should still be effective – and hopefully sustainable for longer with reduction.
  • We continue to try and manage the skin rash that has erupted – and is clearly a treatment reaction because, e.g. today it looks like it’s improving, but towards the end of the week it’ll look more like I’ve been burnt (and is incredibly sore). I’ve been given dermatology grade emollients, and Betnovate steroid cream – was supposed to ring GP today to ask for stronger steroid, but forgot – that’s in the to-do list for tomorrow (which now has 20+ ‘take this tablet’ reminders in it!). There is a chance that the dose reduction may help this too…
  • Talked a lot with the Macmillan nurse about pain management – comes and goes around sternum/back (behind sternum) – still taking morphine at night (and she told me if sleeping tablets are helping, don’t worry if taking every night), gave up on pregabalin as mashed my brain, been on 10mg amitriptyline for 2 weeks (not convinced)… so we’re now trying on codeine patches…  they arrived today so not sure how fast they’re supposed to work…
  • My face seems to be kind of under control with various lotions and potions (and I do love the Green Topic face mask) – lots of scarring which hoping may fade..
  • ..and this is the bit that no one ever talks about (another IG meme!)- but seem to spend vast quantities of time talking about bowels and the Bristol stool chart with the pharmacist – then we talk lactulose, dulcoease and movicol – joys … this is actually all down the ondansetron, which combined with the steroids (which is probably fuelling this blog) mean I haven’t felt nauseous for about a month – woo hoo!
  • Oh yeah – the hair – well I think my last eyebrow fell out this morning – I spend most of my time sticking a hat on/off my head as don’t seem to be able to regulate my body temperature well … I don’t think any more hair has grown back at all … but not sure any more has fallen out on my head. The most difficult place to lose hair is nasal hair (drippy nose) … end up with blood clots every morning .. and my voice has been husky for 4-5 weeks – so waiting for an ENT appointment. I got a letter saying I had an appointment 1.56am on 24th December – then one the next day saying basically I’m in the system and I’ll hear more when someone reviews my notes (have fun with that – there’s a lot of them)…
  • And – blood pressure – still rubbish – but we did a second reading towards the end of treatment yesterday – and it was pretty much normal – still low, but 🙂
  • Mostly am super tired – out of bed late, into bed early – I don’t tend to nap in the day … but was talking with others about how got so many things we WANT to do, but end up faffing with random TV and social media chats.. it’s a pandemic (and cancer) state of mind!
  • <edit – added next day when I remembered> treatment also affects nails – currently getting discoloured and weak/crumbly/peeling (not related to the neuropathy) – they may start peeling off too – I have only lost one toenail throughout all my treatment – wasn’t particularly painful and it grew back relatively quickly …
  • Still continuing my onco-psychology appointments until at least January – when we’ll re-assess …


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This is literally what I do #napspiration

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What about work?

It does make me wonder about what/how I’ll manage a return to work, but hoping to do so some time in January (hoorah, combine with scanxiety, but going to have to get used to that) …. have ongoing informal chats with my Head of Dept, formal ‘Welfare chats’ with HoD/HR/union rep – most recent was late last week.. feel like we’re trying to work out what might be possible (e.g. not expecting to head onto campus this academic year!) and help me do ‘meaningful work’ (esp research), whilst also pulling some kind of weight with teaching. I’ll talk to Occupational Health after talking to oncologist in December, we’ll look at how to combine phased return with the annual leave I didn’t manage to use last summer (maybe some of this year’s too!) and the kind of tasks I’ll do… ill-health retirement MAY be an option but £ not good, and I don’t just want to sit on my sofa and wait to die so … we’ll see!

I am now signed off til January 4th, though doing bits and pieces of stuff that make life feel meaningful – e.g. some webinars (as speaker or participant), and I would like to get back into working on my book draft/edit (due July 2020 :-() – wonder if by Christmas is realistic? After all those years of people trying to get me to slow down and live in the present – well, don’t have much choice do I … got to work on the basis of hope, but be prepared for everything to be thrown up in the air every 12 weeks or so… this was closest meme, but reminder that I’m not finishing treatment:


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The “new normal” has entered the chat

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Media & Press Media - Text

[PRESS] Featured in @MailOnline as part of @METUPUKorg talking about ‘pink positivity’ and #SecondaryBreastCancer

Daily Mail screenshot

My section of the article starts:

Bex Lewis, from Stockport, was diagnosed with primary breast cancer in 2017, which developed to secondary breast cancer in 2019.

She claims one reason for the charity sector’s reluctance to highlight the issues facing patients with the incurable condition is because women who are dealing with their first diagnosis don’t want to hear about it. 

Bex adds that many women report the support networks of other primary breast cancer patients disappear when they get a secondary diagnosis.

I am very thankful that I DO have a number of friends with primary breast cancer who are very much still within my support/friendship circle, and who are very aware that there’s a 30% chance that their cancer could metastasize (this does mean there’s a 70% chance that it won’t, although many remain fearful!). We don’t want people to put their lives on hold and live in fear (we’re trying to be #BusyLivingWithMets), but we do want them to be aware of the red flag symptoms, especially as many GPs seem not to connect symptoms with previous breast cancer diagnoses.


[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] 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:


[CANCER] Treatment 9, Dexamethasone and walking 3.1km per day for @METUPUKorg in #BreastCancerAwarenessMonth #IAmThe31

So, last week most of my brain energy was still being taken up with feeling nauseas … but the pharmacist, whilst trying to get hold of haloperidol, which one pharmacist thinks will give manageable side effects (so many things close my brain down), and another thinks won’t – but advice is to try it … but first I had to find it – ‘manufacturing issue’, ‘discontinued’, and ‘in stock’ led to me being able to pick that drug up today – now do I wait til Monday to try it?!


In the meantime, the pharmacist has issued me with dexamethasone over the past couple of weeks… a cheap and easily available steroid… in fact you may have seen it blamed for some of Donald Trump’s tweets over the past week (steroids typically leave you rather hyper, and maybe remove some filters):

I’ve been issued with just 4mg for the day after treatment (and I need to remember to take both in the morning, otherwise anything taken after around 12 noon leads to particularly limited sleep that night), and 2mg the day after. The hope is that this will manage the nausea … which finally at the beginning of this week it started to do. As ever, however, one drug solves one thing, and creates another … and the side effect (aside from steroid flush, steroid craziness, and possibly a little ‘roid rage) mostly seems to be extreme heartburn …. so I’m back on the lansoprazole every morning (having to remember to take that and the cyclizine 30-40 minutes before any food), along with Gaviscon all over the house. The GP has also issued another dose of flucloxacillin to try and deal with my toe … also asked me to ring the podiatrist (question of whether is ingrown toenail, or a callus) – but apparently they insist on recent antibiotics… I hate this particular one though as need to take it 4 x day, not hour before/2 hours after food… which when you’re only out of bed for 12 hours a day…!


With less nausea, I have been able to start to think about doing a few bits and pieces (I am doing a lot of background tidying up of this website, ready for a new design), including starting to sketch out a social media strategy – particularly the blog – for METUPUK – a mix of thinking long-term, and trying to get some content out for Breast Cancer Awareness Month (beyond the pinkification)… Secondary Breast Cancer only has one focus day – 13th October – although it’s only secondary/metastatic/advanced (breast) cancer that kills… and kills 31 British people (usually women) every day.

One of the things I was challenged to think about by friends who have done similar, was to do something to reflect the 31 women that die every day… and I decided that as last month my daily average for walks was 2.2km per day, I’d try and push that to an average of 3.1km per day for October (which I’m actually finding quite tough, and having to push myself out the door)… today I’m at 3.2km for the last 7 days .. so on track (bearing in mind that if I manage 1km on Monday – treatment day – that’s quite something!)…

As a group, METUP-UK tries to demonstrate how we are #BusyLivingWithMets, but we are also #Dying4ACure, and need changes in policies and practices, and better research, to give us better odds than a 22% chance of living 5 years after a secondary diagnosis.

You can demonstrate your support for my efforts in this in sharing METUP UK resources amongst friends/family/influencers, or donate to our cause (31p x 31 days = £9.61, if you’re interested in some maths).

Oh – and earlier today, there was a number of people posting #4ForStageIV – four words to sum up Stage IV.