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)…
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 ?
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!
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.
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)
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 …
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:
