I’m currently listening to Kate Middleton on YouTube, talking about mental health in a time of COVID19. Today, she’s highlighting that faith doesn’t mean that the very human conditions of anxiety and depression disappear, especially in current times, when ‘the end’ feels completely out of sight… although some people don’t seem to be treating it this way. There’s some hope with the potential Astrazeneca vaccine, but no guarantees. Meantime, we’re all trying to find ways of adjusting to ‘the new normal’ whilst there’s not (yet) a vaccine – and the radio asks if there ever will be one. I sometimes hate the phrase ‘the new normal’ – it’s used frequently in the cancer community, and COVID19 has felt somewhat like one too many waves knocking me over … I keep getting back up… but each time I’m a little more tired (alongside physical fatigue from the ongoing cancer treatment slog).
Unbelievably I’ve been back in the UK for 7 weeks today … I’m very used to being at home and trying to balance work/other bits of life (and super grateful that I have a small office to which I can shut the door, and can also choose to sit elsewhere in the house if I wish). I’m only really keeping track of the weeks by my treatment: 2 weeks quarantine; treatment; 3 weeks; treatment; 2 weeks ago…
When I turned up for treatment 2 weeks ago, I was clearly in a pretty bad place mentally. The nurses on the Laurel Suite are great – they care about us holistically, and took time to sit and talk whilst I cried my eyes out. I’d been feeling sick non-stop since the previous treatment (which it turned out was a double dose!), we think I pulled my chest muscles whilst I was in New Zealand, and this is still very painful (ongoing paracetamol/ibuprofen, though I finished the tramadol) – causing issues with trying to sleep ‘comfortably’ – and all the other side-effects were just wearing me down.
I have Herceptin/Perjeta as 3-weekly infusions (targeted cancer treatments, rather than the rather more blunt chemotherapy), daily exemestane to reduce the oestrogen in my body (along with ovary removal in December) – causing chemical/surgical menopause (typically harsher than natural menopause), denosumab as an 6-12 week injection to strengthen my bones as all the oestrogen has been stripped out, huge calcium/vitamin D booster tablets twice a day. The treatment causes my skin to flare up painfully, so I’m permanently on doxycycline (antibiotic) to try and manage that, along with a range of prescribed creams that need regularly applying. The nausea we are trying to control with cyclizine, but it’s only in the last 2-3 days that this seems to have faded away (we’ll see if it comes back in my next treatment in a week)… but every drug seems to impact stomach in some way 🙁
Alongside these prescribed drugs I have glucosamine (for creaky knees), probiotics (manage stomach), evening primrose oil (menopause) and fish oil (brain). I do wonder how beneficial they are… also tried essential oil diffuser … hmm
*Added the next day! I knew I’d forget something. I have specialist toothpaste as my teeth have become super sensitive. I am thankful that the lymphedema that I’ve had to wear sleeves for, seems to be being managed by massaging in heavy moisturisers morning/evening (no sleeves). At night I also have Phenergan or Zopiclone to help my sleep (get to sleep/stay asleep) – and I’m often in bed 9-9 (so much for being a late night owl – more like the ‘permanently exhausted pigeon‘). I’m also missing my swimming (though have been gifted UpwardFrog Yoga) – for mental health – and the way it stretches out my shoulder and all the scarring around my mastectomy site… I do continue to do my physio every day – especially hanging off a door!
Thankfulness & Depression
I am aware that I am very privileged: white, middle-class, straight, decent job, own home, good friends, my faith, have been able to travel a lot. Before I disappeared to New Zealand, my house was pretty much done (barring the outside space, which I haven’t really got the energy for this year) – so I was able to come back to comfy sofas, and a house set up for me… though I could do with saving up for a new bed, replacement laptop! I have friends looking out for me (online and offline), plenty of clothes, an abundance of toiletries, can join ‘extra’ activities online, my treatment has continued, the scan has ‘only’ been delayed 6 weeks, and I’ve now managed to get various delivery slots, so although food can be a bit of an oddity, there’s plenty of it (still got 16kg of flour to go!). Incurable cancer and all its rotten side-effects is rubbish, but I’m fortunate to live near one of the top hospitals in the country, feel that I can trust my oncologist, and have a chance of a decent run at NEAD (no evidence of active disease)… but sometimes it does all get too much!
It was good to talk to the nurses last Monday, and really appreciated Beth ringing me on the Friday to check how as I was doing. Depression has no respect for anything, it’s a chemical/mental disorder, and current circumstances are not conducive to improving it (2017/18 cancer, 2019 incurable cancer, 2020 pandemic). I rang the GP on the Tuesday – and one side-benefit of the pandemic – got a call back within 20 minutes. She encouraged me that it’s not surprising that I’m struggling (especially as I’m trying to get on with work too, although I have dropped to 80% work, thanks to provision of PIP), and that, same as it was ‘not bad’ to go onto citalopram (20mg) before, it’s not ‘bad’ to go up to 30mg. So that was issued, and the extra meds turned up last Friday. We know they’ll take a couple of weeks to kick in, but also gave myself some ‘self-care’ in clean sheets, cleaning kitchen/bathroom and whipping the hoover/mop around (all jobs I hate, and usually pay someone else to do, but there’s no choice at present).
The ability to join another family as a COVID-bubble has definitely helped! Here I was yesterday enjoying a bit of sunshine outside, looking back over the last couple of weeks:
I was due to finish my counselling sessions providing by the Christie, and we were going to look where to start anew, but I’m being kept on until at least August, once a month, to have Zoom counselling, to try and see how we embed COVID19 in with the changes made with cancer – using CBD/compassion focused counselling to look at the possibilities, rather than disappearing down a hole. We did reflect on how well I’ve done over the past couple of weeks, to coming from a very bleak and hopeless place, to getting up every day (always the first step), getting work done (although I’ve still some quite terrifying deadlines TBH – my book second edition is due end of July – there’s not really space to extend that – for me!), having a clean house, reaching out for help, meeting friends for socially distanced walks (and I have more offers, didn’t want to do everyone in a week then see no one!), and deleting more and more things from my to-do-list (I really am, I keep thinking, but I got rid of ALL THAT, why is there still so much stuff to do). Meantime, I am making use of ToDoIst, Toggl and Pomodoro to manage my focus on work, to ensure I get my 7.5 hours in Mon-Thurs, and try and get the ‘top stuff’ done! By Thursday afternoon I’m limping a little, but know I have Friday to crash 🙂
Once we have the scan results, hopefully they’ll not show any progression, it will be onto discussions with Occupational Health, and managers at work, to work out what this looks like. Like many universities, our workloads have been rejigged – research hours halved to allow time to prepare teaching material for online teaching (except for hours funded by external bodies), there are many Zoom/SkypeforBusiness (when it wants to work) meetings, etc. as the university seeks to adjust to what the next academic year looks like, and we wonder if students will come or delay. I have NO teaching in my workload for the rest of this year, but will do some kind of phased return to teaching through next year … although I’ve never received an official shielding letter, oncologist has said doing the right things in mostly being at home, a walk a day, food deliveries, and meeting people safely… going into the classroom is a different thing – so we’ll see what happens with all that!
*Also added the next day: Still whirring around my head is a question Occupational Health asked last time ‘Have you thought about giving up work?’ – well, obviously I have, but, for now, it’s the right thing to continue, so it’s about finding the right way to do it…
Meantime, it’s pretty much time for scanxiety again. I was due to have a scan 6 weeks ago, but it’s been delayed whilst everything has been thrown up in the air. It’s another one of the full body scans at the Christie (like some kind of medieval cage!), coming up this Friday (woo-hoo, excellent way to spend a day’s leave), and the results should come via a telephone call on 6th July.
My last scan was NEAD, so let’s hope this is too, but we never know. I know people who are still on Herceptin and Perjeta 5 years down the road, but more commonly, it lasts less time than that. The hope is that it lasts as long as possible as it’s my ‘first line treatment’, and once you start moving onto third and second line treatments, of course you are starting to run out of options. Although I mostly find social media a benefit to connect with others in a similar position to me, this is one of the areas where it can be difficult – seeing friends with progression, side effects from other treatments (that I’ll likely end up on some day), and of course dying. We all live with hope to be #BusyLivingWithMets, but those with the worst prognoses are particularly struggling with being stuck inside, not seeing family/not travelling throughout this summer – not knowing if this is the last summer….
I’m part of a group called METUP-UK which seeks to campaign for better treatments for those of us with secondaries (the cancer charities often feel like they do limited work for us, smaller amounts of research are spent on us, and this past couple of weeks it feels like many of the 31 women each day who die of this in the UK are people that are known – including fellow member Beth Roberts). See fellow METUP-UK pal Emma on this (she’s also written on scanxiety/progression):
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It’s treatment AND scan day today. So many friends have commented that it’s come round quick. And it has. It really has. They’ve also asked how I’m doing. Full disclosure. I’m weary. And I’m not doing so well right now. It’s hard enough navigating the world with a terminal disease, but a world wide pandemic and everything that’s been happening of late has made it so much harder. Everything is harder right now. So many people in our cancer world seem to be getting bad news, and we’re hearing about the deaths of our friends. Cancerland said goodbye to another one of our friends at the weekend and I think every time it happens to someone you know, it hits us all quite hard. It’s hard to explain to the healthy amongst you what it’s like to inhabit a world where death is so prevalent. But it feels like, especially now, every time one of our stage IV friends dies it just means those of us still here need to shout a little bit louder about what we need to stay alive. So I’m here on treatment and scan day to shout loudly. STAGE IV NEEDS MORE. 31 people are dying every day from metastatic breast cancer alone. We’re currently on day 170 of the year! Just add that up and think about it. It’s over 5,000 people, and hardly anyone cares. We need quicker and wider access to new drugs, and we need more trials, we need more understanding of what stage IV means. But above all, we need a cure! But those of us with incurable/metastatic/secondary/terminal cancer have been pretty much abandoned during this pandemic. Trials stopped. Some treatment stopped. Scans were stopped. And scarily, research has stopped – to the extent that @cr_uk are sending me emails now to brag about the fact they’re no longer researching cancer, but staff are now working on covid! If one of the biggest cancer charities in the UK has given up on us, what actual hope is there? I know I have no influence – I don’t have enough followers (not enough tits and tiktoks to have followers!) to influence a lot of people. But I know that so many of you following me are advocates. And we need you! I’m hoping that maybe someone with some influence, might see that we’re dying in huge numbers, and help!
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.