I have just returned from a check-in at The Christie, as I’m nearly halfway through my 18 weeks of paclitaxel (which, if it’s working, will probably continue).. one of the fastest appointments I have ever had, once I’d queued to get through the COVID check system, bloods were taken, and got to chat to the registrar through the list of side effects that we’re trying to manage alongside treatment…
When I wrote the last blog, it was the day before my ‘Welfare Call’ with work – that was pretty straightforward – there’s no expectation that I’ll be back into work before January, and when the time is closer, we’ll look at phased return and reasonable adjustments – and we’ll have another look at my worktime – I’m currently on 100% (pay) thankfully, but was planning to be on 80%, and 60% might be required for a while too… at present I feel tired and lacking concentration (who isn’t in these COVID times) – but the registrar did say today that there’s been a lot going on (hospital, radiotherapy, chemotherapy), and my body has still got quite some recovery to do (so hopefully I’m not stuck where I am feeling now for the long term).
People keep saying not to worry about work, but trouble with having a career over a job .. and also – I’ve now found out what I’d be entitled to with ill-health pension – and it would be a struggle – enhanced would be manageable… part of the joy of a career path that involves lots of short-term/part-time jobs – several without pension provision.
It’s a real challenge at present with the COVID restrictions, and being a ‘vulnerable’ person (chemotherapy wrecks your immune system), but the medics are very keen that our mental health doesn’t go through the floor when we’re already suffering a range of side-effects – so it’s all about ‘managed risk’. I am having an awning fitted this week, although whilst people can’t sit in my backyard (local lockdown) that’s not going to help too much – hoping that will keep people dry, and a patio heater – warm!
Managed to meet up with a friend who haven’t managed to see since January … Abney Hall provided fresh air, a place for a socially distanced walk, and some snacks:
I went back the next day with my bubble family … my cousin also came to visit for a week, having isolated before visiting, and had a (private) COVID test to ensure that we had managed all the risks that we could … been great for my dipping and diving mental health to have her company for a week. We managed a (SD) meetup with another cousin from further south:
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The day after we went for a day at Crosby beach (for a picnic and checking out the Gormly figures), before heading to Formby and a dip in the sea (might add a bit of video later):
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So, I cold capped for two previous chemotherapy treatments, but with this treatment being every week, and with no visitors to accompany, and potentially ongoing for so long as it works… so I was warned that my hair would definitely thin, and potentially disappear. As always, remind people that is not just head hair, so running nose, watery eyes, etc. are always a fun side effect to. Over the past couple of weeks hair had been falling out with increasing rapidity, and the bald patches were becoming quite noticeable. I had said – once it looks ‘beyond it’, let me know – but I already knew.. so ordered some clippers (£9 from Amazon), the wigs were taken out of the box, and a couple of new ones ordered (along with some extra headwear)… and Sunday afternoon the hair came off – thank you to Hannah for doing this for me, and dealing with my tears as we did so:
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Been so great having @findmystyle here this week … mood still going up & down with #cancer treatment – and finally the hair has gone 🙁 surprisingly emotional. Just debating whether it needs a wet shave or to leave the fuzz. Unknown whether will grow back whilst I remain on weekly #paclitaxel. #BusyLivingWithMets.
By the evening I had calmed down a bit, but I still get a real shock when I look in the mirror – and dealing with the changes in temperature (wigs are hot, bare head is chilly) – bamboo cap is on for sleeping, and right now – taken wig off, and sat with a slouchy beanie to keep warm! As you’ll see at the beginning, found some more ‘interesting’ hair – blue ombre today … currently have 4 wigs, and we’ll see if that’s enough 🙂
There is a lot of controversy in the cancer community around Macmillan’s Brave the Shave in which people shave their heads in support of friends/family – because it’s not the same as lack of choice, feels like stripping of dignity (just one more!)… but it seems to make the charity a lot of money, so doesn’t really bother me.
Treatment & Oncologist
The weekly Monday treatments continue – should be 3-4 hours, but last couple of weeks have ended up 5+ weeks, which is pretty exhausting… but the team are keen to try and get on top of side effects – nausea and lack of energy are the biggest problems at present … with the skin breakouts a weirdly draining aspect. Yesterday, I put everything in a list to take to the oncologist for our chat today … got to see registrar rather than oncologist, and we worked our way down the list:
- CT with contrast coming 14th October – should get a sense from this if the treatment is working (results hopefully 28th, but be prepared to wait another week)
- They’ll be another scan in December when the 18 weeks have finished – not quite sure what that looks like
- We talked about coming off pregabalin (for nerve pain, but gives a fuzzy head), and lansoprazole (reminded need some when on steroids) – are still some ‘bruising sensations’ around sternum – so another drug can be prescribed – amitriptyline.
- Nausea: there’s a drug pharmacist wants to try, but is a production issue, so for now, we’re trying 1.5 days of steroids after each treatment, combined with preventative Cyclizine 3 x day. Wants me to keep a nausea diary /10 to see what’s working…
- We discussed whether morphine causing any of the nausea – just taking a slug at night to help sleep – oncologist doesn’t think this is a problem as low dose, and sleep is key at present (though of course steroids mess up sleep – I remember someone saying ‘dexamethasone’ was known as ‘dexy’s midnight runners’ when I first started with them.
- Skin is currently being addressed with some antihistamines, and a topical lotion – still outbreaks of painful lumps, but maybe disappearing more quickly.. .
- Toe swab came back as try more antibiotics – but rather than floxacillin (4 x day, carefully timed around food), gone for doxycycline – which might also help the skin. Continue with salt baths and letting it air as much as possible (brr)
- Neuropathy is being observed, but as gone from 5 fingers to 2 … only concern is if it’s getting worse.
- In counselling yesterday we talked about constant fluctuations in mood (esp the dips) – might try Mood Coach app.
- Bloody nose and sore throat in mornings – treatment probably drying this out – using Nasceptin to reduce blood clotting
- My mouth – taste/ulcers – was a problem first couple of weeks – but really hasn’t been since then!
- Stomach tends to run over-fast – fun fun fun – loperamide in every bag…
- The radiotherapy burn on my back seems to be healing – the scab on the back that was making it a nightmare itch has healed = winning!
- Am on blood thinners twice a day til late January – but apparently this may just when it gets re-assessed – so might have to continue!
- This past week – real moments of chills – don’t know if that’s just the lack of head covering?!
- Blood pressure reading has been low (it was 103/20 at one reading on Monday – but apparently I’d be dead if that was real, so…) – keeping an eye on that
Nurses continue to be fab on the Laurel Suite, and the registrar was v patient in going through the list, but said overall thinks am doing well – recognisable that lots of ‘smaller’ side effects combine to be quite draining, but seeking to manage as many of them as possible – and keep trying not to put too much pressure on (ha ha ha).
Breast Cancer Awareness Month
And tomorrow – it’s time for Breast Cancer Awareness Month – expect a flood of pink (much of it not useful), and those stupid Facebook ‘secret memes’. If you’re going to share something useful – for primary cancer I’d always recommend ‘the lemons’
For secondary, I’m starting some work with METUP-UK, because metastatic cancer has limited data, limited education, and limited research – and it’s what kills. Jo has been fighting for years to get infographics of ‘red flags’ used by health services, and they are being used by some…
So move beyond the fluff… 13th October is ‘National Metastatic Cancer Day’ (US definitely) … look out for our campaign #IAmThe31 (and please do share, as we build up content, and continue campaigning):
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31 British people a day die of #SecondaryBreastCancer. Their deaths aren’t inevitable. @metupukorg know things can change and we are demanding that change happens now. Join our campaign today and support us this #BreastCancerAwarenessMonth. https://metupuk.org.uk/help-us Millions will be donated to breast cancer research during October. We will fight for it to be used to save lives. Surely that should be the priority? Women are dying every day, some as young as 20. They haven’t lost a battle. They’ve been failed by a broken system of #cancer research and #DrugAccess in the UK. @metupukorg is campaigning for #SBC patients to have a voice at the decision making tables. Patients are being denied access to treatments for #Stage4 #BreastCancer that could keep them #BusyLivingWithMets for so much longer than the median 2-3 years life expectancy. Saving us isn’t deemed cost effective ?. We know we are worth it. Our families and friends know it to. By sitting at the table we can make sure our voices are heard. Read our views on what needs to change. If we win it won’t just help #SBC patients, it will help all patients with #Metastatic #cancer. After all when patients speak up real change can happen and more families can celebrate #Christmas with smiles and laughter instead of tears and heartbreak over the loss of their loved ones. Visit our website today and support us as we fight to change the world. Not just for ourselves, but for the next generation. They shouldn’t have to wait for the deaths to stop. No child should have to grow up visiting the grave of their parent, but far too many do. We demand urgent change for them. https://metupuk.org.uk/help-us/ #MetastaticBreastCancer #IAmThe31 #DyingForACure #SBCBiggestKillerOfWomenUnder50 #change #Pinktober #BreastCancerUnder40 #BCCWW #BCSM #DontIgnoreStageiv #MBC #Stage4NeedsMore #StageivNeedsMore #Children #JoinUs #PicOfTheDay #BreastCancerAwareness #hope #Research #CancerResearch
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.