So, I last blogged in Week 4 of treatment (out of 18, for this first run) … I rechecked the maths for 18 weeks, which I thought was the week before Christmas, but it’s actually w/c 7th December.. so HOPEFULLY (if COVID hasn’t messed too much with treatment), I will know before Christmas whether treatment is working or not! We want it to work, because otherwise there’s another treatment line that I’ve run through … but if it works, I will continue to have it every week! This does mean blogs are likely to become more and more spaced out as not huge changes… though this week it’s still managing a lot of side effects!
I’ve an appointment with the oncologist on 30th September, just bloods and a chat – no scans… which are unlikely to happen til December.
Diary & Social Life
Treatment was continued on Tuesday last week (bank hols), and Monday this week. Wednesday last week I put makeup on for the first time in ages, and pre-recorded a podcast//vodcast with Tom Elliott, which will be out later in the year (including 5 steps to a more positive online presence). I’m managing to get out for some socially-distanced walks, get some online chats (scheduler), working on updating my website, getting involved with METUP-UK (as this may affect my treatment options, as much as any other reason), chat to my neighbours (who does some of my shopping in Aldi!) – and today I gave myself permission to sit around and read a book! I’ve been joining my Durham housegroup most of the summer, though that becomes more difficult on treatment day, when I tend to go to bed super-early – and also still enjoying Church on Zoom…and of course my wonderful ‘Bubble Family’ … and I’m looking forward to my cousin coming up later this week to stay for several days – she’s been isolating since last week, and had a (private) COVID test to ensure that we’ve managed all the risks we can!
The drugs that I’m on means that I could lose ‘all’ my hair, or it could ‘just’ thin … it’s looking rather like thinning, but there’s so much hair coming out everywhere … it’s stuck to every surface, pillow, all over clothes, and hands seem to be full of it … but we’ll see if it comes to the need to shave it off (unlike most people, if I stay on the treatment, there’s no end date in sight)…
So this was earlier at the weekend, when it had already been falling out for around 10 days:
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I’m surprised that I’ve any hair left on my head the amount coming out … but I still do! Day involving some financial admin, drying clothes, bit of weeding, a walk with Jane before food with Andrew and Jane – then a bit of digital admin and now it’s clothes away and some TV I think. Treatment again tomorrow. #IAmThe31 #BusyLivingWithMets
And this was today:
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I have 2 wigs (though if I need to wear them I might look out for some more fun stuff), and quite a few hats to get me through the winter … it’s all part of the ‘needing to be flexible’ and ‘letting go of control’ which has to come with cancer treatment!
Not forgetting that it’s not just head hair that disappears – some I don’t mind, but nasal hair = bloody/drippy nose, and eyelashes – shorter = gunky 🙁 And once eyebrows disappear face just looks a bit ‘blank’….
You don’t need to see my toe, but for weeks it has been looking rather like it was infected or ingrown … antibiotics didn’t do a magic ‘fix’, although it improved it. Over the past couple of weeks, thankful for the good weather, as the advice has been to leave it uncovered as much as possible … soaking it in warm salt-water for at least 15 minutes every day (to add to the lymphedema massaging, all the drugs to remember to take at the right time, etc, etc)… and not mentioning that my right hand is still quite numb…
I can’t show you a pic of my radiotherapy burn, because I can’t even see it (keep looking over shoulders and can see ‘something’) – last week I said to the nurses that my back had been itching like mad for a couple of weeks. So the top came off again, and she said there was a ‘perfect square’ on my back … so where I had radiotherapy a few weeks ago …! Plus the skin had broken open :-(.
So, the advice was to apply either Pliazon, Aveeno, and/or Aloe Vera (99%) to the back 4 x a day – trying to reach – went for the ‘BackBliss‘ based on online reviews (doesn’t crack, doesn’t soak all the lotion up). This week I said itching hadn’t really reduced – but on looking apparently looks much better, and the broken skin was properly healing. This week, Gemma from Stage IV Needs More, sent me some Flamigel that she’d been given by the manufacturers, and pharmacist said might as well try that too… and we have another look next week (still VERY itchy!). I am assuming I’ll always be left with a coloured patch, but if it can stop itching… (finally found a use for that wood backscratcher (basically this) I bought back from Benidorm many years ago!).
Brain Fog & Nausea
I was given pregabalin to deal with nerve pain (75mg morning/night), but this has left me feeling foggy ever since I took it … so GP the other week said halve the dose, and then this weekend have stopped the dose. If get to the end of this week without pain, then can stay off it… to be honest, this last couple of weeks, I’m not exactly running marathons (nor have I written any of my book) – I’ve definitely got some more energy and brain space – and managed to do a few small bits of work…
I had also been given lansoprazole to manage heartburn, which was really bad the first week – but as we’re now using IV Ranitidine I’ve not really had any problems with that, so also seeking to wean self off this medication … not sure if this is why nausea has got worse over last few days (including being sick in the middle of my dinner on Friday – something that hasn’t happened since first rounds of chemo)… so I’m back on one a day (but not 2) – still feel quite ropey though – I really hate feeling sick – I’d rather BE sick, but not sure that makes a lot of difference… and whenever you add/takeaway a medication, typically there are knock-on effects – especially on the bowels 🙁
I’m still on antihistamines twice in the evening to try and manage my skin, along with Pliazon, and some Tropic products … and then morphine to help me sleep at night – the Zopiclone is currently benched. Beautiful bed = mostly good sleep too (with an audio book (that I know the story well of) to drift off too)…
I guess we could say that the first few treatments have been trying to deal with big side effects, and now we’re dealing with those that impact upon quality of life…
The more side effects can be managed, and the more decent the prognosis is, the more this improves my chances of getting back to work … not sure how soon – thankfully I am entitled to full sick pay til mid-January. I spoke to Occupational Health the other week, and she didn’t want me rushing back, wrote a letter that said I’m not fit to work, though indicated within the call that if I feel like working on e.g. bids, my book, anything with not too much pressure, but adding meaning, to try and see! I’ve another call with them towards the end of October, so signed off til the end of October now, potentially through til Dec/Jan – we’ll see (the one small silver lining of this is I’ve not had to deal with this crazy start of the academic year within COVID conditions!).
I’m trying to find out where I stand with pensions – I have 2 small pension pots, which I can only access if I declared as ‘of ill-health’ – and there are 2 levels of payment, neither of which are really enough to live on … but then if I find I have a short prognosis and can’t manage work, I guess I have to consider it. As the Macmillan nurse said, try and find out where you stand … it shows what a mess ‘academic precarity’ has done – I’m finally on a decently paid/permanent job, but have years of short term, part time, contracts – so my pension pot is also small 🙁 Anyway, I’ve a ‘Welfare Call’ with work tomorrow, because I’ve now been off work for over 2 months, so hoping that will be helpful, although I’ve kept in touch with senior managers at work in more informal ways:
The purpose of the meeting is to discuss your current state of health, occupational health referral and to explore with you any assistance that you may require. It is also an opportunity for you to ask any questions on the Managing Absence procedure or any other concerns that you may have. The aim is not to be intrusive but to manage your absence effectively and assist wherever possible to enable a return to work.
Anyway, that probably brings everyone up to date…
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.