I posted on Friday that I was expecting scan results next Wednesday (28th), but that my nurses yesterday (who can’t interpret/return the results) could see that they were on the system, so emailed my oncologist to ask if I could have the results any earlier. I missed two ‘no caller ID’ calls last night, and another this morning, but managed to feel my phone going off when out on my walk (4km+ today, I started today 2km behind, so that’s 0.9km caught up with)..
Anyway, on Saturday managed to find a table at an outside pub that ‘felt safe’ and met with a friend, Sunday, after Zoom church, went back to Abney Hall with my bubble, and Monday was treatment day… (number 11/18, likely ongoing ‘if working’).
I recognised Dr Chittalia’s voice as soon as he rang, and thankful to him for putting me out of my scanxiety sooner than next week. It’s was a fairly simple call
- The tumour(s) have shrunk – which is the best news (a lot of Stage IV-ers will settle for being a ‘Stable Mabel’ aka it hasn’t got any worse) – any improvement is good. It’s not NEAD as active tumours can be seen, but it seems that the drugs I’m on are doing something positive (despite all the miserable side effects).
- As it is working, we are likely to continue with this ‘until the toxity of the drug is unmanageable’, though we can have a dose reduction (there are not endless options for treatment, so we want to keep the ones that are working – keep working). EDIT: Talking to others, getting 18-24 months on this drug sounds like it seems a good run…
- So 18 weeks is 7th December, but it is most likely that we will continue this treatment ongoing … I have another telephone appointment with Dr C on 2nd December – so no scan promised there, but likely probably January? So, keeping work in the loop about how might be possible to head back to work early-mid January (having made the most of my full sick pay entitlement for once).
- I asked for the scan/report to be sent, and may see if I can see any from earlier (am entitled to them, but worry about making extra work, but if they are helpful…!). I’ve had a quick look at it and in many ways it seems good (not sure I understand it all), but one of my tumours was 8.something-cm – which as I was NEAD last November is frighteningly large/fast!
Call the GP
I’m just waiting for a video appointment on Push Dr with the GP, as oncology team want me to get a referral to:
- ENT (missing nasal hair = bloody nose every day = super sore throat for 4-5 weeks (so far), and since Saturday my voice is largely disappearing. I’m sure on this drug last time I had to be referred to ENT for tinnitus (I also had a bloody nose but wasn’t as severe as now).
- Dermatology – aside from the constant rash/breakouts on my face, my arms/hands have now joined with painful, itchy, peeling rashes… (topical creams, antihistamines, and antibiotics, sometimes steroid cream have been the big weapons here)…
- Low Blood Pressure – over the last 5-6 weeks we have struggled to get a ‘good’ reading from the machine, so end up with a manual reading … yesterday the best reading we could get the beginning of the session was 98/55. I usually drink at least 2 bottles of water during treatment, but pushed to 3 yesterday, and at the end it was 112/66 which is closer to OK, but still…. I do occasionally get those head-rush moments if I move too fast…
And whilst I was writing that, that video appointment happened:
- ENT referral in process (although was confused as to why oncologist hadn’t done this directly), and remember to use the Naseptin I have left over from previous chemos … Otherwise I said I am eating lots of boiled sweets to keep things soothed.. I did remember this morning that I have a Difflam spray and need to check if that is any good (2.5 years after I last used it)… EDIT: Hmm, it expired 04/20
- Tomorrow I can head to the pharmacy (again) for a steroid cream for my arms (on top of the Epaderm the pharmacy gave me yesterday) – we’re starting with the mild version, but if no improvement within a week, get back in touch… and don’t leave Aqueous cream on it (rare side effect?).
- Not a great deal of treatments for low blood pressure – keep the fluids up, add some more salt in (mmm crisps), keep legs raised more of the time (I’m doing quite well on that in my bed, but I might push the base to a steeper angle)… otherwise if it gets bad tend to be hospitalised for IV fluids so …
It’s useful sometimes for me to keep track of where I’m at as we keep trying different things – but getting on top the nausea has been key – so last week was ondansetron for 48 hours (which requires Laxido – chemo may speed things up, this certainly bungs them up), dexamethasone for 1.5 days post-treatment, 2.5 days under consideration for the energy boost (which requires lansoprazole and gaviscon for the associated heartburn, and possibly sleeping tablets for the ‘Dexy’s Midnight Runners’ effect), and cyclizine 3 x day preventatively. As I didn’t feel sick at all last week – we’re trying without the cyclizine (and it’s accompanying sleepiness) this week – and we’ll see! The haloperidol – we found some – but it’s off to the side for days when nausea may hit..
So, what else, sometimes it’s useful to keep track… most spaces in my house look like a pharmacy is gradually creeping in .. trying to find the balance between tucking things away, and not creating extra work in having to get things out several times a day …
- I will be on twice daily (stomach) injections as blood thinners til at least 26th January
- I have morphine, which I tend to take 5mg at night, to help sleep
- I take calcium and vitamin D tablets twice a day
- I have Duraphat 5000ppm toothpaste for sensitive teeth
- I have many different creams for many different things – esp Aveeno, Dublebase, Aloe Vera, Pliazon to try and keep skin supple EDIT: – and treat the radiation burn on my back (3 x day with a long handled foam applicator).
- I was on pregabalin for nerve pain … turned my head to mush, so although I can feel some ‘bruising’ around my sternum, it’s better than the head mush. Amitriptyline has been offered as a substitute (to take one at night = help sleep too), but resisting that this week..
- I managed to come off all my Ibuprofen and Paracetamol that I was on for couple of months post hospital admission
- I am on 30mg of citalopram – was on 20mg for years.. 40mg is still available!
- I have to take cotrimoxazole 3 days a week
- At present I have OTC evening primrose oil, fish oils and glucosamine (had to stop probiotics with chemo) – and some magnesium spray.
- I had to stop the exemestane when I stopped being ‘triple positive’ and became ‘triple negative’ – it works on oestrogen…
- Thankfully, flucloxacillin has finished – for now … as my toe has been dealt with!
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.