So, Tuesday last week, after 1.5 days on the chemo ward, I had completed my first round of docetaxel, perjeta and Herceptin. My cousin had headed back to London, another friend dropped me off, and the PJs went straight on … I was exhausted but also hyper on the steroids – so, as I have continued to do, for the rest of the week, taken Zopiclone each night which seems to give me a good sleep (I know it’s not ideal, but then neither is pumping toxic poison and another cocktail of drugs into your body).
On Wednesday I was still high on steroids, so my friend Natalie and her family came round – she and Preston do public social media, rest of family doesn’t:
They helped me put a few more pictures up in my house, which when you spend SO much time in your own house helps it all feel more like a place of sanctuary – plus I’ll think of the person who helped me every time I look at the item! I still think of a friend who gave me a dishwasher in my last house every time I use the new one in this house … yes, I’m a very people focused person!
On Thursday, my face was still steroid red, and spots popping up all over the place, plus the nosebleeds had been going for 2 days (nasal hairs clearly gone), and I’d had to start the stomach injections (they help regrow white blood cells, so give me a greater chance of not being admitted to hospital):
On Friday I made it out for a walk very early – sleeping tablets means going to sleep early – trying to keep up with at least one lot of fresh air each day, even if it’s only 1km round the block
And then my friend Helen (who’s been through breast cancer herself, and is looking at setting up some kind of physical chemo buddies scheme for people living on their own/single parents, etc.) came with some food (McDonalds vanilla milkshake, turkey sausages/mash/veg, rice pots, banana/bio-free yoghurt, small piece daughter’s cake), watered my plants, emptied dishwasher, etc. so I could crash on the sofa! She took this picture:
By Friday night into Saturday the muscular aches and pains had truly kicked in (not sure if that the docetaxel of the filgrastim injections to be honest):
Helen came back to see me with another Macdonalds milkshake and some more food (chopped melon, cheesy pasta (which I added some tuna/sweetcorn to) and some more veggies). I’ve also used up some baked potato/salad, some ginger biscuits, toast mostly.
I haven’t done a jigsaw puzzle for, probably 30+ years, but I have been given 3, so took the most recently given, and also some Willy Wonka on the iPhone game (this is alongside Netflix, iPlayer, Amazon Prime, some social media chit-chat, and a few books (see my Goodreads):
I will say that by today I have run out of steam on the jigsaw, so very happy for any help from others, but I’ll pick it up again at some point!
Easter Sunday I was really happy to be able to follow lots of Easter events via social media (you can hear my friend Bryony’s sermon), and particularly love this painting by Hallowed Art:
By the afternoon I felt a little better, and went out for a longer walk (quite nice having walks in the sunshine, rather than snow showers, as per my last chemo!):
And can I say I just love the text with this Instagram on why can you please not talk to me about your diet?! Oh, and isn’t #LineofDuty building up well…
Onto Bank Holiday Monday (honestly, I mostly don’t know what day it is), and my friends Emma & Yee Gan came to see me with brunch en route to the Lake District – and yes, my mouth is a horrendous mess of mulch by this point, and my stomach has gone to town, but – need to eat (chemo is a time even medics don’t want trying to lose weight!):
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Lovely visitors – bringing brunch – have a lovely holiday guys!! #busylivingwithmets
Most of my energy had gone by the afternoon, so I went round the block before lying down with some chick lit:
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Lovely visitors – bringing brunch – have a lovely holiday guys!! #busylivingwithmets
Yesterday I had a bit of energy left, and did lots of those small jobs I’d put off for ages… helping get my desk clear, ringing DFS re sofa stains, ringing USS re what should I know about my pension (I hate phone calls, give me email every day), scanning some things in, doing a bit of touch up paint, couple of parcels to the post office, deleted many work emails so tomorrow I can action some – and discovered that I have a ‘Revise and Resubmit’ for my article I submitted before Christmas on WW2 VD posters, watering plants, doing my washing, watching a bit of #missiodeidigital
*life does not stop for cancer, so if you’re ever around and want to put things away, water plants, weed, etc…
Also got some nice suggestions on things to try and eat (I’ve been having a lot of acid sweets/pops) with chemo mouth:
When your mouth feels horrendous as as a side effect of #chemotherapy and you try finding food that will cut through it all … pic.twitter.com/GgLjLTeARG
— Dr Bex Lewis (@drbexl) April 23, 2019
Rachel Riley from @LifeKitchen has sent me a recipe for Harissa Salmon which I just need a couple more ingredients for, so can get them on the way home! Also checking out the pineapple tacos… not a huge fan of actual pineapple – how can I get non-woody pineapple?!
Also yesterday, my contribution to an Audible series on The Christie came out, and:
I’ve been shortlisted for a ‘Cancer Research UK, Patient Involvement’ role on the ‘Cancer Insights Panel (Research & Strategy). It’s largely a voluntary role although expenses and a small £ are given for each meeting.
I have a telephone interview on Monday, to talk more about my application statements (cancer experience; why interested in role; good comms skills; able to give constructive feedback; group work; how up to date with cancer (social media groups); which areas of cancer particularly interested in (digital culture, selling the vision).
I need to look back at CR_UK recent obesity campaign – ‘advantages-disadvantages of such a bold campaign’. I’ve already said I wasn’t particularly a fan, so now thinking more about what others LIKED about it, and Beyond Chocolate et al, what did we find problematic with it! This is the same as I would do, assuming allowed to crowdsource thinking – about any meetings involved in!
This post seems to be an important one to share related to it:
I don’t have a problem with what the research may show, but I wish the campaign had been more of a #ThisGirlCan type one, rather than reading rather as ‘you’re obese, that’s your fault, therefore it’s your fault you got cancer, and we’re not actually going to give you any clues as to what do about that’ (though I think current diet-focused medical advice wouldn’t have helped either!):