The after-party
27 August 2022
Yesterday, after my last post, I took a call from one of my bosses who was kindly checking-in. I told her I was worried the relatively light side effects I was experiencing may be the calm-before-the-storm.
And storm it did.
By midday Saturday I was in the most excruciating pain – I liken it to bolts of lightning shooting through my bones. This is the side-effect of the Pegfilgrastim (aka Neulasta) – the white blood cell booster – the good one! The nurse administering the injection on Thursday advised I may experience some discomfort – like having gone for a big hike one day then having sore muscles the next. Nope. This was more akin to having electrodes attached to my spine, being stretched on the rack, having my body tossed into a frozen lake then plunged into a hot bath. Bone pain is no joke. And because of the cocktail of chemo meds in my body, there is little I can take to alleviate the pain. Paracetamol only. No aspirin or anti-inflammatories.
By mid-afternoon I am literally writhing and moaning in pain. I ring my sister, my aunt, Health Direct, the Rapid Assessment Unit (who tell me to take a hot bath with Epsom salts – despite me telling them numerous times I don’t have a bath ….) At their advice, I go to the pharmacy – she too is at a loss.
My knight in M&S arrives by train late afternoon. Simon sweeps in, gives me hugs, steak, bundles me up warmly in my all-hours Peter Alexander robe and makes it all better.
28 August 2022
The night is just as bad. Sleepless, delirious and in pain. I retreat to the bathroom and couch often. I have lost 3 kg in 5 days (silver lining?!) Simon and I potter through the day and then he takes me … outside! We visit the Kingston Foreshore and Old Parliament House. The roses are yet to come out but the nearly-spring sunshine is glorious. I am weak and slow but Simon is patient and chivalrous. It is pizza for dinner and a 7:30 bedtime for me. Feel like a pretty useless partner right now, we are both struggling. Caring for someone who is sick, tired, grumpy and in pain is tough.
29 August 2022
I pissed myself in the early hours of this morning. I finally manage to get more than a 2 hour stretch of sleep and that’s the price I pay. I’m 50 and I’m changing my own sheets because I’ve lost control of my faculties. Humiliating.
I am seriously demoralised at the prospect of doing this all again in 2 weeks’ time. I try for little joys: today I bought some strawberries, hummus, delicious yogurts – in hope of improving my gut health. My entire digestive tract has only two speeds right now – fast, slow. It is tempting to not eat at all but that just makes for weakness and hangries. Sigh.
I think I might have nits as my scalp is constantly itchy. I know it’s not nits but rather the hair follicles becoming increasingly sensitive as the chemo kicks in, possibly the ominous start of my GI Jane journey …..
Simon left for Melbourne early this morning. I had a little cry, then went back to bed to feel sorry for myself. I miss him – even though we’ve worked out he is not the best nurse and I am an even worse patient. But there is nothing better than a snuggle-huggle to make things all better.
My bc specialist nurse rang late afternoon after I had left a message detailing the pretty-bloody-rough weekend. She was understanding and kind (man I love these people). The side effects I experienced from the Pegfilgrastim were extreme. She told me the doctor would provide stronger pain relief and sedatives to get me through the next round. In hindsight, she said I could have gone to the ER but to be honest, I kind of thought what I was experiencing was ‘normal’. Considering I am due to have another jab in 2 weeks’ time (am going into a cold sweat just thinking about it), we need to get the pain under control.
30 August 2022
I’ve just typed 30 August 2021. Wishful thinking? Make me wonder … what was I doing on 30 August 2021? According to iCloud photos, we were in our second lockdown and I was taking pictures of sunsets, drawing chalk fairies and posting funny pictures of duck footprints in wet cement. Not in a million years would I have thought a year later I’d be sitting here in a chemo fog.
Walked down for coffee and muffin today. Only a small coffee these days and even then I don’t finish it. My favourite muffin is Raspberry and Pear – gently warmed with lashings of butter. I pay the price by then taking at least ½ an hour out to visit the porcelain bowl (head up not down). Being a bit old-fashioned, I have an aversion to taking my phone to the toilet. I find it kind of yuck to think of doing-your-biz so close to a tool that you then put right next to your face. However I didn’t count on getting cancer so after keeping my shitter device-free for many years, I’m now bending the rules and taking my phone in – given it is for the long haul. I catch up on the news and take the time to do a bit of browsing …. recent searches/sites include (I kid you not):
* soft women hat cap cotton chemo
* how to make a crochet magic ring
* mucositis
* britney was broken i’ve been broken and it’s horrible
* large ice seizure
* how long effects last pegfilgrastim
* patience
* high fibre foods
* man of the hole brazil
* canberra weather
* john diamond cowards get cancer too
* funny cancer movies
Managed a few hours work today – and even an online meeting! Was nice to see good people doing their thing – and even squeeze in the odd laugh. May even go into the office tomorrow if I feel brave enough – and can be bothered getting dressed – and putting makeup on – which is harder than it sounds(!)
