So, it’s day four of cycle one. And so far, it’s been a mixed bag, mostly because there are two parts to the story – firstly, the ongoing battle with dexamethasone and the side effects it’s having; and secondly, adding chemo to the mix.
Dexamethasone – the frankly horrific reality
This stuff really is the devil of all drugs. The biggest side effects I’m experiencing from it are swelling and emotional instability and the two go hand-in-hand. I know I sound like a broken record on this, but until you see it, it’s hard to really appreciate just how awful this is. But I promised to share the good, the bad and the ugly. So today I’m going to show you.
The swelling – brace yourselves people, this ain’t pretty
The truth is, the swelling goes up and down. There seems little pattern and it can change within hours. I can wake up and feel fine, then blow up like a balloon before I’ve even had breakfast. Clearly this then affects how I feel about myself for the rest of the day. Just putting on a hat to go outside makes me look (and therefore feel) horrendous, get upset, just want to hide and/or cry (usually both), let alone the fact that I can’t do up my jeans or coat…
The emotional rollercoaster – Kari is a saint
At this point, the second side effect kicks in, as I start to question how come it’s worse when I’m down to 5mg of dexamethasone, yet it wasn’t this bad when I was on 8mg or even 16mg?! It’s getting worse, not better? Is that because I’ve started chemo? But this is only day four of cycle one. Jesus, what’s it going to be like in cycles two and three…?
Kari has been with me this week, and I honestly think even she has been shocked by how bad this is (either that, or she’s so sick of my constant mood swings, crying and complaining, she’s just nodding automatically now!) But she last saw me on August 18th, the day after I was admitted to hospital, and I’ve changed so much in the two months since then, both physically and emotionally, that she probably doesn’t recognise me. It’s certainly a very different scenario to when she came over to support me through chemo two years ago. I’m far more difficult to live with, much more volatile emotionally, and a physical mess. But just like mum and dad, she’s still being amazing, and having her support through this is something I’ll never be able to quantify, but for which I’ll be eternally grateful xx
And the chemo?
I’m tired, already. And that’s hugely affected the stability in my arm today. The questioning and anxiety that’s then caused has put me back on the emotional rollercoaster. And knowing this is just my first cycle, I’m scared of how much worse that’ll get.
But it could be much worse. I could be throwing up, confined to the couch, struck down by fatigue and wallowing in self pity. But instead, I’ve been out in the sun, shopping in the Nine Streets, managed to stop Kari spending a fortune in Scotch & Soda (Tom, you can thank me later 😉 ) had lunch out, met Ross for coffee, and managed to walk all the way home.
Two of my friends here in Amsterdam have this lovely thing they do at the end of each day – they share three things which were good about their day. Sounds simple, right? But I love it, because it makes them consciously think about positive things.
I do this too now when trying to give friends a boost – just like I did with Ellie when we were in the VU waiting for surgery. But at that point, I was still feeling very positive myself, which makes it pretty easy to say/do. But a lot’s happened since then, and I’ve struggled to find that positivity in myself more recently. So when Kari and I were out for lunch today, I dug deep to try and find it.
My first ‘good thing’ was that it was sunny today… always an easy one to kick off with, grabbing that quick win, low hanging fruit etc 😉
My second was that I haven’t had any nausea or constipation while the IV chemo has been in my system. On days 1-3, I had anti-sickness drugs and magnesium to help offset these, but today (day 4) was the first day without that support, and so far still nothing.
But when I thought about it, what actually felt ‘good’ was the fact that I was thinking about what I’ve avoided, rather than what I do have (fatigue) – I was focusing on the positive, not the negative. And for me right now, while I’m struggling to find my glass half full mentality, this felt much more of a win to me. So my three ‘good things’ for today?
- It’s been a beautiful sunny Autumn day, and I’ve been able to enjoy that.
- I’ve focused on the positives of the first four days of chemo, not the negatives.
- I’ve got an awesome group of friends who are putting up with ‘not Rebecca’ right now and supporting me regardless.
From tomorrow (chemo day 5) my immune system is likely to start to drop. If last time round is anything to go by, it’ll start to get harder for a few days now, as my body has to fight back ‘unaided’ before finding its strength again (around day 10). So I’ll update again in a few days as we see how that goes.
In the meantime, I’m hoping that my arm starts to find its strength again, the swelling goes down, and that those things allow me to rediscover some more of that positive Boxyness I’m so desperately trying to hang onto! It is in here peeps; I may not be able to show it right now, but it’s there and I’m NOT letting it go!
Sending you hugs galore lady xxxx
Yoo hoo! Just read blog31. Sounds horrific but you are maintaining your confidence and humour. Like the positives for every day – great idea for focus. Haven’t heard recently from your mum and dad but we think they are back in the UK. Are they due to visit again soon? Love and hugs – Jos and Helen XX
Hello! Yes, they’re back in Blighty – Papa caught a cold so I revoked their residency 😉 But they’d already booked a flexible ferry ticket, so mum’s back is undoubtedly sitting my the front door ready to go… 🙄🤣
Thank you both for all you love and support – give me a few more months to kick this thing into touch, and I’ll see you in the Nellie for a pint of the good stuff! #itsonthebucketlist 😉 xx