33. Day 16 in the Big Brother house…

In best (but still terrible) Georgie accent

…and Boxy decides it’s time the gloves came off

Having spent weeks coming in and out of my flipping cave; feeling like a yoyo trying to get below a 4mg dose of dexamethasone; physically broken by the impact of the aforementioned drug on my body; emotionally broken seeing it change my character, strip me of my positivity and batter my mental strength; finally starting chemo and trying to predict how the side effects will affect me… 

AN: see what I did there?! Cognitive rehab appears to be working, about which I’m geekily excited, can you tell?!

...I’m now into rebuild week, which means I have seven days without chemo and a chance for my body to fight back before we go into cycle two.

AN: that’s all one paragraph – utter fail Rebecca!

So how do I feel?

Well, if you’d asked me around 10am this morning, you’d have found me in tears because, in the last seven days, my hand and arm seem to have taken two steps forward and three steps back. It feels like the chemo has just undone the progress I’ve made retraining my brain to get my hand and arm to work again. And that’s been heartbreaking. I was OK for the first few days, telling myself that it would come good again once I got into rebuild week, but it hasn’t. Yet…

As you’d expect, I’m tracking my progress every day on my spreadsheet… both in terms of dexamethasone reduction and chemo impact… using a RAG status… with a baseline against which to compare… shall I just stop there and get my coat?

AN: for those who are interested, a copy of my beloved spreadsheet is available on request 😉

But thanks to a colleague from work giving me a reality check, telling me to stop being so tough on myself, and reminding me to focus on the progress I have made; a few more small wins which got me to my favourite café in town; and an afternoon there drinking far too much coffee whilst reading a book written by one of the most inspirational guys you’ll ever hear of… I’m now feeling much more like my normal self 🙂

And the chemo?

So far, so good…

AN: if you’re squeamish or don’t like the thought of chemo side effects, skip to the next section…

So far, I’ve managed to side-step a whole heap of nasty shit – infection, fever, anaemia, nausea, constipation, diarrhoea… I’ve had a pretty constant headache, but nothing debilitating that paracetamol won’t sort (the Dutch answer to all ailments!) The only other things that have really hit me are fatigue and boredom.

The fatigue made my legs ache like hell for a few days, but with Nurse Kari here looking after me, I still managed to get up/down the six flights of stairs to my apartment every day, even if only to walk to the end of the street and back. And the emotional turmoil of how it set me back with my hand/arm meant there have been days where all I want to do is cry. But that can be managed – I just need to keep reminding myself that my time will come. The fact that I’ve retrained my brain once means I can do it again, and once chemo is done I’ll be fighting back to rebuild my body.

As for boredom, that just leads to brain freeze from over-planning and procrastinating over how to fill my day… the order in which to do things, based on where I can walk to without overdoing it, avoiding crowded places when my immune system is low, deciding which trains, busses or trams I can use with limited mobility, and avoiding germs, ignorant idiots or too many tourists…

But if that’s all I’ve got to worry about, I reckon I’m getting off lightly!

As I see it, chemo’s a necessary evil in killing this thing. Sure, it’s a nasty process with some pretty horrid side effects, but we’re doing it for a reason and, if it does the job, it’ll be worth it in the long run. So I don’t hate chemo; I try to turn it into something positive by making it light-hearted (even fun?!) with the guys in the hospital and the friends who come with me. And whatever it throws at me in terms of side effects, I’ll deal with as best I can, with the incredible support and strength I get from you lot and my awesome besties, who fly over to look after me.

So in contrast to 10am this morning, I now feel positive, strong, and am focused on the things that matter.

Rebuild week

I’m at the hospital in the morning for blood tests, then seeing my Oncology nurse to check the results and see how I’m doing after the first cycle.

This surprised me a bit – last time they checked my bloods on day one of chemo, to give my blood the maximum possible time to bounce back before making the call on whether I was strong enough to go again. This time, I’ll only be two days out of chemo, with five more days left to recover. But my team feel they’ll get a fair enough idea, and if there’s any doubt they can always test me again next week.

I’m happy with that though – having my blood tests tomorrow means I can validate how I think I’m doing. Last time round, going into my penultimate cycle of chemo, I went to the hospital feeling super-strong and pumped-up to go at it again, only to be told my bloods were too low. I was gutted as I thought I felt great, and the delay meant I missed my best mate’s big birthday. So despite how I feel in myself, my blood cells and immune system may have other ideas…

But I’m not focusing on that – I can’t influence it. Instead, I’m thinking about the things that matter, the small steps and big wins.

1. My walking is getting better / legs are getting stronger
   Despite the fatigue during the first two weeks, my walking is already bouncing back. I don’t use my stick unless I go out, as it’s really now more a visual aid (to warn people around me that I’m wobbly, and tell cyclists that I can’t just jump out of the way if they ring their bell at me) and to give me the reassurance that, if I get tired or find I need to climb stairs, I have the support I need.
2. Today, I got on a big tram
   Sounds simple, but the steeper steps and extra barriers by the doors make these trams harder to get on/off. But if I avoid rush hour, take my time, and am patient enough to wait for the next tram if there are no seats, I now know I can use these trams. This makes more of town accessible (seriously, I’m now on first-name terms with the staff in every cafe within a 750m radius on my apartment and the #3 tram!)
3. I have an escape plan
   Assuming my bloods are good, tomorrow I’ll get the overnight ferry back to Blighty, get some Yorkshire air in my lungs, and give Mutley a punch where it hurts. I won’t have the energy for my usual whistle-stop tour of catching up with everyone, but a good dose of entertainment (#mumisms) and random insight (#lifelonglearner), a change of scenery (cafeswithin a 750m radius of the Minster), stocking up on vital consumables (Vegemite, Rafi’s, Betty’s, UK Netflix content) and a decent Sunday roast, will all be great medicine.

Let’s just say, I’m praying for strong blood tomorrow…

#letsdothis
#rebuildweek
#mytimetofightback
#focusonwhatyoucaninfluence
#smallstepsbigwins

#BoxyOut