Day 2 – Chemo – Hit ‘em on the Beaches!

I wake up feeling good – ready to take on another day’s battle with the insubordinate T-cells. After all, the previous chemo infusion may as well have been water for how easy it was to take.

Today, I’m planning to take things a little easier. After making sure I was online and caught up with all the amazing messages I’ve been getting (big love to all!), I decide to let the chemo sink in and allow my body to plot its internal battleground.

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MS Fights Back… Poorly

Getting up to go to the loo, I can tell the chemo has heightened my MS symptoms – it’s like the MS is counterattacking.

“I’m still here!!”

I take myself to the loo a little more carefully than usual – a bit dizzy, but totally fine. No biggie at all – it was a pretty poor attempt. Like throwing a rock at the Chemo Tank.

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Chemo, Wires, and Unexpected Visitors

I get back into bed, crack open the laptop, put on an easy film (Independence Day), and start drifting off. Then suddenly – wha?! I feel tangled in wires – proper spindly little ones. Where?! How?!

I open my eyes, half expecting to see Dr. Fedorenko trying out some new experimental treatment on me. Nope – all good.

Alright, time to drift off again. …And then, next thing I know, a group of elderly men walk in and start pointing at me.

“Who’s this?”
What do you mean who’s this? You’ve just walked into my… Nope. …Open eyes.

What IS going on?!

Ahhh – this must be what Mindy Watt was talking about in the Facebook UK HSCT Group – the chemo hallucinations. She saw little aliens. I get wires and old men. Still bizarre, but easy enough to handle.

“Right, come on, people – I’ve got a body to clean up here, leave me be!”

Just as I drift off again, a wave of panic washes over me – I see water flooding up from my laptop keyboard! A moment of panic, my lifeline to the outside world.

Ha! You’re not having me this time! I open my eyes – dry laptop, all good. And beautifully, just at that moment…

💥 Will Smith punches an alien square in the face.

“Welcome to Earth.”

Poetic timing, Mindy.

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A Little Too Ambitious

After some actual rest, I get a knock on the door from another patient. “Fancy getting out for a walk?” Yeah, why not? I was feeling great after that sleep – bit of fresh air and all that.

Unfortunately for us, Starbucks haven’t popped up on every corner here yet (small mercies), so we only had one option in mind – a place half an hour away. Now, my walking isn’t great – it’s definitely not half-an-hour good. An intelligent thought here would have been, “Maybe we should rethink this?” But no – we powered on.

“We’ll get a cab back.”

We arrive (very comfy chairs!!), have a good chat, eat some food, and drink – being mindful of our chemo-sensitive stomachs.

Then – bad planning. Our cab wasn’t available.

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MS: The Invisible Disease – The MS Strikes Back

**Caution urged.**

The walk back was cold.

Luckily, I had a big jumper keeping my upper body warm, but it’s my legs that really suffer in the cold. They go full Tin Man. Combine that with reduced sensation below the waist and, well – not fun.

On the way back, we bumped into Anastasia, who was walking home from the office.
“You haven’t seen us, right? 😉“

By the time I got back to my room at 9 pm – I was very, f*cking tired. (Apologies, but called for!)

To make matters worse, my lack of sensation below the waist meant I had made a small unknown (but contained) mess of my underwear. No energy, cold, no muscle control, no feeling – sh*t happens. Energy-wise, I was running on fumes. Somehow, I got myself into the shower, cleaned myself down, got into bed clothes, and tried to relax.

Hoping the exertion didn’t have lasting effects. Borrowing tomorrow’s energy comes at a very high premium.

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And Then…

Lying in bed, needing to settle from the shock of it all, I try to calm myself to sleep.

“Woosah!” +  “Ching ching!” (Imaginary finger cymbals)

**Double caution – Careful now!** 

Less than half an hour into getting some rest… I feel an intense pressure in my gut. Wow. I don’t think I’ve ever felt anything like it. It all happened too fast to be painful.

That was the chemo diarrhoea I’d heard about. I’ve been poorly before …But that was something else.

There’s only so much loo roll can do, so back in the shower. Once I’m out and dressed by this point, it was around 2am. I won’t swear again, but I was very tired. And a little worried about day three of chemo. After all – the drug builds up. The nurses were wonderful and checked to make sure I was comfortable again. Just a shame I then had the most broken sleep I’ve had in a long time.

Half asleep, conscious of every bodily movement, needing to pee every half hour, finding that I was frequently having many little wee slippages too.

This is what happens when a dysfunctional nervous system is at its most disobedient.

I’ll leave the details there.

But many MS sufferers will know exactly what it’s like – when your body is at its lowest, it just won’t look after you.

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Dr. Fedorenko’s Response

I spoke to Dr. Fedorenko this morning about my night. He was far from phased – which was reassuring.

Also because I knew this was more down to overexertion on my part, rather than the chemo itself – it just added to it.

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So Much for ‘No Fear’!

There’s me, wanting to show how little there is to fear about this treatment… And I go and wreck it all for a ‘coffee’ out.

I could have kept the information to the smooth, but I wouldn’t be doing a service if I didn’t share this – even if it wasn’t my proudest moment.

But all is absolutely good again.

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Final Thoughts

This blog exists to give fellow MS sufferers an honest, day-to-day understanding of what to expect here in Moscow.

Yes, MS isn’t pretty – but this is the reality I’ve lived with for eight years. And as always – I’ve made this blog fun and colourful, because that’s what I do. 😉

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Day 3 – Chemo – Getting to the Bunker

Today is a selfish day. Yesterday, I felt great – until I went out.

Today, I’m keeping it low-key – and now that my body has settled, chemo round three has been smooth.

No aliens.
No wires.
No old men.

Just a little more tired – but no nausea, no headaches, and no regrets.

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Day 13 – Perspective

Now day 13 into my treatment, I’ve had steroids, stem cell stimulants, tubing, drips, collection, chemotherapy – and I never would have imagined I could feel this comfortable!

Honestly? An ingrown toenail would have been more dramatic.

There I was, thinking I’d have to put on a brave face for coming to Russia – but the team here has made me so relaxed, I don’t know what any of the fear could have been for?

Many people receive chemotherapy for so many reasons – but for me, it brings relief. I’m very fortunate.

My day 13 has been as good as any other. Just don’t give MS a chance to spoil your day – I wish it hadn’t tried to spoil mine.

After all that thought and expressive writing… time for some sleep.