With a little knock on the door this morning, in came Dr. Fedorenko, wheeling a little trolley behind him. Either his knock-out sleeping pills are still working well, or he’s a little early.

Yup – about an hour earlier than I expected (or remembered), in he walks with his wheels of steel. He lines up the machine and raises my bed height for a better view of what’s about to happen. No time for a shower – I’m getting my tube lines wired up from my neck while Anastasia makes sure I’m comfortable for my Lennon-esque bed sit-in. She makes me a coffee and hands me every possible gadget and cable I could need.

A few squirts of alcohol rub later, the machine spools up – pretty little lines of crimson making their way through the tubes, like one of those fun drinking straws. A nurse hangs a long bottle over the side of the bed.

“Five hours,” she says.

Suddenly, the strong coffee may have been a mistake.

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The Collection Begins

After a few pleasantries, okays, thumbs-ups, smiles – they leave me to my devices. I lie back, thinking just how amazingly relaxed I feel. Leading up to this trip had been non-stop – fundraising, working, meeting people, getting ready. Just laying here is exactly what I’ve needed for a long time.

Bliss.

Even though the machine took my blood twice around to be filtered, I didn’t feel a thing. I just lay there, kept up with messages, listened to a little music… all I needed was some oils and lemongrass, and I could have easily been elsewhere.

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Five Hours Later

Dr. Fedorenko came back in, inspected the bag of cells, and said confidently that it looked a good colour and consistency.

Job’s a good’un.

Now, for that shower I’d been hankering for.

“Give us a little time, and we’ll have the numbers for you,” he says.

Once I was showered up, a couple of the lads from the ward asked how it went. Having no previous experience with this kind of thing before, I told them:

“Yup, good. Comfortable. No dramas – and none of the bone pain I’d heard about!”

“What? You only managed one bag of cells?”

Sods.

Fortunately, Dr. Feders was quick on hand with a big smile and a hug, announcing…

THREE MILLION CELLS COLLECTED!!!

Nailed it!!!!! 🙂

2.9 from the other lads. Ahem. 😉

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Ending the Day Right

Just as I was considering settling in for the evening, there was a knock at the door.

“You ready yet?”

Haha – I guess the lad had a great idea but forgot to tell anyone else. Ten minutes later, we’re both sat in a restaurant, clinking a good Russian beer to end a good day.

Na Zdorovie! 🍻

Jen heads home

So, Jen went home last night. There was little point in her staying, really – I’m just being dosed up with steroids. Soon, I’ll be on chemo, then in isolation, when visiting should be avoided anyway. If Jen went home to keep things running back there, time would no doubt fly far quicker for her. It made sense. She’ll be back in no time for the last week.

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Technical support

As the lift doors in front of Jen closed, I started feeling a little teary. I don’t normally – but the thought of not seeing her for weeks while undergoing a major procedure did get to me a bit.

Not long after, I got a little text saying she’d gotten home okay and that the cats sound like they’ve been well looked after. Then, a little FaceTime call from Jen – she doesn’t normally like the whole video thing, so I thought, aww, nice – she wants to see my little face before bed!

Silly me.

Turns out the TV was playing up, and she needed to know what buttons to press. Charming! Naturally, we got BBC Casualty playing once she stopped pressing the buttons I told her not to. 😉

“Awww, I really am going to miss you.”

I know my place. 😉

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The line goes in

Got woken up by a big smile from Dr. Fedorenko at 9:30 am as he walked into my room. His sleeping tablets are just the best – I’ve been sleeping through everything and actually waking up feeling refreshed. Sleep like that, I just don’t get anymore. Something I really hope returns post-treatment.

Dr. F reminded me of my day ahead – Hickman Line / Neck Catheter placement in the morning, followed by another steroid drip. This time, taking the new neck line for a spin.

Naturally, the line wasn’t something I was looking forward to – a long pipe down the jugular for easy fluid taking and going in. But if it saves multiple jabs, so be it. I’ve had a swab shoved far up my nose – I can do this!

Actually, the placement wasn’t bad at all. Done under local anaesthetic, I felt the odd pinch, but little more, and it was finished within minutes. Followed by an X-ray to confirm the job was a good one.

I’ve had it in all day, and honestly, it’s no more annoying than a slight crick in the neck. Less movement than usual, as expected, but you quickly get used to it.

I’ll let you know how the sleeping goes.

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Stem cell collection time!

And finally – tonight is the last of my G-CSF shots to get my stem cells moving, ready for extraction tomorrow! My new neck line will really come into its own.

Exciting times. Can I get them all collected in one day?

Wow – day three and the last of the steroids. Corr, my neurologist would be having a hissy fit if he knew – he never gave me anything of the sort, no matter how much I pleaded.

How do I feel? Actually, not too different! A little extra jittery, needing to go to the loo more (and urgently), but overall, comfortable. Twice an evening, I’ve been given late shots of G-CSF – a drug that tells my stem cells to leave my bone marrow and enter my bloodstream – and I still don’t feel any different.

No bone pain, which I’d heard about, but I’m laid out on my bed, writing and editing on my laptop, perfectly happy.

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A Slower Pace

Life, work, and fundraising were just so manic before leaving for Russia. Now, just sitting here, relaxing, I couldn’t be happier.

It actually feels a little holiday-esque – I’m so well looked after, everyone is so friendly, and there is sooo much food. (I’ll talk about food soon!).

Yesterday was much of the same – steroids and jabs – which meant I had a few nice hours out of the hospital with Jen before she left for home today. We grabbed something to eat, chatted, and slowly walked back.

Then, as we approached the hospital, this happened…

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A Moment of Kindness

(Taken from Jen’s Facebook post:)

“On our walk back from the restaurant, we were stopped by an elderly gentleman outside the hospital. At first, he walked by, looking at Alex struggling to walk… then he turned around and came back to us. He stopped Alex, and with no English spoken, took his hand and started gesturing to Alex’s legs, his stick, and then upwards. It was clear, from the tears in his eyes, that he was wishing good things for Alex… Lovely that, from a city that has seemed so intimidating, we were wished well by a total stranger… Now, you wouldn’t get that in London!”

It was a really lovely moment – just a shame we couldn’t understand him fully.

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Jen Heads Home

So, Jen has left to go back home for a few weeks.

I don’t do tears… but once she left, I couldn’t help it this time. There’s no one better.

I’m pleased Jen’s going home – time will fly by much quicker for her, and I’ll be home before she knows it.

Spending the night at her hotel, the construction and cars doing burnouts outside through the night were so noisy – she’ll be pleased to be back in her own bed.

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Sleeping in the Hospital

Like my night at the hotel, I’ve been struggling to sleep at times in the hospital too – but not because of any noise (it’s actually lovely and peaceful here). Maybe it’s the thoughts about the treatment?, what comes next?, or just the fact that I’m in a strange place?

That evening Dr. Fedorenko suggested a sleeping pill. I popped it down when I was ready, Hmmm just as I thought to myself that it wasn’t working.., then… [gone]!

Slept right through to 9:30 am – when normally, I’d be woken by the light at 6 am.

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That Apprehension…

I actually have none – none at all.

Everything here is done at a lovely pace, and talking to others who are a week or two ahead of me, they don’t look ill considering they’ve had a large blast of chemotherapy. They have smiles on their faces and seem to be taking it all in their stride.

Dr. Fedorenko has spoken before about how he’s refined his treatment over the years – and honestly, as far as chemo goes, he’s nailed it. I haven’t heard of a single person here saying they’ve needed to vomit.

As I’ve said before – I’m totally sure I made the right choice coming to Russia.

I couldn’t be more relaxed, fed, and well looked after.

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Big Day Tomorrow

Tonight will be my last two jabs of the stem cell stimulants – let’s hope they’ve done their job.

Then, tomorrow – I get a catheter placed in my neck line. It’s for easy drug administration but, more importantly, to filter my blood for those stem cell troopers.

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Video Time!

I run a little-known YouTube channel called The Palm Off – something I do at weekends to keep busy while indoors. Naturally, my viewers are probably wondering where I’ve gone!

They’ve been so supportive since I told them about my MS, so I’ve made this video update to tell my story and keep them in the loop.

Enjoy!

Doctor Fedorenko stopped by my room first thing.

Fresh out of the shower – that’s twice now he’s caught me in my undercrackers! (He does knock!!! …I let him in.) He does the right thing and suggests he can come back, but there’s little point. He tells me about my day ahead – a steroid drip around 11 am and two further injections to stimulate my stem cells at 11 pm and 3 am. Not looking forward to being woken up for that.

So, I’ve had a lovely day. Jen came around 11 am, we watched some Netflix, and just enjoyed each other’s company. Towards the end of the day, fellow patient Kamil from Poland, who I’ve gotten to know here, came in for a chat. Since we’re allowed to leave the hospital grounds, he suggested the three of us go out for a meal. Sadly, Jen was feeling rather tired and went back to the hotel, so just the two of us went to the local recommended spot.

It turns out he’s my stem cell twin too. We both arrived on the same day and are scheduled to receive all our treatment simultaneously. Interestingly, we both work in similar creative fields, we’re both 36, and we’re very like-minded. He’s a great lad, and we’re going to keep each other company through all this. For someone who’s never been to an English-speaking country, his English is incredible.

Worried about getting around Moscow? …Don’t be!!

Before coming out here, I was a bit worried – foreign country, don’t know the roads, the people, or how much caution we might need. But this is another thing the hospital has brilliantly thought about. They provide a hospital driver to collect and drop off patients, plus contact details for a couple of trusted local taxi drivers.

We’ve been using one guy called Andrew, and he has been truly amazing – a real game-changer for our stay! He arrives quickly, is super friendly, speaks brilliant English, and is very reasonably priced.

Originally, I was nervous about Jen making her way around Moscow using random taxis, so my mum came to Russia too – of course, to support us both, but also for a bit of safety in numbers. Unfortunately, my mum took rather unwell during her stay and really needed to head back home. If things had been different, she might have had to stay, but because Andrew has made our travel situation so problem-free, my mum was able to head home without worry.

For anyone coming to Moscow – honestly, you don’t need to worry. Thanks, Andrew!!

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Partay!

The other day, I mentioned that Dr. Fedorenko threw a little party to celebrate a stem cell birthday – also known as ‘Day Zero’, the first day of the rest of their lives, without MS, and hopefully the beginning of healing.

I’ve included the video below of the ceremony that afternoon. I believe only Dr. F does this – he doesn’t have to, but he knows exactly how much this day means to us soon-to-be MS-free patients. What I’ve really learned in my short time here is that he truly cares – and I don’t say that lightly!

The ceremony consists of a short speech about the treatment, followed by a small gift – an iris flower pin, symbolising belief in the future. Then comes the tradition of pouring the fluid used to freeze the patient’s stem cells onto the floor. It may be simple, but it was incredibly humbling – and I was proud to be there for another person’s Day Zero. Another birth, if you will.

This day, it was stem cell twins Sandy and Berit – congratulations to you both! Wishing you good luck in your recoveries and many years of enjoying life MS-free.

xxx

Arriving back at the hospital after being let out on bail for the evening (figuratively speaking, of course – I’m actually loving the hospital stay), the good Dr. Fedorenko came to my room to meet Jen and I to discuss the test results.

The great news – my heart is fine, lungs and general health are top-notch. Slightly higher cholesterol, but more exercise and having the energy to cook better meals post-HSCT is all part of the plan anyway. My MRI scan did show that my rather aggressive MS is close to becoming Secondary Progressive, so I’m incredibly relieved to be nipping that one in the bud.

My neurologist back home argued that I should wait for the UK to provide HSCT. But according to the NHS, ‘HSCT only works for RRMS’. Reasons to take control yourself! …But that’s a big conversation for another day.

Back on topic… With a positive health check, Dr. F – with a great big smile on his face and a hug – told me I’m good for the treatment. I couldn’t be happier! Naturally, I asked where he thought my physical state could return to. ‘Where you were three years ago,’ he replied. But with determination and good physio, potentially wherever I want to be – saying that healing is a lot to do with the mind.

That’ll do for me!

Starting tomorrow (Friday), I’ll begin receiving steroid infusions and stimulation injections to encourage my stem cells in the bone marrow to make their way into my bloodstream. Round up the troops – kicking MS arse starts here!

I want to finish this post by thanking everyone for their support. I’ve never seen so many Facebook comments and likes on everything Jen and I post – they’re well into the hundreds! Honestly, being so far from home with support like that means the world to me.

To the HSCT groups on Facebook – those hunting the treatment and the veterans too – your advice and cheers are invaluable to someone currently going through it all.

Thank you!

I’m here in Moscow – eight years after being diagnosed with MS – finally about to be given the chance to get rid of it.

So, Monday morning, we got up bright and early, ready to hit Heathrow for around 6:45 am. Had to get all the bags in, and BBC Radio Surrey wanted a live chat around 7 am before I left. Can’t say no – I’m such a media tart these days.

All went pretty smoothly, other than the flight missing its slot. And then, on takeoff, I glanced across at another passenger’s screen just in time to see Eddie Redmayne (The Danish Girl) slipping Bob and the twins back between his legs… That guy never does any role by halves, does he?

We arrived in Moscow and made it to the A.A. Maximov Hospital in good time. We were immediately met by Anastasia and Dr. Fedorenko, who gave a brief rundown of what’s to come before settling me into my room. Big hugs and smiles from both – a lovely welcome indeed.

With just enough time to point my video camera at the television and toilet, edit it up, eat a bit of stew, and then off to bed. (Both video and radio interview below.)

Day 1

Got woken up around 7 am by a nurse wanting a swab of my mouth. Not exactly the best time to go anywhere near that fly trap – maybe that’s why she chose then? Then – ‘Nose.’ ‘What do you mean, nose?’ …I closed my eyes and laid back down, knowing this probably won’t be the worst thing to happen to me this month.

Not long after, another nurse arrived with a couple of pots. I’m guessing she wants some fluids from me. Just as I was considering putting my head back down, yet another one walked in with a handful of empty blood vials. I just laid back, listening to several popping noises as each one filled, shook, and was scrutinised in the light. Not sure what she was expecting to see… Fish?

Then onto an action-packed day of X-rays, MRI scans, and multiple ultrasounds – enough for Dr. F to get a complete roadmap, periodic table, and dipstick test of this semi-functional lump of a body of mine. Far more than my neurologist has ever done for me back home.

Pretty much on the final test, I returned to my room to find my mum and wife, Jen, waiting for me – my entourage, giving me all the support, love, Coke, and Pringles I could need. I told them how I’d been pulled, poked, and pushed in the name of medical science, hoping that was the last of it.

Then Anastasia came back to the room saying there was going to be a little party at 4 pm – and we should all come along. A small ceremony for those who had been through most of their treatment and received their stem cells back. A chance to celebrate their re-birth – their new life. The worst is behind them, and now, it’s about recovering as much as possible from what MS has taken. Congratulations to Sandy and Berit! (From Washington, US, and Norway, respectively.) I’ll post their ceremony video soon.

Then came the best news – all my tests completed, I didn’t have to stay in the hospital that night and could enjoy a night away with Jen! So, we made the most of it – room service and a film. Chicken burgers and chips, and we watched Morning Glory – for those who need the detail.

What a couple of days!!

The tour!

BBC Radio Surrey Bon Voyage Interview