Thursday – Day +09
Woke up this morning, the usual broken sleep. I’ve only been here nearly four weeks, and only now thought to give up thinking about it – it’s just part and parcel of being away from your own bed surely, still only a few more sleeps to go.

So, I hopped up out of bed…

Wait. Yes, …I did! Suddenly gone was the half-horizontal bum swivel, slide and then lift up. The old muscle memory is showing, I just throw over the cover, raised my knee’s over the side of the bed and stood. I even had to go back and do that again, got myself in and covered, threw off it off again and just hopped up. Amazing!! …Quick someone throw a football at my feet now!!!

Ha, okay not quite. But immediately thought wow – of course that’s new (again). What else is possible, my leg positional awareness has returned. In front of the long mirror, I squatted down, it was neat and controlled, up again, down. JUMP!!! I did it!! I didn’t then wobble, or look unsteady. Albeit it was only 2-3 inches off the floor, but I couldn’t do that before!! …Right, Loo!!! …that’s what I actually got up for.

Wow, this really is happening, not wanting to get too ahead of myself, in nine days my body has rediscovered some muscles, the legs aren’t actually just for propping up on. They bend, they propel. I want to leave the thought’s there, but pipe dreams of light jogging and beyond are suddenly feeling well within my grasp.

Sadly just the night before as I was getting ready for bed in low light, I did catch my physical profile in the same mirror. Normally I face mirrors, straighten a t-shirt, new jeans, etc. But never my side. Well I was shocked, I think I welled up a little. In low light, almost black and white, saw what the MS had done to my body in eight years. I used to have a good body, I played sports, I had shape – I had a backside! Last night in my small underwear I saw something normally seen in history textbooks looking back at me. An almost perfectly straight line from the back of my ankles to the neck. If I wasn’t here in Moscow I think I would have despaired. My feeling this morning is now of increased hope and determination to bring it all back.

Regular as clockwork Dr Fedorenko knocks on the door with my morning blood test results. The how are you’s? Handshakes, big smile. I love this guy.

Congratulations!! You’re Leukocytes are now average, basically the same as anyone else. They are now 5.81 Million. (normal average 4-10)

Brilliant, I now have a fully loaded and in place immune system, and I’m told that I’m now allowed outside too! What an amazing start to the day, I have some legs awoken and now some outside air to digest. I’ll have to wear a mask still, even though I have the numbers, they’re still only likely to have the awareness or fighting ability of that of the Swiss Army.

Annoying I don’t get out just yet, still gotta get showered, a few phone call’s and various writings still to do. But the entire time, like a kid at the school window, I’m thinking about getting out! …this isn’t like me – I hate walking! It’s uncomfortable, unsteady and incredibly tiring – always to be avoided!

I download a walking tracking app to my phone, strap on my facemask, shoes, big jumper and head for the lift down. Walking out the door, it felt amazing, the air was cool – I’ve not breathed it for weeks, chilling the chords a little, it felt right.

I fire up the app and put one foot out in front of the other. Feet feeling floor – check. Calf muscles firing – check. Thighs, hmmm feeling heavy – but we’ll press on – check!

Balance feels good, my nerves are clearly now talking to my brain – no looking down, no guess work here, my legs are just placing themselves were I expect. Wait! I’m not looking down, I’m walking forward, I’m breathing the air in front of me – I’M NOT LOOKING DOWN!! I’m walking and I’m enjoying it. This isn’t cabin fever, this is a returning experience. I plod on.

Where to go, how far can I go? I’ve seen so many pictures of the beautiful grounds here and I’ve not gone to see them yet. I walk past one building, turn a right, another then I’m in the central courtyard. The main building, pristine yellow with grand columns, just like the pictures it’s quite beautiful, getting a sense of occasion here, I’m walking, I’m at a bit of an HSCT Mecca too. As I walk up a little closer, oop my legs are starting to tire, getting a little heavier now. How am doing on the app? 440 metres! Woah, that’s amazing! I’m sure I could manage something like that before, but would be getting really tired now and fed up! The added sensory difference is just taking away the chore. There are some lovely white benches surrounding the square, I’m not even interested in them. The words ‘Awww, Jen can I just have a sit down‘ are echoing around my head, but I’m pleased to say that I’m looking beyond, and I want to press on! I think the added sensory are now telling me ability levels too, rather than just ‘all out’ as they usual do.

Hey, isn’t there a chapel around here somewhere? I walk to the right of the grand building and I think I see it. Leg’s still giving me the okay. I walk past two gentlemen pointing lots of fingers at each other and their broken down Lada – Hmmm, nice jumpers. I enter the grounds of the lovely wooden structure, give it a bit of a go around and start thinking of heading back.

I don’t want to overdo it, I don’t know what I’m going to be like when I get back, ruining my evening for having spent all my energy. After all, it’s been quite a day – I’ve been jumping too. 😉

As I approach the door of the building, I clock in on the app. 880 metres!! …without stopping. No looking down as before, taking in the air, the surrounding. I’ve missed this, I really have.

I get back into my room, sit on the bed… Wow – ‘sit on the bed’. I didn’t collapse or fall as I certainly would have done before. My legs are even telling I could carry on a bit. Nope, nope, nope!!! …That’ll do for me!

I easily get up, fix myself a glass of Coke, place myself back down and take in the enjoyable warmth in my legs, not the acid-pain I would previously suffer. I put on some entertainment and settle.

That would be a lovely way to finish the story. But I’ve got far too many phone calls to make!! “Hello Jen…Listen to this”

A video about my day.

Three isolation days have now passed.

Sunday – Day +05
Sadly today my comfort took a further dip again today. My temperature levels just won’t keep still, I’m feeling groggy and I’m just unable to concentrate on anything at all. Not irritable or hungover, just wishing that I could just sleep it off, but that wasn’t really happening either.

All the doctors and nurses have been exceptionally good at keeping me monitored. Fluids up, steroids and antibiotics to keep away the sinister. One moment I’m at at a normal 36.8°, the next I’m riding high at 37.8°. What gives?

And just to complicate things, I’m developing a little chesty cough too. Not really what you need when you’re own defences have been shown the door. Nothing I’m getting worried about, I’m in a sterile room, I’m not coughing anything up, just moving it.

I guess sitting around all day on your todd doesn’t really give your throat much of a vocal workout, so fluids just sit there until someone comes in to talk and then it’s all shifts a little. Unattractive, especially when you’re doing your best to be a picture of clean health.

Again, every nurse, every doctor – totally attentive. Let’s hope for a better tomorrow..

My Leukocyte (defence cells) score remained the same as yesterday at 0.07. That’s fine, the levels are expected to stay levelled out for a few days, it’s perhaps like the calm before the stem cells are told to get building.

Dr Fedorenko has been very good, on hand and reassuring. Fortunately, I’m not at all concerned – just wishing for an easier day.

Wilson is trying to explain wing dynamics to me and that bad airfoil is the reason our fan is so noisy. I keep telling him it’s just the bearings – I’m not taking it apart!! #isolation

Monday – Day +06
Sadly more of the same today. My temperature fluctuating. Even getting as high as 38.6° at one point. Though nothing is ever left, action is immediately taken and minutes later I’m comfortable again.

Annoyingly I’m not really getting the ‘Zen’ isolation time I was hoping for really. Not able to concentrate long enough to watch a film, play a game. Just getting cat nap’s here and there. Fortunately, no one here is getting flustered (I’m certainly not), it’s just more monitoring and keeping me comfortable. A temperature game of cat and mouse.

My blood results aren’t showing any signs of infection, my Leukocytes have stepped up a touch now to 0.11. I totally trust in the numbers. I’m here in Moscow for one thing, and as easy as the treatment has been to receive – by body is going through an awful lot inside. It’s probably no wonder my temperature’s up and down. My Leuko’s are now on the increase, that’s all I care about. Go Stem Cells!!!

Fortunately despite all that, my isolation time still hasn’t dragged on at all. Writing my little pieces on my time here The C-Word! …’Chemotherapy’ helped today too. I thought it would be good to talk about my experience with it, and importantly how it’s not something worth fearing about in the slightest.  🙂

…Oops, I’ve not even spoken about how my day started! Naturally it began with Doctor Fedorenko asking how I was feeling and how I slept.

“Not too bad, still coughing a little, but didn’t sleep too brilliantly either, …my feet and legs were really annoying me, pins & needles etc…” – Oh, well perhaps the chemothera… – “No doctor… I’ve had no sensation, nothing in my feet and legs for months!!

…Oh! He says with wide eyes and a smile. Me nodding and smiling. ‘Things are happening, nerves are reconnecting!’ he adds. He then gives me a great big hug and an excitable hand shake.

Exciting stuff, six days on and things are starting to happen!

Expecting a peaceful day today, I’ve just introduced Wilson to some classic 80’s action. He bloody loves it! #isolation

Tuesday – Day +07
Not a much more to elaborate on today. Just wishing that I felt a bit better, getting frustrated with all the coughing. Everyone still looking after me very well.

Just riding today out really. But have some added feeling in my legs, I can now feel flat floor pressure below my feet, and the movement of my calf muscles themselves when I walk. So no more wondering where my legs are and the guesswork of walking on footballs. Can’t wait to get out and give these boys a spin. My Leukocytes have today jumped up to 0.90 – all going well I could be out of isolation tomorrow!!

Today I wrote my piece on The Food – My Survival Guide. It’s a bit of fun, it kept me ticking over.

Wednesday – Day +08
Wow, straight away I’m feeling better today – something has changed, I slept well, my body temperature has restored to normal levels again. Good start – I want nothing but good things today.

After the usual blood test first thing, I’m told that they want to CT Scan my chest. My bloods are still healthy and still very much without infection, but the doctors say they just want to be sure, no complaints from me there.

Wow, those things scan quickly… ‘You’re all clear, the small fluid we can see is fine and nothing untoward – but we’re going to get you on a Nebulizer to puff on for a bit just to help you breathe easier’. Sounds good with me.

I return to my room for breakfast and a visit from Dr Fedorenko. Great news!! You’re Leukocytes have jumped up to 2.61!! That mean’s you can leave isolation!

Further big smiles and hugs from the great man. WOOOO!!!! In and out in only six days! It’s no record, but not many do it quicker I believe.

Suddenly I’m feeling on top of the world. Fearing how my legs will be, I’ve not used them in 6 days, previously that would render them pretty useless lumps. Grabbing my stick, I take a stroll along the corridor, up – down. Up and down again.

I’m not feeling the muscle loss that I would have expected, I’m now feeling the flat surface underneath my feet, I’m feeling my calf muscles pushing and pulling – it’s beautiful. And now I’m getting a feeling above my knees, my lower thighs are warming – it’s happening!

The pins and needles suggesting that something might be brewing the other day, just as I hoped!

I didn’t care for how I was feeling before, many people enjoy their isolation time, I just got a bit unlucky – my body was clearly working hard on my behalf, infection free, my Leukocyte numbers were good and that was all I cared about.

Go Stem Cells!! – What’s tomorrow got in store?

After a rocky six days of #isolation Wilson and I are finally free. We’ve learnt a lot about ourselves and each other. I’d say there was a beautiful slow motion montage to watch of our time together. But I didn’t bother. Look at his little face, have you ever seen such a smile?

Generally there is rather a lot to be said on the subject here at the A.A. Maximov, lot of comments and jokes – we know it couldn’t be any further from a Michelin Star. I’ve been here for three weeks now, eating it – but what I do think of it?

Well it’s ‘cultural’ certainly! Bar the odd questionable piece, but for me it’s been fine, with some help I have got used to it, I no longer dread what’s coming through the door, but see it as a challenge. I love my food, I like to cook and feel that anything boring & bland is offensive. So before I came to Moscow, I heard a lot – I saw a lot. I came prepared.

I’ve got to say in fairness to the hospital, they do very well, they do bring you a LOT of food and has always come when they said it would. Clearly they’re wanting to give you all the nutrients you need to compliment your treatment, but sadly not much else.

Four meals a day can be difficult at times too, especially when you’ve struggled to stomach the previous unknown. Meals are – 9am, 12pm, 2pm and 6pm.

Anyway. How have I managed? My advice is combination, and home comfort sauces too. I’ve eaten pretty happily. Really!

I brought some provisions that have really helped. Of course we all like like different things. Me – hot sauces, others prefer ketchup and salad cream perhaps. But for me it was worth bringing very different flavours. Caribbean, ever faithful Tabasco, Mexican and Indian. I wouldn’t dream of suggesting exactly the same to someone else. But swap those with Barbecue Sauce, a resealable tomato ragu, Teriyaki or a bottle of light garlic sauce – for mash? You’re half way there, and isolation safe too.

I’ll add [NUKE] to certain pieces below to suggest that if you’re in isolation, remember to blast in the microwave after preparation to help kill off any possibles. ‘Nuke’ probably not the best word to use when in Russia, but seems appropriate given what we’re up to here.

Breakfast – 9am
The first day I made the mistake of slapping a load of sugar into my porridge, I love the oats so adding a bit of the sweet stuff normally goes down well. Except beware! Lot of SALT!! For reasons unknown I guess the locals like it this way – so that ruined breakfast was a party in my mouth if you like.

Salty porridge – big spoon, get it down you, side coffee needed!

Small pot of yoghurt, it’s got a smiling kid on it. Nope it’s horrible, no fruit – but three spoonfuls and it’s gone. Get it down, get on with your day. 😉

White / Milky bowl of stuff (tapioca?). Sandy before she left to go home, left me her chocolate Nesquik. Absolute genius!!! Fixes this one bowl of bland right up a treat [NUKE], add it to your coffee also – bit of a Mocca, it helps break up the day. (Thank you Sandy! x)

Often breakfast comes with a plum tea sort of thing, could be wrong not really sure what it is. But it’s drinkable, can add sugar but I found it fine to just down in a couple of glug’s alongside your coffee. Coffee granules of your own bringing that is, they give plenty of local tea. I love the Yorkshire Tea (UK) from back home, so these Russian efforts barely interested me. I’ve got a drawer full of them here – they won’t be coming home!

And if you get any cheese, save it!!…

Second Breakfast – 12pm
I think this one is normally your bit of protein. It’s likely to be a cold boiled egg, a cold hunk of beef, with a couple of pieces of bread. I love this one, drove me nuts thinking about it at first. Stone cold (uncured) Beef? What am I going to do with that?

…Just so you know, surprisingly I never did manage to get that job at the local kebab shop taking pictures of their food.

My first day or two was no problem with the egg  – bread, butter, cut egg over the top, salt, bit of Tabasco.[NUKE] Nice!

But then I quickly realised the potential in the cold beef and cheese!!!! Bread, butter, slab of beef, cheese on top, few squirts of tabasco [NUKE]. Winner – melted cheese, bit of beef – that’s honestly some good eating right there!!

 

Lunch – 2pm
Naturally this one various very much day to day. It often has a soup starter, and if you’ve still got your beef, drop it in there and [NUKE]. It’s not a bad piece of meat either so it reasonably softens up inside and soaks up the soup well. The soups for me haven’t been bad, made from scratch I think, bit of stock and vegetables. It’s not what you’d choose to eat if you were out, but they can be quite nice and textured too. Adding the beef, I’ve not needed to do much with these, sauce/salt do help sometimes. [NUKE]

I’ve had the pasta and liver stroganoff, at least that was my assumption. Of course there are many more meals and are for the moment totally escaping me. But I believe in the dip test, check the taste, then from your sauces – think up which one would add best and you won’t go hungry.

The lunch I received today can be bit of a head-scratcher, it’s cold (boiled) buckwheat and a beef sauce on the side of that. Eaten as it is really could make you wonder if this is all even worth it? But this one is one is actually one my favourites. Add a bit of the Indian style sauce I brought [NUKE], mix it up and suddenly I’ve got a meal elevated to that of a supermarket curry. …and curries are my favourite!

Dinner – 6pm
Tonight was one of their staples, (watch for the bones) Fish and mash!

Not much to say about this one sadly, fork your favourite flavouring into the mash, put some on the fish too [NUKE].

Again like their lunches, they do reasonably vary them. So just be ready with what you’ve got to make it interesting.

Last night’s however was beyond effort. I hadn’t a clue, what it was? It came in the size of of a ‘small bowl of rice’, yellow and totally lacking of any moisture, it must just been semolina come to think of it, my fork stood pretty firmly within. And that was it, nothing on the side. No helping us here, I think I just necked it, felt punished, and then raided my fridge for chocolate. Equally, I’ve been given Porridge for dinner too – that’s not dinner!? …see my update at the foot of the page.

Sometimes it’s just a bit too Russian.

 

This one, I was about to open once, thinking I was about to enjoy a yogurt of some sort. Nope it’s tinned baby food – beef. Of course it is, you know that whole connection of babies in blue bear masks and cow meat.

Interestingly one of the Nurse’s here said that she wouldn’t even give it to her cat. Say’s it all.

And then there is the Pièce De Résistance…

Vache tongue et une pomme bouillie.

It’s a sight to behold when you’re presented with it, and never fails to conjure all sorts of emotions when revealed. Now I already fear the levels of pretentiousness of me saying slap sauce on this, slap sauce on that and telling many how to suck eggs. But it in all honestly, for me it’s really worked and do feel like I have eaten well here in Russia using some of my favourite sauces. I’ve not gone hungry. Except of course, when the Ox Tongue has been presented to me. I just can’t do it.

Having said that, the above is the cooked/grilled version. On my second day I was greeted with a cold, rubbery alternative. Complete with the rough dimpled top layer of the tongue you’d expect to see, and a unique silky texture that your teeth just sink into.

How would Sir like his Tongue cooked?

**Update**

I’ve been asked very nicely to keep the swears away from my blog. I’ve done well, but FFS – I’ve just been given a small bowl of Porridge for my tea! 

Together with the earlier delivery of Ox Tongue for my lunch – which I was going to ‘sleight of hand’ somewhere. Such a menu today feel’s like I’ve upset someone and I’m now being punished!

Though for some inspired reason, I just had the feeling like I needed to keep this tongue. I’m now so pleased I did! …FFS Porridge!?!

Challenge time!!
So, other than the sloppy gelatinous version I ate for the sake of the video above. I have otherwise managed to avoid the Ox Tongue, it’s not a part of the animal I feel I need to try. But tonight I’m going to. But we’ve got to make this work, or I’m going hungry for the first time in Russia yet.

Okay, what have I got in my larder to help the situation? I rummage through to see what’s likely for others in my position too? We have biscuits, sugar and tea. Hmmm, sorry to those others – but you’re on your own!

I’ll have to bring on the boys, namely Mr Singh! I could go Mexican or Tabasco, but I fear that we’d just be killing it with over flavouring. We’re going to do this properly! I just hope eating Cow in a curry isn’t considered sacrilegious. I didn’t ponder about that for too long – I’m on a mission.

Separating the mash, mixing in the Mr Singh Hot Punjabi sauce in the hope to make a desperate Bombay Potato. It really wasn’t, it was Punabi Mash, but that’s now the side sorted and delicately placed!

Now for the Tongue itself I chose to slice it into strips, rub it in Mr Punjab’s finest, lay those strips across my ‘Bombay Potato’, drizzle the Juz (Punjab again) across the layers. En Voila!!

So how was it?
Shit! The ‘Bombay Potato’ wasn’t fooling anyone, it was after all indian flavoured mash. But given the situation the mash was certainly easy to eat.

The Tongue. Yeah there’s a very good reason why no one eats it. It’s an awful part of the animal, considering it’s their most used muscle it should be tender and beautiful. No it’s not, most certainly not! The flavouring for the tongue, fantastic – Mr Punjab has not let us down here at all – take a bow son!

But the meat… think of the worst Doner Kebab you’ve ever wished you didn’t. Hitting those occasional pieces of meat that have clearly been lingering over the gas heaters too long, tough and dry. Then you get ‘lucky’ and you’ve hit a softer, juicer bit, nope it’s the gristly bit that the abattoir’s machine decided not to take out. Then you just keep chewing until that absolutely pointless bit of meat has escaped to the back of your mouth without any noticeable gag reflex.

There you have it. No one can say I didn’t come to Moscow and didn’t try the Ox Tongue. I’ve tried it – three bloody ways!! I have to say my way was the best (Thank you again Mr Singh).

Final thought and conclusion to my efforts.
I’m not going to bed hungry, that is all.

Let’s Talk 

Something I felt I should talk about. The Chemo. The elephant in the room when it comes to HSCT. Something that, understandably, is a very delicate subject.

I’m absolutely not claiming to be any kind of authority here – just sharing how I’m getting on with it personally, in the hope that it might help others who are considering HSCT and facing the idea of chemotherapy for themselves.

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Respect Where It’s Due

I want to start by saying: I’ve been incredibly lucky. I’ve never had anyone close to me require life-saving chemo to treat cancer or similar – and I’ve never seen the effects of it up close.

I understand that for many, chemotherapy brings with it trauma, pain, and uncertainty. It can be brutal – I won’t even pretend to know how hard that is.

So I’m aware that I’m speaking from a place of relief, not desperation.

And for that – I’m grateful.

My need for chemotherapy is to bring relief, and I don’t take that lightly.

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My Experience (So Far)

Well over a week ago now, I received my first dose.
A four-hour sit down, four days in a row.

How was it?
I joked about it being like sitting in a Winchester armchair – and you know what, I stand by that. Honestly, it may as well have been water flowing into my veins.

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The Loo (Often)

Yes, I needed the loo. A lot. A lot, lot.

Each dose was probably around 4 litres, not including the saline drips and steroids (I think?). No drama – just wheel your drip machine with you into the loo and sit comfortably.

And that, really, was my four days.

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Why I Kept Things a Mystery (At First)

I had read up on the medical side of HSCT, I chose not to dive into what it would feel like – because I was so fed up with all the scare stories out there.

The ones that make HSCT seem terrifying.

The ones that tell us MS’ers we’re better off sticking to DMDs and symptom-suppressors rather than trying to Get Rid.

I wanted to go in as blind as possible, and use this blog to give everyone an honest, human account of what it’s been like for me.

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Where I Am Now?

Now sat here, long into my isolation time, I am feeling the effects.

But… NOTHING MAJOR – I’m pleased to say.

And more importantly – it’s worked.

My blood tests confirm my body is now free of the leukocytes that have been attacking me for the last eight years.

And (oops – spoiler for the next post)…
I’m already starting to feel the benefits of an MS-free system.

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The Chemo Side-Effects – Let’s Break It Down

So, chemo. What’s it actually done?

1. Digestive Stuff

Yes, it does take a bit of a scrubbing brush to the digestive system.

For me though – no nausea. No loss of appetite.

The passing of what you’ve eaten though – that’s where it gets interesting.

I’ve gone hours without needing to go…
…and then had other times where I’ve barely had minutes between visits.

Some of it is simple and painless. I’ve had one proper bout of morning diarrhoea, but more often it’s the former.

That said – there’s been a lot of paper use, which, well… my posterior isn’t loving.

Not pretty reading – but we’re being honest, right?

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2. Skin

Well… I’m a bloke, so naturally I’d say “a bit dry.”

My wife, on the other hand, would probably say “incredibly so – and really, you need to take care of yourself.”

I can’t do much from inside isolation, but truth be told, I’m actually looking forward to slapping some moisturiser on when I get out of here.

To be fair, the dryness could be a combo of the vodka baths, the sanitising cloths, and the constant hand gel. My skin’s mostly dry around my arms and hands – nowhere else really.

So maybe, when I get home, it’s just a case of going to Boots, buying a job lot of skincare stuff, and getting back to normal within a couple of weeks TLC.

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3. Blemishes & Feet

A couple of small blemishes, mostly where I’ve knocked my feet.

• A blister on one foot

• A few darker streaks near my toes

All very minor. No drama.

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4. Hair

It’s been well over a week since I shaved my head in anticipation… and still, no noticeable hair loss.

No gaps, no shedding – just a fuzzy head of stubble.

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In Summary?

So there we are. That’s my chemo experience to date.

It’s worked – and the benefits, I can honestly say, FAR outweigh any of the negatives, which feel pretty insignificant by comparison.

I’ll add to this if anything changes.

But if you’re someone who’s concerned – maybe even terrified about this part of the process…

Just know: it might not be the nightmare it’s thought to be.

For me?
So far, it’s been absolutely fine.

Moments later, two burly Russian fellas and a tiny producer girl walk in, draped in hospital protectors. Apparently, this is for Russia’s major news station Russia One. (I keep thinking of The One Show theme.) I believe they were after a positive piece on Dr. Fedorenko, his work, and the international recognition it’s been getting. At least that’s what their questions seemed to be about. “Why Dr. Fedorenko? Why Russia?” and so on…

I think I spent the rest of the day editing my Day Zero video. Just another regular video studio – my hospital room.

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Thursday – Day +02 – Full Isolation Time

Woken up bright and early for some fluid deposits. I barely even notice them anymore, which is nice – the benefits of being on-tap for blood with a chest catheter, I suppose.

Then Dr. Fedorenko pops in – “Good news!!” he beams. The leukocyte numbers have dropped low enough to officially enter full isolation mode.

Now, being told you’re about to be locked in a room without any real comforts shouldn’t bring much joy – it’s a bit reality TV show-esque – but this one did. A proper chance to rest, to let my body properly recover. I might even get round to using some of the gadgets I brought with me… they’ve barely left the bag. Still not sure how I’ve made myself so busy?

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In comes a small nurse I haven’t seen before, armed with all sorts of alcoholic scrubs and scary-looking Russian bottles. I’m shown the vodka bath I’m to have – a handful of cloths for wiping down after a rinse shower. One cloth for the full body, another for the more delicate areas.

(No one wants the reminder of that one time you sprayed deodorant down there.)

Then she brings in some clothes. Woah – no thank you, it’s okay! I tell her the Doctor’s already seen my cupboard full of clean clothes and underwear. But this is met with a storm of finger-wagging and a cacophony of under her breath noises from her stern little Yoda-esque appearance, as she strutted around the room in full fluster mode.

I lift the clothes up to the light and sigh. All white. Badly cut, under-length pants and the boxiest top I’ve ever seen. I fear I’m about to look like a very bad background artist on Tenko, or some oddball in a John Lennon sit-in.

I relent – I’ll do the pants. No harm there. But I’m wearing my own t-shirt and underwear. No more film crews, I hope.

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Meet Wilson

So, since I’m going to be alone in this room, I figured I’d better fashion myself some company. Meet (Castaway-inspired) Wilson, my companion for the week ahead. Some of you on Facebook might already be acquainted with our little miserable friend.

“Wilson didn’t like my successful blood scores this morning. He’s now stuck within these four walls with me. It’s #isolation time!”

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Friday – Day +03 – Minor Wobbles

Didn’t start too brightly today. As fine as the chemotherapy has been, it does leave your internal digestion needing a bit of care. So, annoyingly, there was a bit of a quick hop to the loo this morning. No big deal – but I think it had a bit of a knock-on effect for how I felt the rest of the day.

The good news came from the good Doctor himself – leukocytes more than halved again on yesterday’s score. Normal numbers in the blood are between 4–10. Mine were down to 0.14. So the remainder of my previous immune system really is now hanging by a thread.

Blood pressure check – all good. Or so I thought.

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A Bit Toasty

Around 2pm, my usual check-up nurse arrives. Blood pressure reasonably fine, but I do say that I’m feeling the heat a bit. Sure enough, my temp reads 37.6°.

Quick as a flash, Dr. F returns – I thought he’d already left for the day!

“Okay, your body is a little high – it happens in about 1 in 3 patients and is easily remedied,” he says. “We’ll put you on a course of steroids and antibiotics just to be sure, and we’ll monitor you regularly. But you’ve got nothing to worry about!”

I felt calm anyway – just a bit warm – but his reassurance is always welcome.

Very quickly, in come the drips and I’m hooked up. Ten minutes later, I’m feeling cool and comfortable, with a fan in the room to boot.

They checked in on me pretty much on the hour for the rest of the day, my temp hovering between 36.8 and 37.1°. Dr. Nikolai came in later to say they’d thoroughly reviewed my morning bloodwork and found nothing concerning. The earlier upset stomach probably just triggered things.

The nurses today were absolutely brilliant – always smiling, always on the ball, bringing all the fluids I needed.

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I uploaded my Day Zero video – just a few thoughts from the day (bit gushy, I’ll admit) – but people have been so lovely about it. Thank you!!

As evening rolled in, still feeling comfortable, I figured I’d make the most of it and aim for a nice early night. Head down around 9pm. Let’s hope for a better start tomorrow.

Today had another minor hiccup on the road to Getting Rid. If it’s not me out gallivanting for a ‘coffee’, I’m raising my temperature just to give you something to read. You didn’t want a boring blog now, did you?

You’re so welcome. 😉 

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Saturday – Day +04

“That’s the third time this morning Wilson has done this. We need to talk… just not now. #isolation”

I’m pleased to say a good 11 hours sleep last night really helped. Feeling good, carrying on from where I left off yesterday.

More checks this morning from the nurses, all good. Another update from Dr Fedorenko about my blood test – no infections and my Leukocytes have halved yet again. Down to just 0.07. It’s believed that this will carry on for the next couple of days, dropping off the scale before the stem cells kick in with their new party piece.

And nothing really more to add today – it’s a day in isolation, but a good one. Again the nurses have been extra attentive, but not quite with the previous frequency as needed before.

Maybe just one more from Wilson today.

I snook this picture of Wilson earlier on and threatened that I’d upload it if he didn’t stop walking in on me. He didn’t listen, so here it is then. #isolation

A Restful Night? Not Quite.

Sadly going inn to such a big day, I didn’t get the sleep I’d hoped for – more persistent bladder emptying thanks to all the fluids!

Woke around 8:30 am, to a torrent of messages I hadn’t kept up with from the previous day. Awww, it was so nice.

So much support and positivity from friends and family – from all those miles away, they were letting me know I was being thought of. What a way to start the day.

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Why I Set Up Let’sGetRid

The whole reason I set up my Let’sGetRid blog was to show people how to do this – without fear.

To help with what to expect in the lead-up to treatment, because unfortunately I was finding that  stick a camera in front of someone, and suddenly everything was very dramatic, making everyone uneasy, especially those hoping to have the treatment.

So hopefully reading this blog? No dramas!
Please trust in my commentary – no dramatic soundbites here!

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The Messages That Got Me

But you know what really set me off?

It was the new well-wishers – those just starting to follow me, about to embark on their own journeys or their own closely interested loved ones too.

My little blog was working!!

People were telling me their fears had completely gone – that seeing my experience, my smiling face, had shown them there really was nothing to fear.

It was their flood of messages that really did me in. With all that was going on today, feeling emotional anyway I was getting increasingly tearier with each one.

From those I’d already gotten to know to those who have never posted before, but wanted to reach out that morning and say so.

Then I opened my Day Zero card from Jen… And that was it – I was a flood of tears.

She’d written the most beautiful message. I could barely speak to her on the phone moments later.

No editorial photos taken here – “I’ve got an image to uphold too!!” 😉

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Blood Pressure Says It All

By this point, it was close to 11 am, and my important 1 pm appointment was approaching.

I made myself comfortable, and then Dr. Fedorenko came in, took my blood pressure, and asked how I was doing. For the first time, my blood pressure was higher than normal. All those messages must have really hit something.

I didn’t tell him how soppy I’d just been – “I’m not crying, you’re crying!”

Then, in walks a nurse and hooks me up to a monitor. My BPM was pushing 120, which wasn’t like me at all. So, time for the comical techniques I’ve talked about before.

In through the nose… out with a ‘Whooosaaaaaah’… Back down to a steady 65 BPM in no time.

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The Big Moment – Stem Cell Transplant

Had my camera set up in the corner of the room to record the process…

Unfortunately for my camera, I was one of four transplants that day.

My camera – set at maximum settings – managed 30 minutes of prep nursing, then died long before the actual procedure. Shame.

Despite that, I just lay there incredibly relaxed, patiently waiting my turn.

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Rattle, Clack, Rumble…

In arrives the entourage –

• Dr. Fedorenko
• His right-hand man, Dr. Nikolai
• A nurse
• Anastasia

More positive Q&A, telling me what to expect, reminding me to report any sensations as they happen, so he could cross-check the ECG live scoreboard.

Then, I was shown my bag of returning stem cells – box fresh, dripping with icy air.

Like the Ambassador at his reception, I give a little nod to proceed. 😉

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The Transplant Itself

Fortunately, just the one bag – for the one day of collection. More than one day requires more bags to thaw.

My cells were thawed out, syringed into three large vials, then hooked onto my chest catheter, long placed there from the chemotherapy.

Dr. F places his hand on my arm and talks me through the side effects I may experience over the next few minutes.

And we begin.

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The Play-by-Play

Dr. F asks me to commentate as I feel things, so he can cross-check with his scoreboard.

• Right side of my face suddenly feels flushed.
  Not a problem, just my heart rate adjusting to new fluid and temperature of them as they go in. It passes within seconds.
• My throat gets incredibly dry – like an irritable piece of plastic is stuck there.
  Not pleasant, but dissipates just as fast as it came.
• I suddenly get the famous taste of HSCT tomatoes.
  Can’t remember his reply, but I do remember thinking… actually, quite nice!
• Any chest pressure or crushing?
  Nope – nothing at all!

Less than 10 minutes, and it’s all over. Dr. F proudly shows me the now-empty bag.

Through my oxygen mask, I probably pulled some big silly smile, then just thanked them all.

I commented on just how easy that procedure really was. I felt totally at ease the whole way through – even enjoyed the relaxing nature of it all.

And, of course, the knowing that… This just might be the end of a very long, very dark road.

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A Moment of Reflection

Relief washed over me. No recreational drugs necessary (other than the saline drip I was hooked up to).

I just lay there, feeling content – a beautiful moment to myself, reflecting on our near future. All the things Jen and I have been missing for the last eight years.

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The First Thumbs-Up

Picked up my phone and sent a thumbs-up picture.

Anastasia had expertly taken photos on my phone during the treatment – good thing too, since my primed camera had died prematurely.

I let that send, then immediately called Jen. “All done!!”

We switched to FaceTime to talk about how it went and how comfortable it all was.

Difficult to recall exactly what we spoke about, but no doubt, it was filled with positive things – and how much we couldn’t wait to see each other again.

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A New Man Born

After hanging up, I think I just laid there contently, enjoying ten more minutes to myself.

…Oh, and then, of course, the obligatory Facebook announcement.

“New man born.”

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Time to Party!!

Time passes quickly – and suddenly, it’s time to celebrate!

I get dressed and move myself to the sofa area in the hall, where others are waiting – including my fellow stem-cell quadruplets.

Dr. Fedorenko begins his beautiful fluid-pouring ceremony – the fluid used in the freezing process is poured out onto the floor in a display watching it evaporate as it hits the floor.

Simple – but it’s really beautiful.

He speaks words of meaning and kindness, and we are all given our Iris Pins – the Doctor’s little badge of honour, symbolising the flower of new life.

Then comes his famous big smile and hug.

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A True Hero

I don’t have many heroes in life. But this one – an understated man with a heart of gold – has to be mine. I hope to be able to repay him one day – to show him what he has done for me and my (future) family very soon.

He gives everyone a big wave, wishes us a pleasant evening, and then heads off.

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A Surprise Recognition

There were some new faces in the group today, so I went over to say hello.

I met Vanessa and Tonia from Australia – they congratulated me on my Day Zero, and we got chatting about who we are and how we got here.

Then came: “Ahh, you’re Alex from the Blog – we’ve been told we should meet you!”

How lovely and amazing. Not for glory – but just the knowing that I’m helping someone, somewhere.

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Calling It a Night

We all retire to our rooms – of course, I was feeling a little bushed, and probably had one or two messages waiting for me. …Something like that, anyway. 😉

What a day!!!

WHAT. A. DAY!!

So much to reflect on, so much to soak up. I put my head down for a couple of hours – I don’t think I’ve done that enough really, but I’ve earned this one.

A few final calls, a few notes about my next blog post… And then, instead, I decide to just retire and wallow in the warmth of a new immune system building.

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Today Has Been Incredible.

Never to be forgotten!

A Quiet Day? Think Again!

I thought that there might be nothing too much to report on today – sat in bed, enjoying a coffee, watching BBC Morning News on the iPad. Sunny day – I was looking forward to this rest day.

Knock, knock!

Nope – Anastasia has other plans.

“Get packing – you’re moving straight to the Isolation room!”

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Moving In

I scoop all my belongings into my suitcase, much like I did for the journey here – only this time, without Jen’s help.

Then… unload.

I figured the restrictions in isolation would be pretty strict.

Not that I was picturing being pushed into a room and hosed down, but still – I had to be careful about what to bring and what stays in the case.

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The Essentials

• Gadgets? ✅ Can’t imagine doing this without them.
  (Cleaned down, wiped well – all good to go.)
• Clothes? ✅ Plenty of clean ones packed.
  (No hospital gowns with side slits for me thank you!)
• Food & condiments? ✅ Approved – but must be microwaved, not applied cold.

So, I’m in.

Everything’s unpacked, anti-bac’d, and ready for a bit of a stay.

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Embracing the Quiet

To be honest, I’m actually looking forward to this.

MS is incredibly tiring, especially when other people are constantly spending your precious energy for you, making plans when you’d sooner be at home.

In my isolation room. I get to make use of the fun gadgets I brought – the ones I never seem to have time to play with at home. Old skool Sonic the Hedgehog anyone? 😉

This could even get very therapeutic!

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Tomorrow – The Big One

Tomorrow is a big day.

Let’s put those stem cells back – and crack the whip!

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My New Digs

The Chemo Debate

• Have you thought about the side effects?
• They’re not good for you!
• But you’re not terminal?
• It’s not worth it!
• …Won’t someone please think of the children!?!?

Wow – the stories I’d heard from (doctor) people about receiving chemotherapy. I know most have my best interests at heart, but regardless – I have to get rid of my MS!

If they had to break open my kneecaps with a bat to apply it or pull off my toenails – so be it.

But, I’m sat here on my hospital bed, glass of Coke in hand, after a bit of fish for my tea, feeling pretty good, actually.

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The Reality vs. The Fear

Instead, in my case. It’s been as pleasant as sitting in a Winchester armchair, wearing smoking jacket, having your single malt topped up for the second time.

Okay – swap the scenery for a hospital bed, a drip, and a three-hour wait.

But considering the juxtaposition, you hopefully get the idea.

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Four Days of Chemo – The Experience

My first dose of chemotherapy came on Thursday. Naturally, I wondered what could happen – no smoke without fire and all that.

But no issues.

Friday was fine – with a touch of added entertainment (questioning old gits, tangled wires – nothing freaky).

Saturday – I got the hang of it.

And today (Sunday) – I actually enjoyed it. Simply knowing it was the last dose, finishing off the job – and, as always, they come with the heavy need to sleep, good sleep.

Dr. Fedorenko has talked about how he’s refined his chemotherapy over time – ensuring it’s effective but not overkill.

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So, What Did It Feel Like?

For me – the complete layman – I’ve just had four days of a lot of chemotherapy fluid, and I feel perfectly comfortable.

• No nausea.
• No sweats.
• No headaches.
• No pain.

As far as I felt – it may as well have been water.

The only things I’ve noticed?

• I’ve needed the loo a lot (so much fluid & saline drips).
• My hands are a very dry.
• Occasionally tingly feet.
• I get sleepy.
• Every now and then, MS tries to make itself more pronounced.

But overall? I’ve been perfectly comfortable.

Testament to the genius of Dr. Fedorenko, his accompanying medication, and the excellent care of his staff.

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Chemo Isn’t One-Size-Fits-All

No doubt, not all chemotherapy experiences are the same. Without a doubt, it’s not always easy and not always painless. But I feel incredibly fortunate to have had such an invasive therapy and still feel lively enough to write about it as I receive it.

For many, chemotherapy brings hope of ridding a potentially terminal illness.

For me, I hope it brings relief.

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What’s Next?

Tomorrow, I imagine there will be many blood tests and checks to see if all has gone well.

I appreciate it’s still early days for me – but the other patients here are still smiling, and I know that I’m going to sleep well tonight.

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Watch My Video!

Please watch my video from this morning’s dose. I talk about my experience with chemotherapy and what it’s really like.

I hope I’ve alleviated people’s concerns about this major part of HSCT.

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.

Anniversary from Afar

First things first – I want to wish a happy fourth wedding anniversary to my beautiful wife, Jen. Thousands of miles apart and unable to spend the day together, unfortunately. But she still made sure I had a card to open. She’s the best!

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A Well-Earned Rest (Sort Of)

After a successful stem cell extraction on Tuesday – delivering a solid 3 million troopers – I was rewarded with a day of rest before diving into four days of chemotherapy.

Though it did begin with me being woken up to have the line removed from my neck – not that I’m complaining! Funny thing is, after just a day, I’d kind of stopped noticing it was even there.

In came a nurse, speaking in pretty Russian words that somehow made the whole neck de-tubing experience as pleasant as it could reasonably be. She offered to show me the plastic tubing she’d removed… but sometimes ignorance is bliss. I politely declined.

Then, I was swiftly moved into another room and told to lie flat on the bed. No faffing about here, she was talking as she went, all in Russian. She covered my neck and started prodding around for the best way in.

For someone so efficient and direct, I was surprised she struggled to find a good spot – so instead, she chose a lower vein below my collarbone. Honestly, I much prefer that. It hides below my t-shirt, and I’ve got full neck movement again.

No more sleeping flat Tutankhamun-esque.

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A Birthday Worth Celebrating

Yesterday was Linda’s stem cell birthday – Congratulations!! I’m so pleased for her and her lovely fiancé, Christian. Good times ahead.

We chatted, ate cake – and then I hit the wall (figuratively speaking – I’m no thug). It was only around 6 pm, but thinking about it, this was probably my first day without steroids this week. I should have expected this crash at some point.

I headed back, put on a film, and just slept. Sparko.

Next thing I know, it’s 11 pm. Wow – where did that time go?! Clearly, I needed the sleep more than I thought. I squeezed in a couple of phone calls, then wondered how easy it would be to get back to sleep again.

[Like a bolt to the head – out!]

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And So It Begins…

Knock, knock!

In walks the clatter of my Chemotherapy breakfast. It’s 9:30 am – I’ve slept almost comatose for 15 hours. And to think I stopped taking sleeping pills a couple of nights ago!

Still feeling snug in my surroundings, I roll over slightly and show off my new chemo line.

“How are you?” they ask.
Blood pressure – all good.

Let’s proceed!

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Day 1 – Chemotherapy

Bring out the big guns – the MS won’t know what’s hit it!!

Three hours came and went very smoothly. Other than the occasional loo break. Walking a drip stand toward the toilet and back… is probably an image I’d have preferred to save for my geriatric days.

I’ve put together a little video blog.
The chemotherapy. … and that noise. (It’s on the video.)

I’ve since realised that cutting out steroids might explain why I’m feeling so shattered (slow, sleepy brain over here).

So, depending on your perspective, it’s been a day of action.

If you’re an MS-dwelling, good-for-nothing T-cell, you’ve just had the first taste of the Pain Train that’s about to arrive!!

Or a fella chilling, slowly getting sleepier and sleepier, letting the good stuff do its job.

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Thank You

Thank you for all your fantastic messages today. With everything doing it’s job, I’m really starting to feel tired – so I’ll try to get back to everyone as soon as I can.

Thank you – I really am feeling the love, and it means the world to me. xxx