My last days in Russia – The Final Part

Sunday – Day + 12
Another good nights sleep, I’m not really sure what’s changed to be honest. Maybe I’m just starting to feel totally comfortable in myself, the treatment is very nearly over, I’m feeling relaxed in my newly transformed stem cells, the physical changes feel good and probably most of all I do finally feel MS free! It’s the most fantastic feeling, the physical weight feels like it’s been lifted, suddenly my future is no longer uncertain, I can relax in the hope I do carry on improving, do the things I miss and best of all – warm in the knowledge that I will be the father I always wanted to be.

…Or maybe it is just the Michael Jackson music?

I’m pleased to say that I still haven’t felt anything from the long Rituximab infusion yesterday, wasn’t sure what to expect, but so far so good.

Doctor Fedorenko comes in for his morning chat, more big smiles and handshakes. Today he says my Leukocytes have jumped up to to 6.6M (4-10 average), so naturally I’m happy with that. It’s a rest day today so I tell him how we plan to go out for the afternoon. Immediately he’s concerned about my chest line, he just doesn’t want the site to get infected for being outside. It’s due out tomorrow but being that I’ve only got a blood test tomorrow, it can instead come out today he says. Good man, no arguments from me, get this tube out pronto!

Now the NHS (as much as we love ’em) would probably ruin my day out by keeping me in until they took it out – whenever that would be. But literally only a couple of minutes later in comes a nurse ready to remove it. Service indeed!!! Now I’ve had this thing in my chest for nearly three weeks, I’ve no idea how nested it might have become. As she gets to it I look away, I don’t feel the need to see this thing pulled out, it’s a long tube going right down to my heart. I’m not particularly squeamish, I just believe that ignorance is bliss. Even without anaesthetic I didn’t feel very much at all, only a very little bit of pulling on the skin – certainly no discomfort, no blood either. I didn’t know what to expect but that was easy, and now I’m ready for Jen to arrive.

Jen comes over alone as my dad and sister Laura have gone to Red Square. I’d love to have gone whilst I’m here, but days out like that just tend to be too stressful for me. My body just tends to misbehave, leaving me more concerned about keeping myself straight than actually being able to enjoy myself. Days out to the unknown, one of the many things I hope to enjoy again soon.

After a hello and another big hug with Jen …all beautifully cladded in blue and face mask. Almost the first thing she says is ‘what’s happened to your head?‘, I know it’s gone a bit patchy today. ‘A bit? …it’s pretty bad‘. I go take a closer look at my thinker in the mirror. Wow! I look like the cuddly toy off the front of a bin man’s lorry!  Jen for a moment thinks I’m happy with this look, no(!) I am not. She says that the back of my head is almost totally bald, much like a babies head. I look back at my pillow, like Wayne Rooney’s worst nightmare – it’s covered in hair. Nice!

Needs must!
Being that it pulls out without any resistance we go looking for some tape, the nurses don’t seem to have any. In conversation with the inspirational Cathy Hayes (Cathy’s MS Cure), who arrived around a week ago, said she had some Gaffer Tape with her that she could spare. Brilliant! I never did ask why she brought industrial tape with her to Russia? Must be an obvious travel thing that the rest of us haven’t caught up with. Clever Aussies!

So… Pfffffffft! Jen pulls away the first strip and asks where to put it? Well, it’s got to go straight down the middle hasn’t it, in the style of an Irish Mohawk. Now that I’ve written it, it’s probably not the best name for it at all. Apologies to anyone Irish, though I too am a little bit Irish (…who isn’t?), but we’ll now call it a Backward Mohawk.

mohawk

The strangest haircut I’ve ever had! Not a particularly pleasant one either, industrial tape is strong! Ripping it off quickly didn’t seem like a good idea, I didn’t really want what’s left to be a bloodshot skull cap instead. So carefully does it, a slow and steady pull seemed to work. Before Russia, I’d never had a skinhead let alone been bald!

Am I rocking it?
Jesse!! Do I go all the whole Breaking Bad – goatee and black hat to come? Thinking that I was going to reveal a clean bonce underneath, weirdly already growing is the beginnings of new hair! I don’t know where they came from? But there’s good coverage of this light peach fuzz like growth across my head. It’s so light I don’t know if I should shave it off?

With my new streamline (slightly fuzzy) look, chest tube gone, we’re ready to head out. Handy because my dad and Laura have just arrived back from central Moscow. Apparently on their arrival to Red Square my sister asked “where is it?” I think that’s good enough for me to know that maybe I’m not missing too much, for the moment at least. I do hope to one day return when I’m more physically able to enjoy it.

Wheelchair in the back of Andrey (the legend)’s taxi, mask on and we’re off. We go to the Tsarist Palace market over by the Vega hotel, it’s home to a souvenir market, hospitality and wedding venue, no actual Tsar’s sadly. Apparently the ‘palace’ was only built 15 years ago. Russia is full of rich history, yet the only bit I manage to go and visit has McDonald’s restaurants older than it!

The market stalls are colourful, selling all sorts of things/tat. Blankets, crockery, Russian dolls, knock-off fabergé eggs, military paraphernalia and best of all – Putin Mugs! I didn’t know those eggs were a Russian thing, wealthy Tsars used to give them to their wives at Easter. …And Russian dolls were traditionally given on pancake day!*

*I made that up.
Jen got an egg, some dolls (when in Rome) and I just had to get some mugs for the office. Beauties don’t you think, my particular favourite is him feeding the pony. Class! Though I reckon a few goes in the dishwasher and they’ll probably fade quicker than Andy Murray against Novak Djokovic.

Annoyingly, going around the market wasn’t very comfortable for me, the chemotherapy does do funny things to your insides. Frequently needing the loo is quite common, so a couple of very urgent wheels to the loo were very much required. The market doesn’t have the cleanest loo, and paying a couple of coins to the miserable old bag on the door for the honour, was hardly a thrill. The way I was feeling today, I’m pleased I didn’t go to Red Square (sadly).

We head back to the Vega hotel, visiting the coffee shop in the lobby. Which is massively recommended, some really good coffee served there. A large cappuccino later, which didn’t really help my bladder at all (but certainly didn’t regret it), I got the urgent call to go to the loo (once again). Walking towards the boys room I notice that suddenly I’m walking much freer now, easier, longer strides and back up to my old normal walking pace. Still with the stick, but a massive improvement. I couldn’t be happier, so many noticeable changes, I’m now wondering what could soon be possible?

At the end of a really nice day I have to debate whether I share a room with Jen and get back the the hospital at 7am for my blood test, or just head back now. Excruciatingly I decide to go back to the hospital now, it’s been a long day and probably best I take it easy, rather than a very early start.

I get back to my room and settle for the evening. Jacko music on.


Monday – Day + 13
Woken up nice and early by the nurse, she of course wants a bit of claret from me. My last blood test.

10am, the good doctor arrives all smiles and handshakes as always, I’m going to miss this fella! The news is that my Leukocytes have jump up over a million since yesterday, now over 7.7M. We’re doing well. I thank him for his help letting me go out for the day yesterday and how it was nice to get out for a bit, even if it was a plastic palace. He tells me that he’ll be back later in the morning for our final consultation.

wilson_out
People ask how I’m going to get Wilson through security.

Jen arrives shortly after and we begin to pack up my room, suddenly it’s now feeling very real and all coming to an end. My amazing trip, my month in hospital, which I never imagined would have been such an unforgettable experience, meeting so many incredible, inspirational people along the way!

People online ask how I’m going to get Wilson home? Well I’m not going to take the loo roll with me. Everyone is shocked!! …I’m not packing the roll. Don’t worry he’ll be getting a 3-ply upgrade when he gets home. I’m told he won’t like that at all. I hate that little sod, everyone loves him more that me! 😉

Doctor Fedorenko comes back into the room. He talks about how positively I’ve taken to the treatment and everything so far is looking very good. We discuss my care and how I need to look after myself once I return home. I’m expecting to lose my summer, avoid people and stay indoors. Hermit-like.

Not at all, suddenly I’ve got my summer back. For the first three months I’m to avoid crowded places and wear a mask if I do. Avoid being in the sun, the chemo has left my skin very dry and does need protecting. Pets are fine, but wash you hands after touching them, it seems it’s human contact I’m to be careful of, certainly keeping away from anyone with a bug/virus of any sort. Food-wise it was said a few times …AVOID FOOD POISONING!! It can be very dangerous, but it’s all common sense. Don’t have cold salads and fruits for the first couple of months, unless you can guarantee that they’re totally clean. The same for takeaways as sadly we can’t guarantee their preparation and cleanliness. Make sure all fish, meat and eggs are totally cooked through. No rare steaks for me!

…and if I get a cold, infection or high temperature – don’t panic, just make sure I see a doctor quickly, to help get on top of and get it cleared up as soon as possible.

I ask him about my fertility, has it likely to have been wiped out? Not necessarily he says, which does surprise me. I did get myself frozen before my trip, but he says to get myself checked after 6 months, I could find that I’m okay! Amazing! I do hope so, but we should still avoid getting pregnant in that time. Things are looking up! I’ve heard so many scary stories about how to look after yourself post HSCT, but this is refreshing. I will still of course listen to what the masses say, but it sounds like it’s all about common sense.

The good Dr Denis Fedorenko then thanks me for choosing the A.A. Maximov Hospital wishes me a lifetime of good health. He then says that he’d really like to show me the new 3rd floor, they’ve been expanding the department, it’s nearly ready and I’m going to be the first patient to see it!! Exciting stuff! That explains the occasional hammering I’ve been hearing over the last month. We decide that it’ll be better to go take a look tomorrow when the builders aren’t there. Looking forward to that.

Dad and Laura arrive in a cab to pick us up on their way back to the hotel. They’ve had a random morning out visiting some local interests. I grab what I need for the night, leaving my suitcase behind, tonight I’m finally going to stay with Jen for the first time in nearly a month. We all jump in the cab and head off to the hotel. Once checked in, we go for a coffee. Why not!

After sitting down we see our Australian friends; Cathy & Ben Hayes and make room for them at our table. Cathy is just about to begin her treatment, her fella Ben has come along to be with her for the entire month. Good man!

cathy_ben

We spend the next couple of hours talking all sorts. My family do their best to embarrass me with stories of my past, we learn of Cathy’s family and Mum & Dad (Di & Phil), who sound like such an entertaining couple. I’m reminded just how similar UK & Aussie humour is – sharp! It’s brilliant to finally meet Cathy, she’s been following my blog from the start, talking online and sending messages of support. I’ve been telling her that she has nothing to fear out here, but so much to look forward to. We talk how Jen & I hope to get to Oz in the near future, as we’ve been promising ourselves for so long to go and visit people. We’d also love to visit Cathy & Ben and her incredible parents who have been messaging too, giving me fantastic support. I feel like I know them already!

Cathy & Ben head back to their room and the four us go for some food in the hotel restaurant, I then realise that I’m about to have some proper food, or at least I hope so. Once I’m sat down and have ordered my Vodka cocktail, I then remember what Dr Fedorenko said about food …oop! Being not sure of a cleanliness of the kitchen? Then again on leaving the hospital he didn’t say not to eat out, so I’m going to apply the common sense he suggested. No salads, no undercooked meat etc…

Again when in Rome, to go with my brilliant Vodka cocktail (it’s so good) I order the beef Stroganoff. I’ve had it at home, it’s good but I’ve got to try it whilst in Moscow and I’m so pleased I did, it’s beautiful and has to be tried. Fortunately it comes with potato mash, the beef is cooked through so I’m confident it’s fine to eat. Good eating indeed!

After a good meal and a chat, we all head back to our rooms. This was yet another fun nights attempt at some sleep, no amount of Jacko was going me tonight. The Vega isn’t the greatest hotel, far from it – but the amount of noisy late night construction and car burnouts outside really made for the worst nights sleep ever. Just hoping to be able to sleep on the plane tomorrow.

Tuesday – Day + 14
I would say I wake up, but I get up. We go down for breakfast, in fairness the hotel do put on a massive selection, but sadly is more quantity than quality, a bit of a gastroenteritis minefield for most, but I’m going to be uber cautious. Keeping to scrambled egg and sausages, only taking the fresh egg as it arrives. We all check out and return to the hospital.

We go back to the hospital rather than straight to the airport, to see the hospital finance fella who has a final contract for me to sign, usual formalities and because the hospital have already organised a driver to take us all the to airport.

The doctor comes to greet us for the last time and takes us downstairs to the third floor as promised. The new department is in it’s final stages of decoration, a fine layer of dust covering the surfaces, but it’s looking great, very spacious and some really nice touches. I’m almost wishing my treatment was a month or two later to enjoy it! What was really nice is that Dr.F wants me to share pictures of it all. I didn’t think he’d even known of my blog, but he’s asked if I’d share it here. Another great Let’s Get Rid exclusive! …I’m getting so egotistical these days. 😉

23More pictures here.

We hear so much of the great Russian waiting list, and it’s brilliant to know that they’re doing all they can to reduce that wait for everybody. They’ve now nearly doubled their international patient capacity. The doctor’s going to be a very busy man indeed, like he wasn’t enough already!

A big final hug and handshakes from the Doctor. The work this man does, the lives he has saved (ability speaking), so caring, he knows his achievements yet he his so humble and understated. He is an absolute living legend among us. I’ve said before, I don’t do heroes – but this man is mine! I hope to meet you again in years to come and show you what you have done for me.

dr_hug

I let him go and work his magic elsewhere, I sign their pieces of paper and say goodbye to the place I’ve called home for the last month. Mask on. I actually feel sad leaving a hospital – how is that even possible!?

We’re driven to the airport where we find the finance fella waiting for us, we weren’t expecting that. He and our driver wheel me and our luggage through to check-in, marching us up to 1st class desk, waving away any non-1st class questions and gets us checked in pronto. He thanks me for my custom and he’s on his way. Service indeed! Sadly that’s where the first class stopped.

A very Russian looking guy suddenly pops up, I can’t define this thinking but he has a bushy moustache and he’s big. We tell him thank you, we can manage ourselves to departures, but he absolutely insists. No point in arguing. As we’re about to move, Jen tell’s him that she’s going to need a cigarette ahead of moving on, after all she’s not going to get another until we’re out of the other side of Heathrow. Our new friend says ‘Ah!’ raising his finger, he then wheel’s us further into the concourse, thinking that he’s going to take us to one of those hilarious animal style pens that smokers are herded in to. Nope, he finds a nook between the concourse window and a lift, well out the way of people and stashes me there!! Woah, woah, woah, whats this!?!? As I quickly stand up, arms out to the side, turning around from my wheelchair like a forgetful fraud. ‘Boris’ barely notices my cry, Jen and Laura are in hysterics as he tells Jen to go back the way we came and have her fag out the front entrance. I should get angry about it, but it’s so ridiculous and backward eastern european, I just can’t help but laugh in astonishment. What does he think? I’m going to get stolen? Boris then vanishes, Laura’s gone to keep Jen company, my dad has taken the opportunity to nip to the loo. I then move myself to a bench close-by and wait for the others to return. I hate being sat in that wheelchair.

The gang are back and so too is Boris, totally oblivious of the treatment he’s dished, though not quite sure why I wasn’t still in my chair, probably now thinking he didn’t stash me well enough. He whisks us all through security to departures, he offers to take me alone to the gate, ‘no thanks Boris, really you’ve done enough – we can go from here’. We take small wander around the shops, we each buy some vodka to take home. We buy some Beluga stuff and some Kremlin Award Vodka which sounds promising, it’s either the best vodka around or the one who offered Vladimir the best ‘handshake’. Either way, I’m looking forward to giving these a try.

After a coffee and a bit of time killing, we get to the gate. Being the one in the chair, I present myself to the staff on the door, where I wait until being let on the plane. The doors open and there’s then a bit of a rush to get to the front of the queue, which I never understand at all as we’ve all got designated seats? …We get on the plane, in the same seats we chose when we checked in.

[Imagine hilarious montage of plane travel here]

On arrivals at Heathrow, to my total surprise is my Mum, Jacqueline, my brother Phil and his girlfriend Karen and Laura’s husband Mark are there waiting for me. Amazing, I had no idea and what a fantastic welcome home. I show off a little of my newly returned abilities, the Tin Man has gone and I’m moving far more fluidly. Everyone is amazed, it’s all happened so quickly. Everyone gets a hug, but the one from my Mum is tight, long an teary. Year’s of watching her son going physically downhill, the worries and stress that came with MS and the uncertain future – now gone.

We’ve done it, I’m home …WE GOT RID!!

The drive home feels good. The evening sun is shining as it goes down, the familiarity of the roads, everything written in English and the awful road quality of the M25, it’s great to be home. Walking through the door, plonking myself down in my favourite place on the sofa – my ‘sanctuary’ – it feels amazing. Though with a new found ability for life, I’m hoping to rely on my sanctuary far less in future. Our two cats have forgotten who I am. Life starts (again) here!

[The end]

…not a chance. This is just the beginning!! 😉

Exclusive – Pictures of Russia Expansion

Another Let’s Get Rid first! …sorry, I’m such a cheeky egotist. 😉
I just got very lucky, Dr Fedorenko wanted to show me the nearly completed 3rd Floor development to share on my blog.

Anastasia today announced the expansion of the Haematology department at the A.A. Maximov Hospital in Russia, boosting the capacity to welcome more international patients. Increasing from 8-10 patients to 15 by the end of 2016, with the aim to expand further to 21 by renovating floors 4 & 2 in 2017. (Speculated by the Doctor)

The expansion unfortunately will mean increasing the cost of treatment from $45k USD to $50k from August this year.

But when you see the new department you will understand. The new floor will have a dedicated transplant room, is spacious, bright and will be furnished with new equipment and electric beds. …I wish there were electric beds when I was there – comfortable Netflix viewing!

I found Floor 4 to be absolutely comfortable, but floor 3 will be a cut above. With of course floors 4 & 2 to follow soon.

Exclusive – Dr Fedorenko & Anastasia Interview

During my stay at the A.A. Maximov I was fortunate enough to be able to ask Dr Fedorenko and Anastasia some questions on camera. Asking friends on the HSCT forums for questions they’d like me to put to them plus some of my own, which made for a fascinating interview. Naturally as a patient I had an idea of their refreshing way of working, but the answers they gave were a real eye opener to their beliefs.

Truly inspirational people.
…shame about the host.

My last days in Russia – Part 1

Friday – Day +10
Woohoo I actually managed a good night’s sleep last night. I’ve generally tried to avoid the sleeping pills, they never seem to work too well for me and I’ve always preferred to avoid popping pills where possible.

Never before have I believed in spiritual alternative to traditional medicine, but interestingly I’ve found ‘Michael Jackson’. I’ve not been seeking his spirit or anything, but putting a playlist on as I go to bed seems to have really helped. I guess growing up with and idolising his music from very young has been some weird comfort for me as I aim for Land Nod, just one ‘Man In His Mirror’ and a ‘Healing the World’ and I’m away – who’d have thunk it?

So, big day today. I’m itching to go for another walk, it’ll be interesting to see if there’s any comparison to yesterday’s effort and I’ve got to my big Doctor Fedorenko and Anastasia ‘interview’ today. We were hoping to do it days ago, but naturally it’s a very busy department here and I didn’t want to add any pressure on the Doctor. Besides I knew there would be plenty of time once the isolation was out of the way, but I’m excited we’re going to be doing it today.

I start my day as I often have, responding to the messages I receive about my blog through the HSCT Facebook groups. They’ve always been amazing, so supportive and give me so much positive energy to carry into my day. I’m just receiving the feedback from my previous posts about my isolation time ‘Hard Stem Cellin’ and ‘These Pins Were Made For Walking’. Wow – what an phenomenal response, I’m already feeling hyped, excited, emotional …(all of the above) from my own positive personal experience – now with the added messages of this mornings support – I’m on cloud 9. I’m so pleased and never imagined that I could make such a difference to people. People are messaging me how they were previously afraid/unsure of the treatment, now saying how their minds have been made up and are now actively pursuing HSCT for themselves – Truly amazing!!!

I take that positive energy with me into my walk. Getting dressed and ready to go out. Face mask on!

Another beautiful day in Moscow, warm sun, but the air has a lovely cold bite to it as you take it in. I fire up the walking app, but plan to walk exactly the same again. No extra push, only wanting to compare on my walk yesterday. I get off to a good start, carrying on with what I enjoyed, looking up and forward, one foot after the other without a thought.

I wish I could add more… but sadly this walk didn’t get much more interesting. I plotted the same route and distance again, though sadly this one didn’t seem as easy as it was yesterday. Was I riding a wave? Or did I simply tire just a little quicker today? I still made it around without any problem, no rest breaks, I enjoyed it, but today I think I’ve learnt to just take things a little easier. The walking is back, there’s no need to push it.

I get to my room and start preparing for the Doctor and Anastasia to arrive for our chat. Camera batteries charged – camera in place – lighting good – sound, a touch echoey. Oh well it’s hardly a BBC setup, but I think we’re good to go.

The recording was fascinating. To hear of Dr Fedorenko’s background, his feelings towards his work and his plans for the department are just amazing. I’ve said it before, Dr Fedorenko is something special – but I’m now in total awe of the man.

Anastasia of course as you’d expect comes across brilliantly, such a lovely personality and as much care in her work as the Doctor. Together they’re so inspiring. I can’t wait to get this one edited up and uploaded soon.

Wow. Tonight I’m tired. It’s only about 8 o’clock, but replying to messages, I can barely keep my eyes open. Jen’s flying in to Moscow tomorrow, with my Dad Ray and sister Laura, I call her and would like to talk, talk, talk – I’m so excited to see her, it’s been three weeks, we’ve never been apart so long! But I’m so tired. Fortunately the benefit of a FaceTime call, Jen saw immediately how whacked I was, we chatted for only a few minutes, spoke how we were only hours from seeing each other again and called it a night.

I put on some Michael Jackson, though I totally knew I didn’t need his beatboxing tones tonight, but I’m going to anyway. …After all his music’s still great. As quickly as the light goes out, so am I.

Saturday – Day +11
Another good night’s sleep. Thanks Mickey! 😉 Woooooo, Jen’s coming today!!!!!
…oh and of course I’m equally looking forward to seeing my Dad and sis! 😉

Dr Fedorenko comes in with his morning update. You know I think he’s been in everyday of my treatment this month so far, I can’t think of a day he hasn’t been in to see me. The man’s dedication to his work and us as his patients is just incredible, yet another thing to admire the man for. I tell him about my walking and how the optic neuritis in my left eye appears to clear up at times now too. More big smiles and handshakes.

…And I tell him how my hair still isn’t falling out yet either! To which he pinches a few short strands and without any resistance at all, pulls them out and shows me. ‘Yes it is’. Awwww is it. ‘yes, it means you’re recovering from the chemotherapy well, it’s a good thing!’

I then take a pinch at the week long stubble on my face also, yup effortlessly that’s coming out too. Now that’s weird! Pulling on stubble hurts! …like the hair on my head it’s just pulling out freely. On further inspection, I then realise that my facial hair is now looking a bit patchy, a bit like a teenager’s best attempt. I’m 36, we can’t be having that.

Shaving foamed up, I grab a razor and begin. Stubble this long is usually harder work than fresh growth, but this is effortless. Each stroke is just gripping the hair, rather than cutting it, it’s just pulling it out. Minutes later and I’m done. I towel and rub my face down – that has to be the easiest, closest(!) shave I’ve ever had. Of course this is no skin level shave, I actually have no facial hair, follicles and all. Still, Jen will be pleased.

In come’s my Rituximab infusion, I believe this will give my new immune system it’s first job to do. The infusion I believe strips away the surface of the B-cells, these cells are the long term memory of the immune system, they recognise foreign bodies, latch onto them sounding the alarm for the T-cells to attack. With their surfaces stripped the T-cells instead turn on them, cleansing the immune system of much of it’s memory, somehow leaving a portion of it to remember previous jabs, boosters and long term memory for infections such as Chicken Pox and Measles – I had them both as a kid. Such is the genius of Dr Fedorenko. The infusion is comfortable and lasts around 5 hours, in that time I’m kept busy replying to messages and watching a bit of Netflix.

Jen, Dad and Laura arrive around 5 o’clock. I’ve missed her so much, we have the biggest, longest hug I think we’ve ever had. I think we both even get a bit teary.

“Alex, you don’t wobble anymore.”

Jen tell’s me how much sturdier on my feet I am. I feel it. My standing is better, I show them how much better my walking is, my turning, I even show them my new party trick. A jump!

They’re amazed, and I couldn’t be happier to show them the benefit of my time here so far. Of course I am now day +11, post stem cell transplant.

The three of them now wearing blue hair netting, blue gowns to cover their clothes and blue covers on their shoes. It’s quite a picture, like three low-budget wise men. We spend the rest of the afternoon in my room talking about my time in Russia so far and a good catch up. It’s great to see them.

Around seven they head back to the hotel they’re staying at and I settle for the evening, watching some Derek on Netflix. It has to be said, what a superb programme that is.

At the end of the evening, I had a little bit of a tidy, sorted through my laundry, I wash up the plates and mugs we’ve just used, I get changed into something to sleep in, brush my teeth and then I realise…

I think my fatigue has gone!!!

Doing all those things should have really tired me out, but I just did them all back to back without any thought or effort. What’s more, whilst I was moving around I was turning on my ankles and at the hip, no tin-man shuffle turning, I just picked things up turned and moved.

It’s amazing, not only did I not feel tired, but I’m moving differently, …normally. But the body doesn’t tell you, there’s no iPhone notification saying ‘ping – you can do this now’. Like hopping out of bed a couple of days ago, without any thought things just happen. I didn’t give turning any thought, perhaps when you retain muscle memory, things just happen.

I’m elated!! I was hoping to see the fatigue lift after a few months or weeks, but days? Surely not.

The fatigue is lifting, I’m feeling less tin-man, more… dare I say Fred Astaire!
…video coming soon.

These pin’s were made for walking.

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.

Isolation – 6 days of hard Stem Cellin’!

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.

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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!

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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?

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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?

The Food – My Survival Guide

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!

sauces
The boys!

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. 😉

choco_powder_9ozWhite / 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?

egg_bread
Easy.

…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.

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Closest thing to a curry!

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!

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Mix it in there.

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.

tema

 

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…

ox_tongue

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.

I would have wished for a little grilling, it would have at least hidden the barbed wire licking that cow must have loved doing.

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.

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It’s mash and it’s tongue.

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!!

tongue_curry2
I’m almost a little bit proud of that


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.

The C-Word! …’Chemotherapy’.

Something I felt that I should talk about. The C-Word, the elephant in the room regarding HSCT and something that is potential a very delicate subject.

I’m absolutely not going to suggest that I’m any sort of authority, but totally wish to talk about how I’m getting on with it personally. In the hope it helps others who are considering HSCT and the prospect of chemotherapy for themselves.

Realising that this is a delicate subject, I for one am so fortunate that I have never had anyone close to me require life saving treatment with use of the drug to relieve them of their cancer or similar. Nor have I witnessed close hand it’s effects, …and dare I say devastation?

I’m so grateful that my requirement for chemotherapy is to bring relief, and I totally understand what it could mean for others.

My experience
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 very comfortable, like being sat back in a Winchester chair… And I still stand by that, absolutely, it may well have been water passed into my veins.

I did need to go to the loo a lot, a lot, lot! I think each dose was probably around 4 litres worth, plus saline drips and steroids too (I think). No biggie, just wheel the drip machine into the loo with you – sit comfortably.

And that was my four days. I’ve said before that I did research into the HSCT treatment I was receiving, but wanted to go in blind to what I would experience for the benefit of others. Not selfless, just incredibly frustrated at the scare stories, the expert advice we receive from medical experts suggesting we MS’ers are better off sticking to DMD’s and symptom drugs, rather than GET RID for ourselves. Using my blog to show others hopefully what to expect.

Now sat here long into my isolation time, I am feeling it’s effects. BUT NOTHING MAJOR – I’m pleased to say. Importantly, it has worked too, my blood tests confirm that my body is clear of the Leukocytes that have harmed me for the last eight years.

I’m already beginning to feel the benefits of a system free from MS too. (Woah, bit of a slip there – I need to save that for my next isolation post) 😉

The chemo effects, that’s what we’re talking about here. So firstly, yes it does kind of take what can be described as a good scrubbing brush to your digestive system. Though personally I had no nausea, or affected my appetite in anyway. But the passing of what you have consumed is the tricky part. I’ve gone many hours without needing, and in some cases only minutes apart. It can be small simple and painless, I have had one bout of early morning diarrhea, but far more of the former! Though this can lead to much paper use sadly and the effect that that can have on our posterior (not pretty reading – but being honest).

Skin. Well I’m a bloke, and my skin is ‘a bit dry‘. Now my wife, would rightly say ‘incredibly so and really need to look after myself’. There isn’t much I can do from isolation currently, but in all honestly and unlike me, I am looking forward to applying the moisture back. The current dryness could also come from the vodka swabs/bathes I’m using to clean with in the morning, as well as the added hand cleanser I’m using to look after myself. To some it could concern, but simply maybe after you’re home, just a good pamper trip to Boots (drugstore) for a job lot of quality skincare for a few weeks application might be all some might need to remedy and get back what’s been lost.

Worth adding. On the whole my body feels fine, I’ve never had greasy skin and my dryness appears to be mainly around my arms and hands.

Blemishes have arrived, though very few. more it seems where I might have knocked my feet rather than sprung-up. A blister on one foot, and some darker streaks have appeared close to toes. But all very minor.

Hair. Again it was well over a week a ago I shaved my head in anticipation. But I’ve still not noticed any loss at all. No gaps, areas – still just a headful of fuzz.

So there we are – that’s my chemo to date. It’s worked – and clearly it’s benefits FAR outweigh any negatives, into total insignificance.

I will add to this page as and when/if? Anything changes.

I really hope this helps any concerns with what many of us consider to be the scariest part of HSCT. …but is it?

Isolation – How’s it going so far?

Officially I’ve been in isolation for three days so far. The time has flown by. One man and his thought’s, the Russian media, white pants, a fan and a Wilson, who’d have thought it?

Wednesday – Day +01

One day post Day-Zero, I still wasn’t quite right for the full isolation lockdown yet despite moving in the day earlier. The Leukocytes (defence cells) were still knocking around, much like the unwelcome late stragglers at the end of a house party.

But not a problem, I just further got myself comfortable for my stay. Doctor Fedorenko mentioned that ‘the TV guys’ were still coming in to film, and would that still be okay? ‘Of course Doctor!’ You know me I’m such as media tart these days. ‘Leatherhead Man Takes Russia By Storm’

blog_news
One for the book I guess.

Moment’s 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 that they were looking for a positive piece on Dr Fedorenko, his work and international recognition. At least that reflected on the questions they asked me. Why Dr Fedorenko and Russia etc…

I think I then spent the rest of the day editing my Day Zero video, just another regular video studio my hospital room.

Thursday – Day +02 [Isolation Time]
Woken up bright and early for some fluid deposits, I sometimes barely even notice them anymore which is nice – the benefits of being on-tap for blood with a chest catheter I guess.

Then Doctor Fedorenko comes in ‘Good news!!’. He tells me of how those Leukocyte numbers have dropped low enough to go into full isolation mode. I suppose being told that I’m about to be locked in a room without any real comforts, shouldn’t bring any joy (much like a reality TV show), but this one does. A good bit of R&R, letting my body have some good rest for once. I might even get to watch or play with some of the gadgets I brought too. …I’ve been here two weeks, they’ve barely moved from my bags. Still not sure how I’ve made myself so busy?

alcohol_wash
Fragrant

A small nurse who I hadn’t seen before soon comes into the room with all sorts of alcoholic, scrub and scary Russian bottles. I’m shown the Vodka bath I’m to have, using a handful of cloths to use after a rinse shower. One for the overall body and the other for the more delicate areas. For example no one wants that reminder of when you once sprayed deodorant down there. 😉

She brings me some clothes to wear too. Woah! …no it’s okay the Doctor has seen my cupboards full of enough clean clothes and underwear. That was met with lots of finger wagging and a lots of shushie, fushesh and woashisheesh noises coming from that quite stern look of hers, as she strutted around the room like a flustered Yoda.

I lift them to the light, sigh and relent. All white – badly cut under length pants and the boxiest cut top I think I’ve ever seen. I fear that I’m going to look like a very bad background artist on Tenko for the next week or a bit of an odd John Lennon sit-in.

Of course in relenting, I’ll do the pants – no harm there I guess. But I’m going to be comfortable in my t-shirt and underwear. No more film crews I hope.

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Wilson

So, since I’m going to be alone in the room, I guess I’d best fashion up 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!”

Friday – Day +03
Sadly didn’t start too brightly today. As largely fine as the chemotherapy has been, it does kind of leave your internal digestion needing a bit of care. So annoyingly there was a bit of quick hop to the loo this morning. No big deal but I think it had a bit of a knock on effect on how I felt for the rest of the day.

The good news delivered by the good Dr.F was that my Leukocytes had more than halved again on yesterday’s score. Normal numbers are between 4-10 in the blood, mine were down to 0.14. So the remainder of my previous immune system really is hanging by a thread. Blood pressure checked and I’m good for the day. …so I thought.

Doctor Fedorenko walks into the room asks how I’m doing as he always does before he leaves for the day, it’s really nice that he does this visiting everyone I believe. All good it seems, so big smiles and handshakes. Seen to be believed, there is so much to love about this bloke!

Around 2pm, my usual check up arrives. Blood pressure reasonably fine, but do say that I’m feeling the heat a little as my reading then demonstrates. (Normal 37°) I think mine was 37.6°. Quick as a flash the Doctor returns – I thought he left ages ago. He springs into action, ‘okay it seems that you’re body is a little high, it happens for around 1 in 3 patients and is easily remedied.’ – ‘We’ll put you on a course of steroids and antibiotics to make sure everything is clear and give you regular monitoring’. ‘But you have nothing to worry about!!’ – I was feeling absolutely calm, only warm, but his reassurance is always welcome.

Very quickly in come the drips and I’m hooked up. Little more than ten minutes later I’m feeling cool, comfortable together with a fan in my room to boot too.

I was checked pretty much on the hour for the remainder of the day whilst my temperature fluctuated between 36.8-37.1°. Dr Nikolai also comes in later, saying that they’d thoroughly gone back over my mornings blood test and it shows nothing untoward. Talking about the diarrhea I suffered in the morning, perhaps just setting things off on the wrong foot and to let them know should it happen again.

Today the nurses were amazing, bringing me all the fluids I needed with constant checks and positive smiles when the scores were happy.

I upload my Day-Zero video. Just some thought’s about my day (a bit gushy). Which everyone has been so lovely about. Thank you!!

As the evening roles in, still feeling comfortable, I think about making the most of it and getting my head down around 9pm. Let’s hope to start a little better tomorrow.

So another minor hiccup on the road to Getting Rid. If it’s not me out gallivanting for a coffee, I’m somehow raising my temperature for something to write about. You didn’t want a boring blog now did you. You’re welcome. 😉

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

Saturday – Day +04
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.

wilson_03Maybe 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 picking his nose. Here it is then. #isolation’