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.

buckwheat
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…

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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. 😉

wilson_02

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’

 

DAY ZERO! – #15 What-a-day!

Sadly didn’t really get the sleep I hoped for. More persistent bladder emptying again, so much fluid! I woke around 8.30, had a torrent of message’s that I hadn’t been able to keep up with from the previous day. Awww it was so nice, so much support and positivity from friends and family, being miles away still letting you know you’re always being thought of, really started off my day well.

Also the reason I set up my LetsGetRid blog, was just to show people how to do this – without fear, helping with much expectation leading up to their own treatment, because stick a camera in front of someone and they turn into a Drama Queen, making everyone uneasy. Me, no dramas! Trust in my commentary, not a news soundbite!

But you know, it was all the new well wishers, those newly following me, about to embark on their own adventures, their closely interested loved ones too, that really set me off. My little blog was working!! People expressing how their fears had totally gone, seeing my experience and smilie face through it all, had shown them there really was no fight to it. It was their flood of messages that really had me going. I was getting tearier with each one. From those that I had got to know and those that don’t post, but wanted to reach out to me that morning and say so.

Then I opened my ‘Day Zero’ card from my wife Jen, and that was it – I was a flood of tears!! Writing the most beautiful message. I could barely speak to her on the phone moments later. I’ve got an image to uphold too!! 😉

So by this point it was close to 11am, and my important ‘1pm appointment’ was approaching. I made myself comfortable, Doctor Fedorenko came in and took blood pressures and asked how I doing? For the first time my blood was higher than the norm, all that message reading must have really hit something. I didn’t tell him about how soppy I’d just been – ‘just something in the eye y’know’.

Then in walks a nurse and hooks me up to a machine to monitor my levels. I keep an eye on the BPM, pushing 120 which wasn’t like me. So onto the comical techniques I’ve spoken about before, in through nose – out with a ‘Whooosaaaaaa’. I was soon and back down to a steady 65BPM.

I had my camera set up in the corner of the room to record the process, but unfortunately after switching it on and getting personally wired up, it turned out I was one of four transplants that day. So my camera set at maximum settings managed around 30 minutes of prep nursing, rather than the procedure itself ..shame. Either way, I just lay there feeling incredibly relaxed patiently awaiting my turn.

Rattle, clack, rumble …In arrives the entourage! The Doctor, his able aid Dr Nikolai, a nurse and Anastasia. More positive question and answers, telling me of what to expect and to report anything i feel as and when I do, to help him reflect on this ECG scoreboard.

I’m shown my bag of returning stem cells, box fresh, dripping with icy air. Like the Ambassador at his reception, I give him a little nod to proceed. 😉 Fortunately just the one bag, for the one day of collection, they’re then thawed out and syringed by the nurse into three large vials ready to be passed on and hooked onto my chest catheter, long placed there from my chemotherapy. Doctor places his hand on my arm and tells me of the side effects I may experience over the next few minutes, and we begin.

Doctor F. tells me to commentate as when I feel anything, so that he cross check his scoreboard. I tell him how the right hand side of my face is suddenly feeling rather flushed, not a problem your heart rate is just fluctuating to new fluid and difference in temperature, that subsides seconds later. My throat gets incredibly dry, like there’s an irritable piece of plastic there, this wasn’t pleasant but dissipates seconds later and not to be worth thinking about. I’m now getting the taste of tomatoes in my mouth, I can’t remember his reply, but I do remember how pleasant it actually was – that passed seconds later. Any crushing or pressing on the chest, Alex? Nope, none at all Doctor! Little more than 10 minutes and it’s all over. He proudly shows me a very empty looking cell bag. Through my oxygen mask I probably just pulled some silly big smile, and then just thanked them all. I then commented on just how easy that procedure really was. Totally at ease the whole way through, enjoyed the relaxing of it all, and the knowing that this just might be the end of a very long and dark road. Relief quickly washed over me, no drugs necessary (other than the saline drip I had just been hooked up to), I just lay there feeling content, a beautiful moment to myself reflecting on our near future – all the things my wife Jen and I have been missing for the last eight years.

I pick up my phone next to me, and sent a thumbs-up picture from me. Anastasia expertly took photo’s on my phone during the treatment, good thing too with my primed camera dying out long prematurely.

I let that send, and then immediately called Jen. “All done!!” We switched to FaceTime to talk about how it went and how comfortable it was. Difficult to recall what we spoke about, no doubt lots of positive things and how much we couldn’t wait to see each other again very soon.

After putting down the phone, I think I just laid there comfortably, enjoying a further ten minutes to myself. …oh and then just the obligatory Facebook announcement. ‘New man born’.

Time passes by quickly, time to party!! I get dressed and move myself to the sofa area in the hall where others are waiting, as well my fellow stem-cell-quadruplets. Doctor Fedorenko has his beautiful pouring of the fluid ceremony, the fluid used in the freezing process poured out over the floor in a evaporating display. Simple, but really beautiful. He delivers his words of meaning and kindness, we’re all given our Iris Pins, The Doctor’s little badge honouring the flower resembling new life, followed by his famous big smile and hug.

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 and show him what he has done for me and my (future) family very soon.

He gives everyone a big wave and wishes everyone a pleasant evening. There were some new people in the group today, so I go over and say hello. Vanessa and Tonia from Australia, they congratulate me on my Day Zero and we talk about who we are and how we got here. Then I get a ‘Ahh, you’re Alex from the Blog – we’ve been told we should meet you’. How lovely and amazing, not for glory, just the hoping that I’ve eased someone else’s expectations.

We all retire to our rooms – personally feeling a little bushed, and probably have just one or two messages waiting for me. Something like that anyway.

What a day!!! WHAT-A-DAY!! So much to reflect, 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. I make a couple of last calls, start thinking about my next this blog post and instead decide to retire and wallow in my new warmth and knowing.

Today has been incredible from the start. Never to be forgotten!

 

Day 15 – Isolation Room and the New Cut.

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’m gonna look forward to this rest day.

Knock, knock! Nope Anastasia has told me to get packing – I’m moving straight on to the Isolation room! Scooping all my belongings in to my suitcase, much like I would have done for the journey here without Jen’s help.

Then unload. I was of the idea that restrictions were probably quite stringent. Not that I picturing being pushed into a room and then hosed down. But being careful with all sorts of items, what to bring? – what stays in the case?

Gadgets are good (cruel not to), so I cleaned them all down and wires well. I have enough clean clothes to last me the likely duration, I wasn’t looking forward to half my arse falling those side slit gowns. So I’m pleased about that.

Importantly, my food and condiments are good to bring too – making sure they’re cooked approvingly. Microwaved and not applied on top cold. 

So I’m in, all unpacked, all anti-bac’d and ready for a bit of a stay. I’m actually looking forward to the days of nothing to do, MS is incredibly tiring when others are spending your precious energy for you. 

So I’m going to make use of the gadgety toys that I brought, that I just wouldn’t get the time to do at home. 😉 This could even get – ummm, therapeutic!

Tomorrow is a big day. Let’s put those stem cells back and get them cracking!

My new digs.

Day 14 – All Chemo’d Up!

– 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!?!?!

So I’m sat here on my hospital bed, glass of Coke, I’ve had a bit of fish for my tea, feeling kinda nice really.

Wow, the stories I’ve heard from (doctor) people about receiving chemotherapy. I know most have my actual interests at heart, but regardless – I have to get rid of my MS! If they had to break open my knee caps to apply it, pull off my toenails – so be it. But it was just something I had to do!!

But it happened in my case to be as pleasant as being sat in your smoking jacket back in a Winchester Armchair, having your Single Malt topped up again for the second time. Okay swap the scenery for hospital bed, a drip and a three hour wait. But considering the drastic contrast, you hopefully get the idea.

My first dose of chemotherapy came on Thursday, I did wonder what could happen naturally – no smoke without fire, but no issues. Friday was fine, with a touch of added entertainment, the ‘questioning old gits’, those tangled wires – certainly nothing freaky. Saturday I got the hang of it. And today (Sunday), actually enjoyed it – simply knowing it was the last, finishing off the job – and as always they come with a sleep.

Doctor Fedorenko did talk about refining his chemotherapy over time, for it not to be overkill.

So for me – the complete layman, I’ve just received four days of a lot of chemotherapy fluid and I feel perfectly comfortable. No nausea, sweats, headaches or pain, as far as I felt – it may have well have been water. I have needed the loo an awful lot (fluids & saline drips), my hands are a bit dry, infrequent tingly feet, I get sleepy and occasionally have felt like the MS has tried to make itself more pronounced occasionally, but I’ve been perfectly comfortable. Testament to the genius of the Doctor, with his accompanying pills and excellent staff care.

There surely cannot be a blanket to cover all ‘chemotherapy’. Yes, without doubt it can’t all be easy and painless, I’m incredibly fortunate to have received such an invasive therapy and feel lively enough to write about it. Chemo means so many things to people, brings hope of ridding terminal illness, mine I hope brings relief.

Tomorrow, I imagine that I will have many blood tests and checks to see all has gone well, and appreciate it’s still early days for me. The other patient’s here are still smiling, so I’m still going to sleep well tonight.

Please watch my video from this mornings dose. I talk about my experience of it all. I hope I’ve alleviated people’s concerns about this major part of the HSCT.

Day 12,13 – The MS Strikes Back.

I’m Day 2 – Chemo – Surprise ‘Em On the Beaches!
So I wake up feeling good, ready to take on another day’s battle with the ‘Insubordinate T-Cell’s’. After all, the previous chemo infusion may have been nectar for the ease it was to sup.

Planning on taking this day easier than the previous few, having made sure that I was online and caught up with all the amazing message’s I have been getting. (Big love to all!)  I decided to let the chemo sink in and let my body have it’s rest as it plots it’s internal battleground.

Getting up to go to loo, it feels like the chemo has heightened my spider MS senses, doubling up my usual symptoms. The MS giving a bit of a counter attack – I’m still here!! I take myself to the loo a little more careful than usual, a touch dizzy but totally fine. No biggie at all, it was a pretty poor attempt – like throwing a rock at the chemo tank.

I get into bed, crack open the laptop next to me, put on an easy film to fall asleep to. Things are going well. …and relax! Only then as I’m about to drift off into slumber, I get this feeling that I’m tangled in wires, proper spindly little ones – Wha? – Where? – How?  …I realise that I hadn’t quite sunk into that ‘sleep reality’ yet, I opened my eyes to see that all was okay and Doctor Fedorenko wasn’t actually trying a new experimental treatment on me. 😉

So, still very comfortable, time to drift off again. …next in walks a few elderly gentleman pointing at me ‘who’s this?’ – What do you mean who’s this, you’ve just come into… [Nope – Open eyes] …what IS going on here? Ah this must have been what Mindy Watt was talking about during her own care (Facebook UK HSCT Group), saying how she saw little aliens. Small hallucinations that come with the chemo, easy but still bizarre all the same.

Right come on people, I’ve got a body with some cleaning up to do on the inside – leave me be! Nope just again as I drift, suddenly a wave of panic sets over me! Visions of water flooding up from the keyboard of my laptop!!! …Ha, you’re not having me this time!! I open my eyes to a dry laptop and beautifully to the moment Will Smith punches an alien square in the face “Welcome to Earth”. I then fall into a great sleep. Poetic Mindy?

After rest I get a knock on the door from another patient, ‘fancy getting out for a walk?’. Yeah why not, I was feeling rather good after that sleep. Bit of fresh air and all that. Unfortunately for us Starbucks haven’t popped on every corner here yet (small mercies), but instead all we could think of was a place that was half an hour away, my walking isn’t good – it’s absolutely not half an hour good. An intelligent thought would be that shouldn’t be our only option, but I powered on. …We’ll get a cab back!

We arrived (very comfy chairs!!), good chat, ate some food and drink – conscious of our delicate chemo stomachs too. Then down to some bad planning on our part our cab wasn’t available. Bugger!

MS The Invisible Disease – The MS Strikes Back *Caution urged*

It was cold outside too. Fortunately I had a big jumper keeping my upper warm, but it’s my legs that suffer in the cold – like an old man they go TinMan. Together with only having a fraction of the feeling I used to have below the waist, it didn’t make for a pleasant walk back. It was however perked up by bumping into Anastasia walking back from the office, a little chat – ‘You haven’t seen us right ;)’. Then back into to my room around 9pm. Very fucking* tired indeed!

*apologies, but called for!

To make matters worse, that lack of sensation below the waist meant that I had made an unknown minor (contained) mess of myself below. No energy, cold, no muscle, no feeling – sh it happens!

Energy-wise, I’m now running so low on fumes. I somehow get into the shower, clean myself down, garments too. Get into bed clothes and relax, hoping the exertions don’t have any lasting effect. Borrowing tomorrow’s energy come at a very high premium.

So I’m in bed, slightly wired from the shock of it all. Thinking up comical words of relaxation wisdom – Whooossssa! *ching ching* To calm myself to sleep.

*Double caution – Careful now!* 

I think less than half hour into getting the rest, I noticed an intense pressure in my gut. Wow! I don’t think I’ve ever known anything like it, it happened far too quickly to be painful. That was the ‘chemo diarrhea’ I had heard about. I’ve heard about changing babies nappies, but that was something I’d never seen before.

Then. Back in the shower, clean garments, clean/improve/fold bedding, dress – call nurse!

By this point it was around 2am, I won’t say it* again but I was tired!!!! And a little worried for my day three of chemo, after all – the drug builds up. The nurses were wonderful and made sure I was comfortable again. Just a shame I then had the most broken sleep for a long time, conscious of every bodily movement, needing to pee every half hour, finding that I’d already started at times too. The problems of a very dysfunctional nervous system at it most disobedient.

Leaving the detail there. But I’m sure many MS sufferers will know what it’s like, when your body is at it’s very lowest ability to cope – it just won’t look after you!

I spoke to Dr Fedorenko this morning about my evening, and he was far from phased, which was reassuring, because I knew this was more down to overexertion on my part rather than the chemo – it just added to it.

SO! 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. I could have kept to the smooth, but I didn’t think I’d be doing a service if I didn’t express, even if it wasn’t my proudest moment. But all is absolutely good again.

Edit. Please remember the soul purpose of this blog is for fellow MS suffers to get an understanding day-to-day about my days here in Moscow and what to expect for themselves, and there’s nothing to fear about the treatment. If casual readers think I’ve given too much detail and perhaps should have saved face. MS is not pretty, but this is the strife I have been living with for eight years and needs to be told. I have also made the blog fun too, because that’s what I do. 😉

Day 3 – Chemo – Getting to the bunker

I’m having a selfish day today, yesterday I felt great until I went out. And confidently would have carried that on from where I left off. Today actually now that my body has settled, my third dose, has been smooth, without issue, so far without aliens, wires or old men.

So far I’m really surprised how easy the chemo has been to take. I’ve had no real effects to talk off. No nausea, no headaches, I could even argue that I don’t feel any different, perhaps just a little more tired. Hmmm, avoidable mishap aside.

Now day 13 into my treatment

I’ve had steroids, stem cell stimulants, tubing/drips, collection, chemotherapy, and I would never have imagined that I could have felt this comfortable! Ingrowing toenail I’ve heard is worse!!

There’s me wanting to put a brave face on for Russia, the team here have made me so relaxed, I don’t know what any of the fear could have been for.

Many people receive chemotherapy so many reasons. Mine brings me relief. I’m very fortunate.

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

After all that thought and expression, time for some sleep.

Day 10 – The Gun Show

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Miles apart, but never closer.
Firstly today I would like to start by wishing happy fourth year wedding anniversary to my beautiful wife, Jen. Thousand of miles apart and unable to share our day together unfortunately. Though she still made sure I had a card to open too. She’s the best!

All going well with the stem cell extraction on Tuesday, providing a whole 3 million of the troopers, I was rewarded with a day of rest ahead of the four days chemotherapy I’m about to undertake.

Though it did begin by waking me up to take the line out from my neck, quite pleased about that. Though just a day after it going in, I kind of stopped noticing it was really there. In came a nurse, she had a way with pretty Russian words that made the experience of having a neck de-tubing as pleasant as it could reasonably be. She offered to show me the plastic taken, ignorance can be bliss sometimes – I politely declined.

Then I was swiftly moved into another room, and told to lie flat on the bed. No faffing in this room, she may have asked how my hamster was but it really didn’t sound like it. She covered my neck over and started to prod for the best way in, for someone so merciless I was surprised she found it tricky, and instead chose a lower vein below my collar bone. For all the jokes, I think I prefer much that, it hides below my t-shirt and I’m back to full neck movements again. No more sleeping like Tutankhamun.

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 not antisocial). It was only around 6pm, but thinking about it, this was probably my first day this week without any steroids. So I guess I should have expected this lull coming at some point.

I headed back, put on a film and just slept. Sparko! Next thing I know it’s 11pm, wow where did that time go? Clearly needing the sleep a little more than first thought. Got a couple of phone call’s in, then wondered how easy I was going to return back to sleep again.

[Like a bolt to the head – out!]

Knock knock! In walks the clatter of my Chemotherapy breakfast. It’s 9.30am – I’ve slept almost comatose for 15 hours. And to think that I stopped taking the sleeping pills a couple of nights ago!

Still feeling snug to the comforts around me, I roll over a touch and show off my new Chemo line in. I’m asked how I am? Checked for blood pressures, all good. So let’s proceed!

Day 1 – Chemotherapy
Bring out the guns, the sloth-like MS won’t know what’s hit it!!

Three hours came and went very smoothly indeed. Other than the occasional loo interruptions. Seeing myself pushing a drip towards the sanctuary was certainly something I’d have rather waited to see in my geri’ days.

I’ve done a little video blog. Though I have since worked out that it’s the lack of the steroid I had been living on, that might be why I’m now so tired (my sleepy/slow brain). …oh and now the chemotherapy, and now that noise! (it’s on the video)

So, it’s been a day of action depending which way you’re looking at it. If you’re an MS-dwelling, good for nothing T-cell – you’ve just got a bit of a taste of the Pain Train that’s about to arrive!! Platform ‘get out the bloody way’.

Or you’ve just slowly watched me get a little more sleepy, letting the good stuff do it’s job.

Thank you for everyones fantastic messages today, sadly with everything setting in, I am beginning to feel really sleepy now and will try to get around to them as soon as I can.

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