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!! ūüėČ

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. ūüėČ 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. ūüėČ 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. ūüėČ

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. ūüėČ

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

IMG_0178
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 fianc√© 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

 

Day 8 – The Harvest Festival

 

With a little knock on the door this morning in came Dr Fedorenko, wheeling a little trolly behind him. Either his knock-out sleeping pills are still working well, or he’s a little early. Yup about an hour earlier than I expected (or remembered) in he walks with his wheel’s of steel. Lines the machine up, also raising my bed height for a better view of what’s about to happen. No time for a shower, I’m getting my tube lines wired up from my neck whilst Anastasia is making sure I’m comfortable for my Lennon-esque bed sit in. Make’s me a coffee and passes me every possible gadget and associated cable I could need too. After a few applied squirts of alcohol, the machine spools up with pretty little lines of crimson making their way around the tubes like one of those fun drinking straws. A nurse hangs over a long bottle over the side of the bed. Five hours she says. Suddenly the strong coffee may have been a mistake.

After various pleasantries, okays – thumbs up’s and smiles they leave me to my devices. I lie back and just think how amazingly relaxed I’m feeling. Leading up to this trip meant so much, fundraising, working, meeting people and general getting ready, just laying there was just what I’ve needed for a long time – Bliss. Despite that the machine took my blood twice around to be filtered, I didn’t feel a thing. I lay there, kept up with messages, a little bit of music. All I needed was some oils and lemongrass and I could have easily been elsewhere.

Five hours later Doctor Fedorenko came back in to the the room, inspected the bag of cells and said confidently that it looked a good colour and consistency. Job’s a good’un, now for that shower I had been hankering for. The doctor says give us a little time and we’ll have the numbers for you.  Once all showered up, a couple of the other lads from the ward ask how it went? Having no previous on this sort of thing before.
Yup, good, comfortable. No dramas – None of the bone pain I’d heard of!!
– What you only managed one bag of cells!?

Sods!! Fortunately Doctor Fedder’s was quick on hand with a big smile and a hug for me announcing three millions cells collected!!! Nailed it!!!!! ūüôā

2.9 from the others. Ahem. ūüėČ

Just as I’m considering settling for the evening there’s a knock at the door, you ready yet? Haha I guess the lad had a great idea, but didn’t think to tell anyone else. Ten minutes later we’re both sat in a restaurant clinking a good Russian beer to end a good day.

Na Zdorovie!

 

Day 7 – Everything’s in place.

So Jen went home last night, there was little point in her staying really, I’m¬†just being dosed up with regular steroids, soon I’ll be on¬†Chemo, then¬†isolation¬†when visiting should be avoided anyway.¬†If Jen left to carry on things back¬†at home, time would no doubt fly far quicker for her, it made sense. She’ll be back in no time for the last week.

Technical support

As¬†the lift doors¬†in front of Jen closed, I began to start feeling a little teary, I don’t normally but the thought of not seeing her for weeks whilst undergoing a major procedure did get to me a little. I soon¬†got a little text saying that she got home okay, and that the cat’s sound like they’ve been looked after well. Soon after I get a little FaceTime call from Jen, she doesn’t normally like to do the face thing. But I thought awww nice, she wants to see my little face before bed! Silly me, the television was playing up and she needed to know what buttons to press, charming! Naturally we got BBC Casualty playing once she stopped pressing the buttons I told her not to. ūüėČ ‘Awww I am going to really miss you’. I know my place. ūüėČ

Got woken up to a big smilie from Dr Fedorenko at 9.30am walking into my room. His sleeping tablets are just the best, I’ve been sleeping through everything and starting to¬†wake¬†feeling refreshed. Sleep like that I just don’t get¬†anymore. Something I hope that will return post treatment. He reminds me of my day ahead receiving my Hickman Line/Neck/Catheter in the morning followed soon by another steroid drip. This time taking my new neck¬†line for a spin.

Naturally the line wasn’t a part of the treatment I looked forward to, a long pipe placed down your jugular for some easy¬†fluid movement. But if it saves multiple jabs, so be it. I’ve had a swab far up my nose – I can do this!!

Actually the placement wasn’t too bad at all, it was under local anaesthetic, I felt the old pinch, but little more and it was done in minutes. Followed by an x-ray to confirm the job was a good one.

I’ve sat with it all day, and it’s no more annoying than a slight crick¬†in the neck. Less movement as expected, but you quickly get used to it. I’ll let you know how the sleeping goes.

And then last of all tonight, is the last of my G-CSF shots to get my stem cells moving, ready for their extraction tomorrow! The new neck line will really come into it’s own.

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

Day 6 – More of the ‘roids!

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

How do I feel, actually not too different! A little bit extra jittery, and needing to go to the loo a bit more, and urgently. But comfortable. Twice an evening I’ve been given late shots of G-CSF, a drug that tells the¬†stem cells to leave my bone marrow and¬†enter my blood stream. And largely still don’t feel any different. No bone pain which I’d heard of, but I’m laid out on my bed, just writing and editing¬†on my laptop and perfectly happy.

Life, work and fundraising has just been so manic before leaving for Russia. Currently just being sat here relaxing I couldn’t be happier.¬†It actually feels a little Holiday-esque. I’m so well looked after, complete with smiles and there is sooo much food to eat. Though I’ll talk about food very soon.

Yesterday was much of the same, steroids and jabs, which gave me a nice few hours out of the hospital with Jen to enjoy before she leaves to return home today. We grabbed something to eat, chatted and slowly walked back.

As we approached the hospital this happened.

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

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

So Jen has left to go back home for a few weeks. I¬†don’t do tears,¬†but once she left I couldn’t¬†help it this time. There’s no one better! I’m pleased that Jen’s going home, time will fly much quicker now for her and I’ll be home before she knows it.

hotel_view
I’m sure it’ll look lovely when it’s finished!

Besides I did spend a night in her hotel and the construction outside was so noisy, and hardly made for a bright awakening in the morning.

Like the hotel, I had equally been finding it hard to sleep in the hospital too, certainly not because of any noise, it’s lovely and peaceful here. But I guess there are the thought’s¬†about the treatment, what’s to come afterwards and just being in a strange place, must play some sort of part. Then Dr Fedorenko suggested a sleeping pill, which after taking it doesn’t seem to make us too drowsy, then¬†[gone]! Great stuff, slept right through to 9.30am, when normally I’ve been hit by the light coming up at 6am.

That apprehension.

I actually have none, none at all, it’s all done at a lovely pace here, talking to others who are a week or two ahead of me, don’t look ‘ill’ considering they’ve had a large blast of¬†Chemotherapy, they have smiles on their faces. and are taking it all their stride, with ease it seems. Dr Fedorenko has spoken before about long refining his treatment, and I think as Chemo goes he’s nailed it. I haven’t heard of one person here saying they’ve needed to vomit.

As I’ve said before, I’m totally sure I’ve made the right choice coming to Russia. I couldn’t be more¬†relaxed, fed and well looked after.

Tonight will be my last two jabs of the stem cell stimulants, lets hope they’ve all done their job. Then tomorrow, I get a catheter placed in my neck line, this is for easy drug administration, but more importantly to filter my blood for those stem cell troopers.

Video Time
I¬†run a little known YouTube channel called ‘The Palm Off‘, something I do at weekends, it keeps me busy whilst I’m indoors. Naturally they’re probably not sure where I’ve gone, my viewers have been so supportive since¬†I told them of my MS,¬†so I’ve done this video to keep them updated and to tell my story. Enjoy!

Day 4 – Rallying the troops

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

So, I’ve had a lovely day. Jen came around 11am, we watched some Netflix and just enjoyed each others company. Towards the end of the day fellow patient – Kamil from Poland, who I’ve gotten to know here, came in for a chat and suggested that because¬†that we didn’t have to stay in the hospital grounds, that the three of us should go¬†for a meal out. Sadly Jen was feeling rather tired, went back to the hotel, so just the two us went to the local recommended. It appears that he’s¬†to be my stem cell twin too. We both arrived on the same day, and scheduled to receive all treatment simultaneously. Interestingly, we both work in similar creative fields, both 36 and¬†very similar¬†minded. He’s a great lad, and going to help keep each other company.¬†For someone who’s never been to an English speaking country, has incredible English.

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

Getting around¬†was rather a worry¬†before we came out, foreign country, don’t know the roads, people or what level of wits you might have to keep about you. Another thing the hospital has¬†thought about brilliantly, a hospital driver comes to us collect to and from the hospital, and they¬†also provide the contact details¬†for a couple of local trusted taxi drivers too. We’ve been using one guy called Andrew, and he has been truly amazing and has made a real difference to our stay! Arrives¬†very quickly, super¬†friendly, speaks brilliant¬†English and very reasonably priced. Originally a bit nervous about leaving¬†my wife Jen to make her own way around Moscow using random taxis, my mum came to Russia¬†too.¬†Of course to support us both, but also for a bit of safety in numbers. Unfortunately my mum took rather unwell during her stay, and sadly really needed to head back home. If things were different she may have been forced to stay, but because Andrew has made our travel situation so problem-free, my mum has been able to head home without worry. Anyone coming to Moscow, honestly doesn’t have to worry. Thanks Andrew!!

Partay!

The other day I mentioned that¬†Dr Fedorenko threw a little party, to celebrate a stem cell birthday. Also known as ‘Day Zero’, the first day of the rest of their lives, without MS and hopefully time to begin healing. I have included below the video I took of the ceremony¬†that afternoon.¬†I believe only our Dr.F does this,¬†he doesn’t have to do it but¬†knows how much this day actually means to us soon-to-be-free MS’ers.¬†What I’ve really learnt in my short time here so far is that he truly¬†cares – and I don’t say that lightly! The ceremony consists of a short speech talking about the treatment he gives, and his little gift of an Iris flower pin as a meaning of¬†belief in the future. Followed by the pouring the fluid used in freezing the patients stem cells on the floor. It may be simple, but it was very humbling and proud to be there on another persons Day Zero event, another birth if you will. This day were¬†stem cell twins Sandy and Berit, congratulations to you both and I wish you both good luck in your¬†recoveries and many years of enjoying life MS free. xxx

 

Day 2 – The Test Results

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

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

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

Back on topic… So with a¬†positive health check, Dr.F¬†with a great big smile on his face and a hug, said that I’m good for the treatment. I couldn’t be happier. Naturally I asked where he thought my physical state could return to,¬†where I was three years ago he replied. But with determination and good physio, potentially wherever I want to be, suggesting that healing is a lot to do with¬†the mind. That’ll do for me!

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

I’m going to finish this post by thanking everyone for their support. Never before have I seen so many Facebook comments and likes to all that¬†Jen and I post. They’re well into the hundreds! Honestly, being so far from home with support like that means the world to me. To the crowds at the HSCT groups on Facebook too, those hunting the treatment and the veterans¬†too, invaluable advice and cheers to someone currently going through it all.

Thank you!