Sunday – Day + 12
Another good nights sleep, I’m not really sure what’s changed to be honest. Maybe I’m just starting to feel totally comfortable in myself, the treatment is very nearly over, I’m feeling relaxed in my newly transformed stem cells, the physical changes feel good and probably most of all I do finally feel MS free! It’s the most fantastic feeling, the physical weight feels like it’s been lifted, suddenly my future is no longer uncertain, I can relax in the hope I do carry on improving, do the things I miss and best of all – warm in the knowledge that I will be the father I always wanted to be.
…Or maybe it is just the Michael Jackson music?
I’m pleased to say that I still haven’t felt anything from the long Rituximab infusion yesterday, wasn’t sure what to expect, but so far so good.
Doctor Fedorenko comes in for his morning chat, more big smiles and handshakes. Today he says my Leukocytes have jumped up to to 6.6M (4-10 average), so naturally I’m happy with that. It’s a rest day today so I tell him how we plan to go out for the afternoon. Immediately he’s concerned about my chest line, he just doesn’t want the site to get infected for being outside. It’s due out tomorrow but being that I’ve only got a blood test tomorrow, it can instead come out today he says. Good man, no arguments from me, get this tube out pronto!
Now the NHS (as much as we love ’em) would probably ruin my day out by keeping me in until they took it out – whenever that would be. But literally only a couple of minutes later in comes a nurse ready to remove it. Service indeed!!! Now I’ve had this thing in my chest for nearly three weeks, I’ve no idea how nested it might have become. As she gets to it I look away, I don’t feel the need to see this thing pulled out, it’s a long tube going right down to my heart. I’m not particularly squeamish, I just believe that ignorance is bliss. Even without anaesthetic I didn’t feel very much at all, only a very little bit of pulling on the skin – certainly no discomfort, no blood either. I didn’t know what to expect but that was easy, and now I’m ready for Jen to arrive.
Jen comes over alone as my dad and sister Laura have gone to Red Square. I’d love to have gone whilst I’m here, but days out like that just tend to be too stressful for me. My body just tends to misbehave, leaving me more concerned about keeping myself straight than actually being able to enjoy myself. Days out to the unknown, one of the many things I hope to enjoy again soon.
After a hello and another big hug with Jen …all beautifully cladded in blue and face mask. Almost the first thing she says is ‘what’s happened to your head?‘, I know it’s gone a bit patchy today. ‘A bit? …it’s pretty bad‘. I go take a closer look at my thinker in the mirror. Wow! I look like the cuddly toy off the front of a bin man’s lorry! Jen for a moment thinks I’m happy with this look, no(!) I am not. She says that the back of my head is almost totally bald, much like a babies head. I look back at my pillow, like Wayne Rooney’s worst nightmare – it’s covered in hair. Nice!
Being that it pulls out without any resistance we go looking for some tape, the nurses don’t seem to have any. In conversation with the inspirational Cathy Hayes (Cathy’s MS Cure), who arrived around a week ago, said she had some Gaffer Tape with her that she could spare. Brilliant! I never did ask why she brought industrial tape with her to Russia? Must be an obvious travel thing that the rest of us haven’t caught up with. Clever Aussies!
So… Pfffffffft! Jen pulls away the first strip and asks where to put it? Well, it’s got to go straight down the middle hasn’t it, in the style of an Irish Mohawk. Now that I’ve written it, it’s probably not the best name for it at all. Apologies to anyone Irish, though I too am a little bit Irish (…who isn’t?), but we’ll now call it a Backward Mohawk.
The strangest haircut I’ve ever had! Not a particularly pleasant one either, industrial tape is strong! Ripping it off quickly didn’t seem like a good idea, I didn’t really want what’s left to be a bloodshot skull cap instead. So carefully does it, a slow and steady pull seemed to work. Before Russia, I’d never had a skinhead let alone been bald!
Am I rocking it?
Jesse!! Do I go all the whole Breaking Bad – goatee and black hat to come? Thinking that I was going to reveal a clean bonce underneath, weirdly already growing is the beginnings of new hair! I don’t know where they came from? But there’s good coverage of this light peach fuzz like growth across my head. It’s so light I don’t know if I should shave it off?
With my new streamline (slightly fuzzy) look, chest tube gone, we’re ready to head out. Handy because my dad and Laura have just arrived back from central Moscow. Apparently on their arrival to Red Square my sister asked “where is it?” I think that’s good enough for me to know that maybe I’m not missing too much, for the moment at least. I do hope to one day return when I’m more physically able to enjoy it.
Wheelchair in the back of Andrey (the legend)’s taxi, mask on and we’re off. We go to the Tsarist Palace market over by the Vega hotel, it’s home to a souvenir market, hospitality and wedding venue, no actual Tsar’s sadly. Apparently the ‘palace’ was only built 15 years ago. Russia is full of rich history, yet the only bit I manage to go and visit has McDonald’s restaurants older than it!
The market stalls are colourful, selling all sorts of things/tat. Blankets, crockery, Russian dolls, knock-off fabergé eggs, military paraphernalia and best of all – Putin Mugs! I didn’t know those eggs were a Russian thing, wealthy Tsars used to give them to their wives at Easter. …And Russian dolls were traditionally given on pancake day!*
*I made that up.
Jen got an egg, some dolls (when in Rome) and I just had to get some mugs for the office. Beauties don’t you think, my particular favourite is him feeding the pony. Class! Though I reckon a few goes in the dishwasher and they’ll probably fade quicker than Andy Murray against Novak Djokovic.
Annoyingly, going around the market wasn’t very comfortable for me, the chemotherapy does do funny things to your insides. Frequently needing the loo is quite common, so a couple of very urgent wheels to the loo were very much required. The market doesn’t have the cleanest loo, and paying a couple of coins to the miserable old bag on the door for the honour, was hardly a thrill. The way I was feeling today, I’m pleased I didn’t go to Red Square (sadly).
We head back to the Vega hotel, visiting the coffee shop in the lobby. Which is massively recommended, some really good coffee served there. A large cappuccino later, which didn’t really help my bladder at all (but certainly didn’t regret it), I got the urgent call to go to the loo (once again). Walking towards the boys room I notice that suddenly I’m walking much freer now, easier, longer strides and back up to my old normal walking pace. Still with the stick, but a massive improvement. I couldn’t be happier, so many noticeable changes, I’m now wondering what could soon be possible?
At the end of a really nice day I have to debate whether I share a room with Jen and get back the the hospital at 7am for my blood test, or just head back now. Excruciatingly I decide to go back to the hospital now, it’s been a long day and probably best I take it easy, rather than a very early start.
I get back to my room and settle for the evening. Jacko music on.
Monday – Day + 13
Woken up nice and early by the nurse, she of course wants a bit of claret from me. My last blood test.
10am, the good doctor arrives all smiles and handshakes as always, I’m going to miss this fella! The news is that my Leukocytes have jump up over a million since yesterday, now over 7.7M. We’re doing well. I thank him for his help letting me go out for the day yesterday and how it was nice to get out for a bit, even if it was a plastic palace. He tells me that he’ll be back later in the morning for our final consultation.
Jen arrives shortly after and we begin to pack up my room, suddenly it’s now feeling very real and all coming to an end. My amazing trip, my month in hospital, which I never imagined would have been such an unforgettable experience, meeting so many incredible, inspirational people along the way!
People online ask how I’m going to get Wilson home? Well I’m not going to take the loo roll with me. Everyone is shocked!! …I’m not packing the roll. Don’t worry he’ll be getting a 3-ply upgrade when he gets home. I’m told he won’t like that at all. I hate that little sod, everyone loves him more that me! 😉
Doctor Fedorenko comes back into the room. He talks about how positively I’ve taken to the treatment and everything so far is looking very good. We discuss my care and how I need to look after myself once I return home. I’m expecting to lose my summer, avoid people and stay indoors. Hermit-like.
Not at all, suddenly I’ve got my summer back. For the first three months I’m to avoid crowded places and wear a mask if I do. Avoid being in the sun, the chemo has left my skin very dry and does need protecting. Pets are fine, but wash you hands after touching them, it seems it’s human contact I’m to be careful of, certainly keeping away from anyone with a bug/virus of any sort. Food-wise it was said a few times …AVOID FOOD POISONING!! It can be very dangerous, but it’s all common sense. Don’t have cold salads and fruits for the first couple of months, unless you can guarantee that they’re totally clean. The same for takeaways as sadly we can’t guarantee their preparation and cleanliness. Make sure all fish, meat and eggs are totally cooked through. No rare steaks for me!
…and if I get a cold, infection or high temperature – don’t panic, just make sure I see a doctor quickly, to help get on top of and get it cleared up as soon as possible.
I ask him about my fertility, has it likely to have been wiped out? Not necessarily he says, which does surprise me. I did get myself frozen before my trip, but he says to get myself checked after 6 months, I could find that I’m okay! Amazing! I do hope so, but we should still avoid getting pregnant in that time. Things are looking up! I’ve heard so many scary stories about how to look after yourself post HSCT, but this is refreshing. I will still of course listen to what the masses say, but it sounds like it’s all about common sense.
The good Dr Denis Fedorenko then thanks me for choosing the A.A. Maximov Hospital wishes me a lifetime of good health. He then says that he’d really like to show me the new 3rd floor, they’ve been expanding the department, it’s nearly ready and I’m going to be the first patient to see it!! Exciting stuff! That explains the occasional hammering I’ve been hearing over the last month. We decide that it’ll be better to go take a look tomorrow when the builders aren’t there. Looking forward to that.
Dad and Laura arrive in a cab to pick us up on their way back to the hotel. They’ve had a random morning out visiting some local interests. I grab what I need for the night, leaving my suitcase behind, tonight I’m finally going to stay with Jen for the first time in nearly a month. We all jump in the cab and head off to the hotel. Once checked in, we go for a coffee. Why not!
After sitting down we see our Australian friends; Cathy & Ben Hayes and make room for them at our table. Cathy is just about to begin her treatment, her fella Ben has come along to be with her for the entire month. Good man!
We spend the next couple of hours talking all sorts. My family do their best to embarrass me with stories of my past, we learn of Cathy’s family and Mum & Dad (Di & Phil), who sound like such an entertaining couple. I’m reminded just how similar UK & Aussie humour is – sharp! It’s brilliant to finally meet Cathy, she’s been following my blog from the start, talking online and sending messages of support. I’ve been telling her that she has nothing to fear out here, but so much to look forward to. We talk how Jen & I hope to get to Oz in the near future, as we’ve been promising ourselves for so long to go and visit people. We’d also love to visit Cathy & Ben and her incredible parents who have been messaging too, giving me fantastic support. I feel like I know them already!
Cathy & Ben head back to their room and the four us go for some food in the hotel restaurant, I then realise that I’m about to have some proper food, or at least I hope so. Once I’m sat down and have ordered my Vodka cocktail, I then remember what Dr Fedorenko said about food …oop! Being not sure of a cleanliness of the kitchen? Then again on leaving the hospital he didn’t say not to eat out, so I’m going to apply the common sense he suggested. No salads, no undercooked meat etc…
Again when in Rome, to go with my brilliant Vodka cocktail (it’s so good) I order the beef Stroganoff. I’ve had it at home, it’s good but I’ve got to try it whilst in Moscow and I’m so pleased I did, it’s beautiful and has to be tried. Fortunately it comes with potato mash, the beef is cooked through so I’m confident it’s fine to eat. Good eating indeed!
After a good meal and a chat, we all head back to our rooms. This was yet another fun nights attempt at some sleep, no amount of Jacko was going me tonight. The Vega isn’t the greatest hotel, far from it – but the amount of noisy late night construction and car burnouts outside really made for the worst nights sleep ever. Just hoping to be able to sleep on the plane tomorrow.
Tuesday – Day + 14
I would say I wake up, but I get up. We go down for breakfast, in fairness the hotel do put on a massive selection, but sadly is more quantity than quality, a bit of a gastroenteritis minefield for most, but I’m going to be uber cautious. Keeping to scrambled egg and sausages, only taking the fresh egg as it arrives. We all check out and return to the hospital.
We go back to the hospital rather than straight to the airport, to see the hospital finance fella who has a final contract for me to sign, usual formalities and because the hospital have already organised a driver to take us all the to airport.
The doctor comes to greet us for the last time and takes us downstairs to the third floor as promised. The new department is in it’s final stages of decoration, a fine layer of dust covering the surfaces, but it’s looking great, very spacious and some really nice touches. I’m almost wishing my treatment was a month or two later to enjoy it! What was really nice is that Dr.F wants me to share pictures of it all. I didn’t think he’d even known of my blog, but he’s asked if I’d share it here. Another great Let’s Get Rid exclusive! …I’m getting so egotistical these days. 😉
We hear so much of the great Russian waiting list, and it’s brilliant to know that they’re doing all they can to reduce that wait for everybody. They’ve now nearly doubled their international patient capacity. The doctor’s going to be a very busy man indeed, like he wasn’t enough already!
A big final hug and handshakes from the Doctor. The work this man does, the lives he has saved (ability speaking), so caring, he knows his achievements yet he his so humble and understated. He is an absolute living legend among us. I’ve said before, I don’t do heroes – but this man is mine! I hope to meet you again in years to come and show you what you have done for me.
I let him go and work his magic elsewhere, I sign their pieces of paper and say goodbye to the place I’ve called home for the last month. Mask on. I actually feel sad leaving a hospital – how is that even possible!?
We’re driven to the airport where we find the finance fella waiting for us, we weren’t expecting that. He and our driver wheel me and our luggage through to check-in, marching us up to 1st class desk, waving away any non-1st class questions and gets us checked in pronto. He thanks me for my custom and he’s on his way. Service indeed! Sadly that’s where the first class stopped.
A very Russian looking guy suddenly pops up, I can’t define this thinking but he has a bushy moustache and he’s big. We tell him thank you, we can manage ourselves to departures, but he absolutely insists. No point in arguing. As we’re about to move, Jen tell’s him that she’s going to need a cigarette ahead of moving on, after all she’s not going to get another until we’re out of the other side of Heathrow. Our new friend says ‘Ah!’ raising his finger, he then wheel’s us further into the concourse, thinking that he’s going to take us to one of those hilarious animal style pens that smokers are herded in to. Nope, he finds a nook between the concourse window and a lift, well out the way of people and stashes me there!! Woah, woah, woah, whats this!?!? As I quickly stand up, arms out to the side, turning around from my wheelchair like a forgetful fraud. ‘Boris’ barely notices my cry, Jen and Laura are in hysterics as he tells Jen to go back the way we came and have her fag out the front entrance. I should get angry about it, but it’s so ridiculous and backward eastern european, I just can’t help but laugh in astonishment. What does he think? I’m going to get stolen? Boris then vanishes, Laura’s gone to keep Jen company, my dad has taken the opportunity to nip to the loo. I then move myself to a bench close-by and wait for the others to return. I hate being sat in that wheelchair.
The gang are back and so too is Boris, totally oblivious of the treatment he’s dished, though not quite sure why I wasn’t still in my chair, probably now thinking he didn’t stash me well enough. He whisks us all through security to departures, he offers to take me alone to the gate, ‘no thanks Boris, really you’ve done enough – we can go from here’. We take small wander around the shops, we each buy some vodka to take home. We buy some Beluga stuff and some Kremlin Award Vodka which sounds promising, it’s either the best vodka around or the one who offered Vladimir the best ‘handshake’. Either way, I’m looking forward to giving these a try.
After a coffee and a bit of time killing, we get to the gate. Being the one in the chair, I present myself to the staff on the door, where I wait until being let on the plane. The doors open and there’s then a bit of a rush to get to the front of the queue, which I never understand at all as we’ve all got designated seats? …We get on the plane, in the same seats we chose when we checked in.
[Imagine hilarious montage of plane travel here]
On arrivals at Heathrow, to my total surprise is my Mum, Jacqueline, my brother Phil and his girlfriend Karen and Laura’s husband Mark are there waiting for me. Amazing, I had no idea and what a fantastic welcome home. I show off a little of my newly returned abilities, the Tin Man has gone and I’m moving far more fluidly. Everyone is amazed, it’s all happened so quickly. Everyone gets a hug, but the one from my Mum is tight, long an teary. Year’s of watching her son going physically downhill, the worries and stress that came with MS and the uncertain future – now gone.
We’ve done it, I’m home …WE GOT RID!!
The drive home feels good. The evening sun is shining as it goes down, the familiarity of the roads, everything written in English and the awful road quality of the M25, it’s great to be home. Walking through the door, plonking myself down in my favourite place on the sofa – my ‘sanctuary’ – it feels amazing. Though with a new found ability for life, I’m hoping to rely on my sanctuary far less in future. Our two cats have forgotten who I am. Life starts (again) here!
…not a chance. This is just the beginning!! 😉
16 thoughts on “My last days in Russia – The Final Part”
So happy for you!!!! Believe me!!
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Thank you! 🙂
Caught your radio surrey interview, great to hear your doing so well. It mentioned you had to raise £45000. I see from your blog you say cost was $45000…..can you clarify?
Hey James. I’m pleased you caught my interview, I hope it has helped in some way. I did have to raise £45k GBP, the money covered expenses and the treatment in Russia (£32k). The price of the treatment goes up to $50k USD in August. The pound isn’t quite as strong now, I hope the overall cost hasn’t inflated too much since.
Thanks for that. Did you sort out your visa yourself or did you use an agency. What type of visa did you get?
Definitely used an agency, it took away a lot of hoops to jump through, but still had to give finger prints! It was just a standard 30 day. It was suggested not to do a medical visa as it just adds extra unnecessary complication.
Can you advise which agency you used?
I used their agency in Kensington. I think it was slightly less than £200 pp.
Sorry for all the questions but how easy was it to get MRI scans/reports from your Doctor to send to Russia?
No worries, happy to help! …it wasn’t, but fortunately my MS nurse was very good in retrieving the reports for me. I then passed them on to Russia. 🙂
Many thanks……final question (for now), did you exceed the 30 days for the visa? If so, did this cause any problems?
No worries, nope a couple of days shy of the 30. Don’t worry they’re very conscious of the visa and do all they can to make sure you’re treated within that timeframe.
Nice interview you made with Dr. Fedorenko and Anastasia. How are you doing? Are you back in the UK?
My girlfriend just got diagnosed with MS and her first 6 months with regular treatment has not stop the progression og lesions on MRI. I’m trying to gather as much information regarding HSCT and I’m very curious to know about your progress post HSCT, but positive and negative.
Hope you are doing fine! Good luck with our recover!
Jørgen, I’m so sorry – I’ve only just seen this message. I’m also so sorry to hear of your girlfriend. Did you manage to make a good decision regarding HSCT?
I 100% recommend it – I’m doing so much better these days, so much stronger and walking well and best of all – I have my life back!
I enjoy your journey! Whats your status today? Mindblown if you feel the status before. A blogpost would be interesting!
Wish you all the best!
Hey Patrick, thanks for your message. You’re right I should update, do plan to soon. I’ve suffered the same thing as all HSCT’ers do – going off the radar, simply because we’re busy again, making up for the life we lost before treatment. My status is simple, I feel incredible and I really do have my life back. I recently spoke about it here if you’re interested – https://youtu.be/UCX7noi5gLg