My last days in Russia – Part 1

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Alex, you don’t wobble anymore.”

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

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

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

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

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

I think my fatigue has gone!!!

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

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

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

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

14 thoughts on “My last days in Russia – Part 1

  1. MRS ANNE L AUSTIN

    Great to hear all this latest news – can’t wait for part 2 – take it easy and don’t push too much – can’t believe you’re still recovering from chemo!

    Like

  2. Jyoti

    It’s amazing how you are recovering so fast. As a fellow MSer I am really happy when I see you improving. And I always look forward to reading /watching your blogs. I hope one day doctor F will treat me too. All the best to you and hope you recover very fast.

    Liked by 1 person

    1. It’s quite incredible, I would never have quite imagined it myself. But I believe being positive plays a big part. Thank you, it’s great to know many are supporting me. I hope you too get to see our man in Russia, have you applied yet?

      Like

  3. Shelly

    Than you so much for sharing your journey with us. My friend is there now from the United States and started his testing today to see if he is a candidate for the treatment. You have set my mind at ease with your honesty. Thank you!

    Liked by 1 person

    1. No worries at all Shelly, you’re very welcome. The purpose of the blog was to show that the treatment wasn’t difficult, and hopefully show the benefits too – which fortunately for me, there have been many so far. I’m following Ricky’s progress too – I’m really excited for him! I expect he’ll fly through the initial tests.

      Like

      1. Shelly

        That is what we are praying for! He and his wife are the sweetest most positive people I know! Your Day Zero video made me shed tears of joy for you. 🙂 Hopefully, I will be shedding those for Ricky as well. Again, thank you!

        Liked by 1 person

      2. Thank you, I had an incredibly positive experience in Russia and was so pleased to be able to share. And Ricky, I no doubt expect the same for him, he’s in the very best hands.

        Like

    2. amany sabet

      Hello shelly… i have ppms and interested in trying HSCT but do i have to do tests first n come back once again or can it be done together..test and then procedure on the same visit..and can u tell me the price please and possible dangers..heard one patient died

      Like

      1. Hey Amany, please do pursue HSCT, it works for PPMS too. I’d suggest joining a few HSCT Facebook groups too, many will tell you their PPMS HSCT story. In Russia you’ll have tests on arrival for treatment, no need for any beforehand, just provide previous MRI scan reports (not the scans themselves). The cost is £50k USD.

        The risks are having a compromised immune system which will gradually return after 12 months, though after 2 months of being home mine already feels as strong as before. Another risk is Engraftment Syndrome, it’s said to happen to 2% and very rare.

        Out of nearly 600 HSCT patients, Russia have had 1 fatality. It was a heart attack whilst receiving chemotherapy, the woman was incredibly poorly and HSCT was her last chance. She was suffering from Stiff Person Syndrome (not MS), it was thought the heart attack was coming and would have happened anyway.

        I would honestly say I believe that there is very little risk to HSCT, I didn’t find it difficult to receive and I’m now reaping the physical benefits and improving all the time!

        Gym on Monday for the first time in years!

        Like

  4. hayley

    What type of MS do you have? I have relapsing and remitting and had for 8 years but it has been super mild which has been lucky for me. I am interested in this treatment though but not sure if an option for me.

    Liked by 1 person

    1. I had RRMS, but Dr.F told me I was very close to SP. I’m pleased to hear your MS is mild, I would always suggest HSCT, especially if you’ve had little progression. Stop the MS early, sadly we never know what’s around the corner. It might not be an option on the NHS to you (yet?), but it is worth looking abroad, I’m probably bias and will always recommend Russia. I know people who’s MS was almost non-existent for 30+ years, then it took its hold, horribly so. Do look into it, beat your MS!

      Like

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