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!

Day 1 – The wait is over..

I’m here in Moscow eight years after being diagnosed with MS, finally about to be given the chance to get rid of it.

So Monday morning we got up bright and early, ready to hit Heathrow for around 6.45am. Had to get all the bag’s in, BBC Radio Surrey soon wanted a live chat around 7am before I left. Can’t say no, I’m such a media tart these days.

All went pretty smoothly, other than the flight missing it’s slot. And then perhaps on takeoff looking across at another passengers screen in time to see Eddie Redmayne slipping Bob and the twin back between his legs. …that guy never does any role by halves does he.

Arrived in Moscow and then the A.A. Maximov Hospital in good time. Immediately met by Anastasia and Dr Fedorenko, who spoke a little about what’s to come and then got settled in my room. Big hugs and smiles from them both, a lovely welcome indeed.

With enough time to point my video camera at the television and toilet, edit it up, eat a bit of stew and then to bed. (both video and radio interview below)

Then Day 1. Got woken up around 7am by a nurse wanting a swab of my mouth. Not at all the right time to go anywhere near that fly trap, perhaps all the reason to maybe? Then ‘Nose’, ‘what do you mean Nose?’. …I closed my eyes and just laid back down, knowing that probably that this won’t be the worst that’s going to happen to me this month. Then quickly after the next nurse with a couple of pots, I guess she wants me to perform a liquid sample for her, that doesn’t read too well, in privacy I must add. Just as I consider putting my head back down, another walks in with quite a few empty blood vials. Again just lay back, listening to several popping noises as each filled, shook and scrutinised in the light. I’m not sure what she was expecting to see? …Fish?

Then onto an action packed day of X-rays, MRI scanning and multiple ultrasounds. Enough to give the good Dr.F a complete roadmap, periodical table and dipstick test of this semi-functional lump of a body of mine. Far more than my Neurologist has ever done for me back home.

Pretty much on the final test I return to my room to find my Mum and wife Jen waiting for me. My entourage, giving me all the support, love, Coke and Pringle’s I could need. I tell them how I’ve been pulled, poked and pushed in the name of medical science and hoping that’s the last of it.

Anastasia then comes back to the room saying that there’s going to be a little party at 4pm and we should all come along. A little ceremony for those that have been through most of their treatment, having received their stem cell’s back. Something to celebrate their re-birth/new life, the worst is behind them and now for recovering what will hopefully be the most of what their MS has taken from them. Congratulations to Sandy and Berit! (From Washington, US and Norway respectively) I will post up their ceremony video up soon.

Then I was told that with all my tests completed, I didn’t have to stay in hospital that night and could enjoy a night away with Jen. We made the most of it with room service and a film. Chicken burgers and chips and we watched Morning Glory, for those that need the detail.

What a couple of days!!

The tour!

BBC Radio Surrey Bon Voyage Interview