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

The great news – my heart is fine, lungs and general health are top-notch. Slightly higher cholesterol, but more exercise and having 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… With a positive health check, Dr. F – with a great big smile on his face and a hug – told me I’m good for the treatment. I couldn’t be happier! Naturally, I asked where he thought my physical state could return to. ‘Where you were three years ago,’ he replied. But with determination and good physio, potentially wherever I want to be – saying that healing is a lot to do with the mind.

That’ll do for me!

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

I want to finish this post by thanking everyone for their support. I’ve never seen so many Facebook comments and likes on everything 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 HSCT groups on Facebook – those hunting the treatment and the veterans too – your advice and cheers are invaluable to someone currently going through it all.

Thank you!

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 6:45 am. Had to get all the bags in, and BBC Radio Surrey wanted a live chat around 7 am before I left. Can’t say no – I’m such a media tart these days.

All went pretty smoothly, other than the flight missing its slot. And then, on takeoff, I glanced across at another passenger’s screen just in time to see Eddie Redmayne (The Danish Girl) slipping Bob and the twins back between his legs… That guy never does any role by halves, does he?

We arrived in Moscow and made it to the A.A. Maximov Hospital in good time. We were immediately met by Anastasia and Dr. Fedorenko, who gave a brief rundown of what’s to come before settling me into my room. Big hugs and smiles from both – a lovely welcome indeed.

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

Day 1

Got woken up around 7 am by a nurse wanting a swab of my mouth. Not exactly the best time to go anywhere near that fly trap – maybe that’s why she chose then? Then – ‘Nose.’ ‘What do you mean, nose?’ …I closed my eyes and laid back down, knowing this probably won’t be the worst thing to happen to me this month.

Not long after, another nurse arrived with a couple of pots. I’m guessing she wants some fluids from me. Just as I was considering putting my head back down, yet another one walked in with a handful of empty blood vials. I just laid back, listening to several popping noises as each one filled, shook, and was scrutinised in the light. Not sure what she was expecting to see… Fish?

Then onto an action-packed day of X-rays, MRI scans, and multiple ultrasounds – enough for Dr. F to get a complete roadmap, periodic 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 returned to my room to find my mum and wife, Jen, waiting for me – my entourage, giving me all the support, love, Coke, and Pringles I could need. I told them how I’d been pulled, poked, and pushed in the name of medical science, hoping that was the last of it.

Then Anastasia came back to the room saying there was going to be a little party at 4 pm – and we should all come along. A small ceremony for those who had been through most of their treatment and received their stem cells back. A chance to celebrate their re-birth – their new life. The worst is behind them, and now, it’s about recovering as much as possible from what MS has taken. Congratulations to Sandy and Berit! (From Washington, US, and Norway, respectively.) I’ll post their ceremony video soon.

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

What a couple of days!!

The tour!

BBC Radio Surrey Bon Voyage Interview

Hardly. But the local press have been fantastic – though I’m not sure about the title I seem to have been given… ‘Leatherhead Man’.

Since receiving my invitation to Russia, they’ve all been so interested in my story – local man with multiple sclerosis, an incurable illness, fundraising for pioneering treatment abroad and a possible ‘cure,’ with the added hope of starting a family.

They’ve helped raise so much awareness locally, but most importantly, they’ve written quality stories and even arranged a BBC Radio interview for sharing. There was only so much I could do myself, but my wife, friends, and family have been incredible – sharing everything, everywhere possible. The number of shares has been well into the hundreds, resulting in thousands of viewers. An incredible social media campaign I couldn’t have done alone.

I did sometimes feel embarrassed at the thought of my face dominating people’s social timelines… but it worked.

Maybe foolishly, I said yes to Russia, suggesting I had the funds available too. But who would have thought I could raise the full £45,000 in seven weeks – leaving two weeks to spare before the trip?

The monetary value of people’s generosity has been overwhelming, but the effort from everyone pulling together has been the most humbling. I couldn’t be more grateful.

It all began with the Epsom & Leatherhead Guardian.
Read the story here

The following week in the Leatherhead and Dorking Advertiser.
Read the story here

Shortly followed by BBC Radio Surrey.

And then finishing with a front page story on the Surrey Advertiser.

…Pretty fitting really – very loosely. A little return trip to my hometown of Liverpool for a family-hosted fundraiser, which completes my appeal and officially sends me to Moscow!

THAT’S IT – THE RAISING IS DONE – I’M OFF TO MOSCOW, TO GET BETTER!!!

Amazing. I couldn’t be more grateful, couldn’t be more proud of everyone, and I couldn’t be happier!

So, on Friday, we went up to Liverpool to see my family, who have been truly brilliant – wanting to get involved and organise a fundraising evening of their own. Mixing it with a little bit of St Patrick’s night made for an incredible amount of fun, hosted by my cousin Brian. There was Cèilidh (Cay-lee) music, a bit of rock from my cousin Nathan, a little karaoke, Irish bingo, and a raffle.

Raising £2,135!!

I met so many new faces, caught up with family, and said my goodbyes before my trip. Despite working till lunch and a five-hour passenger ride, I pushed through the exhaustion to keep going till the end – and to make sure I got around to every table… at least, I hope I did.

First, I want to thank Andrea, Brian, Gillian, Denis, Christine, Rebecca, Esther, and absolutely my Aunty Terry for putting on an evening I will never forget. So much effort, so much fun – it meant the world to me. Thank you! xx

And to EVERYBODY – those who have donated, given prizes, bought prizes, organised fundraisers, helped at fundraisers – and to my wife, Jen, who has worked tirelessly to keep everything running smoothly. I am forever grateful. I owe you all so much.

Now, I just hope that all goes well in Moscow – so I can come back and show you how I’m doing. With every unaided footstep, I hope to show you just how much of a difference you’ve made to my life.

Less of the sitting around – I’m gonna rock the s**t out of tomorrow!!**

Thank you xxxxxx

A tale of two fellas this weekend – one doing what he says he’s good at, the other doing what he hates. Both with the idea that these are the perfect criteria for some good fundraising.

First, we have my mate Sam Thomson, who today jumped out of a plane at 15,000 feet. A man who hates flying – and the thought of jumping out of a plane certainly isn’t something Sam would choose to do. I’m in awe of him. The fact that he would do that for me? A true mate. And he’s raising some cracking funds too!

And then we have my good cousin Ian. A fella who openly admits that cardio isn’t his thing, so instead, he chose a sponsored SOMBFA (Sitting On My Big Fat Arse). A carefully selected Saturday, spent hogging the sofa, using social media to commentate on his day. You’ll be pleased to know that, thanks to good planning, Ian took it at a steady pace, no injuries occurred, and he’ll be returning to work on Monday.

Guys, you did this for me – big or small – it’s incredible, and I’ll be forever grateful.

 

You know, I have so many good people in my life! Family and friends who have set up their own events, something fun, something to put on sale to help raise money towards my treatment. It’s incredible to know that people really will give up such time, effort and expense to make a difference for me.

There have been cake sales raised by Mary & Neil Furnice, my old work colleagues at DNX specifically Dom Young, Tim Wall and some busy baking by Josefine Austin. Cakes made by Jan Forest and her mother Teresa which we gave as prizes and auctioned off on our fundraising evening.

Helen Carpenter who creatively raised money at her place of work through an Easter Egg raffle.

My sister in-law Susie Smyth organising an international food and raffle night for her work colleagues at Impact Research, aided marvellously by her husband Rob.

And of course there’s our Sam Thompson who will be jumping out of a plane this Sunday.

Amazing, amazing people! Thank you all so much, as I said I’m so lucky to have you all in my lives. Such unbelievable effort by all – for me. Thank you x

Boom – cheesy heading!

Wow! Saturday night’s fundraising evening was incredible. Together, Debbie Bowles and my wife Jen organised an evening I will never forget. One packed church hall, a three-course meal for 112 people, 1,500 raffle tickets sold (that’s a lot of folding!), 12 auction prizes, and too many raffle prizes to mention.

So many people donated the most incredible prizes for auction – their time, their property, their generosity. The same goes for the raffle prizes. And the cakes… Teresa and Jan made the most creative cakes I’ve ever seen (see photo) – absolutely stunning! Thank you.

It was so humbling to share a room with so many people, all there to listen to my story. A show of strength. A reminder that there are so many good people in the world, willing to share what they have to help me get to Russia and kickstart my life – our lives – for Jen and me.

Naturally, there’s a number you hope to raise, but reaching nearly three times that? Mind blown. Speechless. Saturday raised close to £15,000!!

A journo asked me the other day, ‘What does the potential of this treatment mean to you?’ To which I replied – how do you put that into words? The potential to be released from this physical prison. To be granted so many of the things I used to enjoy. A brighter future… hopefully with a family.

Similarly, the difference everyone made on Saturday night cannot be put into words. It has almost guaranteed my place in Moscow. There aren’t words.

Thank you from the bottom of my heart to all who came, and equally to all those who have donated so far. Over the last four weeks since receiving my invitation, I’ve been constantly blown away by the messages and efforts from everyone. I’m an incredibly lucky man.

Thank you. x