Q&A and a bit more and some probably not enough

Dec 16, 2014

I’ve been asked for a few recommendations for travel to Moscow in winter.

Some of this may adapt to year round – just use your judgment.

My attempt at humor gets in the way sometimes, so I’ve tried to tone it down.

This is in no particular order, just thoughts as they come to mind from responses to a variety of emails that I’ve received.

Don’t use my judgment solely in place of your own, just be smart, aware and cautious.
This is MY experience, it may work for you some, it may not.

I may still try and reformat it into a more user friendly guide, but don’t hold your breath.

Nothing is scary or set in stone and you will get by.

First up from a recent Forum:
DO NOT have a facial, a eye-brow tint, wax, extension or anyother beauty treatment will in my opinion do any good.

Why on earth would you risk having someone (with good hygene) etc, get within 30 minutes of your face, breathing, chemicals – organic or not etc.. Seems reckless to me.

Here goes… Randomly.

Please note, my local shopping tips and advice is from BRISBANE, Australia.

Ski Gear

Keperra

Reasonable and helpful staff.

Try the discontinued bins for trousers and beanies.

I got last season’s skins for AUD$33 which were perfect for a day or two’s sightseeing with just a pair of thermals underneath.

Address: 7 Dallas Parade,

Keperra QLD 4054

Free parking available at front

Ph: (07) 3855 4000

Email: keperra@snowcentral.com.au

Opening Hours

Monday – Friday 9:30am to 5.00pm

Saturday – 9:30am to 4.00pm

Sunday 11.00am to 3.00pm

Thursday Evening Closed

Wigs, Scarves and Hairpieces

See Tanya at Starkles in the Myer Centre a few weeks before you go.

Nicest lady ever, doesn’t mind tears and she makes it fun and has good advice if you have an option on some private health insurance.

Arrival into Moscow, Anastasia will make whichever airport work best for you and arrange a private pick up. If you have a private transfer already lined up, she’ll arrange a driver to meet you at your hotel on your day of admittance

As for access to the hospital, on your day of admittance, Anastasia will meet you and your family. Everyone needs to have copies of Passport and Visa. Copies are fine, well they were for us. Just keep your originals in your hotel room safe.

As for getting around and seeing the sights, I highly recommend the tour company we used. If you can be a little accommodating and flexible they’ll do everything to adjust to your abilities.

They picked up from the hotel (Delta), most people stay at the Vega but it’s much of a muchness and was very good, clean and comfortable with a coffee machine.

A few extra rubles, but what the hey! My father even had a ‘suite’ there with separate lounge so he could lay out a bit and relax. Might be a good idea. Even if you don’t get a suite, there are tea and coffee and ironing facilities on each floor.

We stayed at the Delta, most stay at the Vega.

Much of a muchness just depending on price etc. All in the same complex and with no foreseen ghastly issues or concerns to be worried about.

There are security attendants to each of the lift lobby’s.

It is a safe area and Dad and my sister had no problems. Just with any area, familiar or not be aware of your own surroundings.

There is also a good breakfast buffet, and for dinner try Mikhails for their Chicken Kiev or Beef Strogaoff. When in Russia hey? Reasonably priced. English menu too, and draft beers.

There are security attendants to each of the lift lobby’s. when you enter the hotel.

It may be hard to find a porter, but they’re there.

While reception is organized ,keep in mind that there is sometimes a lack of personal space. It’s not rude, just how they operate. Keep your documents well protected.

If you have a tour in mind – probably before you admit to hospital, it may be easier to organize one prior to your departure.

We used Sara Birtwhistle of Travel Managers who accommodated our every need.

She arranged an english speaking guide, separate driver and we saw the major sites. St Basil’s, Lenin’s Tomb (didn’t go in – line was too long), GUM and the Kremlin grounds.

She also arranged a chair to be in the rear of the vehicle should my legs get too weary – which they did.

A convenient lunch stop was also found for us. Sandwich drink – local cafe sort of thing.

I imagine alternative (larger vehicles may also be sourced for larger groups, but at a cost. Just enquire with Sara, she’s most accommodating and gets no perks from my promo of her services. #justsaying

The driver was also able to find the best vantage spots for parking – not always wheelchair /r amp friendly by any extreme, but the best none the less.

Sara Bertwhistle – Australian Contact, with Russian contact on the ground here that did the logistics and the guide met us right inside the hotel lobby. No looking for random people or signs. Easy. We just had a voucher to present.

Sara (Melbourne, Australia)

M: 0433 420 255

T: 1300 689 461

E: sara.birtwhistle@travelmanagers.com.au

Clothing

It’s a comfortable temperature n the hospital. Jeans, yoga pants, ¾ shorts and a sweater. The windows are double glazed and there’s central heating.

Casual clothes are fine. Yoga pants, singlet tops (no metal clasps – keep in mind for a sneak MRI or Xray! Tshirts, perhaps a couple of long sleeve ones.

No underwire bras for patients – sorry fella’s you too. Socks, slippers and crocks are normal.
As ugly as crocs are, they do come in handy.

Oh and under fashions (knickers / panties / undies – whatever.  Bring a few pairs, but you can wash them. I know of someone that brought 40 pairs. No kidding. Must have been a big sale.

There’s not a lot of storage or hanging space, that’s for sure. Most of your clothing will be kept in your case.

A dressing gown is nice, but definitely not mandatory.

The towels are small but adequate, bring a larger one if you choose – i didn’t and haven’t had a problem. I get dry just fine,

I brought some nice soap and moisturiser too that had been gifted to me, just to feel pretty and a bit more like me. But that’s just me.

Oh and they definitely don’t ask you about ANYTHING when transiting through Dubai or Moscow airport about what you’re bringing in. No questions asked at all.

However it’s a huge airport and you WILL need assist. I was reluctant for it, but grateful that I had the option. Even your family might if they are not Boston Marathon runners that pack light. LOL.

The aids are fast and know, little if any English and they know all the secret corridors etc to get you through to your gate or luggage etc.

It’s all above board and nothing scary or sneaky, just efficient. Who knew!

We also gave  my  wheel chair assist guide a  modest gratuity – use your own discretion of what you can afford, but do NOT do this inside the airport terminal. It’s bad form.

Wait until there are no cameras or prying eyes when outside the actual terminal. Does not have to be much, just a simple token.

The care at the hospital is great, and you’ll feel embraced and ready to get going. They days are flying bye that’s for sure.

I’m not really focusing on days to count down till home, or seeing past what I could initially do in my first 2 days before admittance. I just focused on one day at a time and taking the advice of Dr. F and his team for HSCT.

They are the magicians after all.

That’s what we’re all here for. I get the impression that some are after the whole cultural experience. It’s not a Red Square bucket list trip – though wouldn’t that be nice. Do that 2 years down the track when you can do the Goosestep with Putin’s army.

Oh as for the Ballet some are keen to go or even to the theatre, I Imagine Anastasia will be able to arrange a private car to take you the event and return you to the hotel or hospital. I’m not sure what access will be like, it could be very challenging with snow and cobble stones and parking and less than adequate ramps.

Sam – you may have some input, but I think you got the Metro?

I think the hospital gates shut at 9. It’ll be an amazing experience for anyone that gets to go. I only saw the exterior of the building. Jealous.

Check with Anastasia for the timings of the Ballet or any other performances.  Should be fine to have a night out, you just don’t want it to conflict with any testing appointments or steroid infusions etc. She’ll make something work.

Medical Stuff + Records

I thought my EDDS on arrival in Moscow and what had confirmed by by my private neuro was about about a 4 – 4.5. Wrong.

Dr Fedorenko gave me an evaluation of 2-3. Interesting.

I live and work and drive independently and use no aids unless SUPER exhausted after stairs or being on the tour we did here.

He’ll give you his own evaluation after reviewing ALL your notes and scans and tests and charts.

If you have some reports to bring, bring them but it’s not necessary he runs a FULL and COMPLETE baseline.

I brought nothing. Not a good thing, not a bad thing.

Some patients just brought in a whole dossier.

Just know your history, doctors, specialists and what DMD’s you’ve been on and when you started etc. and when you finished them.

Any episodes or relapses while on them.

This does not have to be precise, just more of a history so he can get thorough overview. Dr. Fedorenko, while patient and kind and has all the time in the world for you – is a busy man. His english is EXCELLENT, but do try to keep things in simple terms.

I think it saves a lot of confusion either way. Others may disagree. Just me… I even kept all emails simple and too the point.

There is no formal plan to the schedule of testing, it can happen at any time, at anytime of the day and with any length of delay. Do not plan around it. It’s a fully functioning hospital. Remember that.

After several (testing) days that could range from 3-5 (most likely 4)  you have the final meeting with Dr. Fedorenko to discuss the *green light* to move forward with the treatment – this follows ALL the testing,

Patience is key. Boring at times, but worth it. Think of it as Fiji Time, but not.

Everyone is courteous though and things do move along, just not as quickly as you might be used to.

I noticed he technicians and nursing staff are mostly female.

They are professional and discrete and there’s nothing uncomfortable at all – well there wasn’t for me.

They transcribe all the reports too.

Once Dr. Fedorenko has treated you and reviewed his reports over the HSCT period and his is ready to discharge you after 30 odd days (give or take depending on your visa status) , he will give you copies of EVERYTHING in English (or I’m sure in your native language) so you can distribute the information if you so wish to your GP, Neuro, Haematologist, MS Society, whoever.

I think it’s best to leave the originals in the safe at the hotel. Copies are fine. Everyone will be given a ‘pass’, do not lose this.

It is required for entry into and out of the hospital grounds EVERY TIME, FOR EVERY ONE.

Days go fast for me mostly, mixing with other patients and doing your own thing and particularly during testing and examinations.

Keep busy, and mobile as possible doing laps of the hallways and stretches etc. It can only help right.

Even if you can only manage sitting up and sitting down in a stool 10 times, a few standing shoulder push ups and some leg curls. Just don’t overdo it. Keep limber.

Shower access can be cumbersome for those impaired as there’s a small step. Everyone seems to manage and there’s no rush or time limit to shower – not that i’ve noticed.

While I again mention how wonderful the staff are, if you need extra personal attention, I suggest you’ll need to have your own attendant / carer with you and to accommodate that into costs. Do not overburden the staffload. Even western hospitals have their limits. Fair’s fair.

Vanity. I wanted to hang onto my hair for as long as possible, it’s a vanity thing, but seriously with the neck lines it just gets in the way and you can’t really wash it.

Tricky, tricky, tricky.

I held out till the morning of transplant day. A few of the other patients did it with me.

Some / many like to do it with their kids and community around, not me – no kids, but my bestie did say when I went from long to short – nah, you don’t want to keep it, it’s dead hair. And by the way can i borrow your straightening iron. True friendship that.

I’m still not a huge fan of the Demi Moore / GI Jane look, and wear scarves and a beanie, others just rock it.

It’s not fun, but it’s inevitable. Damn it.

And hell I have a LOT of grey.

Personal Hygiene.

I speak for the women folk here.
Ah, as for the Depends / sanitary needs, yep you need the incontinence pads. Fun. Not. But useful.

I brought 3 packets, which should do me fine with a couple of spares for the journey home.

I’ve not needed any for any emergencies up until this point, but it’s a good security blanket, particularly those that have particular restrictions to getting to the bathroom. There is little if any room for wheelchairs, pushers or motorized scooters.

You just get so many flushes of chemo, and steroids and saline – it’s just got to have somewhere to go if you know what I mean.

Pads may be ok for a “quick” spill to save any light embarassment – sorry to be so blunt, but that’s the way it is.

Those with greater needs and don’t bring their own, will need to adjust / adapt. It’s not impossible just be open to different non-western products.

There’s a laundry service at the hospital too.

I send out a bag each 2-3 days and it takes about the same to come back.

You’re fine to wash your own knickers. Under fashions, jocks, socks, t-shirts or to send anything back to your hotel too with your companion.

There is no charge for hospital laundry – Not that I’m yet to discover anyway.

Oh as for a Massage and some Occupational Therapy post treatment, as nice and therapeutic as it may be it’s a personal thing, put it off for the first month.

Learn some stretches before you depart, and take it EASY. Some days will be GREAT, some will be rough. Ride it out.

You don’t want to put yourself into any chance of risk of getting a cut, graze, infection, fall or ANYTHING. Perhaps that’s just me. But really give yourself a couple of weeks of light stretches, or use a theraband at home and call it a day.

IT IS NOT A MARATHON. YOUR BODY HAS BEEN THROUGH A MAJOR ORDEAL.

YOU ARE AWESOME, YOU HAVE A ROCKING FUTURE, BUT YOU ARE ABOVE ALL HUMAN.

The initial and departing stream of steroids, WILL WEAR OFF. YOU WILL CRASH. Be kind to yourself.

Just rest well, stay in a bubble at home and keep a positive attitude for the first month, and then take a few steps.

Sunlight.

Your skin is going to be super sensitive to sunlight. Pre dusk walks, late afternoon ones. No direct sunlight. (I’m mot sure of time frame, check with someone more Yodaish than I).

Ladies in particular when your hair grows back you’ll not notice signs of melanoma on your melon (head), so just don’t risk having to fight that battle after this one!! Wear a hat / scarf / wig… whatever. Men too.

No gardening or housework with any harsh chemicals either. Hoorah!!

Don’t clean the oven, your GI tract is too sensitive.
Don’t use spray bottle cleaners – use wipes.

Don’t pick up animal waste, give that chore to the kids.

Don’t let pet’s lick you, or sleep with you either.

There’s no absolute necessity to farm or foster them them out for long durations as has been reported on other forus, unless you think it’s best for you and your recovery and that they’re unvaccinatied. Same for school chums. If you’re kids school mates are not vaccinated keep ‘em away with a tazer. The last thin you need is Chicken Pox, Whooping Cough, Ebola, HPV, Hep whatever… you get my drift.

Your vaccinations can only START 12 months post treatment and then that filters out to 2 years. Use your possy of professionals to guide you along the way and support you with anti viral and other Yoda knowledge.

Keep in mind that cat’s toilet habits are typically inside and you don’t need any of their germs in your ‘hood.

House trained dogs I would see as somewhat better and with less mess to clean. Again, another job for the minions.

Just stay away from farm yard animals. And I don’t mean Peppa Pig. Though???

Personally, this is going to be a tough ones for me, my Mini Schnauzer has been my constant companion. She’ll get over it, and so will I. Besides, I’m not a kissy kissy dog licker person if you know what I mean.

She’s my dog, my friend (but not a fur baby – hate that term) but we’ve travelled the world together and she’s family but there’s boundaries.

You’ve been through all this, why risk it?  For a cute kiss? Pft.

Oh, and see Heamo at the before you embark on this journey. GPs and PCPs are great but not the experts. They have huge value but you want THE BEST TEAM behind you.  Do what you can to get the best support team that you can. Public, or private – no judgement just get and have the team you need. STAT.

My initial Heam consult with took probably 1.5 hours. He was very thorough. Took baselines then and there, and booked me in for an appointment less than 1 week from my return.

It’s a little crazy coming to Russia and I’ve never been in better hands.

Be well.

FSJ xoxo

I just wish I didn’t do it sooner.

You’ll adapt, everyone has and everyone is so kind

And again, the rooms are SMALL, but comfortable.

1 small closet that you may have to share. Should you need to share a room for a few days like I did, just adjust and pop your case under your bed. We’re all in this together.

No drawers really to speak off. Bring some cutlery – plastic is fine, a microwave bowl and drinking flask (wide lipped) for easy washing.

The nursing staff will do their best to help and accommodate you, always with a smile, but their busy and they’re systems operate a little differently here. Accommodate and adapt.

There are mugs and basics. Adapt. You will.

I’ve enjoyed a few maggi noodles and some sunrise 90 second rice packs just to fill me up, and some soup sachets. No questions were asked when entering through immigration and security.

The food here though is made for a purpose – to get you well, so try.

I never thought I was a particularly fussy eater (aside from a hate of MANGO and an avocado allergy), but I am. So there. I’ve adjusted too and am thriving quite well.

Bonus: Bring: Salt / Pepper / Ketchup / Vegemite / Spread etc… Cinnamon helps the porridge go down too.

Bring MOISTURISER TOO!! Hand, face, body. It’s easily available here at the hotel pharmacy or drug store too. Don’t panic.

You won’t starve, you’ll get buy. I don’t consider myself a picky eater, but i now think i am and i’m AOK.

NO eating out when you get home (6 MONTHS) and NO salads. Check with a Yoda, and I don’t mean the Wollies supervisor, No offense.  

If you can buy it at a deli – ham, salami, soft cheese, olives, coleslaw whatever – don’t eat it.

Well cooked everything.

Roasts, Stir Fry with Veggies, Curries, Toast. Nothing unpasteurized.

No raw meet, not even medium well. Your favorite chef 6 months after may want to kill you but it’s more likely if he serves you an under-well steak. No sushi for 12 months. And don’t eat left over rice.

Spaghetti, pasta – all the foods you don’t typically want in summer. Make sure it’s HOT and HOT all the way through and go for it.

Eggs, baked, well cooked, scramble led whatever, through in some salt and pepper, just not salmon.

But a stirfry, and curry and do all that stuff! Just cook it WELL.

You’re doing all this for the greater good. You’re greater good don’t stuff it up now.

OH! No flowers or balloons when you get home either. Too much pollen on your sensitive chemo tracts and balloons hold lots of DUST.

Keep ‘people’ away for the first month, I know they’ll be busting to see you. But, remember what you’ve been through.

Kids home from school or outside playing. Dettol bath basins at the front and rear door – hand sanitizer at the kitchen and bathroom basins, hallway table. Wherever.

Germs are your enemy.

Your kids are not.

If they want to play with you, perhaps have some boardgames in the lounge. You can’t go outside to the pool, or into the sun but they can come in and keep you company for a bit. It’s not the same, but it’s time right?

Sorry to be so bossy. This is meant with good intent.

Plane travel home. Masks, antiseptic wipes and gloves are your friend. Wipe airline seats, bathroom ledges and seats, handles, wheelchair rests, arm rests. Basins, whatever! If you think it has a germ, wipe it.

Keep in mind plates, bottles and glassware. Packaged food should be contaminating free. Wipe bottle lids, plate edges, glass rims etc. who cares if you look like a nutter.

Oh and as for your kids at the hospital, there’s not much room in the hospital room itself but there’s a bit lounge near the nurses stations.

There’s wifi, it’s effective but dodgey at times. Just persist. There’s no English TV (Russian 4 channels). Kids can hang out when required, it’s pretty relaxed. Just be mindful that it is an active hospital and there’s actual staff and patients.

Children are free to wander around outside too for some fresh air when not accompanied by an adult – just be sure they’re of a suitable age, and they can visit the chapel – just no PHOTOS INSIDE.

And don’t take snow off cars that are parked in the hospital grounds. It may look pretty to make snowballs from them but it actually ruins the deco.
That’ll do for now, hope it helps just 1 person on kicking this damn disease and makes the road here and home just a little easier .

Yes, I might be a bit OTT, but whatever!!

New life. Bring it!!

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