Reality Check

Dec 22, 2014

Another day, another reality check for some.

The HSCT forums have been going a little cray, with quick questions and last minute requests.

We and me (an almost HSCT vet) are happy to help. It’s a BIG DEAL.

HOWEVER. Stop.

Check the forum pages and associated FILES and read the HUGE range of information there that’s available to you that’s tried and trusted. It’s there for a reason.

This is not a holiday, this is not a resort, this is a hospital.

The The A.A. Maximov Department of Hematology and Cellular Therapy, National Pirogov Medical Surgical Center, Moscow, Russia to be precise.

It is not the Pond’s Institute, it won’t be featured in Marie Claire or any other fashion / beauty write up.

There seems to be a lot of questions and comments abound on the forums about what’s to be prepared ‘beauty wise’ and what sort of things to bring.

I’m going to be blunt. But not harsh. That’s not my intent.

Get over yourself. I wish someone had given me that blunt little natter a time or two. Or perhaps they did (KC)!

I’m a girly girl, don’t get me wrong. I get my nails done regularly, have my hair maintained (probably not as often as I should, but I’m not a fan of my natural ‘silver highlights’.

I don’t mind a massage, spray tan, acupuncture or Pilates or an occasional gym workout – ok so I do mind those. Enjoy those treatments before you depart home, you just won’t be rushing back to them as soon as you might think. Remember when you return if everyone thinks you have become a Germaphobe with OCD, you’re doing it right. #mantra

BUT. You are here for treatment.

This is not the time to be worrying about that stuff. It is NOT a holiday. It is not a bucket list holiday / vacation trip – but you might get to see a few sights (I’m not all negative).

However, YOU are here for treatment. Be prepared. Stay healthy and be as strong as possible in the lead up to your arrival. It’s not a walk in the park. It’s tiresome and testing is testing. Bring aTheraBand™, learn a few exercises you can do in a limited area for those few minutes a day when you have some down time. There will be some down time, but it’s not strictly scheduled and you’ll need regular breaks.

Your support person / crew / team might have a slightly different perspective and their experiences may differ, their patience will be tested too and they’ll have their own challenges, but this game is on for YOU.

If you’re travelling solo, you can do that too. Yes, you can.

You are here to have Hematopoietic Stem Cell Transplant.
It’s freaking serious.
It is not the Four Seasons.
It is not a vacation.

It will cost a lot of money, less than in some other treatment facilities, more than others.

The point is, it’s going to cost you. Personally, professionally and regularly thorough the help of others.

It may make you feel poorly in more way than one. It’ll make you richer in others.

It may make you feel like hell and probably will at varying degrees, but it will halt *your disease (in my case MS). *to a varying degrees.

You will feel good. You will feel teary. You will make friends.

You will feel ALL THE EMOTIONS.

Heaven knows I have, but I have a tendency to tear up over the nice things. A kind note, message, smile, photo or even a mint slice or a meal that’s recognisable.

You do have a great support network of professionals here 24/7.

As for me, I haven’t done a great countdown of day 1 – completion.

I’ve just played day by day and followed the plan of action.

I see no point getting ahead of oneself, or causing any unwarranted anxiety or angst.

It’s not worth it.

Your body, your plan and Dr. Fedorenko has the best in store for you individually.

Hands down. No questions asked. Ask him any questions if you like, there’s no limitation.

I know people who had a daily book of questions and time was taken to answer each one fully and completely.

I choose to have faith and trust in the system. Some may consider it naive, but so much easier.
For me anyway.

You are treated as an individual with respect and courtesy.

It will not make you super human, it may make you feel just human again and put you back in the game of life by whatever definition you want that to be for yourself, your family and your friends.

The nurses, technicians and staff here are to be commended, they’re first rate.

English is not their first language, but they try.

A compassionate / knowing look goes a long way.  They do their jobs. They often work 24 hour shifts and will do what they can to help you, but they’re busy but bright and love to stop and try to converse, but let them do their job. There’s little time for chit-chat and learning about the culture. Many staff also travel 1.30 hours each way, on public transport just to be here every day too – so be mindful of that. I have no idea how they do it. But they do.

Sure it’d be nice to learn more, but do a tour if you can fit it into your visa schedule, or just come back one day with a Lonely Planet guide and a back pack and do a home-stay.

If you need a little help from the staff, sure try and ask, they’ll help if they can – but ask another comrade patient first.

You will be given a list of basic translations and it makes easy work of small problems. Even bigger ones too.

Comfort

Sure there’s things you can do to make yourself more comfortable and Dr. F insists that you be comfortable and in good spirits from a medical perspective.

Remember, there’s no ‘salon’ here, no local beauty technician to get a quick tint and wax and spray tan, let alone a massage or acupuncture – BTW the chemo will take care of your bikini line. #justsaying.

You will not be issued (as I believe some hospitals in various parts of the world issue – amenity packs.

It’s not like that here.

Bring your normal toiletry kit. Soap, face wash, toothpaste etc… Bring a separate, new SOFT toothbrush to use once you’re ‘released’ from ISO. Best feeling ever.

You can even bring, wear a little make-up. No need for a ‘sick’ person to look ‘sick’ is there. A swish of lip gloss can turn your whole morning around.

Just don’t go OTT.

Get a haircut.

I doubt there’s a perfect time, but if you have small children, go super short – just so they’re not surprised when you come back home looking like Shrek (but not green and not with funny ears – you get my drift).

If you just have a close core of friends, have them around with your favourite stylist and make an afternoon of it. Drink and be merry. I went from mid shoulder to above the ear, and when asked what I wanted to ‘do with the hair’ she said, whatever – it’s dead hair and promptly busted out the Hoover. I just had another glass of bubbles.

She also asked to borrow my hair iron since hers was broken. True friendship that. #fact

I brought 1-2 small shampoo and conditioner samples.

They lasted as long as necessary (not long). Nice to have though. It just gets tricky when washing with lines in your neck etc. Don’t freak out – not scary, just a necessity, and better than getting jabbed a bazillion times a day (exaggeration).

Closer to the day when the chemo part of the treatment is to be phased in there are clippers here that are available for you to use, again a nurse may assist you but ask another comrade patient first. It’s a bonding experience.

Get some decent moisturiser.

Cheap, expensive, whatever works for you and your budget. It just helps you avoiding feeling like a clam (a dried up clam).

Hand, Face, Body, Feet. Whatever.

If you forget it, at the Delta / Vega and associated hotels and nearby supermarkets you can buy recognisable name brands that aren’t expensive.

Your skin will be thankful. The dry air temperatures and effects of chemo can be harsh. If anyone asks if there’s something you’d like to take, take that. Some nice shower soap is nice too just to feel and smell pretty and fresh.

Have a pedi / mani before you come.

You won’t be able to use clippers so even wean off and go down to a short blunt buffed edge. Attractive but practical. No clippers in here I’m afraid, no risk of infection if you want trim a little too close to the quick.

Bring a nail file / buffer. Just not your complete manicure kit. That’s a bit OTT.

Also, it’s just a consideration to other patients. Depending on the floor you’ll be on people have different sensibilities and sensitivities and reactions to the chemo and vapours. So just be discreet or refrain all the same. It’s not forever.

When you get home, don’t head to the nail salon. Really all the treatment, anxiety and stress for a little vanity. Get over yourself. Do little at home maintenance jobs, remembering to minimise infection.

Clothes

From those that have been in summer – the days can be warm and you’re free to have the windows open and acquire a fan if possible. Shorts, yoga pants, singlet tops are the normal.

Oh, Croc’s and slippers. Good options to have. Never wanted a pair of Croc’s in my life before but they have come in helpful when doing laps of the hallways and walking to testing if the location wasn’t too far. Otherwise wheel it in comfort with socks or whatever.

There is a laundry service, it can take a couple of days – no issue, just adapt and have a few items that you can rinse out in the bathroom, and you’re good to go. Adapt.

Remember, I’ve said it before, the bathrooms are small – so if your ‘smalls’ are not ‘smalls’ there not a lot of hanging space so just remember to consider that, particularly if you end up sharing for a day or two.

As for me currently here in winter, I’m living in singlet tops a cardigan or two, yoga pants and a couple of track pants. I also brought a dressing gown. Possibly could have done without it but I like having it. I also have a small light blanket. Nice to have, but probably not necessary.

No underwire bras either.

Oh, also beware of little metal hooks on your singlet tops when going for MRI / X-Ray testing. They’re a NO NO. No big deal, you get given a sheet, just something to note that I didn’t consider.

There’s a plentiful supply of towels.

They’re changed regularly.

There’s no need to bring the Deluxe Martha Stewart Bath Sheet set.

face washer might be nice though. Not mandatory, but nice.

Or just ‘borrow’ one from your hotel of choice should you have a night somewhere before being admitted to hospital.

Yes, you’ll be able to wear your own clothes day to day when not in isolation.

When in isolation your bags will be taken away from you (securely) and you’ll be given pjs as standard issue. Not fashionable, not uncomfortable. You will be able to keep your own underwear – have a small case / bag ready for that.

Your carry-on / overhead luggage bag would is perfect for that exact purpose.

In isolation you are also permitted to take your laptop, magazines, books, photos etc. You can also have approved condiments (salt / pepper / spreads / chilli sauce etc…)

It’s not like you’re stuck in a 4 padded cell. You have windows, desk, chairs, ensuite fridge, microwave etc.

Oh, it’s also courteous to clean up your plates once you’ve finished your meal.

Your bathroom has dish soap and a cloth, so it’s just a nice little thing to add to your routine to fill in the day and to be able to do something nice for the food prep staff. It’s also good to keep moving. Who want’s bedsores?

Just rinse off plates and cutlery – the water can be seriously hot and leave to drain dry on the table provided in your entry way.

Just a few things that I needed to clarify after a a good day, even though my hair is now seriously falling out. Sigh… Just another one of those steps I guess. Just taking it in my stride, well trying too.

A good day,

FSJ xox

PS: Tomorrow may be a bit more challenging – I may or may not post. I’m due on a 5 hour (Retuximab) infusion drip to start preparations for my *ahem* journey home. Not reportedly a fun experience, but I’ll breathe and ride it out as the other quads have already started to do.

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