Two time cancer survivor, some concerns about my upcoming trip in October.

[cobright]

Thanks! One of my issues is anxiety disorder, so being nervous is usually a given.

I wasn't going to chime in on this one till I read this comment.

I won't pretend to know what cancer is like, but I was involved in an incident a while back that left me a little broken inside. A bit of ptsd and a whole lot of general anxiety disorder. Add to that, I'm on a medication that ruins my appetite. It is a struggle for me to get the nutrition I need throughout the day and without it I feel like hell come evening.

So on those two issues I think we share something. Maybe I have some insight that will help you.

First, and I found this as odd as anything, WDW is one of my very few public 'safe zones'. Not sure why. It doesn't feel enough like reality to trigger my anxiety maybe. Even when it's crowded I breath pretty easy there.

Second, and this will sound odd ... and this is not for everyone ... so you have been warned, is liquor. I don't mean get drunk to make yourself feel better (if that only worked...). What I mean is as a form of nutritional supplement.

I'm serious. Liquor is calorie packed and the body has to do very little if anything to metabolize it into cellular energy. Digesting liquor does not result in oxidation or the creation of free-radicals. It is the perfect food. I'm not pulling this out of my rump, until the temperance movement got under way full steam in this country post-surgical patients would convalesce with a ration of liquor at each meal.

A can of ensure is like 250-300 calories. How many of those a day? How expensive? How easy to store and carry in the parks? A shot of 80 proof is 110 calories. Spread consumption of 4oz over an 8 hour day in the park and you have an extra 440 calories, unlikely to clear much more than a gentle buzz from it, and it's dirt cheap and easy to transport.

Secondary benefit (or primary depending on your needs) is that dialing in a gentle all day buzz does so much for your anxiety. You would have to take your medicine into the park covertly but in six trips I have never once had a problem.

Good luck, WDW is one of those safe-bets so do let yourself get too discouraged (with or without the whiskey).

 

[livndisney]

I know you mentioned fruit. Have you tried the fruit purees? We call them smooshy fruit. They are wonderful (shelf stable)snacks you can take anywhere. They are like applesauce pouches-but other fruits. You can get banana, pear, various berries etc. Some are made with yogurt and others are just plain fruit. They don't need to be refrigerated. We just throw them in the backpack and go. You could take some in your suitcase with you and know you have "something" you can eat.

 

[MataHari22]

We're traveling in the near future with my FIL who has very similar concerns. We were told the best way to get a scooter or wheelchair is from an offsite company (if you call disney the have contact info for 3-4 that they recommend). The company will drop the scooter/chair off at your room and you can use it your whole stay (not just in the parks) hope that helps!

-Tree

Thank you! I am still deciding whether I want to use a scooter or not. Thank you for the info.

 

[MataHari22]

I wasn't going to chime in on this one till I read this comment.

I won't pretend to know what cancer is like, but I was involved in an incident a while back that left me a little broken inside. A bit of ptsd and a whole lot of general anxiety disorder. Add to that, I'm on a medication that ruins my appetite. It is a struggle for me to get the nutrition I need throughout the day and without it I feel like hell come evening.

So on those two issues I think we share something. Maybe I have some insight that will help you.

First, and I found this as odd as anything, WDW is one of my very few public 'safe zones'. Not sure why. It doesn't feel enough like reality to trigger my anxiety maybe. Even when it's crowded I breath pretty easy there.

Second, and this will sound odd ... and this is not for everyone ... so you have been warned, is liquor. I don't mean get drunk to make yourself feel better (if that only worked...). What I mean is as a form of nutritional supplement.

I'm serious. Liquor is calorie packed and the body has to do very little if anything to metabolize it into cellular energy. Digesting liquor does not result in oxidation or the creation of free-radicals. It is the perfect food. I'm not pulling this out of my rump, until the temperance movement got under way full steam in this country post-surgical patients would convalesce with a ration of liquor at each meal.

A can of ensure is like 250-300 calories. How many of those a day? How expensive? How easy to store and carry in the parks? A shot of 80 proof is 110 calories. Spread consumption of 4oz over an 8 hour day in the park and you have an extra 440 calories, unlikely to clear much more than a gentle buzz from it, and it's dirt cheap and easy to transport.

Secondary benefit (or primary depending on your needs) is that dialing in a gentle all day buzz does so much for your anxiety. You would have to take your medicine into the park covertly but in six trips I have never once had a problem.

Good luck, WDW is one of those safe-bets so do let yourself get too discouraged (with or without the whiskey).

I totally understand what you mean about Disney being a 'safe zone'. I purposely chose WDW because I love it so, and would go every year if I could. I have been there before, and I would feel more comfortable there than anywhere else for a vacation.

With the Ensure plus is 350 calories. I was just going to drink two a day to help supplement, not solely live on it while there. I had a peg tube for 18 months at one point. I did not eat any food at all by mouth for 9-10 months, not even drinks for 4-5, so I don't want to live on liquid nutrition unless I absolutely have to. Just want to have some easily swallowable stuff I know I can rely on, in case I encounter issues at the restaurant.

As for alcohol, I'm not allowed. :-/ much to my dismay. I am not even allowed to use mouthwash with alcohol in it. Alcohol is not a friend to oral cancer and head and neck cancer people. Plus, because what the radiation did to my mouth, it feels like gasoline. Hurts like heck.

Thanks so much for the suggestions. I do appreciate it.

 

[MataHari22]

I know you mentioned fruit. Have you tried the fruit purees? We call them smooshy fruit. They are wonderful (shelf stable)snacks you can take anywhere. They are like applesauce pouches-but other fruits. You can get banana, pear, various berries etc. Some are made with yogurt and others are just plain fruit. They don't need to be refrigerated. We just throw them in the backpack and go. You could take some in your suitcase with you and know you have "something" you can eat.

Very good idea! I will check that out and see if I like them. I was going to take a box of Nutrigrain bars, and maybe I will add in a couple of those, too.

 

[GadgetTheInventor]

Scooters have a lot of benefits over wheelchairs, but they are also extremely demanding mentally. People will constantly be trying to cut you off as you travel around the park, requiring you to basically slam on your breaks at a moment's notice. If you want a relaxing trip around the parks or are a little slow from the chemo still, I would suggest a wheelchair if there is someone who can push you.

The downsides of using a wheelchair are not pleasant either though: it's a lot of pushing for someone, requires you to brake and unbrake every time you start and stop, and you have to ask to be moved. Also, the AK would be really tough to do in a wheelchair.

It doesn't really sound like you need a ground-floor room if there are elevators at the resort. It also doesn't make sense to need to be near the bus stop since moving around the parks is going to require a lot farther distance than your room to the bus stop. WDW is pretty accommodating, but sometimes requests can get a bit out of hand. The only people who really need to be on the ground floor are those who can't safely make it out during a fire...mainly wheelchair-bound guests who physically can't get down the stairs during an evacuation. I also can't think of anyone who NEEDS to be near transportation or services. It might take longer to get there, but if a person can travel around the parks then they can travel around the resort just fine too and can use wheels if they want.

 

[MataHari22]

Thank you, GadgetTheInventor. No, a wheelchair would not work, because my friend would not be able to push me around. She is my mom's age.

I didn't ask for the ground floor room. All I wanted to know is if there were elevators, because I don't do well with steps. The woman I spoke to brought up the rest.

 

[Schmeck]

I love smoothies and make them most days. What's an odwalla mega berry? If the raspberry purée is seedless, I can have it. I have to watch my fruits, I am allergic to mangos, and acidic fruits like tomato, pineapple, kiwi and papaya are a no go. My mouth is very sensitive because of the radiation from my head and neck cancer treatments.

My older daughter is allergic to mango, and she didn't have any reactions at WDW, yay! We've found the menus to be very specific for main ingredients, but sometimes there are sauces that we avoid because we're not sure what some of the fruits are, LOL.

My younger daughter has never been able to swallow meat - even pureed. We were not able to find lots of protein options for her at WDW, but she survived numerous trips by eating lots of ice cream Not high in protein, but substantial enough for a week's vacation.

I like the idea of bringing ensure with you - then you can relax during your meals and not worry too much about nutritional value. I'm a cancer survivor too, and try to eat healthy (although 9 years of survival has me slipping quite a bit in that aspect) but I let things go at WDW. It's only one week, and if I want a Mickey bar for lunch, that's OK!

 

[MataHari22]

My older daughter is allergic to mango, and she didn't have any reactions at WDW, yay! We've found the menus to be very specific for main ingredients, but sometimes there are sauces that we avoid because we're not sure what some of the fruits are, LOL.

My younger daughter has never been able to swallow meat - even pureed. We were not able to find lots of protein options for her at WDW, but she survived numerous trips by eating lots of ice cream Not high in protein, but substantial enough for a week's vacation.

I like the idea of bringing ensure with you - then you can relax during your meals and not worry too much about nutritional value. I'm a cancer survivor too, and try to eat healthy (although 9 years of survival has me slipping quite a bit in that aspect) but I let things go at WDW. It's only one week, and if I want a Mickey bar for lunch, that's OK!

I looked up that Odwalla berry stuff, I didn't realize it was a brand name and there is mango in their berry drink, so I won't have that. When I was first getting back to trying to swallow after 10 months of nothing by mouth, I was basically living on ice cream and milkshakes. I can do it again. It may be a week of desserts because cake is often easy to swallow, with enough milk! I mostly eat healthily, but I eat whatever I want to, that I am able to swallow, without any guilt. I once was so desperate to try and eat a steak that I put it in the mini chopper, and puréed it. I still couldn't eat it either. My dog was a happy camper.

Congrats on 9 years. <3 I will have 5 years in January. You know what, now that I have just thought about it, the day I come home from WDW will be 5 years to the day that I found the swollen lymph node in my neck. Hard to believe, 5 years!

 

[Random Ninja]

As for alcohol, I'm not allowed. :-/ much to my dismay. I am not even allowed to use mouthwash with alcohol in it. Alcohol is not a friend to oral cancer and head and neck cancer people. Plus, because what the radiation did to my mouth, it feels like gasoline. Hurts like heck.

Have you been able to find an alcohol-free mouthwash? I'm allergic to alcohol, can't even use hand sanitizer, and I've been looking for years for a good mouthwash I can use.

 

[ttintagel]

The one thing you don’t need to worry about is whether you’ve made the right decision going to WDW. Even though you may run into the occasional person who doesn’t know what he’s doing, in general the management is 100% committed to making everything accessible for those of us with health problems. It’s the main reason my family keeps dragging our rickety, substandard bodies back there instead of vacationing elsewhere!

Are you at Port Orleans Riverside or French Quarter? IMO, French Quarter is probably the best resort for anyone with mobility or stamina issues, because it’s so small and everything is so close. We were in building 3 when we had 2 people with ECV’s in our party, and it was incredibly convenient for everyplace we needed to go. We fit both ECV’s in the room for overnight recharging with no problem.

 

[ttintagel]

Have you been able to find an alcohol-free mouthwash? I'm allergic to alcohol, can't even use hand sanitizer, and I've been looking for years for a good mouthwash I can use.

I like the Biotene rinse. I don't know if it kills germs or anything, but the xylitol is supposed to be good for your teeth.

 

[livndisney]

Have you been able to find an alcohol-free mouthwash? I'm allergic to alcohol, can't even use hand sanitizer, and I've been looking for years for a good mouthwash I can use.

http://www.listerine.com/products/zero-mouthwash

http://www.amazon.com/SmartMouth-Alcohol-Free-Mouthwash-Fresh-Mint/dp/B001ET7IY2

 

[Random Ninja]

I like the Biotene rinse. I don't know if it kills germs or anything, but the xylitol is supposed to be good for your teeth.

http://www.listerine.com/products/zero-mouthwash

http://www.amazon.com/SmartMouth-Alcohol-Free-Mouthwash-Fresh-Mint/dp/B001ET7IY2

Thanks for these. Sorbitol and sodium saccharin aren't too bad. I got the okay to use them in toothpaste so I can probably get the okay for the mouthwash too. (I'm allergic to all artificial sweetners too.) glad to know I might have options.

 

[MataHari22]

Have you been able to find an alcohol-free mouthwash? I'm allergic to alcohol, can't even use hand sanitizer, and I've been looking for years for a good mouthwash I can use.

I have 3 that I use routinely, but I don't know if you would find them helpful. I need dry mouth mouthwash, because when they did my neck dissection, they took out my left submandibular salivary gland, and then the radiation killed off the rest of them. So, I use Oasis, Biotene and ACT Dry mouth with fluoride. I believe Crest and Listerine make alcohol free versions, but I've never used them. I have seen them in the store.

 

[MataHari22]

The one thing you don’t need to worry about is whether you’ve made the right decision going to WDW. Even though you may run into the occasional person who doesn’t know what he’s doing, in general the management is 100% committed to making everything accessible for those of us with health problems. It’s the main reason my family keeps dragging our rickety, substandard bodies back there instead of vacationing elsewhere!

Are you at Port Orleans Riverside or French Quarter? IMO, French Quarter is probably the best resort for anyone with mobility or stamina issues, because it’s so small and everything is so close. We were in building 3 when we had 2 people with ECV’s in our party, and it was incredibly convenient for everyplace we needed to go. We fit both ECV’s in the room for overnight recharging with no problem.

I had to laugh at the "rickety, substandard body". Yep, that about sums up me! I know choosing Disney was the right thing. I would not attempt a vacation anywhere else with everything I have going on. Hearing all of you reaffirm my decision to do this, really does make me feel better and less nervous about going. So, thank you.

I am staying at Port Orleans Riverside. The last time I was there, for a long vacation in 2001, I stayed at FQ. I asked about it this time, but we ended up getting the dining plan for free staying at POR, so I went with that.

I am still mulling over the ECV or not, thank you for the info.