Terminal Brain Cancer, WDW trip, need tips and encouragement

nuzmom

a real-life Merida
Joined
Jun 20, 2004
I am diagnosed with a glioblastoma, grade 4. I've had surgery and radiation with oral chemo. I have also had 2 rounds of infused chemo, with nightly oral chemo. We have a short WDW vacation planned for Sept 9th. My neuro oncologist has allowed me to put off my next infusion for a week so it doesn't interfere with my vacation as long as my MRI (on Sept 7th) is stable. My tumor is in a "difficult" location (motor strip) and has basically paralyzed my left leg.

We have plane tickets (Southwest) and are planning on taking a wheelchair for the airport and resort use. We are renting a high backed ECV offsite for the duration of our vacation. We are also renting a car (SUV). I have ADRs and FP+ made. We are staying at Beach Club.

Some days are really rough - fatigue, mobility issues, nausea. Some days are "ok". I use a walker at home and either a walker or wheelchair when we go out. We've been to WDW multiple times and just going at our pace is our current plan.

One of the side effects of my treatment is steroid induced weight gain (I've gained about 50 pounds) and I feel very unprepared as far as clothing goes. I'm not sure what to do.... I'm in a 3XL/24w. I have some jeans I wear around home, and I don't think I can risk bare skin - I can buy a couple pairs of pants - but where and what?
Same with a swim suit. I know I won't be able to "swim", but my DH and I could "relax" in the water a little bit - I think... I'm a little concerned over the chlorine.
Of course, the heat is also a concern. We have frog togs and cooling towels and we'll avoid direct, mid-day sun, but it will still be hot.

I'm very concerned about my mobility issues and transferring to some "rides". And, really, just getting around WDW. Overall, I'm getting more and more anxious about going, but I "want" to go and it will break my heart if we have to cancel.

I plan on trying to get a DAS card - I have sensory issues (& will need some noise cancelling headphones) and "emotional" issues (when I feel trapped). Sigh. I hope I don't need it very often since we'll mostly do shows.
I will have my DH, DS16, mom (88), and sister (62) with me.

Any advice on how all this works is appreciated.
 
Lots of love and prayers to you. I hope that you are able to keep your trip and that you and your husband enjoy your time there!
Check out swimsuits on Torrid.com and Swim Suits for Everyone. They have great styles for bigger sizes. Swim Suits for Everyone has really good sales and deals on their clearance pages.
Keeping you in my thoughts.
 
Check with your doctor about sun exposure - and see if you can get a shade cover for the ECV. If the ECV gets to be too tiring, maybe switch back to the wheelchair to give yourself a break?

Also, having just visited WDW and the ER down there in Celebration, I'd check with your doctor on what you need to bring with you in case there's an issue. The more info you have on you about your situation the better if you have to go to the ER for something. The Reedy Creek ETs are awesome, BTW!

Hope you have a good trip - take care!
 
Sending you load and load of virtual, love, Hugs and support - and I hope you have a truly fantastic trip.

You sound like you'll have a great support system round you, so for Disney support especially around DAS just talk to the GR about what you need help with. Maybe write everything down before you go and talk to them, so you can explain it clearly - or take someone else in with you who can help you explain.

I saw you mention what clothes to get, I would see if you can invest in some nice linen trousers as they help you keep cool in the heat. (Sorry based in the UK don't know what shop in the US would stock them, if you were over here I would recommend Marks and Spencers )

Anxiety isn't nice and it's hard to put your fears aside, but Disney world is such a magical place and I have found them nothing but helpful and supportive over a range of issues.

Last bit of advice is always ask for help when you need it, as the worst thing that can happen is people say no and your in the same position you started at before you asked. But the mostly likely thing that happens is people will help as much as they can, as too be fair most people are great - so go on your Disney trip and get lost in that bubble.:earboy2:
 
Lots of love to you, I hope the trip is wonderful and I hope your anxiety about it is calmed. You're going to take it slow, go at your own pace, do what you can, and it will be magical for you.

For pants - I'd recommend a pair of lightweight capris, such as the plus size cargo capris that JC Penney's sells (St John's Bay brand I think) - I basically live in them during the summer, and I'm around your size. They're extremely lightweight and breathable. Or anything like that - lightweight, breathable fabric that cuts off well above the ankle and allows air to flow. I think if you search Amazon you'll see a lot of options as well.

I wish for you ease and comfort in your trip and on your journey. Nothing is over until it's over, and nobody knows the future. Enjoy the moments as they come.
 
look at the starfish collection from lands end. Very comfortable and they have long and capri styles on the website right now. I just picked up a pair of shorts on clearance that are soooo comfortable!
 


I second the starfish capris from Lands End. Easy to pull on and off, very comfy.
Just picked up some bathing suits from landsend as well. They've got lots of summer things on sale right now. You can order and have it shipped to your door.
Sending prayers and best wishes for you and your family to make great memories this trip!
 
Lots of good advice. I'm going to go check out some of the websites and see what I can order.
Sun exposure is of concern - I have some really good sunscreen - but I think I'll stay away from capris and try for full length pants. Oh, and a very large sun hat! :)
My neuro-oncologist definitely will have a plan in place for me for seizures and brain swelling (& appropriate meds).
I'm a "planner" and I think I just need to think the whole trip through from heading to the airport until we return home.

Thanks guys... now to do some on-line shopping. :)
 
@nuzmom - Hi!

The only thing I can think to add is this: bring along some big, cotton bandanas. I always have a few of them with me, folded into a large, ziplock storage back. You can use them in a variety of ways; dip one in ice water (free at any Quick Service in the Parks) to cool off. Tie up your hair, mop your brow, or folded, across the back of your neck so you don't sunburn.

You can even fold one down (start with a large triangle, and fold to about 2 wide), and put it under your bra band to absorb sweat, then switch it out during the day to be more comfy!

Bandanas are a very versatile accessory! ;)

(Also remember that a hat may be better than a sun shade attached to your ECV, simply because the ECV sunshade still allows sun to come in "under" the edges (and you won't always be driving away from the sun) where a hat (or even a lovely parasol from China at World Showcase) can be "tipped" to offer maximum coverage)
 
mamabunny - I'll definitely have some "head coverings" including some large, handmade, disney bandanas, but I don't have hair to tie up - LOL!
And, I agree with the hat instead of the sun shade. One reason for me is to not feel quite so disconnected/boxed off from my family. I want to be able to see them.
 
Hugs. I've had good luck with swimsuits for all website. I'm a size 22. I also have bought clothes for my trip from woman within. Good luck.

Kate
 
Lots of good advice. I'm going to go check out some of the websites and see what I can order.
Sun exposure is of concern - I have some really good sunscreen - but I think I'll stay away from capris and try for full length pants. Oh, and a very large sun hat! :)

For the pants, womanwithin.com. Search for 7 day pants. Knit, elastic waist, poly-cotton or cotton-poly, wide choice of colors, two pockets - and because it's plus size clothing, you should be able to wear the less expensive 1X.
 
Yep - @Kaytie and @kisobel are right - WomanWithin.com is great; I love their plain t-shirts for every day as well. Torrid.com does have (typically) some Disney-themed items; For our last trip I got some super-cute leggings and a shirt from them that were just the "ears" silhouette, but made such a cute outfit, everyone all day kept commenting on it! Sign up for both of their mail lists - they often have email specials.
 
Kohl's has some capris that are super comfy/lightweight. I could seriously live in these all the time. I wear a 22W and they are big on me.

https://www.kohls.com/product/prd-2855119/plus-size-sonoma-goods-for-life-cargo-capris.jsp?color=Woodland Red&prdPV=31

https://www.kohls.com/product/prd-2893274/plus-size-sonoma-goods-for-life-drawstring-capris.jsp?color=Pine Ridge&prdPV=11


Get some Body Glide. Use it between the thighs and under the "girls". I also use some on the backs of my ankles. Funky Monkey Butt Powder is great for the crack behind and for in shoes (and I've been known to toss some in the bra too).

A big brim, breathable hat would be good. I can't find the link right now, but DH bought some off Amazon. They are a camo type hat, UV protected with some breathable mesh.
 
I also like Lands Ends and Woman Within for pants. For a swim suit, think about a two piece, a tank top and boy shorts bottom and a long sleeved swim shirt from Lands End. You can wear the swim shirt under or over your top and it gives a lot of sun protection. Having boy shorts bottoms make using the bathroom so much easier.

Go, relax, enjoy!
 

GET A DISNEY VACATION QUOTE

Dreams Unlimited Travel is committed to providing you with the very best vacation planning experience possible. Our Vacation Planners are experts and will share their honest advice to help you have a magical vacation.

Let us help you with your next Disney Vacation!





Top