Traveling with family member with cancer

[julirina]

My dad has colon cancer and is taking a chemo break in Sept to come to WDW with us. He's quite worn down from major surgery in April and the ongoing treatments, and I know he's underestimating the amount of walking we'll do each day. Has anyone travelled with someone undergoing cancer treatment, or travelled themselves while undergoing chemo? Is there anything I should be prepared for, any tips for keeping him energized and enthusiastic? He's concerned about not being able to ride the attractions (he's a coaster buff but he's got an implanted chemo port that's giving him trouble and he's not sure if it will feel better enough by then, or if he's going to have restrictions). He's also worried about wearing a swimsuit -- he thinks his big ugly abdominal scar and port will scare small children away or something. I keep assuring him that these are total strangers and he'll never see them again -- he has no one to impress at WDW!

I'm also concerned about just general run-down-ness. I fear this weeklong adventure is just going to exhaust his already compromised system. I thought he'd appreciate being able to use an ecv, But every time I mention that ecv's are available I get "the glare." I thought about renting one for length of stay, but I don't want to shell out for it if he's going to be stubborn and refuse to use it. Should I just see how he does at the beginning of the trip and rent one later if we find he needs it? Or just rent one in the parks? We're staying at ASMu -- should I request a room in one of the front buildings so he doesn't have as far to walk to catch the buses?

I'm worried about him in so many ways...I want his trip to be magical, too, but I know it's going to be rough on him. If anyone has BTDT and could share some thoughts, I would really appreciate it. Thanks!

 

[zumbergc]

implanted chemo port that's giving him trouble .

Is there in an infection or something going on in the port? Are they flushing it as often as they are suppose to, when he isn't recieving chemo regularly.
Some people have to have a new chemo port put in. I can point you to the forum if you want, its a breastcancer forum, but ports are ports. PM me to make sure i see it. Is it a reaction from the type of chemo he is on. Some people just have problems, and have had several of them during treatment.

To cover a scar on your stomach and the chemo port, you can buy him a rash guard, its a swim shirt, think shirt made of swim suit material. You can see them at scuba.com search for Rash Guard. If it makes him more comfortable, it might be worth it, plus it keeps you warmer if the weather is cooler.

I've read tons of peoples descriptions on how different chemo's affect them. Some of it depends on the age and overall health of the person. Would your dad be able to walk 5 miles in one day at home? Like if you dropped him off 2 miles from home, could he walk it, comfortably? Some say you walk miles at disney, I've even seen people post about pedometers, and they walk 10 miles a day

So, definitely get a scooter. It will make the day so much better, and easier, and make him be able to enjoy more of the day, and days after. The resorts are pretty big, having a scooter from offsite, will make getting around and getting to the food courts easier, even if he’s in a deluxe resort, there are some super long hallways. At the end of the day it’s a long walk from the park exit to the buses, and then the bus back to the resort bus stop to the room.

My mom had been on chemo for over 12 months, with very little break. So, she only went to the park a couple hours a day, w/ a scooter. She took naps daily at home, and wasn't very active. So, you kind of have to look at how dad does at home, and guage how that could translate. Does he go shopping, or out and about for 4-5 hours during the day. How is he when he gets home, or is he completey wiped out for several days? How is he at family gatherings , with lots of people and stimulation. Does he get wiped out for several days? No matter what the answer, you can make Disney work, you just have to adjust what he will do. If he does get exhausted easily, then taking it easy the first day out will be important so he is able to enjoy himself the next few days.

One other thing to rember. The day you fly in, all that travel may wipe your dad out for the day, it did for my mom. So, may want to plan for him and a person to be back w/ him so he is not alone. Then the rest of the group go out. Plus, the last day at Disney, he may take it easy to accommodate the long day of travel on the way home.
We tried to make sure my mom arrived after the 4pm check-in time, so that way we were more likely to have a room when she got in. We arrived earlier in hopes of the room being ready too, plan worked, bad part, mom’s flight had some delays, she was super tired when she arrived.

Your dad may have to spend way more time back at the resort, maybe laying by the pool, or laying in bed? Does he nap every day at home? does he still work? Even if he is napping back at the room w/ someone keeping an eye on him. This part was hard, leaving mom and dad back at the room, and then going out and doing something else. Yes , myself and husband had gone tons of times before by ourselves, I was just not wanting to leave them alone.

I highly recommend breaks, naps, scooter rental. If his butt is gone, because he lost tons of weight. Bring a cushion for him to sit on, for the bus, for rides, etc, because there are tons of hard plastic seating, and my mom didn't have any fat on her butt left. If it pertains, then bring something along. Like a seat cushion for a dining room, or kitchen table. He can use it as a back rest on the scooter, or a seat cushion on the scooter.

To keep him excited, get him a disney book, and have him go thru and pick out what things he is interested in doing. Like which rides, shows, he would like and places he wanted to stay at. My mom loves animals so ak, and taking a trip over to sea world was a must. Find out what places he wants to eat.

I was extremely stressed during this trip. Some of it was because of how declined mom’s health was, and how perfect I wanted the trip to be.
Try to remain flexible, and plan to have him spend time back resting, and that time, doesn’t mean the whole group has to be back waiting on the resting person. Normally its not to bad waiting for a bus to get back to the resort, but when you have a parent who really needs to lay down waiting, I was getting frustrated. So, maybe plan on taking extra $$ for a taxi, when he really needs to get back and the bus in no where in site. We drove a couple days, to sea world, and ak, so we were in more control of the getting back to the resort.

Food, is he able to eat a normal diet, or does he have food restrictions. Check out allearsnet . com for menus of all the restraunts. Some people aren’t able to keep much of anything down, and have nasia problems. We stayed at a dvc resort, so we had a kitchen to cook some meals in, and had yogurt, and other things mom liked. We went to the publix and got some Disney balloons, got some chocolate covered strawberries, some echlair treats, along w/ tons of bottled water & other food.

Pills, how many pills is he taking? If he is on any of the controlled substances, have a spare Rx script to cover those number of pills he takes, in the event the pain pills are lots or stolen during your trip. Pills, that a doc can just call in, its not as big a deal as the ones, that require a script to pick up. Mom was on over 15 types of meds. So, meds she took during the day, we got a pill box, labeled the compartments, w/ the names, and then put it in a ziplock bag (so they don’t empty out if it accidentally opens up. It didn’t work to well to do a morning, noon, night pill box, so we had to label thing independently. Plus, we had a big spreadsheet, with what pill she takes, when to help keep track of all the pills. Again, PM if you want to see what this looks like, I can email it to you.
. Pack all meds in the carry on suit case, don’t put them in the checked bags.


Just remember you will have a magical trip when you are there. See what you can see, be happy about all the wonderful memories you will create there. Be happy, sit down, people watch when needed and have a great trip.
Connie

 

[julirina]

Connie - your insights were amazing. Thank you so much for mentioning all of the things I never would have thought of, like taking a seat cushion (his butt is GONE) and how to pack meds.

His port is really bugging him but he refuses to tell the dr about it -- he had difficulty with the surgery to put it in and he doesn't want to draw attention to it and have them move it to the other side (another surgery!). He insists he'll just live with it until his treatments are done in December.

I think the scooter is going to be very helpful for him. I mentioned it briefly again tonight and he seemed a little more receptive to it...I just made sure to put it in terms of him being able to enjoy more if he's not exhausted from walking, and I also mentioned how helpful it would be if he could cart tired grandkids around on his lap. It seems that if it's a benefit instead of a hindrance to the rest of the family, he's not so opposed to the idea.

Again, I thank you so much for taking the time to respond so thoroughly -- you brought up things I had never even considered, and it's obvious that you've been right there in my place. I'm determined to help make this fun for him, but ultimately he has to want to enjoy himself (and I really think he does, he's just worried about what he can handle, and worried about being disappointed at what he can't do). If we can take the focus off of that and turn his outlook in a positive direction, I think he'll be fine.

Thanks again!

 

[ireland_nicole]

I second what she said- our experience w/ my Dad was very similar.

 

[zumbergc]

His port is really bugging him but he refuses to tell the dr about it -- he had difficulty with the surgery to put it in and he doesn't want to draw attention to it and have them move it to the other side (another surgery!). He insists he'll just live with it until his treatments are done in December.


This is just me but, who is your dad going to his regular dr visits with. I went to most of mom's. Not necessarily the chemo appointments, but when you see the doc, generally if a new symptom pops up, ct results, or blood results are in. I had a big notebook of information, and if new things popped up w/ mom, it was on my notes to discuss with the dr. Mom had her list, she went first with her questions, and then I would add the things that I had on my list.

So, i really encourage whoever is attending those appointments, if possible you take time and go, because if there is an infection going on, thats going into a major blood vessel.
At the very least, have him ask the onc nurse (the head nurse (not the blood pressure, blood drawing checking your counts), the one who has the super degree. In my mom's chemo office, there was one head chemo nurse, and one medium one who didn't know near as much as the head lady who has like 30 years experience. It was a small office, if she is at a larger center there may be more than one, but don't be afraid to request to see the one he feels most comfortable with, ask the question to.

Connie

 

[SueM in MN]

you got LOTS of good advice already. I only have a few things to add.

1) If he doesn't want to go back to the resort, but needs a small rest, First Aid in any park is a great place to rest.
2) The rash guard shirt that was mentioned will not only cover his scar so others might not see it, but would also protect the scar tissue from the sun. Scar tissue is usually more sensitive to sunburn.
3) Check out the disABILITIES FAQs thread near the top of this board. It has lots of other information that might be helpful.

 

[Cheshire Figment]

I would start off by picking a location about 1 mile from where he lives. Ask him if he feels he would walk there and back. After a pause for him to respond, then say "five times a day for a week?" The average person walks about 8-10 miles per day at WDW.

Then ask him the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are traveling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

 

[julirina]

So, i really encourage whoever is attending those appointments, if possible you take time and go, because if there is an infection going on, thats going into a major blood vessel.

Thank again, Connie. His port is definitely not infected; it's just uncomfortable. He says it feels like it's resting right on his breastbone. He's so thin (he lost over 50 lbs before he was even diagnosed with cancer) that he's probably right -- there's just no padding there to cushion it. I don't think it's painful, and I've seen it -- it's not red or showing any signs of infection. It's just an irritation, if that makes sense. He goes to his treatments with my mom and she's pretty good about asking questions for him (he's a bit scatterbrained from the meds too!), but he has specifically asked her NOT to make a big deal about this. And they're using the port for his chemo and pump without any problems.

1) If he doesn't want to go back to the resort, but needs a small rest, First Aid in any park is a great place to rest.

SueM -- do they have cots for lying down, or just a place to sit? I don't know how much resting he'll want to do but this sounds like a good option if he just needs a short break instead of a full-blown nap.

I'm going to post another thread with questions about harnesses and lap bars on the rides. Thank you *everyone* for your input!

 

[chirurgeon]

Julirina, I am a rectal cancer Victor. I went to Disney 2 weeks after I finished my last chemo. I had planned the trip for over six months before hand. I rented a scooter and it definitely was worth is. I didn't use it the entire time, for an evening or two when I knew I wouldn't be doing a lot of walking, I left it in the room. Also part of the trip was a solo trip and I ran down the battery by going faster than if I had had someone with me. I rode everything I wanted to. Most of the queues are accessible and the ones that aren't have handicap access. No one gave me any hassle. I looked like a healthy person, but no one questioned why I was using an ECV. And I know about a port bugging you. You just know its there and it is annoying. I was also dealing with an ileostomy and again, not a single problem. No leaks thank goodness. And I rode eveything from RRNC to TOT. If you have any specific questions, feel free to PM me.

Kim

2 years, 2 months cancer free and counting

 

[SueM in MN]

SueM -- do they have cots for lying down, or just a place to sit? I don't know how much resting he'll want to do but this sounds like a good option if he just needs a short break instead of a full-blown nap.

I'm going to post another thread with questions about harnesses and lap bars on the rides. Thank you *everyone* for your input!

They have cots for lying down.
Here's a picture of one of the rooms at MK, which is fairly typical of the ones in the other parks. Not all the rooms have 2 cots and they do have a privacy curtain:

 

[Mskanga]

My daughter has been out of chemo treatments now for almost four months and her stamina is not back to normal in the very least although she is not as exhausted as she was while she was getting chemo. We are going to DLR in a couple of weeks for her make a wish trip and there's no way I would not do the trip without a scooter or power wheelchair , it will make it for a much more pleasant trip. We plan on doing things at her own pace , the main key for us is to keep her hydrated enough , slow pace and frequent breaks , I woill be the one travelling with all the meds necessary which luckily at this point are not too many.
Chemo takes such a toll on people.....I hate it !

 

[Oswald the Rabbit]

It looks like you got a lot of great advice. I will let you know about my experience and what we did.
We traveled last year in Feb.(low 80's) with my father who was diagnosed with renal cancer but was first recovering from major prostate surgery and infection. His prostate severly damaged his bladder(incontent) and his kidney function was not good. So he was very weak and we had to make accomodations and special planning. The trip to was to get his mind off of his upcoming kidney surgery.

First thing: Bring a note from your dad's oncologist stating he needs special assistance and can not wait or stand in lines.

Second: Make sure your dad has his own cell phone and backpack(water, meds, ect)

The easiest of the parks for my dad was the Magic Kingdom. It had ample transportation by using the steam train which would take him from the entrance to frontier land, then Tomorrow Land then back to the entrance.

This got him around to different areas with out a lot of walking. Also, at the entrance they have the double decker buses and taxis that will take you to Cinderellas Castle.

Epcot does have a boat but you still have a lot of walking and the boat usually has a long wait and takes a while. Most of Epcots attractions are inside, airconditioned and are at a leisurely pace.

Animal Kingdom was the worst for my dad due to the crowds and narrow avenues that would require lots of walking.

If your dad is self consious about his scars. Try buying him a loose fitting UV pool shirt made out of lycra. A lot of people where them to block the sun and they will also hide any scars and keep them from getting burned.

I do not know where you are staying, but if you are at a Disney resort they will most likely be able to help your dad get to his destination by driving him in one of their shuttles. If you call the baggage area and talk to the manager and let him/her know about your dad, they will usually assist with a shuttle to where he needs to go. We would tip them as if it was a taxi ride($10). We only did this if he could not make a bus with us.

Lastly-let your dad go at his own pace. It can be overwhelming and frustrating, but if properly planned very enjoyable and rewarding.

The trip worked for my dad. He is fully recovered and cancer free.

 

[Belle1962]

First thing: Bring a note from your dad's oncologist stating he needs special assistance and can not wait or stand in lines.

I thought CM's would not look at a medical note? It is related to HIPPA and privacy and stuff---plus they are not medical personnel. Has this changed? I dread the day some CM asks me to go into everything again--it was hard enough expressing them the first time around.

 

[dlrhine]

Thank again, Connie. His port is definitely not infected; it's just uncomfortable. He says it feels like it's resting right on his breastbone. He's so thin (he lost over 50 lbs before he was even diagnosed with cancer) that he's probably right -- there's just no padding there to cushion it. I don't think it's painful, and I've seen it -- it's not red or showing any signs of infection. It's just an irritation, if that makes sense. He goes to his treatments with my mom and she's pretty good about asking questions for him (he's a bit scatterbrained from the meds too!), but he has specifically asked her NOT to make a big deal about this. And they're using the port for his chemo and pump without any problems.

We are going through this with my Mom right now who has ovarian cancer. She was dx on Sept. 21 2007 and had her surgery on Sept. 25th. She has been doing Chemo since Oct. and will go until Dec. with an 8 week break from the end of March to May 5th. Her port bothers her but she did ask the dr. about it and it isn't infected it is just that she is so thin and it is resting on the breastbone just like you said. My mom started at at 125 lbs when she was dx but now weighs 104 on a good day. I know for a fact my Mom couldn't do disney at all! We are hope that she can make it in april 09 after the end of her chemo in Dec. but that is going to take hard work, as she walks with a cane.

Good luck with your trip.

 

[leebee]

I think the doctor's note was so you can get a guest assistance card. Once the GAC is issued you won't have to show the note or explain detail to every cast member; just show them the card and they will accomodate your needs.

One thing not mentioned: Bring PLENTY of sunscreen for your dad, maybe even a hat if you can bully him into it. My sister's chemo strongly effected her melanin production and tanning ability (chemo kills off fast-growing cells like skin cells!). It's reallyreallyreally easy for a chemo patient to get fried with minimal exposure to the FL sun. Remember to protect his feet if wearing sandals, and if he won't wear the hat, don't forget to protect the tops of his ears and the part of his hair.

ECV or power chair! Don't exhaust anyone! Even if the kids can't ride in his lap (safety issues) he will be invaluable as the backpack carrier!! I always get so hot and sweaty carrying that thing around!

 

[BroganMc]

You've gotten a lot of great advice already. As for your dad resisting the ECV, you're just going to have to battle through his stubborn hide. My dad resisted the idea at first too. But since I have a powerchair for my limited mobility I just ignored him and rented a scooter for him. I told him it was solely to keep me from being whiney and impatient (as I tended when I first got my wheels). He was free to use it or catch up to me later on foot. I only asked that he try it one day.

He did and loved it. Now he owns one. He only ever uses it when touring. The best thing about it is that he has a ready-made seat for any parade or outdoor function. Plus you get to tour the parks at your leisure. Seriously, they charge people to tour on one of those Segways.

Depending on when you go, be extra careful about the heat. September is known for being hot & humid. My stubborn dad insists he loves the hot sun but I see how much it affects him. (He shuts down within 10-15 minutes of direct sun.) So we do inside things during mid-day and reserve outside for early morning and late afternoon/evening.

Do not commando tour! My mom tried that in-between chemo treatments for breast cancer. At the time we were newbies and did not get her an ECV. She was worn out by day two.

Have a plan for the day and make sure you both have cell phones. Then if he needs to slow down or come later, you can make contact to meet up. Be flexible.

 

[julirina]

We've convinced my dad to use the ECV. He's still got concerns (mostly about using the buses, etc) but I think overall it's taken away some of his fear of not being able to keep up. Also, my quite-unexpectedly being 10 weeks pregnant while we're at WDW was a big factor -- now he understands that he might have to share his scooter with his very tired and very queasy DD!

I bought the Open Mouse book for him and it's been a big help to him just knowing what to expect on rides, etc. I wanted to thank everyone for your input and tell you all how much it has helped us plan for him and his specific needs (which I'm suddenly finding myself maybe needing too, like the first aid stations for a lie-down when I feel really woozy...? ). I think the trip is going to be wonderful in so many ways!

 

[SueM in MN]

Conglatulations on the little surprise

Glad things seem to be working out for you.

Two suggestions - even though you are queazy, make sure to get enough fluid (plain water is best) and remember that your blood sugar can go down really fast with activity and not eating. I had severe all day sickness (morning didn't begin to describe it) with when I was pregnant with both DDs. I couldn't eat much at a time, but dry cereal (the kinds without a lot of sugar coatings) agreed with me to at least eat a couple of pieces at a time. So, I carried several types of dry cereal with me at all times.
I had not heard of seabands when I was pregnant, but I have heard since then that some people find them very helpful with nausea. They are basically a bracelet that applies a small amount of pressure on points that are supposed to releive nausea. It's not invasive, so worth a try.
Also, be sure that your dad doesn't try to make you drive the ECV all the time because you are pregnant. Walking is good for most people in early pregnancy, but sometimes people treat pregnant women like they need to be wrapped in cotton the whole pregnancy.

Have fun!

 

[julirina]

make sure to get enough fluid (plain water is best) and remember that your blood sugar can go down really fast with activity and not eating.

...I carried several types of dry cereal with me at all times.

I had not heard of seabands when I was pregnant, but I have heard since then that some people find them very helpful with nausea.

Thanks for the well-wishes and the tips, Sue. I did not have any sickness at all with my first pregnancy -- a little lightheadedness in the 2nd tri, but nothing like this constant nausea I'm facing now. And our second child was adopted so I just had to deal with being sick over all the paperwork. This really caught me off-guard! Of course I made all our ADR's for buffets, thinking I'd be able to feast, but now I'm finding I'd be much better off if they'd let me have my whole dining alottment in snack credits. I appreciate the advice -- I'm going to hunt for the bracelets today.