Doing Disney with Stage 4 Cancer

[ArwenMarie]

I hope you all have a wonderful trip together.

 

[DCDisney]

Personally I would rent a car and get a handicapped hang tag. My brother had a similar cancer and resisted the handicapped tag but it helps so much to conserve energy for more important stuff. Being able to drive and get supplies, food, pharmacy, , hospital, etc without it having to be a big deal can be really helpful. Waiting for buses in the heat can be tiring so if you've rented an ecv that can go in the car you might find that preferable.

 

[Redwolf8812]

Hi Ross0354. It looks like you've been given some good advice so I'm just posting to welcome you. It sounds like your husband and your small child will sort of be on the same schedule (needing naps) so that's good. Are you bringing a friend or another family member? That would be a great help if you could do that. I think you'll be exhausted right along with your husband and child but if you have help, you'll be able to keep your energy up a little better. (Here I go giving advice when I said I wouldn't). LOL.

God Bless all of you.

Penny

 

[GadgetTheInventor]

The boards here have been a great distraction from cancer for me recently. It's been a week now that my fiancee hasn't woken up yet from surgery. When she had the brain tumor out during the first surgery, she was in a coma for a month and the doctor kept wanting to pull the plug near the end. Distractions make the time pass more quickly and help keep my mind off the worst.

We've been battling cancer for four years now. The doctor gave a pretty grim prognosis recently but she's outlived their estimates before and aren't adults in their 20's supposed to ignore what their elders say? The irony is that she finished up her latest round of chemo this past Dec. and was diagnosed with a non-cancerous brain tumor during a routine check-up in Feb.

The cancer has been quite tough at times...she has lost a kidney, part of her intestine and stomach, and a rib. Her liver and remaining kidney aren't doing well at all right now. The brain surgery has added a whole new set of challenges though since she lost certain parts of her memory and has had to learn to walk, talk, eat, etc. again. The good part is that she has forgotten how rough the past four years have been!

So, I just wanted to introduce myself. I don't know how frequently I will be back to this thread. We are supposed to be moving in a week. I don't know if that will be happening or not because our move has already been postponed from last month to this month. I do agree with some of the PPs in that it is nice to have a separate thread for our topic. I've actually never gotten involved with other groups during the past few years, but this thread just felt right.

 

[TRICKY_TINK]

Glad I found this thread. I have a question about touring abilities with stage 3 breast and stage 4 bone cancer. My Girlfriend whom I've known since childhood and was in my wedding party has been fighting cancer for 3 years now. She has had lots of ups and downs in that time. Well its back again. I know she is in a lot of pain. She just started hospice and they have not found a good mix for her pain management. They are no longer doing cancer treatment they have told her to enjoy life. What does that mean really? She refused to be given a time table so we don't know. I want to take her to Disney. She has never been financially able to bring her son and I'm starting to get the feeling she may not come out of this. I should have done this sooner but she's young and I really didn't think it was going to come to this. Can anyone tell me what sort of things she can do. She is in a wheelchair but can briefly be up and walking around. I know thrill rides are out. But Pirates, small world, pooh, people mover, buzz and such should be ok right? I have not said anything to her, yet. Do you think she would be cleared to go? Does the starting of hospice mean they feel the end is vary near? I'm so confused and feel awkward inviting her on a trip if she physically cannot go esp. if she really would want to. Any guidance here would be appreciated.

 

[rewardsinlife]

Glad I found this thread. I have a question about touring abilities with stage 3 breast and stage 4 bone cancer. My Girlfriend whom I've known since childhood and was in my wedding party has been fighting cancer for 3 years now. She has had lots of ups and downs in that time. Well its back again. I know she is in a lot of pain. She just started hospice and they have not found a good mix for her pain management. They are no longer doing cancer treatment they have told her to enjoy life. What does that mean really? She refused to be given a time table so we don't know. I want to take her to Disney. She has never been financially able to bring her son and I'm starting to get the feeling she may not come out of this. I should have done this sooner but she's young and I really didn't think it was going to come to this. Can anyone tell me what sort of things she can do. She is in a wheelchair but can briefly be up and walking around. I know thrill rides are out. But Pirates, small world, pooh, people mover, buzz and such should be ok right? I have not said anything to her, yet. Do you think she would be cleared to go? Does the starting of hospice mean they feel the end is vary near? I'm so confused and feel awkward inviting her on a trip if she physically cannot go esp. if she really would want to. Any guidance here would be appreciated.

First, I am so sorry for your friend's diagnosis. ..and that you are such a great friend to set this up for her.

Now, there are a couple of confusing statements in your message. If she is stage 3 boarding 4 it is quite strange that dr.s would stop treatment and tell her to enjoy life. That is usually the patient's decision. For instance, my grandmother has had stage 4 breast cancer for over ten years now and she jut keeps going with the treatments when she is strong enough. ( if her anemia isn't too bad, she gets chemo) Are you sure that your friend hasn't said enough is enough and wants to live out the rest of her life without all the medications and appointments? I think this is very important to determine first if going on a trip.

Hospice is not a death sentence as it has become to be termed by society. There are of course many levels of hospice available. I knew someone who was on hospice care for 5 years before she passed away...she was very independent and even went to her son's soccer game one month before she passed away. ( she had breast travel to brain cancer).

Personally I would say go for it if your friend is up to it. If you can even manage to stay a couple days just to do the park it might be worth it so you all don't feel rushed and she won't get too exhausted. If the dr.s told her to enjoy life..then there should be no problem having her be able to go. Just know that a trip will move slower and take more time than if you were traveling with all healthy members.

P.s. If you end up going renting a wheelchair..if she doesn't already have one... is a must for endurance through the parks. hope this helps!

 

[bopper]

How far away from Disney do you live?
Your sig says South Florida....you could drive and stay at a value hotel and it would not cost tons and tons of money.
You could maybe approach her and say that you want to help her live the most she can and you wonder if she would be up for Disney? Let's say she says yes. Even if she can't do all day she might be able to see some of the shows and mild rides. She could go back and rest in the afternoon and you could take her son to the pool (or whatever).
But if she says no, then you could watch videos with her and help out with her son. Tell her you are happy to help her in whichever way she gets the most value out of.

 

[DCDisney]

I'm so sorry your friend is having such a rough time. Hospice programs are all different but the most typical length of traditional hospice coverage is 6 months. For younger people they seem to not usually want to stop treatment until things are very advanced so I would think doing the trip very soon would be best. She may or may not want to do rides getting bumped around may be pretty uncomfortable. She may be on blood thinners which you can't do any rides that are rough at all. Nausea may also be a concern. But even just doing a few things and getting to enjoy a magical moment with her child may be wonderful. I'd mention it very briefly and let her direct the conversation. Once my brother realized he wasn't going to get better he avoided talking about things that were just too much for him. He only lived 2 weeks once they stopped treatments and the Drs had all said 2-3 months. I'm sad he missed taking his kids, 3 and 5, to WDW but we will take them soon. You are a great friend!

 

[TRICKY_TINK]

To be honest I don't know what questions to ask her to get clear answers. I feel uncomfortable asking tough questions. I know she has had tons of surgeries and gone through many rounds of chemo and radiation. I think she hasn't responded to any of it and the treatment itself was killing her, so that is likely why they pulled it. I'm sure it was her choice, which must have been tough considering she has a young child. She has not been talking regularly like she used to since Hospice kicked in. I don't know what facility she went to and she isn't answering my calls or Facebook messages. I'm worried to say the least. Last I heard she would be there around two weeks to find the right mix for pain management. I took that as meaning she would go back home after that and have home care as needed. She choose not to have the doctor tell her a time frame which is fine I don't think I would like knowing that opinion myself. I'm really kicking myself for not doing this sooner when she was feeling good. We did however get to go skydiving as it was on her bucket list and who says no to a friend in her position. If anyone would like she has a Facebook page created by another friend its called Crystal Dawns Fight Againt Breast & Bone Cancer. Lets spread the love!

 

[SallyfromDE]

Would you be able to speak to any of her hospice nurses? They would have more intimate knowledge of your friends diagnosis. I don't think anyone wouldn't want to say anything out of place.

 

[TRICKY_TINK]

Went into Hospice to see her. Talked with her Nurse and got her discharged for a Disney Trip over the weekend. Her ex boyfriend had set up a hotel and tickets threw a friend of a friend type thing. She had a great time. Didn't do to many attractions. But she got her 1st visit in and that's what counts. She did get on Haunted Mansion, got to ride the Monorail watched a parade and Wishes. She did some of the kiddy stuff and Pirates too. They stayed an extra day today and I'm back home. Thanks everybody! She will return to hospice when she gets back. The ex is going to take her home with him and have them do home hospice for the remainder of the time.

 

[ttintagel]

Thanks for the update; sounds like she had a great time!

 

[DCDisney]

I'm so happy you guys were able to make this special wish come true!

 

[Redwolf8812]

The boards here have been a great distraction from cancer for me recently. It's been a week now that my fiancee hasn't woken up yet from surgery. When she had the brain tumor out during the first surgery, she was in a coma for a month and the doctor kept wanting to pull the plug near the end. Distractions make the time pass more quickly and help keep my mind off the worst.

We've been battling cancer for four years now. The doctor gave a pretty grim prognosis recently but she's outlived their estimates before and aren't adults in their 20's supposed to ignore what their elders say? The irony is that she finished up her latest round of chemo this past Dec. and was diagnosed with a non-cancerous brain tumor during a routine check-up in Feb.

The cancer has been quite tough at times...she has lost a kidney, part of her intestine and stomach, and a rib. Her liver and remaining kidney aren't doing well at all right now. The brain surgery has added a whole new set of challenges though since she lost certain parts of her memory and has had to learn to walk, talk, eat, etc. again. The good part is that she has forgotten how rough the past four years have been!

So, I just wanted to introduce myself. I don't know how frequently I will be back to this thread. We are supposed to be moving in a week. I don't know if that will be happening or not because our move has already been postponed from last month to this month. I do agree with some of the PPs in that it is nice to have a separate thread for our topic. I've actually never gotten involved with other groups during the past few years, but this thread just felt right.

Welcome. Hope things are a bit better. Praying for you...

- Penny

 

[slcmom]

Hi everyone
Thanks for this thread. I'm truly sorry there's a need for it....I'm currently in remission from stage 4 cervical cancer. They did chemo and radiation at the same time, and lots of little surgeries and procedures, then did a huge operation - an complete anterior exenteration and radical hysterectomy. I was in the hospital and rehab center for 4 months after that. I'm grateful to be in remission. It's been a year so far. I haven't regained any stamina, but am in no pain.

I haven't been to Disney since this all started 2 years ago, but have filled many hours planning fantasy trips! Hopefully I'll actually be able to take one on of these days.

All of you are in my prayers,
Ann

 

[Redwolf8812]

Hi everyone
Thanks for this thread. I'm truly sorry there's a need for it....I'm currently in remission from stage 4 cervical cancer. They did chemo and radiation at the same time, and lots of little surgeries and procedures, then did a huge operation - an complete anterior exenteration and radical hysterectomy. I was in the hospital and rehab center for 4 months after that. I'm grateful to be in remission. It's been a year so far. I haven't regained any stamina, but am in no pain.

I haven't been to Disney since this all started 2 years ago, but have filled many hours planning fantasy trips! Hopefully I'll actually be able to take one on of these days.

All of you are in my prayers,
Ann

Welcome! Thank the Lord for your remission! I hope you get back to Disney soon!

- Penny

 

[Redwolf8812]

Checking in. How is everyone? I have a scan on the 8th - please pray, pray, pray!

I now have a wheelchair that's mine for as long as the insurance company pays the rental company. The last time we went to Disney we flew down and rented a wheelchair there. Does anyone have any experience with flying with your own wheelchair? Do most airlines allow it? Is there a fee? Etc, etc.

Thanks.

- Penny

 

[Talking Hands]

I am just starting on the journey of this monster called breast cancer. Diagnosed earlier this month. I certainly plan to visit WDW while I am going through treatment. Disney is my happy place.

 

[TreeSapp]

I have a feeling I'll need to rent a wheelchair or ECV while I'm there, but I'm hoping not. During my cycle good weeks, I feel pretty good, but the more treatment I have, the more exhausted I get, so we'll see.
Lisa

There's a really nice thread going about "what having a wheelchair means" right now. It's ok to have one & it's ok not to use it when you don't want!

 

[DisDee]

Checking in. How is everyone? I have a scan on the 8th - please pray, pray, pray!

I now have a wheelchair that's mine for as long as the insurance company pays the rental company. The last time we went to Disney we flew down and rented a wheelchair there. Does anyone have any experience with flying with your own wheelchair? Do most airlines allow it? Is there a fee? Etc, etc.

Thanks.

- Penny

Penny, I've flown with my own wheelchair and there's no charge. The airline actually gate checks it. You should be among the first to board but last off. Any chance you are flying Spirit out of Atlantic City?

Prayers to you for your scan. I'll probably have mine on the 14th then fly away to WDW on the 15th. I'll wait for the results until I get back but sometimes I just prefer to know and be done with the anxiety.

I'm still debating about the chair this time. We took it on our 4-night cruise over Labor Day weekend and used it on the ship occasionally. Mostly in the evening when I was fatigued. I was able to get around the port as long as I relaxed on a bench every now and then.