Needing advice and tips

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  • #95464
    hopeseeker
    Participant

    Dear Mary,

    I didn’t see your post when I responded to Debbie earlier, but I thank you for your input!

    I read the link to posted for me and that had a lot of great info too. I appreciate it very much.

    I need to do some more research for the possibility of this vacation. We could be very flexible on what we did there, and she has a wheelchair she can use for trips out and about to eat or sightsee. She could also stay at the cabin and rest. We would for sure get a cabin that had a room for her to sleep in, and we would bring plenty of pillows and such for her to prop up and sleep or whatever is comfortable for her.

    I do so want this to be a reality for us because it will be wonderful memories for us all. I want my husband to have some good quality time with his mom which he has not been able to have for many complicated reasons that I won’t go into.

    #95463
    hopeseeker
    Participant

    Dear Debbie,

    Thank you for your advice! I am thinking of calling to talk to my MIL’s oncologist to see what he suggests also. I think its important for us to take this trip and to make sure she has a great time.

    She was only given 6-9 months with chemo and although I know that is just a guess I don’t want to assume anything and then it be too late.

    #95462
    bglass
    Moderator

    Dear Hopeseeker,

    Belated best wishes for your MIL’s recent birthday. It sounds like you had a pleasant and memorable celebration.

    I was puzzling over your question – just as you say, this is a tough judgment call. I have copied below some thoughts posted by Marion and Michelle (a member of the Foundation’s Nursing Advisory Board) on vacationing when CCA is a factor.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=105491#p105491

    My two cents – In difficult moments, planning a family vacation can be therapeutic. It is a chance to get everyone together and gives family members including the CCA patient something happy to look forward to. Your husband’s desire to plan a trip to a beautiful mountain setting, and your MIL’s stated willingness to join in, are so positive to hear. If your MIL wants to be part of a lovely family vacation planned around her healthcare needs, this could create wonderful moments and memories for her and your family.

    But I read through your descriptions of your MIL’s treatment and the frequent amount of interaction she seems to need with doctors and other medical care providers. Are there good medical services available near the cabin? Are they accessible if there is inclement winter weather? Will the cabin be comfortable and pleasant for your MIL if she has little energy while there? Will the sleeping arrangements work for someone who is having sleeping difficulties? Will she be comfortable during a long car ride? I am sure these same questions have crossed your mind and are the basis for the worries you are feeling. The state of local medical facilities however can be investigated now; you can think through the many details related to sleeping, travel and other arrangement needs and see what is feasible; and your MIL’s doctor could be consulted regarding the likely progression of her health thinking ahead about several months from now versus an earlier date.

    The other question is how much flexibility you have. If the trip can be modified or cancelled easily, there would not be much downside to working on plans for what hopefully can be a great family trip.

    You and your family are doing so much to support your MIL as she undertakes difficult treatments.

    Regards, Mary

    #95461
    debnorcal
    Moderator

    Dear Hopeseeker,

    We were in a similar situation a few years ago. My husband had been deemed inoperable and was undergoing gem/Cis. He was very weak and would frequently get infections, sometimes requiring hospitalization. He insisted on taking the family on vacation. I was reluctant because I worried that he would become ill in an area where community hospitals knew nothing about Cholangiocarcinoma. We did take the trip and it was a very special time for our family. We all thought it would be our last family vacation together.

    I packed a medical bag filled with thermometer, Tylenol, Citpro- his go-to antibiotic for infection,, plus the Cholangiocarcinoma information card for wallets, and his medical history records. I also located the nearest hospital, which was actually on a nearby island, accessible via helicopter. We were prepared for a bad infection. Turned out he only had one down day, which I aggressively managed with Tylenol. I’m glad be made the trip. Perhaps you could make similar preparations for your MIL and plan on low key vacation with lots of quality time together.

    Debbie

    #13597
    hopeseeker
    Participant

    Long post and I am asking for some advice and guidance as to what to do.

    My husband and I wanted to take his mom away for a night to celebrate her 60th birthday, but she did not feel up to being away from home. Instead she said dinner out would be enough. We took her to dinner about 35 min away from where she lives. She didn’t eat much because she can’t most times and has to eat very slowly at that. We took her to get coffee and then back home and she was so tired just from that. She had a rough morning the next day also and wasn’t feeling well. I think the trio out was just too much on her.

    So my concern is that my husband wants to take her to the mountains with our family for vacation this winter to enjoy the snow and scenery. I am trying to get him to aim for an early time in the fall because to be honest I do not think she will have the energy. She told my husband that she would push through and go because she really wants to do that, but that’s not good either. I have so many concerns about this.

    She shuffles when she walks, her legs and feet have constant edema, they have increased her morphine and her platelets have been low for over a month now even with the lowest dose of chemo. She tires easily and sleeps a lot. She has to take sleeping pills for sleep because she doesn’t sleep through the night even with those. She is going to the dr every Thursday for platelet checks and for them to figure out her chemo plan better. She has mets to her lymph nodes but won’t have another scan until late September.

    For the vacation we would be traveling 5-6 hours to a cabin in the mountains and be there for about 5 days. I really want to see us be able to do this trip for her and for my husband who feels he can’t do much to help her other then help pay for things and take her place when we are able to.

    What should we do? What advice do you all have for us?

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