Discussion Board Forums General Discussion Looking for honesty

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  • #92556
    aussiejan
    Participant

    Thank you Marion
    I will fill in the card but think maybe I was unclear . My children are coming over from Australia but Mum will only be at home or the hospice …. She is not well enough to even get to the local shops. We just want to have quality time with her even if it is at the hospice. Living the other side of the world when this illness arrives in your family just adds another dimension to keeping up.

    #92555
    marions
    Moderator

    AussieJan….have a safe and enjoyable family holiday. Nothing beat togetherness with the one’s we love.
    Things to remember: stents can clog and cause an infection, which can be serious. Please take a look at the information and perhaps download the biliary stent card: http://cholangiocarcinoma.org/biliary-emergency-information-card/

    It’s best to take your mom’s temperature, daily.

    Enjoy, enjoy and be safe.

    Hugs,

    Marion

    #92560
    middlesister1
    Moderator

    AussieJan,

    Fingers are crossed. My mother never had a stent, but I have read many posts here where it greatly improves the patient’s health once placed. Hope it works for your mum.

    Best wishes,
    Catherine

    #92559
    aussiejan
    Participant

    I have just been following this thread and can see maybe I am not so strange. I flew my kids from Australia to UK in December and we had a great time with my mum. I am flying them over again as my dad turns 80 and we always planned a big family holiday and now I hope that the second stent will give my mum a new lease on life too so that we can have another wonderful family trip. This trip feels like a bonus but mum has been so unwell recently I was worried how she would cope. Fingers crossed for this stent .

    #92554
    jpmski
    Participant

    From what you’re describing of your mom’s current situation, it was about a month from there to when my mother passed away.

    Why aren’t they draining her stomach? Of all the indignities my mother had done to her that was one of the simpler.

    With her, the small intestines had gotten ‘pinched off’, probably from the cancer growth, as a result the stomach got hugely bloated because nothing could pass. They drained the stomach over a couple of days and then a GI doctor did an ERCP (I think) and put in a metal stint to open up the blockage.

    It obviously does nothing to treat the cancer, but her comfort was better and she went home.

    I don’t know you insurance situation, but if there is not a GI doctor in the loop you might seek one out.

    #92553
    daisy1
    Participant

    thank you both for taking the time to reply to me. I can’t get answers from her doctors now as they are not oncologists. When her oncologist told me they could offer no treatments at all, only symptom relief I bargained with them to move her to our local community hospital (no cancer unit) which has given Mum much happiness. It’s not quite home but close enough to make her happy. The doctors here are geriatricians with no cancer expertise. They can’t comment on her cancer, only in vague terms. They are not even draining her stomach of fluid, just increasing the morphine every few days and keeping on top of nausea meds and constipation meds. She is also on a steroid which has plumped up her face. She looks well externally but I know steroids can do this. I can’t see the state of her body internally so I rely on the doctors to help me only they either can’t or won’t as they’re not oncologists. Clearly they don’t think she has long if the oncologist has discharged her from their care but I guess me asking “how long” is the something only time will answer.

    #92552
    jpmski
    Participant

    Daisy,

    The end is near, but frankly ‘near’ is relative to a lot of other factors. For my mother the end was near for 9 months. She went into the hospital in August of last year because her bilirubin was too high and was in very bad shape, the palliative people told me 8 weeks seemed about right.

    I got my kids prepared for it and myself prepared for it because it looked like 8 weeks. And then at the end of September they were finally able to successful get a stint across the tumor/obstruction in the bile duct. The previous 10 months they were never successful, it just too tough.

    Once that happened, she became a different person for about a month. Both mentally and physically, she became someone I hadn’t seen in a long time. She was eating and joking, she put 10 pounds back on in a month. It was so bizarre to the point of it seeming like she no longer had cancer.

    It lasted about a month, and I’m very grateful for it because it was a reprieve for what was coming.

    My point with this is that it may cycle up and down. There will be a 1-2 week stretch where you think the end is near, and then she’ll hit a little bounce back and make you think this could go on for a long time. But it won’t.

    Where it spreads and the speed probably dictates everything. You seem a lot like me with wanting to know ‘facts’, but the answer to every question is “Maybe.” So what good are those answers?

    The only people I found that were actually accurate with their predictions or information were the hospice nurses, which makes sense. I’ll I can tell you is you will know the true end when you see it, and there will be no doubt.

    Joe

    #92551
    marions
    Moderator

    Daisy……when cancer cells spread to other parts of the body, the disease is progressing at an unpredictable speed. If this natural process cannot be stalled, then the likelihood of passing from this cancer is very high. I understand your desire to deal with something measurable, but the reality is that no one can predict the time of eventual passing due to this cancer.

    The palliative care team tending to your mom will be able to address all symptoms as they arise. Already your mom’s pain is reduced, her nausea and vomiting stopped and she has been eating meals. Palliative care teams are trained in keeping patients comfortable by addressing each and every symptom i.e. possible increase of pain will require additional medication, swelling of her abdomen (ascities) can be eased with period drainage of the accumulated fluid. Based on what we have seen on this board and our personal experience, it’s unlikely for the lung nodules to cause major problems. I think that all your questions are valid and for accuracy, you should discuss with the treating physician.

    Most importantly, dear Daisy, try to focus on your mom, say the things most important to you, hug and kiss and let her know that you are watching out for her. These are precious times not only for your mom, but for you as well.

    Many of us have walked this road with our loved ones and although very similar, personal experiences vary from person to person. I hope for others to help ease your mind and lend support to you.

    Hugs,
    Marion

    #12559
    daisy1
    Participant

    I have been in consultation with my mum’s doctor who is not an oncologist but a geriatrician. As such, some of my questions couldn’t be answered.

    I want brutal honesty, I need honesty to calm my imagination and help me deal with this better.

    If the Cholangio has spread to liver, skull, lymphatic system and lungs with even a visible lump floating around the neck area, does this mean the end is near? I have been given the external signs the end is near (thank you Lainy) but I wondered about the internal signs.

    Does the spreading of the cancer mean it’s gearing up to the end? Does this mean pain will increase? Does each metastasis bring it’s own symptoms ? I can see evidence of the lymph cancer in mum’s swollen stomach and feet but wondered about the others. Will the lungs be affected if there are spots there? Does this mean breathing issues or possibly of infection?

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