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Viewing 15 posts - 31 through 45 (of 81 total)
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  • #81873
    sadwife
    Member

    Has anyone heard of Galeffi? I have been looking for brioschi, which I have heard on this website is wonderful for hiccups, unfortunately I haven’t been able to find it. I have asked family members to find it and someone told me after inquiring, found that the company went out of business last year. They suggested Galeffi which can be found at any store that sells Italian products. If anyone is familiar with this product please let me know. I don’t want to order brioschi online because with the company out of business what’s for sale online is most likely old stock someone is trying to get rid of.
    Any comments appreciated!!
    Thanks,
    Olga

    #81872
    darla
    Participant

    Olga,

    Just know that you are not alone. We all understand and many of us have been there. You are already doing what I was going to suggest. Try to take time to do something for you when you can. Yoga is a good choice. It won’t change things, but will give you a well needed break and help to keep you sane in this often crazy world of CC. And the most important thing, take it all as it comes, one day at a time. :)

    Hugs,
    Darla

    #81871
    sadwife
    Member

    Thanks,
    It still doesn’t make me stop wishing I could do more, or make me stop asking, “why”, or stop wishing I would wake up from this nightmare. But, it does help me get through another day. Before the stroke, Norbert was his old self dealing with the cards life dealt him the same as he always did. Since the stroke, he’s not himself and it tears me up inside to see him like this.
    I still get to yoga when I can and I never feel guilty because its what’s gotten me through this year, so far.
    One day at a time.
    Olga

    #81870
    marions
    Moderator

    Olga…….please know that when touched with this cancer emotions of despair arise and meltdowns help us regain our balance and give us the strength to move onward. This is not an easy road you are traveling – none of us are prepared – and none of us had prior training. Know that you are doing everything in your power to ease the situation and every so often read through the Caregivers Bill of Right

    “I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.

    I have the right to seek help from others even though my loved one may object. I know the limits of my own endurance and strength.

    I have the right to maintain parts of my own life that do not include the person I care for, just as I would if he/she were healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things just for myself.

    I have the right to get angry, be depressed, and express difficult feelings once in a while.

    I have the right to reject any attempt by my loved one to make me do things out of guilt or anger. (It doesn’t matter if my loved one knows that she/he is doing it or not.)

    I have the right to get consideration, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.

    I have the right to take pride in what I’m doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one.

    I have the right to protect my individuality. I also have the right to a life that will sustain me in times when my loved one no longer needs my full-time help.”

    (Author Unknown)

    Hugs,
    Marion

    #81869
    lainy
    Member

    Dearest Olga, I know how you are feeling as many of us have felt the same and very sadly it is normal to feel so sad. Looking back I guess that I just wanted to make the most of every moment and Teddy’s only request was that I don’t let down in front of him. He had steeled his mind from the beginning for what he knew was to come and if anyone broke down in front of him he felt it would weaken his resolve. For us it all worked, not everyone can do that. Maybe some short walks for yourself would help and as I have said I would get in the car, drive around our neighborhood and put music on and sing as loud as I could and that seemed to relieve a lot of stress. After about 20 minutes I would go home and felt relaxed again. We don’t know and may never know the why and what for, I still don’t after 4 years. I have learned not to question it anymore and perhaps he will tell me when I see him again. I have found great comfort in being a believer that I will see him and that he does come around me. I can just feel it. Perhaps you could talk to a Social Worker or a Clergy and it might be a good idea to talk to your own Doctor and get a mild anti depressant to help you get through this terrible journey. Wishing you the best and also wish I could take all this away with a magic wand.

    I asked for strength. God gave me difficulties to make me strong.
    I asked for wisdom. God gave me problems to solve.
    I asked for prosperity. God gave me brawn and brain to work.
    I asked for courage. God gave me dangers to overcome.
    I asked for patience. God placed me in situations where I was forced to wait.
    I asked for love. God gave me troubled people to help.
    I asked for favors. God gave me opportunities.
    I received nothing I wanted.
    I received everything I needed. By Aaron Hoopes

    #81868
    sadwife
    Member

    What do you say to someone who’s scared? I’m scared for him and it breaks my heart to see him like that. It kills me that I don’t know how to comfort him and that I can’t do more. I do what I can to stay strong for him but I have my meltdowns. We are Catholic but don’t practice. Not that we don’t believe in God, but after this years events I am left questioning God for the first time. I used to always say, “Everything happens for a reason, and God wants me to learn something from this.” But now, all I can find myself asking God is “Why???!!!”

    One Day at a Time!!! That’s all I can do now.
    Olga

    #81867
    dukenukem
    Member

    Make sure to take time to stop and smell the roses.

    Duke

    #81866
    mbachini
    Moderator

    Olga,
    I hope you two have a blast! I love spontaneous adventures, they create such great memories! Safe travels and can’t wait to hear about it.
    Melinda

    #81865
    sadwife
    Member

    Thanks for the advice, but Norbert has never had any symptoms from the cancer so he has no stent. The only thing we have to deal with at this point is the setbacks because of the stroke. And even those are getting better every day. That’s why we figure we might as well finally take those road trips we’ve been talking about for so long. Norbert and I have always been a “fly by the seat of our pants” kind of people. So, off we’ll go.
    Hop in the car and see where we wind up!!
    One Day At A Time!!!
    Olga

    And I do have all of the docs numbers in my phone.

    #81864
    marions
    Moderator

    Olga…. As Lainy suggested, you will want to make sure to have important phone numbers on hand. Not sure whether Norbert has a stent, but if so, please make sure to carry along the biliary emergency card as well.
    http://cholangiocarcinoma.org/biliary-emergency-information-card/
    Have fun and enjoy your special time together.
    Hugs,
    Marion

    #81863
    lainy
    Member

    Dear Olga, Good News as I think just being home has its own way of helping anyone as we all know there is no place like home! I think some short road trips sound really nice and just make sure you have everything that Norbert may need along with his ONC phone number just in case.
    You have the right idea in that if it is a short time or a long time ahead of you, live it up as much as he can. Life is for the living!

    #81862
    sadwife
    Member

    Well, Norbert finally got released from the hospital yesterday. I think the therapists were glad to see him go because he was being so difficult. He’s been recovering very nicely from the stroke but still needs 24/7 supervision. Between myself and my sons, we should be able to handle it ok with other family members jumping in occasionally to help when they can.
    In any case, we talked a few days ago and he told me that he did not want to do any more chemo. He was glad the doctors were advising against it. As much as I didn’t want to hear this, I told him I would respect his decision. We also discussed letting the rest of his family and employees know about the cancer. I just want the employees to leave him alone about business and I’m hoping that if they know than they’ll leave him alone, even if he should show up at the office.
    There are some trips that we have been wanting to take and so we have decided to take them soon. They will be road trips that we will just pack up the car and leave with no definite plans or destinations. We’ve been talking about doing it for so long and I think its time. He’s excited about it and we both need something to look forward to.
    Just One Day At A Time!!!
    Olga

    #81861
    darla
    Participant

    Dear Olga,

    I am so sorry for what you and Norbert are going through. Having to deal with the strokes along with the CC just multiples everything. I too think getting the help of hospice may be the answer for the moment. You need all the help and support you can get right now.

    As for how you are feeling, I totally understand. I too, although glad that some are getting treatment and doing well, am sad, angry and probably at one time had some feelings of jealousy that Jim was not one of those lucky ones. He was too weak for any treatment and died before even coming home to hospice. What you are feeling is normal for what you are having to all deal with right now.

    I have seen a lot of things change in the 6 years since I lost Jim to CC and I have seen a lot of changes in treatment and more awareness of this disease. Everyone is different and you have to believe that there is help & hope out there. Try not to worry about the future. I am proof that you will be OK no matter what happens. Just try to stay strong and deal with things as they come, one day at a time. I know it is somewhat of a cliché, but God truly does not give us more than we are strong enough to handle. Some days it just seems that he has more faith in us than we do. You will get through this and you will be OK. Know that we are all here to help and support you in any way that we can.

    Love & Hugs,
    Darla

    #81860
    lainy
    Member

    Dear Olga and Norbert, my own brain tells me that Norbert definitely should have Hospice. It does not mean the end but you cannot do this alone. I do have something for you for the hiccups. After Teddy’s Whipple he hiccupped for 3 months and NOTHING worked. Then we ran in to a Pharmacist friend who suggested Brioske (sp?) It looks like ALka Seltzer in a blue container and you can get it over the counter at CVS or Walgreens. He took it 2 times and lo and behold no more hiccups. The hiccups really drain the patient big time. I mentioned it to someone from the UK and they had an Uncle in the US FeD Ex some to them as they don’t have it in Europe. She said it worked like a charm. I believe Teddy also used it for upset stomach. As for you having the strength to get through this I look at that this way …Teddy was such a rock for me, the least I could do was to be strong for him. You never know how strong you are until “strong” is the only choice you have!

    #81859
    sadwife
    Member

    Well, here we are…..3 weeks minus 48 hours……and Norbert is still in the hospital. They’re talking about releasing him on July 24th. Not soon enough for Norbert.

    I’ve done a lot of reading on this site in the last 3 weeks. The stories both heartbreaking and joyous. I feel like I have gotten to know many of you over the last few weeks. As if for the the first time since coming to the site, I was listening instead of talking.
    I’m so jealous of those of you that are able to go on for years or find it early. Not that I’m not happy for you, but I’m still jealous just the same……if that makes sense.

    Lainey, I think it was you that had a desmoid tumor…..I also had a desmoid tumor removed from my side about 8 years ago at Mayo, MN. Followed by radiation. I never gave it a second thought after getting it done, until now. It was because of my experience at the Mayo that I wanted Norbert to go there. And in the end I felt cheated because of the way they wrote him off. I get angry when I read stories from many of you how the Mayo helped you….yet they did nothing but send us home empty handed with no hope.

    Funny how when something like this happens all of a sudden we’re not invincible anymore. It no longer is something that only happens to someone else.

    I liked the idea of someone suggesting years ago a way to search everyone here…..kind of a searchable database. I tried finding others in our shoes here in Michigan. Couldn’t seem to figure out a
    good way to do it.

    Anyway, Norbert got transferred to inpatient rehab last week. He does OK when he doesn’t feel that the therapists are talking to him like a 4 yr old or that they’re giving him “stupid kid” games. Unfortunately, he had multiple strokes to the right side of the brain that left his left side weak. He also ignores looking to the left so he bumps into things and is not always steady on his feet. So, of course, the therapists are trying to make him acknowledge his left side. He just doesn’t like the way they’re going about it and doesn’t always cooperate. This is so disheartening to me and I try to explain it to him. He seems to understand, but he’s angry and takes it out on the therapists for trying to do their job. Not sure how to handle this.
    The Dr’s have told me the stroke was caused because he has cancer. They said when a person has cancer they are more prone to having strokes because of the cancer. Has anyone ever heard this before? Norbert was on blood thinners for years and still had a stroke, which makes me very scared.

    Before he got here, he was taking zofran for nausea from chemo. Oddly enough, he didn’t have nausea or vomiting during chemo. It started after the stroke and has had it ever since. It makes it hard for him to eat. He also keeps running low grade fevers that they can’t find any cause for. In reading through this site, I remember reading that a lot of CC patients run unexplained fevers, so I’m guessing that I shouldn’t be too concerned with it. As far as the nausea and vomiting, I don’t know if this is cancer or stroke related. Hiccups are another one that he gets so often and sometimes leads to vomiting.
    Going home will be a challenge we hadn’t thought of until yesterday. I thought being hit with CC was a big blow but I never thought about the impact the stroke was going to have on the entire family. When we get home, Norbert will need 24/7 supervision. It will be mostly myself with our sons helping out when they can. Just when I thought things couldn’t get worse, they do.

    So, Norbert has had an internist, a cardiologist, a neurologist and an oncologist seeing him here while he’s been here. Two of the four Dr’s have mentioned hospice to me. I understand and appreciate the oncologist for telling me he wouldn’t recommend chemo to a patient who barely has the strength to get out of bed, but how do we know that he won’t recover quickly and regain much of his strength? And how do we know that he won’t want to continue with the chemo? Maybe its just me, hoping and wanting him to be here by my side for years to come. But as I mentioned before, I would respect whatever decision he makes, no matter how heartbreaking. He’s always been my rock and I can’t imagine being without him. Although, I know deep down that everything will be OK.
    Just one day at a time…..that’s all I can handle right now.
    Olga

Viewing 15 posts - 31 through 45 (of 81 total)
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