daniellemarg
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Dear friends,
Thanks so much again, this site is such a comfort to me. It’s 400am, I am at the hospital and can’t sleep. Mamy of the doctors/social workers are telling us Jim can be discharged, “rehab is possible”, “go home” (very nicely) while the nurses won’t even let him stand to move from the bed to the comode because his heart and respiratory functions are so weak. They are telling me to get home health but I don’t know how I can manage when he can’t even sit up in bed on his own (and he can’t lie flat). As background we have family in Tucson but actually live in Australia. The Mayo team wanted us to go back to Aus but explicitly stated that a commerical flight would kill him and to medievac him (at a cost of 300,000 USD, a cost our insurance won’t bear as it is humanitarian repatriation as opposed to a transfer stemming from a need for urgent medical care). i don’t think i can ask our family (my family, his inlaws) to completely remodel their house (i.e. wheel chair lifts).I don’t know what to do. He is so sick. He doesn’t understand (and neither do the family or myself…) whether he is dying or just had a horrible setback. All of his family from Australia is here now and everyone is looking to me for leadership. Of course I know that CC will eventually take him but I don’t know if this is a few weeks or a few months or longer…He is usually astute to his body’s messages but he is also uncertain.
I think our the only feasible option in the short term is to go to a care facility focused upon rehab as I don’t think I can bring him to a palliative care institution when some doctors are still telling us rehab.
It feels like the storm I wrote about last week has passed. The doctors had told me that he had been going down quickly but now he is doing much better. His blood is normal, infection controlled (gone), his fevers are gone and is heartbeat is much reduced (almost normal). However, he is draining approx 600 from his chest cavity each day (has a lung catheter) and as i said above he is bedridden (and dear God in heaven he has bed sores which hurt me so much my stomach bleed).
I am genuinely happy that so many of you are doing so well and I hope it continues. Nonetheless, it breaks my heart that my husband whose CC was sufficiently “non-progressed” (not sure if that’s a word) to be listed for transplant in March is now to sick for chemo.
My apologies for the long winded vent…my heart is breaking for this beautiful, decent man who is suffering so much.
Danielle
Dear Lisa,
I am praying for shrinkage and to a much lesser degree no change. The drug sounds pretty tolerable and you are strong. You also sound well.
Sending you my prayers for healing and strength,
DanielleI don’t know about other cancer centres but Mayo needed to see him in person. We faxed the Liver Transplant people the report from the American Hospital in Dubai, they read the report and agreed to see him. No phone consult. We organized the payment once we arrived.
Dear Charlene,
I can’t offer any advice because I have not gone through it…yet. The lovely friends on this website have all have offered very sound advice as well as their deep understanding and a genuine empathy.
If I could offer comment, I am not sure why someone might think that you’ve grieved long enough. There is no time limit on grief and if John passed away in Nov I would expect that the pain would still be very raw. Regardless, no one has the right to judge your feelings. I am not in your shoes but I wonder if the comments from your youngest stemmed from his/her pain of seeing you suffer so much and feeling helpless. I don’t know but it’s horrible to see our parents in pain.
Charlene, I am so sad for you and I feel like I can identify with you. You’re not alone. I don’t know how I am going to live without my husband. I am 39 years old and we have a 50 year plan. We’ve had an incredible life together and I don’t want life without him. We’re talking about hospice. The pain is too deep. We’re with the kids (I am the stepmother and his kids are beautiful loving teens!) and having some precious moments in the hospital.
Charlene, you are not alone. I wish that I could say what to do. I can’t. All I can say is keep in touch with us, reach out and love and support from any place or person offering.
Joyce, Darla. I’ve read your posts over these months. You’ve offered so much support.
With love,
DanielleLiz,
you have so many friends. This website is my oasis as you all understand what Jim and I are going through. It’s horrible right now.okay, re : medical literature much is available on internet. go through http://www.ncbi.nlm.nih.gov/ so you can access at the very least the executive summary of various cc studies.
I am VERY glad that your husband is in good health an hope that he stays that way. As Kris noted, new treatments are constantly emerging.
Liz,
I am so sorry. My husband was initially treated in Dubai and then advised to come to USA as his CC was almost invisible and USA offered the only curative option, i.e. transplant. Although he was listed he is no longer eligible due to cc progression.
Mayo, MD Anderson, John Hopkins and Sloan Kettering are supposed to be amongst the best (if not the best!) in the USA. My husband’s cancer is almost identical to yours with respect to diagnosis and current status, although he did not have any surgeries. With this in mind, the USA will not offer a whole lot more than France other than drug trials. The Gemzar/Cisplatin has had some success as you will see on this website. Mayo Phoenix (where we are) is doing some drug trials as well. The USA is doing on ton on liver cancer chemo research. the http://www.clinicaltrials.gov/ website will list all current and past drug trials so you can get a good idea of who is doing what. Most of them are free.
One more thing, the radiation at Mayo was successful on my hubby, stopped the tumor growth but sadly not the metastatic disease. He’s only had one round of chemo (Gemzar only, they usually start with this only) but chemo is off the cards as he is fighting off infection.
I’ve read much of the literature and France is really good.
My warmest wishes to you.
Danielle
My dear friends,
Thank you so much for the continued love and prayers. YES, we did have a better day. Your energy, prayers and angels reached us today. Thank you.
Today, the team drained his ascites (?) and also took 900 ccs from the chest cavity (another pleural effusion). Now…this is a good thing. Last week’s pleural effusion left him intubated and in horrible shape. The infection is under control. Spirits are down but we’re regrouping and gearing up for the next fight.
The ICU team are fantastic: not only do they let me sleep in the room every night, last night no one batted an eye when I slept squashed up in Jim’s bed!!! He slept like a baby with improved breathing and heart function. One of the doctors brought him Hagan Das…family, friends giving us love and support.
I wish all of you a good day tomorrow. I send you strength and peace.
With love,
DanielleI am so, so sorry to hear about the loss of your beautiful wife. 47 is too young.
My husband (45 years old…) is not doing very well and I am sick with fear. I can’t imagine your pain. I am praying for you and Fiona is watching over you, with love.
Danielle
Dear Jamie,
FIGHT!!!!!!!!! As a few of you wrote to me, there is no expiration date stamped on your foot. So many people have lived beyond the prognosis. Do what feels right to you. Jim has 6 doctors see him on any given day and they all say something different. The doctors here have loads of stories of CC patients who have lived far beyond the usual dismal stats (one woman in Las Vegas had a resection 11 years ago and is still going strong…) The chemo regiment can add some years. Be strong as you are. Follow your soul.
I am praying for you, the angels are with you.
Love,
DanielleDear Friends,
Thank you so much from both of us for your love, prayers, thoughts and positive energy!! It warms the heart and provides fuel for healing. We received some more bad news today (lots of complications, bleeding, gushing wounds, more clots and other difficulties) and actually had a bit of a crap day. It’s 930pm and he’s only now returned to the room after a CT scan…Nonetheless, life is still good. Thank God our kids (in Australia right now…) are en route to Phoenix and we are full of hope, peace and feel surrounded by love. It’s good. Deep breath. Peace within and we’ll tackle tomorrow with a vengenance. Watch out cc.
With love and prayers to all of you,
Danielle and Jim
Dear Kris,
Sending you positive vibes and wonderful energy from Phoenix to you, Ms 1%!!!!!
Prayers to you,
DanielleHello and welcome to the site. We all care a lot about each other. As you’ll the people on this site like to know as much info as possible and live far beyond the prognosis. I think it’s a good idea to share with people your struggle. People want to help and I agree with Lisa that now is when you really see who are your real friends and who are the fair weather friends… If I could offer advice it would be to let people help you. It will warm your heart and people genuinely want to help as they can’t make you better but they can make you feel better. It’s really win win.
Strength to you.
Dear friends,
Thanks so much for the response – yes, he is breathing more easily, no longer is intubated and is only on oxygen. he is still on levafed (not good) but the dose is decreasing (v. good). Deb, the ecg came back ok and the cardiologist is “not concerned” – jim doesn’t have ecocarditis (sp.?) but his heart function has decreased as his heart was damaged during the ordeal. he’s just gone in for another procedure, the hole where his gallbladder used to be and one of the liver spots (absess? infection?) is filled with fluid.We’re staying hopeful.
Lisa, don’t be scared. everyone is different and we need to know what’s happening. Unknown weakens and understanding what’s going on medically can empower us to fight it.
Some of the doctors and nurses get teary eyed when they see us. I am so scared but as Marion said infections do clear. He is better today than yesterday so things are looking better, not worse.
Danielle
