How are people with liver mets doing?
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Husband -I’m heartbroken to hear this news. I’m glad her confusion has lifted. You are an incredible partner to your wife.
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@husband11 What a gut punch. I’m sure being surrounded by love is a great comfort to her. I pray that they are able to keep her pain free. You have learned and done all you can, and then some. Now it’s time to hold her hand while she transitions. I wish you both peace.
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Husband11 ‐ I am so very sorry for this horribly sharp turn of events. I can only imagine the frustration of being told first that things are looking good and then that there is no hope within just a few days. A others have said, you have been a great support to your wife (and have generously shared information here). I think being surrounded by those we love at the end is what we all hope for. Peace and strength to you and your family.
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Husband - RK said it best above, this is a moment of transition, from taking care of her health needs to helping her along the final path with dignity, love, and peace. I'm sure you will manage that duty as lovingly and assuredly as you have through her treatment. You and your family will be in my thoughts, but I am so so sorry to read this update.
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Husband I am just so sad for you and your dear wife and I hope that she may now pass in peace and pain free. You have been a wonderful husband.
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Hi @husband11,
We are so sad for this awful news… it's so debilitating and heartbreaking to receive, especially when you received such polar opposite news in the same week. Holding you both in our thoughts. Much love to you both.
Here is a list of grief and bereavement resources that are specific to Canada that may be useful for you to look into:
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Thank you all. Unfortunately we still have another fight on our hands. My wife says she is feeling fantastic, hasn't felt so good in over a year. We went for two long walks. She is enjoying visits with our daughters and grandchildren. The Doctor (who tells us his wife died of breast cancer) wants to withdraw the TPN (IV food) because he says the evidence is that it doesn't extend lives of cancer patients. She can't eat, because of the intestinal blockage. My wife and I are completely against this withdrawal of care, as it presupposes that they know how long it will take the cancer to kill her. We know that without food she will die after a finite amount of time. We don't know the rate of progression of the cancer, that doesn't even show up on scans. I have to fight this. Neither of us want to prolong the process of dying, if she has poor quality of life, but the current state of her quality of life is, in her own words, "fantastic, no cough anymore, sleeping well.". We went for two long walks, nothing she was able to do previously, and no coughing fit. It seems the dexamethasone has treated her biggest problem, the lung ailment. I intend to support her wishes to be kept alive, as long as she has quality of life. The Doctor unfortunately disagrees.
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Husband -I’m so glad your wife is feeling better! I hope you can get a second opinion to help you. Sending best wishes!
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Husband-How absolutely frustrating. Get another doctor who will prescribe the food. Glad you and your wife are having some good days and happy times with family.
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husband,
The doctor wants to end the TPN because it won't extend life. But what about the value of nourishment on energy level and comfort for better quality of life with family……for whatever time is left? What do your wife's end of life documents say about providing comfort measures? I hope you find a caring doctor who will intercede.
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Dear Husband11, we were waiting for these news - you can never write off people. As my psychologist said once - "There have been so many people that walked out of hospice and are still walking streets that we, doctors, not know how to sometimes behave in even most difficult situations". Hugs,
Saulius
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I am angry because she is doing so well now. Third day that we went for a long walk. She even did squats in the hallway. Not out of breath or coughing. They want to write her off as they can see in their crystal ball that she has no future. I am afraid they are creating a self fulfilling prophecy.
I had her sign a directive, stating that she does not consent to the withdrawal of TPN (the IV nutrition) and I gave it to the head nurse, who put it on her chart. The Doc's come every day and tell us to give up. Today her Oncologist will see us, and I'm certain she will say the same thing as she has never been one to offer hope. Frankly, I am disgusted by the attitude of the new generation of Doctors.
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Husband -I’m glad you have been able to advocate for your wife and ensure her wishes are documented. Glad her cough has subsided. Sending best wishes.
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Husband - I sincerely hope that you are able to find a doctor who will respect your wife's wishes. She is so lucky to have you. I'm really rooting for you. I'm happy to hear that your wife is feeling better. Sending lots of love. And seriously, you totally rock as a husband.
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Husband,
What about TPN infusions at home? Raise a conversation about ethical values: beneficence (to do good), non-maleficence (do no harm), autonomy (giving the patient the right to choose). Prayers going up for you and your wife.
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I’m absolutely shocked they could consider that for someone who is cognitive and content.
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Dear Husband11, as we all know, just one drug that works can radically reverse any situation. It is hard to believe they cannot find solutions to someone who does squats. Dang!
Saulius
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Husband, I’m so glad you continue to advocate for your wife. I agree with what everyone has shared. Her wishes should be respected and I’m praying her doctor will support or that or you can get a second opinion that will continue the TPN. Blessings to you both.
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Husband,
I am rooting for you and your wife. I am not familiar with the Canadian system but it seems to me there should be some kind of system where your wife could be discharged home and have someone come and manage the TPN. I am sure I have seen that done for some of our hospice patients and patients who are palliative car but not yet hospice. They set it up with home health when home would be a better environment for them as they do not need hospital level care. I support you in your fight, you have been an amazing support and advocate for your wife.
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@husband11 best wishes for your wife!! I can't think about any other things to say, but try the best to do what she wish for!!
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So far, so good on maintaining the TPN. I contacted patient services, which is effectively the patient ombudsman, and they have contacted the Doctors and staff about our concerns. I also had her sign a health care directive, stating that she does not consent to withdrawal of the TPN and provided it to staff, who put it on her chart. It sounds like they are going to back off, unless they can show it is doing actual harm.
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Husband -That’s great to hear. Glad you were able to get all the paperwork completed, and since she can voice her own opinion right now, you’ve got it all covered. Well done! Hope you both can get some sleep in between her squats. Tell her that she is motivating me to try a couple!
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husband, it is good to hear from you. It is also good to hear that you’ve taken several different steps to make sure your wife’s wishes and your own are known, heard and followed. It’s good to have that all on record so there is no mistaking what you and your wife want. I think knowing there is documentation of the patient’s wishes also helps keep the doctors in check.
I continue to have both you and your wife in my thoughts.
**
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Husband, I am so glad to hear they are backing off and honoring her wishes. She is motivating to me as well. :)
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Don’t believe I’ve posted an update here since September. Continuing IV Taxol+gemcitabine on a 3 week cycle, an MRI last month showed that my liver no longer looks like Swiss cheese! A couple 2.5cm (1”) tumors have shrunk by 30% and some smaller lesions are disappearing. My nuclear bone scan was also unremarkable.
The chest CT will be repeated in a few weeks due to the radiologist’s suggestion of possible radiation recall pneumonitis. With no symptoms such as cough or SOB, we’re not too concerned. In the past, I had lung nodules that required periodic imaging to prove stability. They were probably remnants of bronchitis.
There have been areas of ground glass opacities reported but again, didn’t amount to much. It feels as though I may be able to “coast” through the upcoming holidays however we’re not making any big plans. I do experience a flu-like syndrome within 24 to 48 hours of each infusion. A bit of peripheral neuropathy has not prevented my orchestral violin playing.
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Dear vlnrph, thanks for informing us. And again, another example of efficiency: if drug works, it works! Congratulations,
Saulius
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My wife passed away this morning. Peacefully, in her sleep, with myself and our two daughters holding her hands. She is with our Lord, no more earthly struggles. She put up a great fight and lived many quality years with this disease. We both made many good friends on this forum, whom we shared our struggles and victories with.
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@husband11 My heart breaks for your loss but I am comforted knowing she was surrounded by love and is now our Lord. Condolences.
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Husband, So sorry to hear this news but as you say, she is now pain-free and with our Lord. May God comfort you and your daughters. I pray for the peace that passeth all understanding for you and your daughters during these difficult days. You were a wonderful companion to her as she navigated this journey none of us wanted to take.
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@husband11 All of us are with you, sending love and condolences. We're so sorry for all you and your wife have gone through, but happy she is at peace and out of pain. Sending you, your family, and all who loved her. ❤️
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