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@hopeful33250

Hello @talkativeinfl and welcome to the NET discussion group on Mayo Connect. I hope that you are getting some answers to regarding your husband's treatment plan. I can understand that this is a difficult place for you both.

On Connect, we have a discussion group specifically for caregivers. I would encourage you to look at that support group and read the posts from other caregivers and feel free to post your own concerns. As you still work full-time, it might be helpful for you to share. Here is the link to the Caregivers' Support Group,
https://connect.mayoclinic.org/group/caregivers/
@IndianaScott is a mentor of this group and was a caregiver for this wife. As you read his posts, I'm sure you will be able to understand the difficulties that caregivers face as they travel this unchartered territory.
What are your most pressing concerns right now, @talkativeinfl?

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Replies to "Hello @talkativeinfl and welcome to the NET discussion group on Mayo Connect. I hope that you..."

I feel like he has just given up. He has constant diareaha that only slows down with 2 prescription antidiareahal meds and is weak and tired often. He seems to be wanting to get his affairs in order and tells me that he wont be here for much longer. He says he can feel it. I just feel hopeless and cant help but think if ONLY they had discovered this cancer in 2014 it would have been a game changer. However because it IS so rare, apparently they did not test for it. By the time he lost a lot of weight for no reason and I browbeat him to go to the GI doc they found a tumor in his colon but that was not cancer. However when the surgeon noticed some abnormal spots on his abdominal wall and that his liver had an odd look to it, he did a biopsy and ran ALL the cancer tests. HE immediately sent us to the oncologist. I assume IF it HAD been found in 2014 they would have done the same. Im just wondering what to expect with enstage since its totally different then any of the cancers family members have passed from. I notice he has become altered at times even argumentative but then he is fine again. His appetite is good as long as I am here but I can not be sure he is eating when I am at work. I have been told to call hospice and get them in place now but Im not sure that is the right move at this point since he IS still being treated. He is now worried about affording a final resting place and being "ready" so I wont have to worry. Too late. I know I shouldnt pre-grieve as someone put it but I see the deteriation from a yr ago from the robust 258lb happy man I was married to to a man who now weighs 160 and is often tired and quiet or dozing in his chair. It breaks my heart for what was and what could have been. I want to scream, I want to make heads roll for the injustice of not finding it sooner but MORE than anything I want to give him all I can to put him at peace and let him know I will be ok. He wanted to rent a convertable for a few days since I made a point to take time off to spend with him next month but after pricing it, its simply not in my budget. As you know, this cancer treatment can be extremely costly depending on insurance and I had insurance that my copay was 1800 a month until I switched. Now there is some help with lower costs but it definately hit my credit cards because they had to have so much up front. Couple with that that I was without any pay for 2 months before my boss decided he needed me to work as a supervisor while I continue to fight Workers comp for a back injury before I can be treated. I dont let my husband know just how bad my back is because he will insist on my going out of pocket. I dont want to worry him about me or our situation so I quietly carry the burden. I honestly feel like a island unto myself. My friends dont stay in contact now that he is sick and the support/help group I joined only serves the jacksonville area not St. Augustine area, so the things that made him happy like gift cards, honey baked hams and other sponsor donated things I am told I am not eligible for so I no longer get the newsletter for whats available. Its like I dont belong anywhere. Those little things helped as a pick me up for BOTH of us. Sorry to vent but I guess I just needed an outlet and some answers.