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Diagnosed with Stage 4 pNET: What should I know?
Neuroendocrine Tumors (NETs) | Last Active: Sep 21, 2023 | Replies (36)Comment receiving replies
Honestly,
Im not sure. He feels like he wont be here next yr or even in a few months. I have been thru so many things myself that I am strong and never feared anything until now. I know he was more than likely going to pass before me due to the large age difference but THIS way is not what I barganed for. I have been married to him for all of my adult life having married him at 16 and we have a 32 yrs old son and have been married 37 yrs "working on 38" as he says.
I dont know how to be strong enough for both of us so I am strong in front of him and everyone else but break down in my own space.
He is now worried because we dont have burial plots which I had urged for YEARS and now with limited income it will be difficult at best.
He does not want to go into hospice for end of life and has chosen to have them come here. I just dont know when the right time to call them in is. I know its not just for the very end but he has to be on board and understand what they are here for.
I have just finally had the deck and wheelchair ramp installed and stained in preparation for his continued weakness and make it easier for him to get into our home.
I take solace in the fact that he believes in God. He was raised Catholic and does not want to be cremated but actually talked about it to "give me more money" because I have a small life insurance policy on him to cover final expenses. I wouldnt hear of it because I KNEW he didnt want it and told him NO because we planned to be buried side by side always.
He is truly the only man I have ever loved and I knew he was the one at a very early age. Now just turning 54 I have no intention of trying to move forward with someone new.
I know it sounds crazy but I just cant imagine anyone BUT him sharing my life.
Replies to "Honestly, Im not sure. He feels like he wont be here next yr or even in..."
Talkativeinfl, first of all, I’m so very sorry to hear about your husband’s situation and your struggles with it. While I have not been in your situation I am a 5 year survivor of NETS (started in the small intestine but wasn’t discovered until 2018 when I had a blockage and I’d been sick since 2007). And I was a therapist for 34 years. This situation you’re in is very challenging. Getting some support for you is very important. Colleen is so right is suggesting you connect with the Caregiver link on Mayo Connect. Also, cancer centers and hospitals usually have in-person support groups. They also have patient navigators and/or medical social workers there to help not only the patient but the family too. And where is your son in all this? Can he be a support for you and your husband? You said your husband is Catholic so is there a priest he would feel comfortable talking to?
I would encourage you to consider finding a grief counselor for yourself. I have a close friend (herself a therapist) who sees a grief counselor twice a month, not because her husband has passed away but because he has dementia and there are multiple challenges dealing with that.
Lastly, while every case is different, these tumors are normally slow growing and while still considered “rare”, they are becoming more common, possibly due to more advanced ways of identifying them which leads to more research on ways to treat them. When I was finally diagnosed in March 2018, I was told it was Stage 4 as I have several small tumors scattered throughout my body (a larger one in my stomach) and here I am over 5 years later, turning 74 soon, and pretty much living a normal life. I have had Lutathera treatment and been on Octreotide shots every 28 days, but so far, so good.
I’m sure you can find help at Mayo in Jacksonville and you’re not far away (I spent my teenage years in Jacksonville). Please take care of yourself. I believe there are answers out there to your questions and concerns. Please check in when you can.
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Catholics are allowed to be cremated, his ashes can be buried in an urn, there re many less expensive options. As far as finances, are you working with a social worker thru your oncologist. I have been told that the Cancer Society has many resources available to help you. There is also financial help from pharmaceutical companies to pay for their drugs.
Palliative Care or Hospice would be worth looking into, especially since you still work and your husband is alone. I was upset that some friends have distanced themselves once I announced my cancer diagnosis, I never asked for any help from anyone. Check into your Senior Citizens organization in your town for any services they may provide such as Meals on Wheels, there are many volunteer services that could may help you. Local churches may have volunteer services. By networking with different organizations, someone may be able to steer you in the right direction. God bless.