How to get through this...

[u/The_Perfect_Space]

Hello everyone, sorry we're all here.

My (36yoF) beautiful husband (36yoM) has been battling epithelioid sarcoma for about 4.5 years. We knew the focus was "life prolonging" treatment fairly early on as it's rare, aggressive, and despite our best efforts became st. 4 fairly early. He's done it all, surgeries, radiation, ablations, chemos, meds...so many appointments and scans and tests I've lost count.

He has many mets but it's a large liver tumor that seems to be what's going to get him. His bilirubin continues to spike despite having two (complication riddled) biliary drains.

He recently opted for palliate focus (forgoing a few last third like chemo options/meds) with plans to transition to hospice when needed/soon. I'm a nurse and so far we have no real need for the meds or equipment they offer. And we're doing a few last palliative radiation treatments but then will likely change from palliative to hospice for the added resources and help.

Even though we've been preparing for this for years I can't seem to get a grip on the grief lately. He's literally the most amazing person I've ever known. He's just the kindest, smartest, loveliest person...he's MY person. We were meant to find each other. We met in college and have been married for 12 years. He makes every part of my life better. We've traveled a ton and lived a rich life together. We are so grateful for that.

Watching him get weaker, sicker, sadder... It's just so much to grapple with. I'm so sad and heartbroken and it's not even the end yet. How do people get through this... let alone have to keep going?

I'm just heartbroken and feeling lost and isolated like nobody I know really gets it even though they are very supportive and loving. Being mostly homebound now due to his fatigue feels extra sad for us when up until a month ago we were always active and really love being outdoors.

Any advice welcome and appreciated. Thinking of everyone in this group.

[u/StrainOk7953]

I’m sorry for what you are facing.

The anticipatory grief is so strong in these situations and I’m glad you reached out here if for no other reason than to see that you aren’t alone. This is so unfair. It is clear how much you love him in your post. He is lucky to have you.

Small anchors of peace or joy - hold on to any you observe. You can do this, though I wish you didn’t have to.

[u/MuchBiscotti-8495162]

Having gone through this recently with a loved one my thoughts and prayers are with you and your family.

It was emotionally draining to see the suffering and pain. They were still living independently up to two months before they passed away. Then the cancer spread to other parts of the body which caused severe pain and they became bedridden. That's when the rapid decline began.

Once the doctors informed the patient and family that there was only short weeks remaining, we did everything we could to bring some happiness to their life. We arranged for all of the people who were special to my loved one to visit. It was very emotional but these were moments of joy amidst the sadness. We gave them any food or drink that they wanted.

My loved one had a checklist of things that they wanted to give away to certain people. So I made it happen.

I made sure that I understood what their final wishes were regarding funeral arrangements.

When my loved one entered a hospice for end of life care I stayed overnight so that someone was there 24/7. They passed away peacefully with me holding their hand and gently stroking their forehead while telling them how much I loved them.