+ Reply
Log in or Register to participate in these discussions
Caring for young adult with advanced disease
Knitter24
11 Posts

My 26-year-old son has been dealing with advanced melanoma for 20 months now, and it seems at every turn, the road gets worse. As a mom watching this, I am struggling. His wife (they had a beautiful wedding 6 months ago) is his primary care giver. We are traveling to see them for 5 days later this week, and this will allow his wife some respite with friends for a few days. I am pulling myself together so I can be as effective as possible when I get there.

An MRI last month revealed Leptomeningeal Disease. I had never heard of this before, but he is still undergoing a targeted therapy treatment, he is getting exceptional care, he is remaining positive and I am trying not to over react. His next scans will be in two weeks, I can’t lose hope, but I struggle when I think about plans for all scenarios.

It will be Thanksgiving weekend, I am grateful for this time with him this week. I am overwhelmed these days with anticipatory grief, but keep reminding myself that this weekend needs to be about giving our best care possible to our son and enjoying this time together.

Any suggestions for caring for a young adult facing late stage cancer?

3 Replies

@Knitter24
Hello

I have been following yours and your son's story and I am sorry to hear of this most recent news. I cannot pretend to know what you are going through, only to see it somewhat through the eyes of my mom with my sister who has a life threatening medical condition. Her feelings of helplessness ( along with mine ) are heartbreaking.

I am glad you will have the opportunity to gather together this weekend for thanksgiving. I would say to follow his lead as far as if, when or how much he wants to talk about it and otherwise enjoy your time together making memories.

I wanted to share a resource to have in your back pocket for down the road should you need it. I saw you mention that your son has worked with a palliative team already so perhaps some of this has already been provided. Under topics there is a section on caregiving that might provide some ideas and ways to navigate through your visit.

Canadian Virtual Hospice

I am sure you will hear from other members as well but I wanted to share that and also to wish you and your family a weekend of connection and as you said, enjoying your time together.

Hugs

Lianne

DeeBee31
24 Posts

@Knitter24
I don’t have advice as I’ve not gone through this, I’m going through stage 4 lung cancer with my mom.
but I have two sons, and my heart goes out to you.
I DO Understand the anticipatory grief, though. It’s hard, because you want to focus on what time you DO have left. Hugs to you and your family, I hope the thanksgiving you had will bring some nice memories. ❤️

@Knitter24

Hello - just stopping in say hi and I'm thinking of you. How did your Thanksgiving go, if you are comfortable sharing.

Lianne

+ Reply