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Glioblastoma Grade 4: How do handle family conversations, sharing?
Brain Tumor | Last Active: Oct 5, 2023 | Replies (28)Comment receiving replies
@cjr25, I hope you don't mind, but I expanded the title of the discussion you started here because I think you ask some great questions. You said "...but I struggle with this and future. Wondering how others experience went, any advice, family conversations, sharing with friends/work and coping ideas?"
I'm tagging fellow members like @katehedderich @msddsq @suez5 @mepowers @nauden @boilerbob @okjanetp who have experience staring glioblastoma in the face and deciding how to tell others, how much and when to share what and planning.
CJR, a diagnosis of stage 4 sure clears the "lens on life". Are there things, activities or people you've let go of and things you're more focused on? Are there things that you've been putting off that you're saying let's do this now?
Replies to "@cjr25, I hope you don't mind, but I expanded the title of the discussion you started..."
I didn’t let go of people or anything major. I did call all the friends I’d lost touch with to reconnect. I also started visiting those friends. Luckily my husband travels a lot for work so we have lots of miles for me to use to take those trips. I’ve also got a long bucket list of things I want to do. I hope to start those trips (like the British Isles and Europe.) also, I love the beach so I’ve made it a priority to make sure I get there at least once a year. I also practice mindfulness as much as I can.
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That is a very big question. When I was diagnosed, I set up a CaringBridge site that allowed me to share my journey with family and friends, and took away the work of trying to tell the same story over and over again. People have appreciated the updates, and I have appreciated all of the love and support.
We also made it a priority to get our affairs in order, including updated healthcare directive, will, trust etc.
Palliative care and social worker at mail have been very helpful in assisting us on things they recommend we do. We have an appointment with an aging in place specialist next week to determine what modifications need to be made to our home for wheelchair access should it become necessary.
And we’re also making travel plans not to see things, but to spend time with people that matter to us.
Two books that were recommended to me that have been helpful. Are Radical Remission and Radical Hope written by Kelly Turner. Im choosing to focus on life not my diagnosis or prognosis. I hope sharing this helps you on your journey.