Glioblastoma Grade 4: How do handle family conversations, sharing?

Hi, @cjr25 I'm Scott and so very sorry to read of your current journey. Similar to my wife's story other than her tumor was diffusely infused. She was 48 at diagnosis and the following is just from our experience.

While an outgoing woman she made the decision to be very private with her illness. That said, she was very upfront with our adult children (totally open), grandchildren (I'm sick), and only two of our very best friends (one of hers and one of mine). The huge majority of our friends neither asked nor spoke about her illness with her or me.

We did a couple of things ASAP. She signed HIPPA giving our adult children approval to talk with her doctors so they could get the same information I was. Also, this was a huge help in that I was not always the communications hub for them -- and they knew I wasn't sugarcoating anything. Next, while difficult conversations, she and I talked and got all our affairs in order -- wills, marital trust, POAs for legal and medical, final desires, DNR, her desir3 for a celebration, etc. This turned out to be a huge help later on. She also decided to gift certain items to select people, whom she wanted to be able to tell why she loved the item and why she wanted that person to have it.

I also taped this quote up for us: Courage does not always roar. Sometimes courage is the quiet voice at the end of the day that can only manage to whisper "I will try again tomorrow."

Just our experiences...

Strength, Courage, & Peace

Hi Scott, thank you for the response and your story. My thoughts to you and family as well. I appreciate the tips, as some are things we've done with others we need to complete. Again, thanks Scott.

@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?

Thank you for added tags. Yea, the lens has become far more focused, but at times, very blurry on "next", future, life, conversations, etc. I can't say there's been anything/one let go. I've certainly shifted my focus to certain areas and people. To be more present with others with daily simple activities meaning more. We're discussing the "thing to do now" but we've been fortunate with doing and seeing a lot. Whatever it is, will likely be simple things we've always enjoyed.

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.

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.

I found that it was hard and repetitive in keeping everyone up to date with my wife's journey with glioblastoma. We resolved it by creating a WhatsApp group so that everyone had the same message (including her voice messages) at the same time. It also meant that people could also share their messages, not only with ourselves but with others.
The number of people who on the group numbered between 80 and 90 (her contact list was enormous!) and, even after her passing in December last year, it still numbers over 80 people.
I hope that this suggestion helps.

When my wife had the surgery to remove the brain tumor we notified our children and siblings on both sides of the family. Over the next few days we notified all our close friends and the more distant family members of her condition and future.
Only our daughter and husband live in Bismarck with us and the others are spread from coast to coast so we wanted to eliminate any surprises when future events occur.
My wife gets many phone calls each week from them and plays on line bridge with old friends.

When my husband was sick, I set up several group texts and communicated his progress that way. It worked well and everyone knew how he was doing. I would send a message after each MRI result and when there was a significant change or occurrence in his status. It eliminates phone calls as it becomes difficult to keep verbalizing when things aren't going well. Hope this helps. Kathie

When my husband was diagnosed in November, the communications became too much for me to process with everything going on and with how emotionally/physically exhausted I was. I/we have always had text groups with kids and with my siblings and in laws, which are used frequently for communication about this and many other things.

For everyone else, I set up a separate GMail address and made a distribution list - which is about 85 people. That way, it keeps the email traffic from my main email account and when I/we have time & capacity, we can look through the replies, which are so uplifting. I now send updates much less frequently - only when something changes or a couple of months have gone by and I start to get several individual inquiries. Everyone seems to appreciate the updates and it is much easier for me to manage.