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This is a good article - it concerns death, so be warned

Trubrit's picture
Trubrit
Posts: 4759
Joined: Jan 2013

https://www.bbc.com/news/uk-45912254#_=_

I do believe there is a balance between the feelings of the patient, and the feelings of those around us, be it loved ones, or the general public. 

I think it is important for those of us who are patients, to understand how uncomfortable others around us can be, and allow that as part of thier journey as our friends. 

Just my musings. 
tru

Canadian Sandy's picture
Canadian Sandy
Posts: 478
Joined: Jul 2016

I totally agree with you. 

beaumontdave's picture
beaumontdave
Posts: 963
Joined: Aug 2013

A good article and an important subject, my first reaction was "it all depends". Cindy knew what she was up against with her glioma, and I even more as the one who does all the reading. She, one time referred to the fact that she might die, and after that it wasn't talked about, it didn't need to be. I made sure no one gave her some ballpark odds about the end of her life. Our focus was on the the good reports after her first surgery and radiation treatments. They knocked it down, and she was able to live nearly four years unencumbered by anything but occasional testing and maintenance chemo, which she could handle. We did the important trips, enjoyed our families, and ate, drank, and laughed often. The last year was tougher, with the return, but we knew it could/would, so the focus was on the fight, until the final six months, when the simply said there was too much progression, to me. To her I simply said she was coming home for Christmas, and it was nice, her grandkids and children celebrating with us. Patients should have it the way they want it, straight truth or not a negative word, and caretakers should work to make it so, if they can..........................................DAVE

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Thank you for that article Tru. I have been seeking out "end of life care". Not that I am being morbid or ready for Hospice but I just happened to have someone tell me, not knowing that I have terminal cancer that his 19 year old brother was receiving end of life care. He had an unusual disease and lacked emotional maturity to deal with his death that was in possibly a year. It was a light bulb moment for me because I feel that is exactly what I need, to somehow prepare myself and my family for what may happen to me in possibly less than a year. No one knows of course.

However, looking into end of life care, all I have found is hospice for 6 months or less time to live. That is not what I need. I did go to the link but I believe that service is in Britain or definitely outside the US so not sure what I will be able to get from that.

I certainly do feel a dire need for some help in this area because I feel that myself nor my family is dealing with this well at all! It's mostly avoid and deny types of conversations and that is making me nuts! More than I already am and that is saying a lot! LOL. Have to laugh because life and all this is surely crazy!

Well, off I go to delve into that website. If you or anyone has any suggestions I will be happy to hear them. The good news is I now have 2 therapists that I am about to see, have to get two to bridge the gap in lack of mental health care in my silly country.

Hope you are doing well Tru, thanks for your contributions here as always!

Karen

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

It is a good article, thanks for sharing. I'm pretty forward about it, I want my family to know what I want. Before this last surgery I had they weren't sure if I'd make it through the surgery so my husband and I had to have the talk. Later I had the talk with my daughter who didn't want to have to do it. But I have seen some people wince a bit when I say something jokingly about the cancer. People don't know how to act or what to say and, despite losing several loved ones to it including my parents, I still do't know what to say to people, either. So I get it.

And this past week I'm letting it get to me emotionally and am still having bad days. Shoot, I'll snap out of it soon.

Jan

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