Talking Frankly about Living with Advanced Cancer

I'm so sorry for your loss... here you are ...supporting other through it. You are an "Earth Angel" Thank you for being here for others.

Hi @allisonsnow I am Scott and my wife, who was diagnosed with brain cancer, fought it for 14 years. We spoke about her fight often, but I always tried to take my cue from her as to how deep she wanted to discuss it. However a spouse or loved one is a bit different I realize.

The vast majority of our friends and her family ghosted on her when she was diagnosed. Friends of over 40 years disappeared and family refused to write, call, email, or visit for all 14. It not only changed my wife and me, but also forced me out of my comfort zone with others so I now speak up with those fighting this, and other, disease. I most often start by 'asking permission' by saying something like 'I am here and would like to talk with you about anything you'd like, so feel free to ask or reach out to me when you want. I also often follow that with a statement about the fact I know words often fall short, but I want them to know how much I care.

Some folks open up, some do not, but I always feel better for having put my willingness to visit with them out there.

I have also become faster with sending condolences to those I know who experience loss. I try and make my words focus on the person reading the card or letter or listening on the phone or in the chair across from me. Since I know a little bit about what they may be feeling I offer, again, a place for safe listening.

We learned the important thing is to simply reach out. While I don't recall the words folks used when talking with my wife or me I much more remember who it was who never said anything to either of us. I know some folks are just paralyzed by death, grief, illness, etc. A cousin of ours never communicated with my wife died, but she lost a son and I sent her a card. She wrote me back saying thank you and that she had been 'too scared' to write me when my wife died. For lots of folks mortality is just too hard a subject to approach I think.

Good luck with your health issues too!

Strength, peace, & courage!

Hi Miller03, and welcome. I see from your profile that you are living with a very rare gynecological cancer, mesonephric adenocarcinoma (MNA) that has metastasized to your liver and lungs. Were you diagnosed with lymphoma and MNA at the same time or the MNA a recent diagnosis?

Hi Miller03, and welcome. I see from your profile that you are living with a very rare gynecological cancer, mesonephric adenocarcinoma (MNA) that has metastasized to your liver and lungs. Were you diagnosed with lymphoma and MNA at the same time or the MNA a recent diagnosis?

I need and appreciate having this support site.

Hi @allisonsnow @lorinusbaum @shortshot80 @wandering @lizah @oldkarl @laurieann789 @hopeful33250 @tresjur @mollie59 @kenlucier @cjohn and @somefan. It's not easy to find a place where you can have a frank discussion with other people living with advanced cancer. I invite you to do that here.

I just got ct scan of maas on pancreas. Now starts the testing, imaging, who knows what else. Am somewhat in shock at this. Family will give me support. Am preparing for the trials ahead.

Thanks for the invite. How many here have survivors guilt? I am a five year survivor and have struggled with survivors guilty for almost my entire survivorship. My mother-in-law was diagnosed with breast cancer approximately a month after I was. She knew she had it and hid it from us. She died 3 months after diagnosis. My eldest brother died suddenly of exanguination due to undiagnosed Lymphoma that burst an artery in his lungs approximately 17 months after my diagnosis. My mother whom I was living with and caring for at the time because she had end stage COPD gave up living after my brothers death. She had already buried two husbands and now her eldest son and I had stage 4 ovarian cancer. I feel she was determined to go before me or my other brother who has a possible life threatening illness. My sister-in-law who came with my surviving brother for Mom's Memorial Service while visiting became ill. She went home and never got better. Six weeks later she was diagnosed with Glioblastoma and died nine months later. I have such tremendous guilt everytime I hear of another person dying of cancer because I for some reason have been allowed to live and be with my amazing daughter and four beautiful grandchildren. I know in my heart that all who have gone before me are in a better place but I cannot help wonder why I am still here. At times I miss them all so much that I want to be with them.

I'm glad that you posted this discussion, Colleen. As I've had three surgeries for neuroendocrine tumors, a rare form of cancer, I've found myself wanting to look positively at the future, but with a cautious-eye on the reality of three occurrences. While I keep active, and I volunteer, work and maintain friendships, the reality of cancer is always there. I find myself still searching for answers and still trying to live a normal life. It really is a different reality from my life prior to cancer.

I would love to hear from others who are living with this dilemma. How are you balancing the different feelings of optimism and the reality of a cancer diagnosis?

Teresa