Talking Frankly about Living with Advanced Cancer

There are no words that can console someone who is dying. There is no way to "make it easier." I find hugs, shared tears, and just holding the person gives validity to that person's feelings. Each person must come to terms with death in the way that fits his/her belief systems. I find that we, who share the same angst, can provide something that others cannot. We who are still living suffer from PTSD. It is not easy living with an internal bomb. There is also a unique combination of survivor's guilt and fear of our own mortality. There is a hidden hope that "I will be the one who survives."

Yes the guilt I have that. The one time I tried to express how guilty I felt being alive my friend just slammed me down, thought that was nonsense. But it does seem that some people do expect me to be dead already, so I feel guilty I am disappointing them ????? No it is not that bad but as others die I do feel why not me? sometimes more survivors guilt than others. I made a friend at CTCA and we were sisters almost ! I loved that girl. We made Christmas treats together in our hotel (until I was rushed to the hospital) but after we went home we would talk on the phone constantly until her cousin called to tell me she had died she tried to call me before they put her on the respirator. I still feel guilt about her death I am already supposed to be dead ( several times ) but God always pulls me back and that leaves me with another question.... Why? what is his plan for me that I am still here when so many I have cared for are gone.
I am not yet 60 and I have buried both parents (15-20yrs. ago) two brothers and a sister and friends and the worst blow of all ,from which I will never heal, my daughter. I would give my life anyday to have her back.

it is 4 am I should try to lay down for a while again.

a quick funny....has anyone else had this happen? I was going into the grocery store when I bumped into an old friend I hadn't seen in a year or so..........the look on her face ...priceless.....she even started saying the words "you're supposed to be dead" but caughgt herself part way thru !!!!!! I just laughed and said I must look worse than I thought LOL

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!

@testlady

I was touched by your descriptive words, "not easy living with an internal bomb" and "unique combination of survivor’s guilt and fear of our own mortality" all so true.

Teresa

Hello Allison @allisonsnow,

Since I have been a part of Mayo Connect I have always been touched by your posts because they are open, honest as well as hopeful.

I have a friend who has metastasized breast cancer (a fairly recent diagnosis) who had someone say the same thing to her (about the fact that they thought she had died) she was shocked to say the least.

Don't we all wish we could teach the world how to relate to those of who face our mortality on a regular basis?

Teresa

PS I will pray for you as you face your upcoming appointments.

I am sorry to hear of your loss Scott. You sound so strong and centered, someone gave me a plaque "we are as strong as we need to be". using that logic I am a champion weight lifter ! lol I have a sister that set up a meeting with one other sister and we had a fun weekend but during that weekend she said "this could be the last time we are all together" which was true but I didn't know when we said goodbye that it was GOOD-BYE . I only hear from her once since that weekend (3yrs ago) and that was about a month after my daughter died and she told me "I should be over it by now".
As we know you never get over it.

Why are people that way? I don't know......but I suspect fear. Fear they will say the wrong thing. they get scared when they get so close to death so they back away. and then there is the fact many of us (me) build a shell around ourselves and we appear fine, strong even So there is no need for them to offer comfort
and last They don't want to remind us of our loved one !!! WHAT???? We will never forget...I think of her first thing when I get up and still I will turn on her phone to hear her voice....I don't want to forget.

My biggest fear is what will happen to the people I leave behind . I try to find peace thru God
I also have Fantastic friends I can talk to about most things.
I tell myself to get over it !! I am not that important..... life will go on ...LOL
hope to see more of your posts !
Thank You for the support !!!!!!!!

Thank you @allisonsnow I love your quote! Thanks for sharing it! My favorite is "Courage does not always roar. Often times it is simply a quiet whisper at the end of a day saying 'I will try again tomorrow'".

I agree how folks respond to those with a disease or their caregivers and/or survivors is a true mystery. I agree with you they are often responding to their own fears. Some, I believe, simply lack any empathy to actually care about anyone outside of themselves. Many are unwilling to leave their 'comfort zone' and find ignoring the situation is more comfortable to themselves so in spite of how comforting it might be to others, they stay within themselves and clam up. Personally I'd rather hear any type of clumsy words than simple silence.

I'll bore you with a story about how my wife addressed this issue in her final days after she had, lovingly, made all our estate matters final.

One day she asked me to get a pencil and paper. I did and she proceeded to outline exactly what she wanted in her "Celebration of Life" rather than a funeral. She picked her favorite songs (mostly rock and roll); picked the three people she wanted to ask to give her eulogies (our son, our daughter, and her brother) saying "Scott no matter what you will talk too long for folks -- so I am instructing you to just sit and listen!"; the minister she wanted (a rather idiosyncratic cousin of mine); location (our home); that folks needed to not wear black, but something of their favorite color (she was an interior designer and I wore a purple suit); what food to serve and which wine to offer; and where she wanted her ashes spread (five beaches, which were each very important to her in her life).

After I had dialed the phone for her to ask each of the eulogists if they would speak, she asked me to get a second piece of paper. She said "Honey, now I am going to give you the list of people to invite to my Celebration." I said "uh I don't think this is exactly the kind of thing one send invitations out for only to certain folks." She smiled at me and said (sorry for the language, but she got a bit salty in her last weeks) "Listen to me good. It is my Celebration and I do not want anyone who didn't give a sh*t about me when I was alive, standing in our home blowing smoke up your a*s telling you how much they cared about me after I am dead."

I did as I was told!

Not a week after her celebration one of my sisters, who had ignored us for all 14 years, emailed me a scathing note about not being invited. Why was she angry? In her own words "I wanted to be there to show everyone how much I cared."

Once again my wife proved she was far more perceptive and wiser than me!

Strength, courage, & peace!

Thank you, I just use my ability to have been in certain situations in my past. I have had 33 surgeries to gain knowledge from. It has not been fun at all, but I did learn a few things to pass on.Now I have a Lung cancer that I cannot survive from. This has put me in a very low place. Sometimes the words just come, when reading some of the stories. Nancy @shortshot80

@shortshot80

I'm so glad that you are part of this discussion group, Nancy. Your words flow beautifully in response to the needs of others!

Teresa

@allisonsnow Thanks for sharing these thoughts. I have that feeling of survivors guilt all the time. I have had many friends get diagnosed with some type of cancer and they go very quickly. At times I feel so guilty that I am hanging on and have been given time to "live with the disease". Here I am 10 years plus living after my first diagnosis and 4 years after being diagnosed with metastasis. My cancer (Adenoid Cystic Carcinoma) is rare with so there is no systemic treatment other than surgical recession and maybe radiation. It tends to grow slow but is relentless. I have had 4 major surgeries including a partial lung removed. I run into people all the time who say "you look so great". If only they knew some of the pain I have to endure to get through a day. Most of the time I do great and I live each day doing what I want to do. I live by a simple saying I came up with years ago and I tell this to people all the time. "I am probably going to die from cancer but it ain't gonna kill me". The feelings of survivors guilt comes and go's and I tend to deal with it with a lot of prayer and some soul searching as to why God has given me this gift of life. I say keep on truckin until it's over.