Talking Frankly about Living with Advanced Cancer

Krishh, what a wonderful way to express your feelings. I too believe there is a plan for us all. Some plans better that others deciding on how we live our lives. I am 84 and have two kinds of lung cancer that was found 1 1/2 years ago. First not able to believe something so bad that can't be cured. I have mesothelioma in my left lung. Not curable! So just have to live the best I can till I'm called. (shortshot80)

Thank you for the kind words, @kateia They mean a lot to me!

One positive thing coming out of my years of caregiving was my shoulders broadened, my listening skills improved, and I learned to not wait to reach out to anyone I knew who was struggling, especially when it is with a chronic illness.

I have often pondered the trait of empathy, wondering if it is a nature or nurture thing. I am beginning to believe it is more nature. I had two sisters. We grew up in the same home, same place, same folks. Our mom was very empathetic and being as it was the 1950s she was our role model as Dad was the typical '50s working dad. I have yet to find an empathetic bone in their bodies, while I do. I see hints of this in some friends too. Some of them will make mention of how I go out of my way to maintain a friendship, tell me they are very appreciative of it, but then often end with 'but I couldn't do what you do to keep our friendship going.' More and more I am heading to 'nature' as the source. It just seems to be there in some and not in others. Thankfully both our children got the 'gene', but with the awesome Mom they had I am not surprised! She cared about others to her final day! Sorry for the ramble, it is just something I think about often and your post reignited it in me a bit! Thank you for that too!

I will be here -- and keep on keeping on for sure! To me it is the best part of Connect 🙂

Courage, strength, & peace to all!

Sending you a great big hug!!!! You have been so supporting of everyone who is struggling. I have a friend who has stage 4 ovarian cancer and is not doing well right now. We have kept in contact by e-mail and plans are to visit her when her energy is up. It amazes me when people say that family deserts them when in crisis. Cancer doesn't change the person!! My friend is the same friend that I've had for over 40 years!! Even her appearance hasn't changed that much. She has helped me in my struggles more than I have helped her with hers!! Her faith in God has sustained her through this two year battle. She is a wonderful person and a dear friend!! Scott, keep on doing what you're doing!! You handle situations with great understanding and we know that we can lean on you for support at any time!!!

I can appreciate how you are feeling @dakotapat - I have much of the same feelings. We are all going to die, it is the when and the how we have to stare in the face. Can't do much about the when, but we can the how - do we want to be gracious and accepting of God's will, or do we go down angry? Not that we're happy with our fate, but I believe in a grander plan that I am not necessarily supposed to understand right now. Jesus walked this walk, and I choose to have faith and have him walk with me through my walk. Take care everyone ~

@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.

@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

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

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!

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 !!!!!!!!

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.