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Colleen Young, Connect Director
@colleenyoung

Posts: 3882
Joined: Jul 23, 2014

Talking Frankly about Living with Advanced Cancer

Posted by @colleenyoung, Fri, Sep 1 12:52pm

Are you living with advanced cancer (sometimes referred to as stage 4 or metastatic cancer)? This discussion is a safe space where you can connect with others to talk about the realities of living with limited time. It’s not easy to find people who understand what it is like. For many reasons, you may not feel comfortable talking about your thoughts and emotions with friends or family. Perhaps you are alone. Even if you are surrounded by people who support you, you may experience intense loneliness.

Connect is a place where honest conversation can safely take place. You can speak frankly and be heard without judgement. I invite you to share your reality facing death and living now.

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Colleen Young, Connect Director
@colleenyoung

Posts: 3882
Joined: Jul 23, 2014
Posted by @colleenyoung, Fri, Sep 1 1:08pm

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.


allisonsnow
@allisonsnow

Posts: 64
Joined: Jan 05, 2017
Posted by @allisonsnow, Mon, Sep 4 3:35am

Thanks for the invite to this board Colleen. I have been feeling depressed lately (which is not usual)and talking may be just what I need.
Has anyone else experienced when you have a friend who has a relative dying from cancer and would I please talk to them. I am always more than willing to help but frightened at the same time. What if I say the wrong thing ? people comment all the time that I seem to have it all together and I have such a great attitude, sometimes that is true the rest of the time it is the mask ( and I KNOW you know what I am talking about). It is a lot of responsibility. It is also difficult because it stirs up all those feelings I keep at bay. These conversations are always different but always filled with tears and laughter and longing and God.
But if anyone else has had to do this , how do you feel afterwards? How do you deal with your own feelings?

I have so much more to say but that is another topic.
I have my scans this week and see my oncologist (always nerve wracking)
I see my gyn doc “watching” a problem
I see my pulminologist next week and from my breathing I feel the news will not be good

P.S. this is the 2nd person from this family I will have had the “death/Life” talk with
a reminder we need to thankful for our blessings


testlady
@testlady

Posts: 3
Joined: Jan 05, 2017
Posted by @testlady, Mon, Sep 4 4:25am

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.”


allisonsnow
@allisonsnow

Posts: 64
Joined: Jan 05, 2017
Posted by @allisonsnow, Mon, Sep 4 4:54am

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


Scott, Volunteer Mentor
@IndianaScott

Posts: 381
Joined: Oct 22, 2015
Posted by @IndianaScott, Mon, Sep 4 6:50am

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!


Teresa, Volunteer Mentor
@hopeful33250

Posts: 2660
Joined: Mar 28, 2016
Posted by @hopeful33250, Mon, Sep 4 7:34am

@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


Teresa, Volunteer Mentor
@hopeful33250

Posts: 2660
Joined: Mar 28, 2016
Posted by @hopeful33250, Mon, Sep 4 7:42am

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.


allisonsnow
@allisonsnow

Posts: 64
Joined: Jan 05, 2017
Posted by @allisonsnow, Mon, Sep 4 12:09pm

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 !!!!!!!!


Scott, Volunteer Mentor
@IndianaScott

Posts: 381
Joined: Oct 22, 2015
Posted by @IndianaScott, Mon, Sep 4 4:41pm

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!


dakotapat
@dakotapat

Posts: 3
Joined: Feb 11, 2017
Posted by @dakotapat, Sat, Sep 16 1:33pm

@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.


krishh
@krishh

Posts: 9
Joined: Apr 07, 2016
Posted by @krishh, Sun, Sep 17 11:42am

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 ~


kateia
@kateia

Posts: 35
Joined: Sep 15, 2016
Posted by @kateia, Mon, Sep 18 7:30am

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!!!


Scott, Volunteer Mentor
@IndianaScott

Posts: 381
Joined: Oct 22, 2015
Posted by @IndianaScott, Mon, Sep 18 9:10am

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!


shortshot80
@shortshot80

Posts: 109
Joined: Aug 16, 2016
Posted by @shortshot80, Mon, Sep 18 1:13pm

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)


Teresa, Volunteer Mentor
@hopeful33250

Posts: 2660
Joined: Mar 28, 2016
Posted by @hopeful33250, Tue, Sep 19 7:46am

Hello Allison, @allisonsnow

I’ve been thinking about you. I know that earlier this month you had a number of tests and appointments. How are you doing?

Teresa

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