Share this:

Talking Frankly about Living with Advanced Cancer

Posted by @colleenyoung, Sep 1, 2017

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.

REPLY

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’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

I remember reading “a cancer diagnosis is a reminder of our mortality” in the book But You Look So Good – Stories by Carcinoid Cancer Survivors and for me no statement is more true.

I no longer work, but I would if I could. Managing my many health issues, along with helping my spouse to manage his, is just as time consuming as a full-time job. Along with cancer, I have heart disease and the probability of a stroke looming in the background. So, I’m dealing with three health issues whereas most people would be intimidated with one of the three.

On the physical level I keep all my appointments, never miss a test or treatment and search for ways that others handle these conditions. On a mental level I tell myself that things could be worse (true). I still have long-time friends in my life, some as far back at 60 years that I keep current with. I have amazing new friends that I also treasure and spend time with them when I can. My family, though small, is an important factor and knowing they are there keeps me upbeat and positive.

Staying optimistic, looking at the glass as half-full, avoiding stress, helping others, scrapbooking, support group, reminiscing over pleasant memories, and praying – these things help me to cope with advanced cancer and my other health issues.

Mary

Six years and counting! I walk around with a smile and a positive attitude only to know that the true me is encircled by a fog that will not lift. I see a psychologist weekly, but it does not lift the fog of inevitability. I am afraid.

Hello @testlady

I see that this is your first post on Mayo Connect. Welcome and thank you for so honestly describing your feelings. Your phrase, “the fog of inevitability,” so aptly describes what so many of us feel at one time or another. Especially after a test finds a new source of cancer, and we find ourselves facing another surgery or another round of treatment.

Please continue to share your journey with us as you feel comfortable doing so. We would like to get to know you better, and also may I offer my congratulations on your “six years and counting.”

Teresa

@testlady

Six years and counting! I walk around with a smile and a positive attitude only to know that the true me is encircled by a fog that will not lift. I see a psychologist weekly, but it does not lift the fog of inevitability. I am afraid.

Jump to this post

testlady, I understand your feeling too, In 2015 I was coughing a whole lot, went to the emt and he took a xray, said I had Pneumonia, primary care doc wanted a cat scan. Which showed fluid in my left lung. So had to have that drained October 27.2015, again in november. My heart doc said to get a lung doc, which id did who sent me to a lung sureogon (sp) can’t spell tonight! Anyway Jan 22,16 I had lung surgery. Doc put a 2inch 4 foot long in my lung to drain. Couple days later told me I had two kinds of lung cancer. One pplain ole lung cancer the other is Mesothelioma. This is from Asbestosis that my husband worked with while mixing plaster for plasters from 1955 to 1983. Nothing can be done with this. I have the blank thinking at times, perhaps this is the fog you talk about. One of the things I have done is attend church Sundays & Wednesday evenings. This is prayers for me and I can talk to the group. Witch eases the fog some. Talk to someone besides your psychologist. Other people without a “degree” does and will help. Best of prayers for you! (shortshot80) Nancy

@testlady

Six years and counting! I walk around with a smile and a positive attitude only to know that the true me is encircled by a fog that will not lift. I see a psychologist weekly, but it does not lift the fog of inevitability. I am afraid.

Jump to this post

Thank you Nancy. I can feel your kindness through your words.

@testlady

Six years and counting! I walk around with a smile and a positive attitude only to know that the true me is encircled by a fog that will not lift. I see a psychologist weekly, but it does not lift the fog of inevitability. I am afraid.

Jump to this post

Hello Nancy @shortshot80

I agree with @testlady, you have articulated a wonderful attitude and taught us some coping skills for dealing with cancer. Talking with others was a great suggestion.

Teresa

@testlady

Six years and counting! I walk around with a smile and a positive attitude only to know that the true me is encircled by a fog that will not lift. I see a psychologist weekly, but it does not lift the fog of inevitability. I am afraid.

Jump to this post

By the way I am 84, will be married 67 years in October (21) and my husband has his own set of probllems. He will be 90 In Oct 27. He has a full time catheter which is changed monthly. He has asbestosis and is on oxygen 3/4 of the time. With our age to fight along with our problems we still go out to play bingo at the nearest casino. We talk to others there too. Bob also has a walker. So the “fog” is there too for him. Life is meant to “live”. Don’t lose yourself in your problems, voice yourself here, you would be surprised on what you can say,and
and hear/read so try to voice your fears here. Don’t allow them to kill you sooner than what is meant to be!. Shortshot80} Nancy

@colleenyoung

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.

Jump to this post

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

@colleenyoung

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.

Jump to this post

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.”

@colleenyoung

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.

Jump to this post

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

@colleenyoung

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.

Jump to this post

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!

@colleenyoung

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.

Jump to this post

@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

@colleenyoung

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.

Jump to this post

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.

Liked by vsinn2000

Please login or register to post a reply.