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Talking Frankly about Living with Advanced Cancer

Posted by Colleen Young, Connect Director @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.

Interested in more discussions like this? Go to the Cancer Support Group.

kathleenkin | @kathleenkin | Dec 13, 2019
In reply to @IndianaScott "Hello @leannn Your post really hit home with me. My wife waged her war with brain..." + (show)
@IndianaScott

Hello @leannn Your post really hit home with me. My wife waged her war with brain cancer for over 14 years and we were married for 41. She was diagnosed at age 48 and passed away in July 2016. Her adult children, grandchildren, friends, and I continue to work through our grief journeys -- each in our own manner. She has not, nor ever will be, forgotten by those close to her in life since we continue to be close to her now.

During her illness we found no one really wanted to talk about her mortality. When they would ask 'how are you doing' all they wanted to hear was 'fine'. We had to be satisfied with having those deep discussions with only a very few. In our case it was the two of us, our two adult children, her bff and my bff.

My wife continues to be a part of my daily thoughts, she is a constant component of our conversations within our family, her bff and I have picked up the friendship she had with my wife and continue as friends, etc.

Yes, we do have those folks who do not want to ever mention that I am a widower or lost my wife. We have a couple, who knew my wife and I for longer than we were married, who have never acknowledged she is gone. Likewise I have siblings who constantly remind me 'it's time to get on with life', but they were also never in our lives during my wife's illness so it is no surprise. Some folks just cannot handle it. On the other hand this past week I was at a business meeting where I saw a former boss from many years ago and her first comment to me was 'how are you getting along? I really miss your wife when you visit!' So sometimes we just never know our lasting impact on others.

Strength, courage, and peace!

PS I admire your husband for being able to watch those movies! My emotions are still in such turmoil that I can't watch much of anything emotional without becoming a sobbing mess -- especially for some reason ANY Disney movie 🙂

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People are afraid of death. They don’t want to acknowledge that life is just temporary and a gift. I am sorry that you lost your wife. I pray that God heals your heart.

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kathleenkin | @kathleenkin | Dec 13, 2019
In reply to @llwortman "Dear Leann: I commend you for sharing your fears, and I assure you that you are..." + (show)
@llwortman

Dear Leann:
I commend you for sharing your fears, and I assure you that you are not alone. I understand the horror when diagnosed with life threatening diseases and events. But we can and will survive. I have survived lung cancer (and melanoma ) for 12 years, and lived through the unfair stigma as a never smoker.
I have had outstanding support from my physicians and their teams as well as my loving husband.

One place where I found amazing insights about death and living one day at a time was through Dr Amit Sood, his paced breathing study, his classes, and his lectures along with his well written books. My favorite book is HAPPINESS by Dr Amit Sood.

Think about reading this book and practicing what he teaches about surviving, and sleep and acceptance.
I tell people, lung cancer became my blessing and keeps teaching me many lessons.
You deserve a cyber hug.

Jump to this post

It may sound strange to some, but my dog brings me comfort. I live alone. My family is nearby but with most families they are busy. Days when I don’t feel well, Mac will lay on my shoulder with his face on my cheek. I know he depends on me and that keeps me motivated

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2 replies
kathleenkin | @kathleenkin | Dec 13, 2019

I just had my fifth cancer surgery on the 6th of December. I gave a very rare cancer called chondrosarcoma. It is a bone cancer that creates cells in my bones and throws the cells in my lung. They removed my right lung two years ago.
I keep a positive attitude. I enjoy every day that I gave. I currently have seven tumors in my left lung. They are small and too deep for surgery right now. I know that in time they will have to be removed and my life will change dramatically. I am mot afraid of death. The hard part will be leaving my son. My son and family know my wishes and we discuss the future. I trust that God has a plan for my life. I pray that you will find peace and joy, and that fear will not be part of your life. Be honest and open with. Your husband about your feelings. He is scared too. I wish you the best. Most of all - don’t give up!!

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1 reply
Sundance(RB) | @sundance6 | Dec 13, 2019
In reply to @kathleenkin "It may sound strange to some, but my dog brings me comfort. I live alone. My..." + (show)
@kathleenkin

It may sound strange to some, but my dog brings me comfort. I live alone. My family is nearby but with most families they are busy. Days when I don’t feel well, Mac will lay on my shoulder with his face on my cheek. I know he depends on me and that keeps me motivated

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I also live alone! My dogs are my kindered spirts. We are so Lucky to be blessed with them.
Sundance (RB)

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2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 13, 2019
In reply to @leannn "It's late at night and I cannot sleep. I'm drawn back to this chat about living..." + (show)
@leannn

It's late at night and I cannot sleep. I'm drawn back to this chat about living with advanced cancer tonight. There are just some thoughts about death and grief that I'm finding myself having that I cannot speak with anyone about in good consciousness. I'm afraid to hurt anyone else by discussing these feelings and when it comes up in a natural conversation, it always seems to end terribly. I've skimmed through others' comments that, thank God, helps me not feel so alone in this. But finding a voice and someone who understands is so very difficult. Especially when on the outside, and for the most part, I feel like I'm coping like a champ and making the very most of this life in being strong, resilient, proactive in my health, etc. Tonight we, my husband and I, were watching a Christmas movie. One where the spouse dies and the widow is talking about how their deceased spouse loved Christmas and all the good memories with a potential new significant other. My husband makes a comment about how awkward that would be! So I understand to a point, but say something to the effect that it's part of the character's life and fond memories being carried on. Which inside, gives me a great feeling, thinking I won't be forgotten relating it to me. Creating good memories is top on my list of purposes these days. But then he goes on, essentially saying he'd just keep it all to himself - no one wants to hear about x or deceased spouses. And my take away is crushed! It's like when it's over, that's it... your name's never spoken again. We are VERY close. He's my rock and the love of my life and when I die I want him to do what he needs to be happy. But I never thought all my good intentions of making all these good memories could be seen or processed this way - to simply tuck it all inside. I know he's processing a lot of emotions from his perspective. It's a lot for both of us to deal with. But my heart is just crushed and no one talks about these things!!

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@leannn I am glad you feel comfortable to share with us here on Mayo Connect. The subjects of death and grief are so individualized for people, at least in my experience. Like my dad, I do not hesitate to talk about either one, but several of my siblings are the opposite. This was never so clear as when our parents were at their earthly road's end. I have encouraged my husband to speak of his former long-time partner, who passed before I came into his life. Mementos she gave him are on display in his office, and pictures including her are displayed. Would you be able to explain to your husband how his comment struck you? How do you think he might respond?
Ginger

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1 reply
kathleenkin | @kathleenkin | Dec 13, 2019
In reply to @sundance6 "I also live alone! My dogs are my kindered spirts. We are so Lucky to be..." + (show)
@sundance6

I also live alone! My dogs are my kindered spirts. We are so Lucky to be blessed with them.
Sundance (RB)

Jump to this post

My Mac
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1 reply
leannn | @leannn | Dec 13, 2019
In reply to @IndianaScott "Hello @leannn Your post really hit home with me. My wife waged her war with brain..." + (show)
@IndianaScott

Hello @leannn Your post really hit home with me. My wife waged her war with brain cancer for over 14 years and we were married for 41. She was diagnosed at age 48 and passed away in July 2016. Her adult children, grandchildren, friends, and I continue to work through our grief journeys -- each in our own manner. She has not, nor ever will be, forgotten by those close to her in life since we continue to be close to her now.

During her illness we found no one really wanted to talk about her mortality. When they would ask 'how are you doing' all they wanted to hear was 'fine'. We had to be satisfied with having those deep discussions with only a very few. In our case it was the two of us, our two adult children, her bff and my bff.

My wife continues to be a part of my daily thoughts, she is a constant component of our conversations within our family, her bff and I have picked up the friendship she had with my wife and continue as friends, etc.

Yes, we do have those folks who do not want to ever mention that I am a widower or lost my wife. We have a couple, who knew my wife and I for longer than we were married, who have never acknowledged she is gone. Likewise I have siblings who constantly remind me 'it's time to get on with life', but they were also never in our lives during my wife's illness so it is no surprise. Some folks just cannot handle it. On the other hand this past week I was at a business meeting where I saw a former boss from many years ago and her first comment to me was 'how are you getting along? I really miss your wife when you visit!' So sometimes we just never know our lasting impact on others.

Strength, courage, and peace!

PS I admire your husband for being able to watch those movies! My emotions are still in such turmoil that I can't watch much of anything emotional without becoming a sobbing mess -- especially for some reason ANY Disney movie 🙂

Jump to this post

Hello @IndianaScott Thank you for sharing your wife and your journey through her illness, death, and grief process. I can't tell you how much it means to me to hear that she's not forgotten and part of conversations and your lives now. That her legacy lives on in a healthy loving way. That's what I assumed would be the way my family would grieve and the thought of it gave me some comfort. But you are so right, everyone grieves in their own way and time. I just thought "making good memories" would be what everyone would want. But another perspective, at certain times, could see it as a trigger that evokes too much emotion. I have a friend who's husband died and she stated she was glad he didn't have time to write letters or prepare before he died because it just was too much for her to cope with if around every corner there was a letter, gift, or some reminder. We all grieve differently.

I can so relate to the quick conversation starters or statements that avoid the "tough" topics of cancer or mortality. I often hear, "You look SO good!" and "You're such a fighter" but very rarely do I share nor do I feel others want to hear my true concerns and thoughts on being sick or dying. I'm a counselor by trade and as expected, I'm no stranger to tough topics and conversations. But sometimes, the fact that I am just that and I've been very resilient in life with a list of other health issues (stroke, heart failure, surgeries, pacemaker, etc.) makes it even harder. I have some friends who are counselors who cannot truly address these issues!

Thank you for sharing!
Oh PS. lol, my husband is a trooper for sure. He watches these Christmas movies with me every year because I love Christmas and celebrating. But every now and then, a movie sneaks up on us like the one I shared. Uggg, a good Disney movie always pulls on the heartstrings. 🙂

Strength, courage, and peace to you as well and thank you again!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 13, 2019
In reply to @kathleenkin "My Mac" + (show)
@kathleenkin

My Mac

Jump to this post

Hello @kathleenkin
Thank you for sharing the picture of Mac. What a sweet looking dog. He must be a comfort for you!

REPLY
1 reply
leannn | @leannn | Dec 13, 2019
In reply to @llwortman "Dear Leann: I commend you for sharing your fears, and I assure you that you are..." + (show)
@llwortman

Dear Leann:
I commend you for sharing your fears, and I assure you that you are not alone. I understand the horror when diagnosed with life threatening diseases and events. But we can and will survive. I have survived lung cancer (and melanoma ) for 12 years, and lived through the unfair stigma as a never smoker.
I have had outstanding support from my physicians and their teams as well as my loving husband.

One place where I found amazing insights about death and living one day at a time was through Dr Amit Sood, his paced breathing study, his classes, and his lectures along with his well written books. My favorite book is HAPPINESS by Dr Amit Sood.

Think about reading this book and practicing what he teaches about surviving, and sleep and acceptance.
I tell people, lung cancer became my blessing and keeps teaching me many lessons.
You deserve a cyber hug.

Jump to this post

Hi @llwortman - Thank you so much for your help and assurance that I'm not walking this road alone! Yes, we will survive. Uuug, the unfair stigma of lung cancer and having never smoked must be so tough! I'm so glad your support team surrounds you.

I'm so glad you reminded me of Dr. Sood and his books, classes, lectures! I have read one of his books and did benefit so much. I think I need a refresher and maybe check into his classes and lectures. I'll have to explore that further. Great idea.

I love how you reframe your challenge into your blessings too! I have a whole list of medical issues besides my stage 4 ovarian cancer - stroke at age 18 due to a heart defect, 4 open heart surgeries, pacemaker... the list keeps going. I've always stated, the lessons learned through these trials make me who I am today - to see the joy, have gratitude for some things that may be taken for granted. It's all in the silver linings, isn't it?

Thank you and thanks for the cyber hug! Just what I needed. 😉

REPLY
leannn | @leannn | Dec 13, 2019
In reply to @jimmy2248 "Thank you for that testimony. I have urinary bladder cancer. Mets to my lungs liver. 2yrs..." + (show)
@jimmy2248

Thank you for that testimony. I have urinary bladder cancer. Mets to my lungs liver. 2yrs yesterday . I have surgery.I am handling it. But people say "I'm so sorry. just to hear what happened in your life gives me renewed strength. God Bless.

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Yes @jimmy2248 thank you for sharing. 2 years yesterday sounds like you need to celebrate if you haven't already! That's one thing trials have taught me and that's to celebrate every opportunity. True, we never know the impact of ours or others stories. Best wishes, strength, and blessings.

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