Talking Frankly about Living with Advanced Cancer

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.

@pbprice

Yes, I'm being very careful and wearing my nose mask when I'm out; was scheduled on 10/3 for my last treatment, but unable because of low WBC; waiting on lab results (10/7) for a confirmation of appt reschedule 2c the doctor

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@pbprice I’m glad to hear you wear a mask especially with flu season on its way! Also remember to keep your hands clean and they touch all surfaces. Wash, wash, wash!

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@elene1095

I developed a rash on my scalp as soon as I was bald, but it cleared up by itself in a few weeks and never came back. The reddish, scaly spots were never really actual sores.

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Are you on Carbo and Doxil? And for how long? Thanks

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@pbprice

Yes, I'm being very careful and wearing my nose mask when I'm out; was scheduled on 10/3 for my last treatment, but unable because of low WBC; waiting on lab results (10/7) for a confirmation of appt reschedule 2c the doctor

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@pbprice, I can understand your worry about not being able to get your scheduled chemotherapy because of low white blood cells. Now that your oncologist knows that the chemo affects your WBCs, they can be better prepared for next time. The Neulasta injection is usually given once during a chemotherapy cycle, at least 24 hours after the last dose of chemotherapy in the cycle and 14 days before the first dose of chemotherapy in the next cycle. So hopefully they will be able to give it to you after your next round of chemotherapy so you can stay on schedule after that. It's complicated, but does that make sense?

Like @becsbuddy suggested, ask questions about getting Neulasta the next time.

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@pbprice

Yes, I'm being very careful and wearing my nose mask when I'm out; was scheduled on 10/3 for my last treatment, but unable because of low WBC; waiting on lab results (10/7) for a confirmation of appt reschedule 2c the doctor

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@pbprice, I was thinking about you today. How are you doing?

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@colleenyoung

@pbprice, I was thinking about you today. How are you doing?

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My therapy for ballence an visual therapy I has bev very helpful. I am able to resume most activities but am in danger of losing my driver’s license. How about you
Mike G

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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

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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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.

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@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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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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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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Stay positive and be around positive people. God is wonderful and will take you through this. God bless

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