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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.

allisonsnow | @allisonsnow | May 28, 2018

@cindylb Your message really hit home. The raw honesty and pain came across 100%, at least to me. I only have had to be a caregiver while he was recovering from a serious ATV accident (and I had just begun chemo) and I definetley couldn't give as much as I felt he deserved, he has been dealing with me for 9 years. I know the worst for him has been when they say "get your/her affairs in order" it has always been fantastic that I have been granted miracles and am still alive BUT I have felt it must be torture for him even more than for me. The facts are you have to take care of the business end of having cancer but please know that from my end I truly appreciate how smoothly he handles that , makes me feel less guilty for screwing with your life. We have been married for 43 years in June and this is not what we had planned. I hope you get some support here and also a place to blow off steam! lol I come here often just to get the perspective of the caregivers or any new ideas there are out there!!

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allisonsnow | @allisonsnow | May 28, 2018
In reply to @cindylb "I was directed over to this support group by the lung cancer group and am glad..." + (show)
@cindylb

I was directed over to this support group by the lung cancer group and am glad to have found this. My husband has been diagnosed with Stage 4 Cancer. It is a cancer of unknown primary or possibly lung. The doctors don't have any treatment options for us. We are going for a second opinion this week, just in case a different set of doctors may see other possibilities. My husband wants to enjoy the time he has without more tests and treatments that will make him feel worse initially anyway. I'm no stranger to cancer having had breast cancer twice myself, nursed my sister through Stage 4 Lung and my father through Stage 4 esophagus cancer. However, losing my husband of 35 years is so totally devastating to me. I'm afraid that as the caretaker I will have to manage all of the medical issues, the financial and the day to day and although I don't mind any of that...........I will be so overwhelmed with all of it that I'm afraid I'll lose any real time quality time with my husband. We've lost so many family members and friends in the last 10 years I'm kind of on my own with this one. I also find, as some of you have stated, that some people simply disappear on you when this happens and others will be there. I'm trying to find a balance of getting it all done and also having time with my husband and that, I'm afraid, will be tricky. I don't want any regrets on how I handle this.

Jump to this post

@cindylb P.S. never any regrets when you lead from love

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allisonsnow | @allisonsnow | May 28, 2018

I have a question. I had an oncologist ( that I loved ) who ordered a pet scan with every visit, every 3 months ….and now have a well supported oncologist who NEVER orders one ! Who was/is right???

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3 replies
cindylb | @cindylb | May 28, 2018
In reply to @cindylb "I was directed over to this support group by the lung cancer group and am glad..." + (show)
@cindylb

I was directed over to this support group by the lung cancer group and am glad to have found this. My husband has been diagnosed with Stage 4 Cancer. It is a cancer of unknown primary or possibly lung. The doctors don't have any treatment options for us. We are going for a second opinion this week, just in case a different set of doctors may see other possibilities. My husband wants to enjoy the time he has without more tests and treatments that will make him feel worse initially anyway. I'm no stranger to cancer having had breast cancer twice myself, nursed my sister through Stage 4 Lung and my father through Stage 4 esophagus cancer. However, losing my husband of 35 years is so totally devastating to me. I'm afraid that as the caretaker I will have to manage all of the medical issues, the financial and the day to day and although I don't mind any of that...........I will be so overwhelmed with all of it that I'm afraid I'll lose any real time quality time with my husband. We've lost so many family members and friends in the last 10 years I'm kind of on my own with this one. I also find, as some of you have stated, that some people simply disappear on you when this happens and others will be there. I'm trying to find a balance of getting it all done and also having time with my husband and that, I'm afraid, will be tricky. I don't want any regrets on how I handle this.

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Thank you!

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ventibug | @ventibug | May 28, 2018

I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable & aggressive. Have already had 2 small recurrences. Did not tolerate cycle 1 of chemo and currently trying to heal infected previous dehiscence of primary surgical wound, which led to admissions for sepsis and mucocytis. I have just turned 62 and not ready to give up yet! I know this is probably how God will take me home, but don't know how or when. Questions I currently wrestle with (all suggestions appreciated as i am so new at this): 1) how to cope with anxiety about being off chemo awaiting healing of wound infection; 2) how to plan for Christmas as 3 kids & 4 preschooler grandkids coming. May be my only Christmas with cancer (according to prognosis). I will have to cook less than usual!; 3) Following financial thread (if you can tell me how to follow a thread. Having to close my business this month as I have not been able to work since 2/15/18. Would have loved to keep working but chemo brain too severe for safety. Have always been main breadwinner but thanks goodness my husbands work has corporate health insurance. Cannot see our way through right now but our God providing.
So, you see, Im new at this and kinda clueless. I so appreciate everyone's sharing and feel less alone when I am blessed by your contributions.
Ventibug

REPLY
7 replies
Linda | @llwortman | May 28, 2018
In reply to @cindylb "I was directed over to this support group by the lung cancer group and am glad..." + (show)
@cindylb

I was directed over to this support group by the lung cancer group and am glad to have found this. My husband has been diagnosed with Stage 4 Cancer. It is a cancer of unknown primary or possibly lung. The doctors don't have any treatment options for us. We are going for a second opinion this week, just in case a different set of doctors may see other possibilities. My husband wants to enjoy the time he has without more tests and treatments that will make him feel worse initially anyway. I'm no stranger to cancer having had breast cancer twice myself, nursed my sister through Stage 4 Lung and my father through Stage 4 esophagus cancer. However, losing my husband of 35 years is so totally devastating to me. I'm afraid that as the caretaker I will have to manage all of the medical issues, the financial and the day to day and although I don't mind any of that...........I will be so overwhelmed with all of it that I'm afraid I'll lose any real time quality time with my husband. We've lost so many family members and friends in the last 10 years I'm kind of on my own with this one. I also find, as some of you have stated, that some people simply disappear on you when this happens and others will be there. I'm trying to find a balance of getting it all done and also having time with my husband and that, I'm afraid, will be tricky. I don't want any regrets on how I handle this.

Jump to this post

Dear Cindy: You are braver than you think because you have the courage to share your story! I have been somewhat in your shoes. But honestly, we never know the depth and breath of another persons pain and fear of loneliness... I know this first hand as a 10 year lung cancer survivor and also seeing the love of my life go thru fire and also a horrific accident. But we make it by the grace of our guardian angels, don't we? One thing that really really helped me when I was at the brink of my life with lung cancer, as a never smoker, and the stigma and uneducated blame that came with this disease...was Dr Amit Sood and his Mindful class.
You can find Dr Amit Sood at Mayo Clinic online. Or listen to his amazing TED X Talk (u-tube Dr Amit Sood). I highly recommend one of his books "Stress Free Living" or "Happiness" and I can tell you this...the Pace Breathing changed my life, gave me direction and permission to live with quality of life and walk away when other people are hurtful or I am overwhelmed ...actually I'm not overwhelmed or afraid any longer. I now know how to blow it all away. No regrets. Let's stay connected. You are stronger than you realize:-) Just take a few long deep breath's. You deserve a big cyber hug!

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Mentor
Scott, Volunteer Mentor | @IndianaScott | May 28, 2018
In reply to @ventibug "I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable &..." + (show)
@ventibug

I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable & aggressive. Have already had 2 small recurrences. Did not tolerate cycle 1 of chemo and currently trying to heal infected previous dehiscence of primary surgical wound, which led to admissions for sepsis and mucocytis. I have just turned 62 and not ready to give up yet! I know this is probably how God will take me home, but don't know how or when. Questions I currently wrestle with (all suggestions appreciated as i am so new at this): 1) how to cope with anxiety about being off chemo awaiting healing of wound infection; 2) how to plan for Christmas as 3 kids & 4 preschooler grandkids coming. May be my only Christmas with cancer (according to prognosis). I will have to cook less than usual!; 3) Following financial thread (if you can tell me how to follow a thread. Having to close my business this month as I have not been able to work since 2/15/18. Would have loved to keep working but chemo brain too severe for safety. Have always been main breadwinner but thanks goodness my husbands work has corporate health insurance. Cannot see our way through right now but our God providing.
So, you see, Im new at this and kinda clueless. I so appreciate everyone's sharing and feel less alone when I am blessed by your contributions.
Ventibug

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Hello @ventibug I am pleased to e-meet you here on Mayo Connect. I am Scott and I am also sad to read of your health issues.

I am not any type of medical professional, but I do know dealing with the unknown and the waiting can often be a significant challenge. I wish I knew of a potion to take to help with this, but all I can say is when my wife was at her most anxious I would try and get her to talk about it out loud and just keep talking and talking and talking. It was the only way I could see her gain some calmness at those incredibly stressful times.

As to holidays — oh boy! Holidays were always stressful for us as my wife recalled how much she used to do for them, and enjoy them, but no longer could. The first thing I did was talk to our adult children and set a whole new and lower set of expectations for holidays. I took to splitting up the chores between all attending family members, young and old alike, ahead of time. We also installed a ‘one gift’ rule and focused instead on just being together. My wife is gone now and we still do this and love it.

Finances are slways a tough issue with medical bills, specialists not covered, copays, and frequent need to ask the insurance company to reconsider their decisions. Plus being s time of less income. All very time consuming. In our case I was fired due to my wife’s needs so our finances were somewhat different and all I can say is I had to tell our children I spent their inheritance on their mom’s medical care and also sold a lot of unneeded items on ebay 🙂

I am sure others have additional suggestions, hints, and tips.

Strength, courage, and peace.

REPLY
Jamie Olson | @jamienolson | May 28, 2018
In reply to @ventibug "I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable &..." + (show)
@ventibug

I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable & aggressive. Have already had 2 small recurrences. Did not tolerate cycle 1 of chemo and currently trying to heal infected previous dehiscence of primary surgical wound, which led to admissions for sepsis and mucocytis. I have just turned 62 and not ready to give up yet! I know this is probably how God will take me home, but don't know how or when. Questions I currently wrestle with (all suggestions appreciated as i am so new at this): 1) how to cope with anxiety about being off chemo awaiting healing of wound infection; 2) how to plan for Christmas as 3 kids & 4 preschooler grandkids coming. May be my only Christmas with cancer (according to prognosis). I will have to cook less than usual!; 3) Following financial thread (if you can tell me how to follow a thread. Having to close my business this month as I have not been able to work since 2/15/18. Would have loved to keep working but chemo brain too severe for safety. Have always been main breadwinner but thanks goodness my husbands work has corporate health insurance. Cannot see our way through right now but our God providing.
So, you see, Im new at this and kinda clueless. I so appreciate everyone's sharing and feel less alone when I am blessed by your contributions.
Ventibug

Jump to this post

Hello @ventibug, Welcome to Mayo Clinic Connect. New....but not clueless. 🙂 I'm happy you found this site and would like to encourage you to start a new thread in the cancer group to discuss anxiety while you wait- One of the things I hear patients talk about at Mayo is the anxiety of waiting for tests, results, 3 month, 6 month and 1 year follow up appointments. I think it's so common and to read how others cope with the anxiety will be helpful to all.

I loved the ideas that Scott gave you for planning Christmas. You could also let amazon help you- no running around and it's delivered right to your door. I also wanted to share with you that this last year we lost my Mother-in-law to cancer and she was the ultimate shopper for Christmas- she loved the season and watching us kids open gifts. We knew going into Christmas that it was going to be our last one with her and I can honestly say that all that mattered that night was for us to savor every moment with her and concentrate on all of us being together- gifts weren't even a thought. Put one of the kids in charge of Christmas dinner this year. I found myself planning Christmas dinner this last year for the first time and I wanted to make sure it was extra special and I'll never forget it. It was so special.

As far as following threads, on the groups page just click follow. Notifications will be sent to you via email when someone posts or replies in the group you follow. I find it easier to "view and reply" from the email notification. Please let me know if you need help navigating. 🙂

REPLY
ventibug | @ventibug | May 28, 2018
In reply to @cindylb "I was directed over to this support group by the lung cancer group and am glad..." + (show)
@cindylb

I was directed over to this support group by the lung cancer group and am glad to have found this. My husband has been diagnosed with Stage 4 Cancer. It is a cancer of unknown primary or possibly lung. The doctors don't have any treatment options for us. We are going for a second opinion this week, just in case a different set of doctors may see other possibilities. My husband wants to enjoy the time he has without more tests and treatments that will make him feel worse initially anyway. I'm no stranger to cancer having had breast cancer twice myself, nursed my sister through Stage 4 Lung and my father through Stage 4 esophagus cancer. However, losing my husband of 35 years is so totally devastating to me. I'm afraid that as the caretaker I will have to manage all of the medical issues, the financial and the day to day and although I don't mind any of that...........I will be so overwhelmed with all of it that I'm afraid I'll lose any real time quality time with my husband. We've lost so many family members and friends in the last 10 years I'm kind of on my own with this one. I also find, as some of you have stated, that some people simply disappear on you when this happens and others will be there. I'm trying to find a balance of getting it all done and also having time with my husband and that, I'm afraid, will be tricky. I don't want any regrets on how I handle this.

Jump to this post

@llwortman. Wow, thanks. Will check out TED talk tomorrow and likely order a book. Ventibug

REPLY
ventibug | @ventibug | May 28, 2018
In reply to @ventibug "I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable &..." + (show)
@ventibug

I was only diagnosed this calendar year but with Stage IV leimyosarcoma, which is unpredictable & aggressive. Have already had 2 small recurrences. Did not tolerate cycle 1 of chemo and currently trying to heal infected previous dehiscence of primary surgical wound, which led to admissions for sepsis and mucocytis. I have just turned 62 and not ready to give up yet! I know this is probably how God will take me home, but don't know how or when. Questions I currently wrestle with (all suggestions appreciated as i am so new at this): 1) how to cope with anxiety about being off chemo awaiting healing of wound infection; 2) how to plan for Christmas as 3 kids & 4 preschooler grandkids coming. May be my only Christmas with cancer (according to prognosis). I will have to cook less than usual!; 3) Following financial thread (if you can tell me how to follow a thread. Having to close my business this month as I have not been able to work since 2/15/18. Would have loved to keep working but chemo brain too severe for safety. Have always been main breadwinner but thanks goodness my husbands work has corporate health insurance. Cannot see our way through right now but our God providing.
So, you see, Im new at this and kinda clueless. I so appreciate everyone's sharing and feel less alone when I am blessed by your contributions.
Ventibug

Jump to this post

Great ideas, thank you. I cannot imagine coping with the death of your wife; my sympathy for your loss. My husband has been so great about taking care of me. I literally could not be doing this without him! He just changed another dressing. And of course i would do the same for him. Still hard to be on receiving end all the time. Hope you take care of yourself, too, but of course you do. You are still here and still reaching out. Ventibug

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