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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

Hello @kateia

Your friend is so fortunate to have you on her side. You have addressed some questions as to how to support your friend who is facing the end of her life. How kind of you!

I’m sure that she needs your presence with her during this time. Knowing that you care and that your friendship is important to her. I visited a friend who had made the decision to enter hospice. When I went to visit her I thanked her for her friendship over the years and I told her that I valued it. I reminisced about the trips we had taken together, the movies we had seen and enjoyed. She expressed similar gratitude.

I’ll be looking forward to hearing how others will respond to what is important to them.

Teresa

@sistie

I have been battling metastatic breast Cancer now for almost 7 years. I never thought I would live this long. I’m at the point where I’m afraid I will run out of money before I die. I had a terrible time this summer with pain due to a fractured vertabra. I had to hire full time (40 HR a week) help to do most everything for me. I didn’t bother to see if I could afford it because I just simply needed it not to mention a dog sitter for my two dogs while I spent 23 days in the hospital. Things are finally getting better–much less pain after spine lapindectomy and radiation. More radiation for brain tumors and a tumor in my jaw. I’ve told my caregiver I need her only 20 hrs a week now which didn’t go over well. I’d like to have her more but I just can’t make ends meet. I’ve told everyone not to expect much for Christmas. My problem is when all this was going on I made my peace with death and was ready to go. I’m still ready. I don’t have much quality of life, my money is running out and I’m afraid what will happen next year when I turn 65 and have to go on Medicare. I have good insurance now through my last employer but my understanding is Medicare
has lots of co pays for everything. Then there’s that donut hole which I’m sure to hit fairly quickly with these out of the world cancer meds. I know I have the option of throwing in the towel and saying no more treatment but my cancer is actually fairly indolent most of the time and even if I just get palliative care I could live indefinitely. I could have said no to back surgery but I would have ended up paralyzed fairly quickly so I’m glad I did it. The brain lesions might or might not have lead to my death but I didn’t want to end up severely cognitively impaired in my last time with my family. I am on blood thinners because I had a couple of DVTs last summer as well as a PE. I could stop taking those and see what happens

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My husband has SCC-Spindle cancer, and the immunotherapy killed his transplanted kidney. We were able to purchase a Medicare supplement through Cigna (American Retirement Life Insurance Company). Because he is on dialysis, the American Kidney Foundation is going to cover the premium cost for the supplemental insurance ($242/month). There may be a similar foundation for your condition(s). The supplement pays for all the copays. He has great insurance now through his work. When he loses that insurance, it will trigger a qualifying event which will allow purchase of Medicare Part D (drugs).

Also, he had three tumors – liver, diaphragm and neck when he had a PET scan in May. He was switched to Keytruda in June, and as of October 12, he had no detectable cancer. The doctors are amazed at the effectiveness of Keytruda.

My husband and I spent 1 1/2 hours at my friends home and enjoyed visiting with them.

Hi Colleen & friends,
What a great Idea! I am sorry I am joining you now, but I was in hospital for the past 12 days. I have been living with cancer for the past 22 years and now my very worried doctors are seeing what eventual problems may attack one, due to chemo or other treatments. I have always had my treatments on my right side of my body & suddenly breathing became very difficult. I couldn’t even Take the dogs out so I did it just once a day and my sweet husband took them twice more. I didn’t get better, went to hospital & stayed 4 days & they drained more than 5 lt. liquid out of my right lung. Happy back home but after 3 days I felt the same again. Back to the hospital, more x_rays and then they tried this new treatment. I try to explain the best I can, they glued a piece in my lung together which doesn’t allow more liquid to gather. I am short of breath & everything incl. every step is an effort. Hope to be able to breathe normaly again soon. I miss it.
I think personally that we cannot give advices to people who received their diagnoses recently. The only thing to do is to listen to them and find something in their talk which helps us to start learning each other. Then maybe ask them what is their worse fear and trend carefully from. We are not all alike, our fears are different, life experiences quite unique and sometimes our golas not like each other. Wish you all luck & remember to enjoy the life you have. Hellos all the way from Stockholm❤️

Hello @saltis

I am sorry to hear that you have been hospitalized and not well but glad that you are back home. You made some very helpful comments about the newly diagnosed people in our group. It does take awhile to get our hands around a cancer diagnosis and the long term implications of it, doesn’t it?

Please keep us updated as to how you are feeling. We have many in our group you are dealing with breathing problems right now. I’m going to tag some of our members who have also dealt with breathing problems, I’m sure they would like to give you some words of encouragement, @windwalker, @shortshot80 and @llwortman.

Yes, I will remember to “enjoy the life I have.” Thanks for that great reminder!

Teresa

I am truly humbled by the brutal honesty, hard truths, loving devotion and courage shared here. I have no other words…

@vsinn2000

I am truly humbled by the brutal honesty, hard truths, loving devotion and courage shared here. I have no other words…

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Vicky, @vsinn2000

I’m glad that you have found value in our community. I feel sure that you will be part of sharing those truths, devotion and courage as you face your own challenges! I’m so glad that you found your way to Mayo Connect.

Teresa

Liked by vsinn2000

Teresa,
Quite honestly, and more appropriate perhaps in another forum, the Mayo Connect community has encouraged me, supported my meltdowns, shared in my small victories and sent a flood of support that I cannot thank everyone enough for! I do occasionally try to reach out, not as often as I could so I will try and make that change. It really makes me feel Ike I need to “put on my big girl panties” as I read some of experiences shared.
Vicky

Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn’t know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don’t go put when I can’t appear healthy.But anyway the Dr. didn’t seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening

for those that don’t know me ( I haven’t been on in a while) I have metsastic Thymoma

@vsinn2000

Teresa,
Quite honestly, and more appropriate perhaps in another forum, the Mayo Connect community has encouraged me, supported my meltdowns, shared in my small victories and sent a flood of support that I cannot thank everyone enough for! I do occasionally try to reach out, not as often as I could so I will try and make that change. It really makes me feel Ike I need to “put on my big girl panties” as I read some of experiences shared.
Vicky

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Vicky, @vsinn2000
I know what you mean. I gain incredible strength from the stories of others here. We have people in our community with strength and determination like I’ve never seen before.

Teresa

Allison,
I’m truly sorry that your concerns and questions weren’t answered or addressed. Perhaps an appointment with both doctor and radiologist would give you the information you are looking for in a neutral setting? It sounds as though you are frustrated right now but have been with your doctor for a while. I’m new enough that I am not sure if each hospital has their own set up, or if a care team meeting would be a normal part of the process? I am still meeting all of mine to get treatment started but I believe I will ask if this would be possible if I had concern or an issue like this.
Vicky

@allisonsnow

Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn’t know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don’t go put when I can’t appear healthy.But anyway the Dr. didn’t seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening

for those that don’t know me ( I haven’t been on in a while) I have metsastic Thymoma

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@allisonsnow

I’m glad that you checked in with us. I’ve thought of you often. I so sorry to hear that the recent scans did not show improvement. I can’t imagine how difficult that was for you to hear. I can also understand your unwillingness to be a guinea pig for a treatment without a track records – I think most of us would choose quality of life.

When the doctor said that you were handling the side effects of treatment well, do you think he meant that your blood work does not show serious problems with your current treatment?

I think we all have the “but you look so good” problem when we face the world with our best face forward. I’m sure that family and friends do not realize how much effort cancer patients put into “looking good” and putting forth a good image. Please know that we want to continue to care and support you during this time.

Will you please keep in touch and let us know how you are doing and how the treatment is working?

Teresa

Liked by vsinn2000

@vsinn2000

Allison,
I’m truly sorry that your concerns and questions weren’t answered or addressed. Perhaps an appointment with both doctor and radiologist would give you the information you are looking for in a neutral setting? It sounds as though you are frustrated right now but have been with your doctor for a while. I’m new enough that I am not sure if each hospital has their own set up, or if a care team meeting would be a normal part of the process? I am still meeting all of mine to get treatment started but I believe I will ask if this would be possible if I had concern or an issue like this.
Vicky

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Vicky:
That is a helpful and good suggestion!
Teresa

Liked by vsinn2000

@kateia

I have a friend who has just made the decision to forego any more treatments. The cancer has spread throughout the body. I have always supported her throughout the two year struggle and continue to do so. My dear friend is a Christian and has the comfort of knowing that in the end he/she will be with Christ. My question for you, cancer sufferers, what can I do to keep spirits up and let my friend know that I care and want to help.

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Sarah Young has some very well written Christian devotion books. One of my favorites is Jesus Calling or Jesus Lives. They are short one page inspirational readings with bible verses to cross reference to. These books gave me strength to get through my heart surgery and complications all caused by carcinoid cancer. Your friend is so lucky to have you, she needs you now more than ever.

@kateia

I have a friend who has just made the decision to forego any more treatments. The cancer has spread throughout the body. I have always supported her throughout the two year struggle and continue to do so. My dear friend is a Christian and has the comfort of knowing that in the end he/she will be with Christ. My question for you, cancer sufferers, what can I do to keep spirits up and let my friend know that I care and want to help.

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@mollie59 Thanks for your suggestion! Teresa

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