Stage III Lung Cancer: Fear of what’s to come

Posted by billy1of3 @billy1of3, Sep 20 7:58am

My biggest problem is not knowing what to expect next. I’ve been diagnosed 2 months ago with Stage III lung cancer. I am unable to have treatment and currently have the terrible weakness,coughing up blood,nausea I dont know what to expect next and down the road which I am told is six months. Can anyone please help me as to what to expect. Thanks, Bill

I am experiencing extreme weakness, cough. Nausea, and sweating. What can I expect next? Thanks

REPLY

Hello @billy1of3 Welcome to Mayo Clinic Connect.

Oh wow, getting news like that can sure clip you at the knees. I know you’re not looking for sympathy but I am truly sorry you’re facing this cancer journey. I can empathize with the fear and uncertainty from my own cancer story…though a completely different cancer.

If you are unable to have treatment, you mentioned “down the road” is six months. I’m reading between the lines gathering that you mean you’re in the final chapter of the proverbial book of life. Bill, are you alone? Do you have a support system? I’m also wondering if you’ve been in touch with a palliative care or hospice counselor. These caring professionals will be able to help set you up with a plan to be comfortable and help you make end of life decisions.
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
https://www.mayoclinic.org/healthy-lifestyle/end-of-life/in-depth/cancer/art-20047600
https://www.cancer.org/treatment/end-of-life-care/hospice-care/what-is-hospice-care.html
You should not be having to face the most frightening time of your life alone and without answers or support. Have you spoken to a social worker with your Oncologist? They will be able to help arrange a meeting with either a palliative care or hospice care worker to get you the assistance you need.

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@loribmt

Hello @billy1of3 Welcome to Mayo Clinic Connect.

Oh wow, getting news like that can sure clip you at the knees. I know you’re not looking for sympathy but I am truly sorry you’re facing this cancer journey. I can empathize with the fear and uncertainty from my own cancer story…though a completely different cancer.

If you are unable to have treatment, you mentioned “down the road” is six months. I’m reading between the lines gathering that you mean you’re in the final chapter of the proverbial book of life. Bill, are you alone? Do you have a support system? I’m also wondering if you’ve been in touch with a palliative care or hospice counselor. These caring professionals will be able to help set you up with a plan to be comfortable and help you make end of life decisions.
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
https://www.mayoclinic.org/healthy-lifestyle/end-of-life/in-depth/cancer/art-20047600
https://www.cancer.org/treatment/end-of-life-care/hospice-care/what-is-hospice-care.html
You should not be having to face the most frightening time of your life alone and without answers or support. Have you spoken to a social worker with your Oncologist? They will be able to help arrange a meeting with either a palliative care or hospice care worker to get you the assistance you need.

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Thanks Lori for your words of kindness and understanding. I have very much support from a large family and many friends. I’m just the kind of person that does much better when I know what’s coming next. I live in an independent living facility which is also an ALF. All I want is some type of road map so I have a pretty good idea of what to expect in the days to come.

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@billy1of3

Thanks Lori for your words of kindness and understanding. I have very much support from a large family and many friends. I’m just the kind of person that does much better when I know what’s coming next. I live in an independent living facility which is also an ALF. All I want is some type of road map so I have a pretty good idea of what to expect in the days to come.

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I’m with you there, Billy. I like to know what’s coming too. Maybe it gives us a little feeling of taking charge over a situation beyond our control. We’re all scared to run out of time.
It’s good you have such large support system around you of loving family and friends to help give you some comfort. While they’re great for helping bolster morale and keeping your spirits up, they haven’t walked your walk.
So I’m hoping we have some fellow lung cancer members who can help you understand what will be expected in the near future.
I do hope you take my advice and contact your oncologist’s office to talk about palliative or hospice care. They are so valuable in helping you face what’s ahead and provide answers for you.

Just remember, you’re not alone here on Connect. Most of the members in our community have faced cancer, severe or debilitating illness or are the caregivers. We’re empathetic and do our best to offer support, encouragement and hope.
You mentioned not being able to have treatment? Is this due to age or severity of the lung cancer? I

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@billy1of3

Thanks Lori for your words of kindness and understanding. I have very much support from a large family and many friends. I’m just the kind of person that does much better when I know what’s coming next. I live in an independent living facility which is also an ALF. All I want is some type of road map so I have a pretty good idea of what to expect in the days to come.

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@billy1of3 I can understand your fear and anxiety over the “road map”. The one thing I can tell you is that everyone has a slightly different road map. I have been blessed to be the person in the room during the last breath several times. This is my role in what used to be a fair sized family. I believe that is because God (feel free to change descriptor) chose me to be compassionate during the scariest time a person faces. I consider this a sacred time in a life, there are some physical things that most (not all) people have in common during this time. A sort of slowing down, if you will. But there are a few stages mentally people go through, not every person goes through the same stages and there isn’t a hard and fast plan. The folks at hospice or the councilors should have some reading material for the family, and you should read it as well. I believe it will ease some of your fears. Also if you are a spiritual person you should connect with your spiritual advisor, whomever that is, at this time. All of these can alleviate fears. I always give my family a few pieces of frank advice during this time.
Anything you can do that you love to do, or would love to do, do it now. Anybody you want to call or visit, if you can, do it now.
Anything you love to eat, eat as much as you want now. Reminiscing is really good for the soul, let go of the bad parts and truly enjoy all the good and funny parts. Remember, this is YOUR journey, and anyone you choose is just along for the company, and for your comfort. I cannot tell you for sure what goes on inside of a persons heart or head, but I can tell you it does not have to be frightening or agonizing.
Please feel free to connect with me here anytime, and I will be happy to talk.

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@billy1of3

Thanks Lori for your words of kindness and understanding. I have very much support from a large family and many friends. I’m just the kind of person that does much better when I know what’s coming next. I live in an independent living facility which is also an ALF. All I want is some type of road map so I have a pretty good idea of what to expect in the days to come.

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Hi Billy – I will chime in here briefly. My Mom was in an independent/assisted living facility, where my daughter just happened to be the nurse/case manager. They had a (part time) social worker who was always more than happy to take time to help the residents and their families understand what was coming. Ehen the time was right, she was awesome at finding the right palliative care/hospice fit for each person. Maybe you could check into that?

Another option would be through the local arm of the Cancer Society. When my Dad was diagnosed with Stage IV liver cancer, they sent a volunteer mentor out to visit with him & my Mom, who was able to answer a lot of questions. I wish we had known about it 4 years earlier, when my Mother-in-law had brain cancer!

I hope you find a way to get the answers you need, and you can always come back here to Connect for support.
Sue

REPLY
@loribmt

Hello @billy1of3 Welcome to Mayo Clinic Connect.

Oh wow, getting news like that can sure clip you at the knees. I know you’re not looking for sympathy but I am truly sorry you’re facing this cancer journey. I can empathize with the fear and uncertainty from my own cancer story…though a completely different cancer.

If you are unable to have treatment, you mentioned “down the road” is six months. I’m reading between the lines gathering that you mean you’re in the final chapter of the proverbial book of life. Bill, are you alone? Do you have a support system? I’m also wondering if you’ve been in touch with a palliative care or hospice counselor. These caring professionals will be able to help set you up with a plan to be comfortable and help you make end of life decisions.
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
https://www.mayoclinic.org/healthy-lifestyle/end-of-life/in-depth/cancer/art-20047600
https://www.cancer.org/treatment/end-of-life-care/hospice-care/what-is-hospice-care.html
You should not be having to face the most frightening time of your life alone and without answers or support. Have you spoken to a social worker with your Oncologist? They will be able to help arrange a meeting with either a palliative care or hospice care worker to get you the assistance you need.

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I have contacted Hospice and they are great thanks again

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@billy1of3

I have contacted Hospice and they are great thanks again

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Billy, this is very reassuring news. Hospice helps to make you a little more sure-footed along that uncertain trail ahead. Hugs…

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@billy1of3

I have contacted Hospice and they are great thanks again

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I am so glad you found hospice, Billy. In August we spent 3 lovely days visiting a friend who, when diagnosed with his condition, was given just 2 weeks to live. We had a wonderful time reminiscing with him and his family, hospice was there daily to support them, and always only a phone call away.

Before that, I think we all sensed his time was short, and we spent the past year doing whatever struck his fancy – whether taking a drive to a favorite place, just sitting and chatting, or making a trip to Harbor Freight.

I vote with Lori – while you still have the desire, see or talk to everyone dear to you, travel if you can, eat your favorite foods – and fell free to have bad, anxious or angry days. They are part of the process of letting go.

I am glad you will have the support of family, friends and hospice to ease your journey.
Take care, and come back with any questions or even just to chat.
Sue

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Thanks so much Sue, my biggest problem and fear seems to be “what’s coming next”and how much pain will be associated with it. Bill

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Today, pain is the number one priority of hospice. These people are pros at keeping pain at bay. They work on air hunger and pain proactively. I have had very positive experiences on this front.
Your peace of mind is paramount.

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@billy1of3

Thanks so much Sue, my biggest problem and fear seems to be “what’s coming next”and how much pain will be associated with it. Bill

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Bill, that’s something lurking in the minds of most of us who are facing pushing up daisies from the underside. What will this be like and how painful…
I’ve come as close as humanly possible without actually passing through “the pearly gates” twice. Both times, it was unexplainably peaceful with absolutely no sense of fear or panic. Because of those two experiences, I really no longer have fear or anxiety of what’s to come.

I am relieved to hear that you’ve contacted Hospice. As Sue said in the post above, a hospice care person will come daily for support and will do their utmost to assure that you are pain and anxiety free, that you remain comfortable and will help you and your family any way they can. This allows you the chance to just focus on your family and the time you have remaining. No one can tell you exactly what you’ll experience but with all the family I’ve been with in their final moments, hospice made sure that there was a sense of calmness and compassion.

Is this a difficult conversation for family and friends? Or can you speak freely with them about what you’re facing?

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