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SevenYearsToday

What is it like?

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Hi everyone - 

I'm new. I posted my introduction today.

I know this isn't a topic everyone wants to discuss or talk about, but lately have been thinking a lot about what the final few months of my life will be like. According to my latest scans (lung and brain) I should not be around much longer, but I also thought the same things 7 years ago. For some reason it feels different this time and it could simply be because I've went through 4 different chemos and 5 radiations to the brain. I'm only 34 and really do not want to leave this world. I did ask my radiologist how brain mets typically become fatal. She explained in much greater detail than I expected. I was sort of hoping she wasn't talking about my case or that will happen to me. Essentially the edema takes up too much volume and the only way out (to expand) is the spine which essentially stops life. So yeah, really hoping that's not my fate, but I guess it very well could be. So scary!

I want to read more about what it might be like and how will I know when I have a year left, 6 months left, 3 months left, 30 days, 2 weeks, 2 days, final hours? I guess it is very different for everyone or is it? I mean, there must be others with lung cancer with brain mets, like me? I read a book by Paul Kalanithi and this helped somewhat. I do not want to ruin the book for anyone so I will not discuss any further.

My point, is, I am hoping to find someone somewhat similar to my case in these forums or a book recommendation that sounds similar to my situation and learn about the final year and so forth. 

You all must know that the doctors are very careful not to place numbers on someone life. I imagine if I had a few months left they would just tell me, but I don't even know how that conversation will go. My oncologist even told me a few months ago that i have already beaten every odd imaginable. So, yes, I'm very grateful for that.

If you are willing to help me understand the final year, months, days, hours I would very much appreciate it.

I'm also surprised that my metastatic lung cancer has not traveled to any other part of my body, just one lung and brain. Very important parts of my body, but none the less, I've been living with stage 4 cancer for 7 years. That is odd. You know how many times someone has offered me the latest research on the greatest and full proof herbal program - too many to ever count. I have tried zero of them.

Anyway - just venting a bit. If I do not receive answers from this forum about this subject and this maybe morbid question of mine, then I will stick around and provide updates along the way to maybe help someone answer this question when I'm long gone.

:)

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I don't think it's necessarily "morbid" to think about death when you have a life-threatening illness.  And I think it's natural to want to know how it might "go" if you wind up eventually out of reasonable treatment options.

I was curious, myself.  I tried googling "what it's like to die from cancer" and found there are a LOT of articles.  Some are written by (or are interviews with) people who are, themselves, dying, and others are by doctors or caregivers.  You might try searching that way.  

I hope your actual encounter with the inevitable (for all of us, cancer or not) is a long way off, though, and that you continue to have a mostly-good life in the meantime.

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I appreciate this post more than you know. First - I am so sorry that you are going through this, and I personally am not going through it but my husband is - and I have felt like a black widow wondering those things. He also has small cell stage 4 7 brain mets and in his lung. It has been “stable” not gone for 6 months and he has had WBRT and 5 cycles of chemo. 

 

I was was told by very reputable dr’s 6-12 months. He has lost almost 100 pounds and now has high calcium and paraneoplastic syndrome. And I keep wondering the same things like what does the end look like. What ultimately will end his time with me and his children? 

So I just want to say thank you for asking these questions and I truly hope you get the answers you need. Actually if I am hoping for things I hope you get another 7 years. My thoughts and prayers are with you and your family.

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Hi sevenyearstoday

You are too young. I am so sorry but life is all about struggle and heart breaks I guess. I will definilty pray for you. As to answer your question, I have couple of people in my family who died from cancer. I can tell you from my experie ce that they were very peaceful during their last days here. They didn't seem to be in any pain or discomfort. They were actually gone long before they took their last breath. They were already into their  world which we wouldn't know. We're they dreaming or experiencing some deja vu apparently we will never know. 

We all have to go one day or the other. So this question that you have asked is something which all need to think about. On the flip side, some people get to prepare for their death others don't get chance even to say  goodbye to their loved ones. 

I am so sorry dear. Your post moved me to tears. Its never easy to face our mortality. 

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You are amazing! What a fighter! I've read your other posts and wish that I had a magic wand for you.  I understand your questions about what your future and death may look like.  I do not have lung cancer, nor do I have any diagnosed immediate health threats.  But I've gone through the death of my grandparents, my mom's best friend and uncle- 3 from lung cancer, the other from congestive heart failure from COPD.  My mom now has advanced stage lung cancer and has been battling since 2015.  Like you, I've thought a lot about death.  But with these thoughts, I always come back to the life there is to live before death.  My mom's cancer diagnosis really changed how both her and I look at everyday life.  It's such a joy to hear her comment on how pretty the sky is today or laugh about the squirrels in her back yard.  I started appreciating the "little" things as well.  I guess my message is that none of know how we are going to die or when.  And at the end of the day, does that really matter? I don't think it matters as much as all of the moments before we die - how we live our life.  In our fast-paced world, I think it's easy to get caught up in it all and forget about all of the little things that make our day great.  I hope you can focus on the little things as much as all of this cancer stuff.  

On a different note, at the end of April, LUNGevity is holding their International Survivor's Summit (formerly called the HOPE Summit) in WA DC.  I see you are just a short flight away from DC.  I am bringing this up because my mom and I attended for the first time last year.  It was absolutely amazing and exactly what my mom needed to push forward through her treatments.  I was expecting to see most people around my mom's age and older.  But to my surprise, there were many women around your age who were in all stages of treatment and recovery.  If it's something you haven't attended before, I really suggest trying it out.  It was the most uplifting and informative 2 days I have ever had.  My mom saw that she was not alone. All of her experience with lung cancer resulted in the deaths of those she loved most.  At the conference, she saw the complete opposite and met some wonderful people.  Here is the website if you want to check it out.   here.   Here you will be able to check out the Survivor's Summit, as well as, regional HOPE Summits - there was one in Chicago last year, perhaps there will be another this year.  

Hope to see you at the conference!

Take Care,

Steff

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Thank you for these replies. I can't believe I never thought of reaching out to an online support forum like this before. It is very comforting. Sometimes you think you are all alone but with so many people on this earth you certainly share similar experiences.

I wish we knew what happens after death. While I find myself knowing how I will die, I do not like knowing for certainty what will happen. I very much want to cling to the notion that something spiritual will happen. Wouldn't that be amazing knowing that when you die it's only death in the physical sense? That would be so comforting. I hate the opposite of this, the idea of dying and then nothing happening. It even sounds odd just saying that. I take comfort in the spiritual side. It gives me peace, but then again, if nothing happens, I would still find a peace in knowing that I lived a good life.

I reread my initial post and sometimes feel like abandoning this question/thought/concern all together. Meaning, I put the question out there and then never reflect on it again. Sort of like when you feel wronged in the world so you write a strongly worded letter to that person or company but never actually send it because just writing it made you feel better...

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I've written SO many letters I never sent.  It does feel good to just put the thoughts "out there."  And I think it is one of the advantages of forums like this.  You can say pretty much anything about how you feel because nothing is "right" or "wrong"--you feel how you feel.  But it is helpful sometimes to get a fresh perspective from others--maybe enabling you to think about something in a different way.  

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My stepfather died of lung cancer with brain and spinal mets in 1998. After a year of chemo and radiation, his oncologists said there was nothing more they could do and recommended hospice. He needed more care than my mother could give him so she got him into a nursing home near their home and had hospice come in daily. The first few days there he only wanted to taste food, not eat it - he would take a bite or two of fruit or a cookie. The home was wonderful - they brought fruit platters with all different kinds of fruit to try to tempt him. I brought cookies. Within 5 days of arriving there, he no longer wanted anything to eat. He became unconscious within a day or so after that. After two days in a coma, he died peacefully. There was no pain medicine needed once he became unconscious.

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Hi SevenYearsToday,

I am so sorry to hear of your diagnosis especially at your young age.  My dad is currently in hospice care for nsclc and brain mets.  He is 69..and will hopefully see his 70th birthday on March 19.

My dad seems to be going down hill fast.  This all started last May when he had trouble walking, massive headaches, and double vision.  After going to emerg, they discovered he had a brain tumor on his cerebellum.  7 days later he had surgery.  They could not remove all of it because of where it was.  Every since that surgery he has had trouble walking, double vision and hearing loss. 

The pathologist told us right after the surgery that this was a secondary tumor...3-4 weeks later we were told he had nsclc.

He had radiation where the tumor was and then chemo for the lung cancer.  We found out early January, that the chemo was not working and the lung tumor was getting bigger and it spread within that lung and he now had many brain mets.  Just before Christmas he kept falling and collapsing...the oncologist ordered an MRI and CT which is how they discovered more brain mets etc.  We saw the brain oncologist and he suggested WBRT, so my dad did 10 days of that.  That was mid Jan-beginning of Feb.  Ever since that WBRT he has gone down hill.  Within 2 weeks he went from walking with a walker to not being able to bear weight.  My mother and I tried to transfer him to a wheelchair and that went well for about 10 days and then he got progressively worse where now he cannot even bear weight so he is bedridden.  About 5 days ago he was up for almost 3 days straight, hallucinating and talking to people from work that weren't there and just acting bizarre.  He was on palliative home care so the nurse suggested moving him to hospice because it was really becoming too much for me and my mom to handle since he was immobile.  Once he got into hospice he slept for 3 days straight, no food or fluids and basically in and out of sleep for seconds here and there.  I honestly thought omg, this is it.  2 days ago, he actually was awake and aware and reached for a drink...I started crying with joy...he had a lot of fluid considering he hasn't had anything for 3 days and a few bites of applesauce.  Today he was back to a sleep state with little fluid but at least some.  He is becoming more and more immobile...he cannot shift up on the bed by himself and he hangs on to the hospital bed to help himself roll over.  His speech today was so bad, I could barely make out what he was saying and he still struggles to hear.  He can hear sometimes better than others.  He has lost so much weight...he was never a big guy to begin with but he actually looks like a cancer patient now...literally skin and bones and no hair.  My heart breaks for him being in this position.  I think he could handle the lung cancer but the brain cancer seems to be so debilitating because he is now bedridden etc.  If he could get up and move around, we could have kept it at home which were his wishes.  He doesn't say much but the other day he said he was so uncomfortable and is whole body ached...don't know if that was from being in bed for a few days or pain from the cancer.  I've also noticed his breathing is sometimes bad especially if he tries to turn himself on his side it will be hard loud breathing, then it resumes to normal.

I didn't know what to expect from all this and how the end would look like.  Its just awful seeing someone you love be in a helpless position.  I've heard my dad say things that I wish I never heard...the other night he told my mother, I just want to die.  Again, I don't know what he is feeling but I think he was very nauseous.  I don't know if he is in any other pain, I've asked and he just says I do not feel good.  He doesn't say too much about anything and I don't ask.  I don't even know what to say to him.

When I ask the nurses, they say everyone is different.  Like you, I would like to know.  I've googled, I've tried to read about end of life, but everyone is different.  My dad does seem to be going downhill fast.  When he saw the lung oncologist beginning of January, he said without trying immunotherapy you have approx. 3-4 months based on stats.  I was really hoping he was going to try immunotherapy (opdivo) but he collapsed in Feb and after going to emerg and doing a chest xray they referred him to palliative care and when my mother said we had an appt with the oncologist in a few days, they replied with there is no point, we are providing care moving forward so the xray or scan must have been bad...I'm not sure what they did at emerg.

The nurse told me today that as it progresses the good days will get shorter and shorter until there are no more good days left...he will eventually just be sleeping and not wake up and then just pass away.

Is immunotherapy an option?  I've read many good things about immunotherapy.

I hope and pray that this is all different for you.  Like I keep hearing, everyone's case is different.

I am going to look into this book When Breath Becomes Air. 

Good luck with your journey and please feel free to ask me anything.  I will answer your questions if I can.

Michelle

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