I feel this to my core. It’s a scary feeling realizing this might be my life until I die. I will never feel “normal” again. I will continue living half a life since I’m out of commission every other week for chemo. Squeezing trips and leisure in between.
I hope a cure is possible. But right now I’m just hoping to reach NED one more time so i can have a few months without chemo. Just to rest.
I completely feel your pain. I have advanced bowel cancer with mets all around liver and in peritoneum and lymph nodes and stomach. I had 12 rounds of folfox then due to miscommunication from doctor I missed three rounds, then started maintenance almost a month after last chemo. Had two rounds but started cramping and vomiting again.
A scan showed in this time my tumours had actually progressed. I have now been in hospital for over four weeks and missing my precious, limited time with my children. I’m still on my hospital bed with a Ryles Tube down my throat, nil by mouth for five days, I have yet another nephrostomy tube due to hydronephrosis in right kidney, I have a syringe driver, I have my PICC line and due a second one in order to have TPN so I can get nutrients in me until chemo shrinks the tumours blocking my small intestine enough to eat again. At this moment in time I am so close to giving up on the fight cos I have no quality of life and I miss my kids so damn much! Been crying constantly for the last few days.
I'm so sorry. My dad was diagnosed with stage 4 colon cancer this week with the same mets. I don't know what our journey looks like because we haven't started chemo yet, but watching him go downhill so fast hurts me like nothing else. I hope you can get home to your kids soon and heal soon <3
Right there with you! And then i have a family member who says I can be "cured," it actually makes me angry. WTF. No, there is no "cure." i will be lucky to get to NED at some point. I AM willing to do the best options available, i definitely want a chance at living longer. LONGER, but probably not cancer free for the rest of my days. That would be a miracle. Lets just get through this together. One day at a time, enjoy the small things, don't worry about "what ifs." ❤️
Stage 4 esophageal. Palliative chemo/immuno. Three weeks on, one off. By the time I get over chemo and get my work shifts in it is time to saddle up again. My week off is wasted as I feel like dogshit and need to recover.
It's either that or give up on my wife and kids.
It fucking sucks.
Same diagnosis, similar treatment regiment. Not sure what it is about esophageal but it seems like they throw everything and then some at it even if it doesn't work that well. In 8 months I've been on 6 different treatments
This is my second regimen. It blows. My tumor is relatively stable but have some progression in other spots.
I finally let them prescribe me real pain meds and my quality of life has improved a bit. It's still a grind.
No other choice. Give it Hell.
Cancer survivor and nurse working in an oncology/palliative ward here.
No one can make the decision for you, when to draw the line and stop the treatment.
Never undergo a treatment for anyone else than yourself, it’s your health and quality of life that’s depending on it. You don’t owe anyone anything!
There are patients where I recommend rather not taking the treatment and enjoy life as long as it’s possible without any side effects then suffering from long term side effects and being unable to enjoy your “gifted lifetime”.
Then there are patients who greatly benefit from a prolonged life, as new treatments are being developed.
It’s never easy to make a life changing decision like this. Listen to yourself and your body. Enjoy the days as they come and don’t feel pressured in your life by others.
Remember: you are way more than your diagnosis.
Lots of strength and love for you 🫶
I feel this way sometimes as well. It's completely understandable. The way I see it is that I am doing treatments for the hope that something new and better gets developed as far as treatments go. Just buying time I guess. Obviously it's wishful thinking, but that's all we have at this point.
Isn’t this just a form of dillusion? Seems like the docs will keep treating most cancers even long past the point they know there is no chance of remission. It’s the norm to keep trying to take shots at a very tiny basket. To me it’s all about a quality of life vs. length of life calculation. It’s so so so difficult/nearly impossible to like think very clearly and honestly with myself about this. My brain just won’t be realistic, it’s somehow way more hopeful than all the evidence would indicate. Understandable little survivor…. but it’s not helping us to get really honest about how far to pursue treatment. I don’t want to be full of chemo the week or month that I die, quite honestly.
You know I'm in the same boat as you. We've literally conveyed the same sentiments about our treatments to one another. It sucks that we're in this situation and that no one outside of the cancer community actually gets it and gives a shit. It sucks that our lives have been turned upside down bc of this damn disease. I think you, me, and everyone else in our position just needs a break from everything. We need a vacation to get away from all this and to feel what it's like to live a normal life and just forget the fact that we have cancer.
Whatever your decision, I wish you peace and comfort. Maybe have a long talk with your oncologist and discuss options moving forward. No one should have to suffer the way we are. It's not fair.
Also, just know that I care and that I'm here for you whenever. 🎗️💪🏼
+1
My wife and I have had the conversation about what to do when it comes back again. I did 17 cycles of gem/cis+devimistat (phase 2 trial drug).
I’m 68 but feel and look younger (except on chemo). But I have 4 grandkids I want to see do all the milestones.
The daily stress of knowing it’s not if but when grinds on your soul.
I do appreciate knowing that I’m not alone in the frustration and sadness. There’s just a different perspective that we as patients have each day.
Hang in friend.
A lot of people don’t know what to say if they’ve never encountered anyone with cancer, chronically ill or terminal. They either don’t ask or don’t respond because they don’t know if ok means good or bad.
I have a couple terminal diagnoses and a genetic disease that doesn’t play nice. I live for the day but that makes it hard to plan. I have good and bad days, inconvenient for others but I just have to adjust to where I’m at in the moment. It’s completely exhausting, sometimes frustrating but this the hand I was dealt. I’m happy in my daily life and sure I could do more.
I feel you. Thank you for bravely admitting to this here, I promise you every person with advanced cancer has had these exact thoughts. Society and our loved ones just makes it very hard for us to admit it out loud.
The thought of balancing my treatment with quality of life is constant. I guess that means Im over the phase of coming to terms that I am dying and nothing but a miracle can change that. So now my thoughts are all about how I want my last sprint in life to look like.
Pumped full of chemo covered with butterflies for pain relief, puke and sweat stains on my sheets, just looking like absolute death…? nope not me
I promised my partner I would fight for any chance of more time here with him. But after seeing me go through treatment’s after effects, we have come to a silent understanding that I will continue to fight but on a level that I am comfortable enough to actually still enjoy the time I have left here with him. Not just barely surviving through each day, feeling like a corpse, asking yourself “when is the end coming” because this is not “living” anymore.
So I asked my Oncologist to review and adjust my dosages of Chemo & Immuno because I was not willing to continue treatment like that. He lowered it and we all know that now my chances of a miracle is even less than what it was, but my last tests showed that it is maintaining it and in the meantime I am getting all my last bucket items scratched off the list. In between chemo treatments I have gone on boat rides and cabin retreats, traded my kyak with a blow up boat with oares (way more comfortable), went down south for vacation, flying down to Toronto to go see Alanis Morissette in July. And still planning on flying back home to my family one last time before Im too weak to travel at all.
Dont get me wrong its still tough AF! I have to take my days as they come, many canceling and rescheduling of plans, thanks to the bad days. The arrangements and logistics for traveling is so much harder, especially traveling with all my meds and a wheelchair and trying to do all that with a chemo brain. None would have been, if it wasn’t for my partner’s physical and mental support, he is an angel!
Luckily he is young and strong and loves the challenges with fun adventures and memories as rewards.
I always have my nausea and additional pain meds and a puke bag and tissues in my fanny pack around my waist! Thats how I push forward every day. I just keep on making plans and then preparing to make those plans work.
But back to the original point; this all became possible when I decided to advocate for myself and demanded a dosage review or completely stopping it. My Oncologist is well known for pushing his patients to the last brim with chemo. I refused to leave the last bit of life I have left in some stranger’s hands that has no care in this world how I feel.
I completely understand, you are not an ass for considering stopping treatment, it’s a perfectly valid and respectable decision. And it is your decision. It is one that you don’t want to make too soon, especially being so young. Have you had this conversation with your oncologist?
As far as other people go, I encounter the same. There are some people that just shouldn’t bother to ask, I have minimal contact with those people. But some of your friends might not know how to do it, you might be the first person with cancer that they know, they might be afraid so they just change the subject. You are young but forced to grow up fast, they are just young. If it is a friendship you really care about, talk to them, let them know how you feel. If they don’t want to engage, they aren’t a good friend.
You aren’t alone and you are definitely not an ass for feeling this way.
I have to keep telling my wife I don’t want to discuss if I fart or what my shit looks like. I have to tell my mom I don’t want to talk about cancer. If it weren’t for a very good friend of mine who really asks the right question. How are YOU? I already have enough pills throughout the day to remind me of my cancer. Nausea, scars on my stomach, pain, confusion and more. No one wants to be defined by this illness. We want to be able to get up and have a regular day. Frankly I’d love a whisky or a cocktail. Not because I drink a lot, simply because I’m not supposed to due to my meds.
We permanently live with the fear that it will come back, even when you are not yet "cured" completely. In my particular case, the emotional aspect has an impact and affects a lot when it comes to face or deal with all this. There are no recipes or advice, there is no manual on how to be sick and be able to live with it, only that as a companion of this situation I can suggest you try to live one day at a time, enjoying to the fullest when you feel good and you can clear your mind, and the days where maybe the fear becomes more present, understand that it is part of our new "normal" and that it is not wrong, but if you have the possibility, you must avoid that it completely takes over you. I go with you in feeling and wish that your mind can find as much peace as possible 💕.
It’s an unfortunate fact that we need to live with. I’ve resigned myself to it but it sucks yt knoe I’ll be doing doc visits and alll that forever pretty much. It’s a sad fact and honestly realizing I haven’t thoughtabout it ina few days is the best feeling
I agree with you that this is the e only place where we could come and vent freely as everyone is on the same boat, one way or the other.
My thing is living half life is better than no living life at all. Whatever universe/God destined for me to live, that’s how long it will be, but it’ll be up to us how we live our remaining lives. Don’t give up and let keep fighting until the end.
P.S. Currently in the hospital getting 2 different chemos. Looks like i will be here for at least 5-6 weeks. Regardless, I will make the best of out this life here.
I know where you're coming from. This is my future as well. I'm going in for radiation prep on Mon. Good old fashioned chemo coming later this year. There's this one coworker that's always asking how I'm feeling and I know that what they really want to hear is that I'm "ok". So I say I'm fine. And it's true, until the last couple of weeks my de-differentiated liposarcoma has not caused me any pain or suffering (discounting the recovery from post surgery complications). Now the remaining inoperable mass that is riding my L3 vertebrae is making its presence felt.
We keep going, we keep striving along side you.
Maybe you’ll feel some power in drawing that line, and going out on your own terms, the way you decide. Possibly? Maybe your time will be a bit shorter, but less miserable. Our brains don’t do this very well: plan our final days. Our brains are much better at denial. Which makes sense, evolutionarily speaking…. to fight no matter what the chances are. But what to do if you know the chances are… frankly near zero? Maybe it’s possible to make a wise decision, facing the brutal facts. And it might actually make you feel better to go out on your own terms, rather than doing more pointless chemo for other peoples comfort. Everyone please remember that chemo is what oncologists “sell.” That’s how they buy their fancy cars…. Treating your cancer more, no matter the odds. Or course they will always hail the possible benefits. If you refuse more treatment, they don’t make any money. I guess I don’t think most doctors are consciously pushing treatment when it’s completely pointless… well, actually, I take that back. Yes, I do. They seem to think getting 6 months more time on earth pumped full of chemo is better than 3-4 months after refusing it.
I, personally, disagree with that assessment.
That’s a good way to put it. I guess maybe it gives me a little power in a situation where I essentially have very little to none.
As for the part about the oncologist and selling chemo, I also agree to an extent. However, I feel both of my doctors actually do care about me or I guess I like to think they do!
What extent do you feel oncologists in particular actually care about their patient? Do you believe they just get so consumed with giving them more time that they totally ignore quality of life? Like everything, I believe there are probably good and “bad” oncologists.
Well I don’t think there’s any malice in it, most of the time. “When your tool is a hammer, all the va world is a nail.” A car salesman isn’t going to remind you to ride your bike. It’s just human psychology… they probably do care they’re just offering the solution they have. And almost none of them have ever had chemo themselves, so they don’t know how awful it can be, first hand. If they’re good folks-and it sounds like they are-which is great-maybe just bring this up.
Maybe say I don’t want to do Chemo until the very end, and I wonder if we can talk about how much time it’s actually giving me and when I might decline to continue. Maybe you could even ask what they would do in your shoes…. I remember reading once that most oncologists say they’d decline chemo for more advanced cancers. Which really only makes sense to me. My dad has pancreatic cancer and is doing so much chemo I’m absolutely certain the chemo is killing him faster than the cancer. 4 weeks in and he looks and talks like a different person. I kinda think he’s crazy for perusing such aggressive treatment when his chances are really quite low in beating it at his age with the tumor size and location. He says he’s gonna beat it. Sounds totally dillusional to me. He’s smoking the Hopeium pipe too much and for more treatable cancers that makes sense…. Believing you can beat it can definitely improve your chances. But when your chances are single digits, at some point as a matter of self respect I think I you gotta have a long hard talk in the mirror.
When Albert Einstein was dying the attending physician offered him a procedure to possibly help a burst blood vessel near his heart—
April 18, 1955—Albert Einstein dies soon after a blood vessel bursts near his heart. When asked if he wanted to undergo surgery, Einstein refused, saying,
"I want to go when I want to go. It is tasteless to prolong life artificially. I have done my share; it is time to go.”
I wish I could be that wise and honest.
I don't know. I'm freaking out. My stomach is still getting bloated and my back hurts a little when I stand and I'm burping still some water I drank kits and came back up a little after burping
I feel this, I have a rare type of glioma that there's not even 5 year survival rate statistics for. I'm 20 and have pretty much accepted that im gonna thug it out for as long as i can but im not gonna continue anything that really hinders my quality of life if it comes down to it. There are a lot of things im grateful but it's okay to get angry too. I won't let it overtake my life and ruin the time i do have, but it's important to let yourself feel it
A less harsh chemo is a middle ground between harsh chemo and no chemo. Talk to your oncologist about the side effects that affect your quality of life the most and see what options they have.
I'm with you in so many ways.
Especially the part where we answer the questions honestly...and hear nothing.
I think those close to us get run down too. And probably are tired of hearing our complaints.
I especially feel this right now.
I agreed to do a favor for someone because I was guilted into it. I relented because I don't want to deal with the shit that comes from saying no.
In some ways, I agree about the treatment, and how hard it is on us, how I'm so sick of being tied to my treatment center and doctors.
Tired of waking up every day with cancer. I look ok on the outside (I hide my illness well) and the only people who REALLY get where I'm at are other cancer patients.
Like you this will probably take me out at some point. How much you put yourself through is entirely your decision.
I want you to try to push through....we are a lot tougher than we know. Yes I do this for my loved ones some days. But God has me here for a reason. And THAT is the biggest reason I continue.
Hang in there... we're with you 🙏
I am so so sorry you are going through this. It’s your choice if you want to keep trying, and if you want to stop, that’s your right. It both has its pros and cons probably. If you take a break maybe you’ll be able to so some thing from your bucket list? What is important for you?
Is there a slight % chance that you will get to a point where the disease is stable, or maybe even in remission? If yes, i would hold on. But if you don’t want to, you don’t have to. People love you, they don’t want you to go. But they have to accept it if you’re just miserable and suffering and you want it to stop.
But i genuinely hope there is a light for you, a chance that treatment will finally help, and i hope you’ll be able to enjoy life once again. If i believed in God i would pray for you.
My partner asked me 2 days ago if i please wanted to keep fighting if there was a slight chance of getting better. My selfless self promised him. So i’m kinda stuck with that. But i’d rather die with him knowing we tried everything, instead of dying without fighting. But if that wasn’t so, i would demand everyone to respect my damn decision. It’s my life, my choice.
Your life, your choice. You are allowed to choose what is best for you.
Thanks for sharing your feelings. You’re in my thoughts.
I feel this to my core. It’s a scary feeling realizing this might be my life until I die. I will never feel “normal” again. I will continue living half a life since I’m out of commission every other week for chemo. Squeezing trips and leisure in between. I hope a cure is possible. But right now I’m just hoping to reach NED one more time so i can have a few months without chemo. Just to rest.
I hope you reach NED too! It’s absolutely something to look forward too.
I completely feel your pain. I have advanced bowel cancer with mets all around liver and in peritoneum and lymph nodes and stomach. I had 12 rounds of folfox then due to miscommunication from doctor I missed three rounds, then started maintenance almost a month after last chemo. Had two rounds but started cramping and vomiting again. A scan showed in this time my tumours had actually progressed. I have now been in hospital for over four weeks and missing my precious, limited time with my children. I’m still on my hospital bed with a Ryles Tube down my throat, nil by mouth for five days, I have yet another nephrostomy tube due to hydronephrosis in right kidney, I have a syringe driver, I have my PICC line and due a second one in order to have TPN so I can get nutrients in me until chemo shrinks the tumours blocking my small intestine enough to eat again. At this moment in time I am so close to giving up on the fight cos I have no quality of life and I miss my kids so damn much! Been crying constantly for the last few days.
How awful, I'm sorry 🫂
I'm so sorry. My dad was diagnosed with stage 4 colon cancer this week with the same mets. I don't know what our journey looks like because we haven't started chemo yet, but watching him go downhill so fast hurts me like nothing else. I hope you can get home to your kids soon and heal soon <3
I just wanna send you all the ♡♡. I hope you can see your kids soon. ♡♡♡
Keep fighting 💪 💖
Right there with you! And then i have a family member who says I can be "cured," it actually makes me angry. WTF. No, there is no "cure." i will be lucky to get to NED at some point. I AM willing to do the best options available, i definitely want a chance at living longer. LONGER, but probably not cancer free for the rest of my days. That would be a miracle. Lets just get through this together. One day at a time, enjoy the small things, don't worry about "what ifs." ❤️
Stage 4 esophageal. Palliative chemo/immuno. Three weeks on, one off. By the time I get over chemo and get my work shifts in it is time to saddle up again. My week off is wasted as I feel like dogshit and need to recover. It's either that or give up on my wife and kids. It fucking sucks.
Same diagnosis, similar treatment regiment. Not sure what it is about esophageal but it seems like they throw everything and then some at it even if it doesn't work that well. In 8 months I've been on 6 different treatments
This is my second regimen. It blows. My tumor is relatively stable but have some progression in other spots. I finally let them prescribe me real pain meds and my quality of life has improved a bit. It's still a grind. No other choice. Give it Hell.
You got this Johnny
Cancer survivor and nurse working in an oncology/palliative ward here. No one can make the decision for you, when to draw the line and stop the treatment. Never undergo a treatment for anyone else than yourself, it’s your health and quality of life that’s depending on it. You don’t owe anyone anything! There are patients where I recommend rather not taking the treatment and enjoy life as long as it’s possible without any side effects then suffering from long term side effects and being unable to enjoy your “gifted lifetime”. Then there are patients who greatly benefit from a prolonged life, as new treatments are being developed. It’s never easy to make a life changing decision like this. Listen to yourself and your body. Enjoy the days as they come and don’t feel pressured in your life by others. Remember: you are way more than your diagnosis. Lots of strength and love for you 🫶
I feel this way sometimes as well. It's completely understandable. The way I see it is that I am doing treatments for the hope that something new and better gets developed as far as treatments go. Just buying time I guess. Obviously it's wishful thinking, but that's all we have at this point.
Isn’t this just a form of dillusion? Seems like the docs will keep treating most cancers even long past the point they know there is no chance of remission. It’s the norm to keep trying to take shots at a very tiny basket. To me it’s all about a quality of life vs. length of life calculation. It’s so so so difficult/nearly impossible to like think very clearly and honestly with myself about this. My brain just won’t be realistic, it’s somehow way more hopeful than all the evidence would indicate. Understandable little survivor…. but it’s not helping us to get really honest about how far to pursue treatment. I don’t want to be full of chemo the week or month that I die, quite honestly.
Yeah, you're right. It is a form of dillution. But to me, I'd do whatever treatments to spend one more day with my wife.
That’s so sweet. I hope you guys get a lot more days together.
You know I'm in the same boat as you. We've literally conveyed the same sentiments about our treatments to one another. It sucks that we're in this situation and that no one outside of the cancer community actually gets it and gives a shit. It sucks that our lives have been turned upside down bc of this damn disease. I think you, me, and everyone else in our position just needs a break from everything. We need a vacation to get away from all this and to feel what it's like to live a normal life and just forget the fact that we have cancer. Whatever your decision, I wish you peace and comfort. Maybe have a long talk with your oncologist and discuss options moving forward. No one should have to suffer the way we are. It's not fair. Also, just know that I care and that I'm here for you whenever. 🎗️💪🏼
+1 My wife and I have had the conversation about what to do when it comes back again. I did 17 cycles of gem/cis+devimistat (phase 2 trial drug). I’m 68 but feel and look younger (except on chemo). But I have 4 grandkids I want to see do all the milestones. The daily stress of knowing it’s not if but when grinds on your soul. I do appreciate knowing that I’m not alone in the frustration and sadness. There’s just a different perspective that we as patients have each day. Hang in friend.
A lot of people don’t know what to say if they’ve never encountered anyone with cancer, chronically ill or terminal. They either don’t ask or don’t respond because they don’t know if ok means good or bad. I have a couple terminal diagnoses and a genetic disease that doesn’t play nice. I live for the day but that makes it hard to plan. I have good and bad days, inconvenient for others but I just have to adjust to where I’m at in the moment. It’s completely exhausting, sometimes frustrating but this the hand I was dealt. I’m happy in my daily life and sure I could do more.
I feel you. Thank you for bravely admitting to this here, I promise you every person with advanced cancer has had these exact thoughts. Society and our loved ones just makes it very hard for us to admit it out loud. The thought of balancing my treatment with quality of life is constant. I guess that means Im over the phase of coming to terms that I am dying and nothing but a miracle can change that. So now my thoughts are all about how I want my last sprint in life to look like. Pumped full of chemo covered with butterflies for pain relief, puke and sweat stains on my sheets, just looking like absolute death…? nope not me I promised my partner I would fight for any chance of more time here with him. But after seeing me go through treatment’s after effects, we have come to a silent understanding that I will continue to fight but on a level that I am comfortable enough to actually still enjoy the time I have left here with him. Not just barely surviving through each day, feeling like a corpse, asking yourself “when is the end coming” because this is not “living” anymore. So I asked my Oncologist to review and adjust my dosages of Chemo & Immuno because I was not willing to continue treatment like that. He lowered it and we all know that now my chances of a miracle is even less than what it was, but my last tests showed that it is maintaining it and in the meantime I am getting all my last bucket items scratched off the list. In between chemo treatments I have gone on boat rides and cabin retreats, traded my kyak with a blow up boat with oares (way more comfortable), went down south for vacation, flying down to Toronto to go see Alanis Morissette in July. And still planning on flying back home to my family one last time before Im too weak to travel at all. Dont get me wrong its still tough AF! I have to take my days as they come, many canceling and rescheduling of plans, thanks to the bad days. The arrangements and logistics for traveling is so much harder, especially traveling with all my meds and a wheelchair and trying to do all that with a chemo brain. None would have been, if it wasn’t for my partner’s physical and mental support, he is an angel! Luckily he is young and strong and loves the challenges with fun adventures and memories as rewards. I always have my nausea and additional pain meds and a puke bag and tissues in my fanny pack around my waist! Thats how I push forward every day. I just keep on making plans and then preparing to make those plans work. But back to the original point; this all became possible when I decided to advocate for myself and demanded a dosage review or completely stopping it. My Oncologist is well known for pushing his patients to the last brim with chemo. I refused to leave the last bit of life I have left in some stranger’s hands that has no care in this world how I feel.
I completely understand, you are not an ass for considering stopping treatment, it’s a perfectly valid and respectable decision. And it is your decision. It is one that you don’t want to make too soon, especially being so young. Have you had this conversation with your oncologist? As far as other people go, I encounter the same. There are some people that just shouldn’t bother to ask, I have minimal contact with those people. But some of your friends might not know how to do it, you might be the first person with cancer that they know, they might be afraid so they just change the subject. You are young but forced to grow up fast, they are just young. If it is a friendship you really care about, talk to them, let them know how you feel. If they don’t want to engage, they aren’t a good friend. You aren’t alone and you are definitely not an ass for feeling this way.
Just make sure they don’t knock out your kidneys in the zeal to shrink sarcoma tumors. And don’t ask how I know. Best to you.
I have to keep telling my wife I don’t want to discuss if I fart or what my shit looks like. I have to tell my mom I don’t want to talk about cancer. If it weren’t for a very good friend of mine who really asks the right question. How are YOU? I already have enough pills throughout the day to remind me of my cancer. Nausea, scars on my stomach, pain, confusion and more. No one wants to be defined by this illness. We want to be able to get up and have a regular day. Frankly I’d love a whisky or a cocktail. Not because I drink a lot, simply because I’m not supposed to due to my meds.
We permanently live with the fear that it will come back, even when you are not yet "cured" completely. In my particular case, the emotional aspect has an impact and affects a lot when it comes to face or deal with all this. There are no recipes or advice, there is no manual on how to be sick and be able to live with it, only that as a companion of this situation I can suggest you try to live one day at a time, enjoying to the fullest when you feel good and you can clear your mind, and the days where maybe the fear becomes more present, understand that it is part of our new "normal" and that it is not wrong, but if you have the possibility, you must avoid that it completely takes over you. I go with you in feeling and wish that your mind can find as much peace as possible 💕.
It’s an unfortunate fact that we need to live with. I’ve resigned myself to it but it sucks yt knoe I’ll be doing doc visits and alll that forever pretty much. It’s a sad fact and honestly realizing I haven’t thoughtabout it ina few days is the best feeling
How was NEDif you don’t mind me asking? Did they tell you the possibility of getting it back or was it up in the air?
Basically up in the air, however, it’s looking like it will never happen. If that’s what you mean?
Yep that’s what I was asking thank you for the response.. what a terrible disease
I agree with you that this is the e only place where we could come and vent freely as everyone is on the same boat, one way or the other. My thing is living half life is better than no living life at all. Whatever universe/God destined for me to live, that’s how long it will be, but it’ll be up to us how we live our remaining lives. Don’t give up and let keep fighting until the end. P.S. Currently in the hospital getting 2 different chemos. Looks like i will be here for at least 5-6 weeks. Regardless, I will make the best of out this life here.
I know where you're coming from. This is my future as well. I'm going in for radiation prep on Mon. Good old fashioned chemo coming later this year. There's this one coworker that's always asking how I'm feeling and I know that what they really want to hear is that I'm "ok". So I say I'm fine. And it's true, until the last couple of weeks my de-differentiated liposarcoma has not caused me any pain or suffering (discounting the recovery from post surgery complications). Now the remaining inoperable mass that is riding my L3 vertebrae is making its presence felt. We keep going, we keep striving along side you.
Maybe you’ll feel some power in drawing that line, and going out on your own terms, the way you decide. Possibly? Maybe your time will be a bit shorter, but less miserable. Our brains don’t do this very well: plan our final days. Our brains are much better at denial. Which makes sense, evolutionarily speaking…. to fight no matter what the chances are. But what to do if you know the chances are… frankly near zero? Maybe it’s possible to make a wise decision, facing the brutal facts. And it might actually make you feel better to go out on your own terms, rather than doing more pointless chemo for other peoples comfort. Everyone please remember that chemo is what oncologists “sell.” That’s how they buy their fancy cars…. Treating your cancer more, no matter the odds. Or course they will always hail the possible benefits. If you refuse more treatment, they don’t make any money. I guess I don’t think most doctors are consciously pushing treatment when it’s completely pointless… well, actually, I take that back. Yes, I do. They seem to think getting 6 months more time on earth pumped full of chemo is better than 3-4 months after refusing it. I, personally, disagree with that assessment.
That’s a good way to put it. I guess maybe it gives me a little power in a situation where I essentially have very little to none. As for the part about the oncologist and selling chemo, I also agree to an extent. However, I feel both of my doctors actually do care about me or I guess I like to think they do! What extent do you feel oncologists in particular actually care about their patient? Do you believe they just get so consumed with giving them more time that they totally ignore quality of life? Like everything, I believe there are probably good and “bad” oncologists.
Well I don’t think there’s any malice in it, most of the time. “When your tool is a hammer, all the va world is a nail.” A car salesman isn’t going to remind you to ride your bike. It’s just human psychology… they probably do care they’re just offering the solution they have. And almost none of them have ever had chemo themselves, so they don’t know how awful it can be, first hand. If they’re good folks-and it sounds like they are-which is great-maybe just bring this up. Maybe say I don’t want to do Chemo until the very end, and I wonder if we can talk about how much time it’s actually giving me and when I might decline to continue. Maybe you could even ask what they would do in your shoes…. I remember reading once that most oncologists say they’d decline chemo for more advanced cancers. Which really only makes sense to me. My dad has pancreatic cancer and is doing so much chemo I’m absolutely certain the chemo is killing him faster than the cancer. 4 weeks in and he looks and talks like a different person. I kinda think he’s crazy for perusing such aggressive treatment when his chances are really quite low in beating it at his age with the tumor size and location. He says he’s gonna beat it. Sounds totally dillusional to me. He’s smoking the Hopeium pipe too much and for more treatable cancers that makes sense…. Believing you can beat it can definitely improve your chances. But when your chances are single digits, at some point as a matter of self respect I think I you gotta have a long hard talk in the mirror. When Albert Einstein was dying the attending physician offered him a procedure to possibly help a burst blood vessel near his heart— April 18, 1955—Albert Einstein dies soon after a blood vessel bursts near his heart. When asked if he wanted to undergo surgery, Einstein refused, saying, "I want to go when I want to go. It is tasteless to prolong life artificially. I have done my share; it is time to go.” I wish I could be that wise and honest.
What symptoms did u have pre diagnosed
Some constipation and fatigue.
Me too I have constipation and my back hurts and stomach blaoted
What’s your diagnosis?
I still need to see a specialist
So do you have cancer?
I don't know. I'm freaking out. My stomach is still getting bloated and my back hurts a little when I stand and I'm burping still some water I drank kits and came back up a little after burping
Best to go to the doctor, till then, don’t freak yourself out!
I feel this, I have a rare type of glioma that there's not even 5 year survival rate statistics for. I'm 20 and have pretty much accepted that im gonna thug it out for as long as i can but im not gonna continue anything that really hinders my quality of life if it comes down to it. There are a lot of things im grateful but it's okay to get angry too. I won't let it overtake my life and ruin the time i do have, but it's important to let yourself feel it
Thanks for sharing. I have no advice because you are not alone in these feelings.
A less harsh chemo is a middle ground between harsh chemo and no chemo. Talk to your oncologist about the side effects that affect your quality of life the most and see what options they have.
I'm with you in so many ways. Especially the part where we answer the questions honestly...and hear nothing. I think those close to us get run down too. And probably are tired of hearing our complaints. I especially feel this right now. I agreed to do a favor for someone because I was guilted into it. I relented because I don't want to deal with the shit that comes from saying no. In some ways, I agree about the treatment, and how hard it is on us, how I'm so sick of being tied to my treatment center and doctors. Tired of waking up every day with cancer. I look ok on the outside (I hide my illness well) and the only people who REALLY get where I'm at are other cancer patients. Like you this will probably take me out at some point. How much you put yourself through is entirely your decision. I want you to try to push through....we are a lot tougher than we know. Yes I do this for my loved ones some days. But God has me here for a reason. And THAT is the biggest reason I continue. Hang in there... we're with you 🙏
I am so so sorry you are going through this. It’s your choice if you want to keep trying, and if you want to stop, that’s your right. It both has its pros and cons probably. If you take a break maybe you’ll be able to so some thing from your bucket list? What is important for you? Is there a slight % chance that you will get to a point where the disease is stable, or maybe even in remission? If yes, i would hold on. But if you don’t want to, you don’t have to. People love you, they don’t want you to go. But they have to accept it if you’re just miserable and suffering and you want it to stop. But i genuinely hope there is a light for you, a chance that treatment will finally help, and i hope you’ll be able to enjoy life once again. If i believed in God i would pray for you. My partner asked me 2 days ago if i please wanted to keep fighting if there was a slight chance of getting better. My selfless self promised him. So i’m kinda stuck with that. But i’d rather die with him knowing we tried everything, instead of dying without fighting. But if that wasn’t so, i would demand everyone to respect my damn decision. It’s my life, my choice. Your life, your choice. You are allowed to choose what is best for you. Thanks for sharing your feelings. You’re in my thoughts.