a message for Chemosmoker
You say that you are only doing palliative care. Are you aware that the chemo given for stage iv's is deemed palliative? I do understand your reluctance to venture down that road. Chemo is no fun. There are lots of side effects, lots of drugs to battle those side effects, and usually even those come with more side effects! But also, there are several people who post here that are using a 'compromise' approach to chemo, and only taking small doses, or only using the one chemo, xeloda on a daily basis. These people seem to have a good quality of life, while keeping the cancer from growing and spreading. You may want to consider something like that.
However, that being said, there are benefits to having the big cannons dose of chemo. My husband Lee, also a stage ivb, with mets to the liver and lymph nodes went for 4 rounds of chemo starting in February of this year. When they did his scans in June, they discovered that the tumours had shrunk. Unfortunately by mid July they had grown back, but he did have several months of really good eating and quality time before that. Now we are into another round of chemo, which is not going well, it seems to be much harder this time around.
Please feel free to ask questions here, we are all happy to offer advice and just a shoulder to lean on when needed. Feel free to vent your frustrations, fears and anger here. We all understand.
It sounds like you have done your homework, and know your game plan. Please remember that there are several key things that you must do...... first, stay hydrated and well nourished. Try to get as much exercise as possible. Get a feeding tube put in ASAP. We had an almighty fight to get one for Lee, but the ball is finally moving, and he's scheduled for one next week. You may not need it right now, but be aware that at some point you may need it, and they won't do it if you are too weak. You don't have to use it, just think of it as an insurance policy.
And finally, live life to the fullest, because cancer or not, you just never know when your time will come. I think all of us here try to make the most of the time we have left with our loved ones. I'm sure you will be hearing from many of us, to welcome you and offer support.
Be strong, and welcome aboard
Chantal
wife of Lee, stage ivb
Comments
-
THANK YOU so much and so sorry I missed this reply!!
Chantal,
I cannot believe that with the time I spend here every day, reading and re-reading posts and replies, that I totally missed your post TO ME!!! LOL
I decided to scan down the list today and read some earlier posts, when suddenly I see "A message to Chemosmoker"!! What a pleasant surprise to wake to today.
Thank you so much for taking your time to write to me and offer so much great advice. I am sure I throw many for a loop, at least it seems that way. I am 43 and "refusing" treatment, as many will say. That's not the case, but I DO understand even their perspective.
I am very open-minded and have not closed any doors. I just didn't feel that chemo was right for me, at least not now. I have looked in to targeted radiation to my esophagus should swallowing become more difficult. As for now, I am still swallowing the exact same way I was a year ago when I first tried to eat my loaf of French bread, plain and fast, and hit a wall I know every esophagus/distal/stomach cancer patient at this stage know all too well. Since it hasn't progressed, and we are doing scans and tests despite no chemo, to monitor growth and changes, I am okay for now with my approach as my quality of life is almost what it was before I was diagnosed, save for heavy lifting and extreme physical activity. I am too guarded to try anything dangerous or risk not knowing when this spreads to bone or organ and gives me a problem I was not aware of or accelerated by overdoing it in any way.
One thing I am sure of, Lee is very lucky to have you at his side. This is no easy battle and I think the single most important ingredient seems to be having your spouse/partner/lover/best friend at our sides. I know I would not want to fight or try if I didn't have the love of my life reminding me WHY I am trying to outlast any statistics they have to throw at us!
I do think a lot of people misunderstand and think that I am "just wasting away" over here, since I don't have a power port, haven't started chemo, and am not receiving radiation yet. This is simply not the case. QUALITY of life was paramount to me, above everything else, including HOW LONG I last. It's a very hard balance. I'm not telling anyone here anything they haven't lived themselves I know. I just can't help but read even your experience with Lee, and feel that I have again made the right decision. My wife and I have everything we had before, including our intimacy. I KNOW this is all but impossible were I to be throwing up, fatigued, and all the many fun things that even low-dose chemo seems to offer. I am just not that person. I have NEVER handled nausea well at all. I didn't drink because of it. I have spent inordinate amounts of energy when sick throughout my life just to avoid ever throwing up, so to do anything that might cause that is beyond me. I have suffered bowel problem since I was pre-adolescent. The side effects of the narcotics are a welcome relief to my body. Strange advantage and I hope not TMI! (LOL)
I read that Lee started chemo, and it wasn't unbearable, but had side effects. I read on that round two has been much worse. I understand. I don't want to go there. I don't want to "make" myself sick in the name of healing or improving. Just too contradictory to my little brain. I have been offered palliative chemotherapy, and yes, I do understand that they offer that, and not much else to us stage IVb patients. EVERYTHING is palliative at our stage sadly as I know you know. The radiation is a possibility as it would literally be one or two shots of it at the area of the closure in my throat. But chemo is out. Best part is my oncologist is behind me 100% and is so wonderful, honest and supportive. I have also seen three onco's to get to her. I have seen two of the best thoracic surgeons in the state, and the top rated radiation oncologists as well. I have done so much research and homework to get to where I am with my decision. They have even offered me the only one drug and a week-long infusion rate either in-patient or with a pump. They have offered the choice of any chemotherapy drugs that I want to choose, at whatever infusion rate I want. That is still at none. SO I think I explained. Don't know that you wanted me too but I am enjoying correcting all of my many typos!
I love this site and the message boards. I can come here any time and KNOW that I am not alone, and learn something every time I come here. I am so grateful to you for writing to me, and to anyone and everyone who takes the time to read my rants, and also their posts and the sharing and quality caring that I watch going on here all the time. NO fighting and snipping and such a wonderfully supportive place! I love it. This is a gift that comes with the awful monster inside of us. There is always some lemonade somewhere.
The only horrible awful crappy part of all this for me is my wonderful beautiful best friend, my wife. This is SO terribly unfair to her, and I DO worry about robbing HER of more time with me by some of my choices. I am pretty sure she would not want me around at the expense of being myself; being so sick that she is watching me waste away in a hospital bed with no hope of recovery, just to say you get this many more days or that I am simply still here today. I would not want to do that to her and I don't think that is our goal. For now, things are as they were, and we are fighting this with good eating, hydration, pain medication and love. We will adjust as needed.
Again, thank you SO very much for taking time to write to me. I hope this wasn’t too much of a rambling!
I hope you and especially Lee continue to hang in there, and that he gets stronger and better every single day, and with every single dose. I will be praying for him. May God bless you both!
PS- It's Eric (aka Chemosmoker).0 -
Hi Ericchemosmoker said:THANK YOU so much and so sorry I missed this reply!!
Chantal,
I cannot believe that with the time I spend here every day, reading and re-reading posts and replies, that I totally missed your post TO ME!!! LOL
I decided to scan down the list today and read some earlier posts, when suddenly I see "A message to Chemosmoker"!! What a pleasant surprise to wake to today.
Thank you so much for taking your time to write to me and offer so much great advice. I am sure I throw many for a loop, at least it seems that way. I am 43 and "refusing" treatment, as many will say. That's not the case, but I DO understand even their perspective.
I am very open-minded and have not closed any doors. I just didn't feel that chemo was right for me, at least not now. I have looked in to targeted radiation to my esophagus should swallowing become more difficult. As for now, I am still swallowing the exact same way I was a year ago when I first tried to eat my loaf of French bread, plain and fast, and hit a wall I know every esophagus/distal/stomach cancer patient at this stage know all too well. Since it hasn't progressed, and we are doing scans and tests despite no chemo, to monitor growth and changes, I am okay for now with my approach as my quality of life is almost what it was before I was diagnosed, save for heavy lifting and extreme physical activity. I am too guarded to try anything dangerous or risk not knowing when this spreads to bone or organ and gives me a problem I was not aware of or accelerated by overdoing it in any way.
One thing I am sure of, Lee is very lucky to have you at his side. This is no easy battle and I think the single most important ingredient seems to be having your spouse/partner/lover/best friend at our sides. I know I would not want to fight or try if I didn't have the love of my life reminding me WHY I am trying to outlast any statistics they have to throw at us!
I do think a lot of people misunderstand and think that I am "just wasting away" over here, since I don't have a power port, haven't started chemo, and am not receiving radiation yet. This is simply not the case. QUALITY of life was paramount to me, above everything else, including HOW LONG I last. It's a very hard balance. I'm not telling anyone here anything they haven't lived themselves I know. I just can't help but read even your experience with Lee, and feel that I have again made the right decision. My wife and I have everything we had before, including our intimacy. I KNOW this is all but impossible were I to be throwing up, fatigued, and all the many fun things that even low-dose chemo seems to offer. I am just not that person. I have NEVER handled nausea well at all. I didn't drink because of it. I have spent inordinate amounts of energy when sick throughout my life just to avoid ever throwing up, so to do anything that might cause that is beyond me. I have suffered bowel problem since I was pre-adolescent. The side effects of the narcotics are a welcome relief to my body. Strange advantage and I hope not TMI! (LOL)
I read that Lee started chemo, and it wasn't unbearable, but had side effects. I read on that round two has been much worse. I understand. I don't want to go there. I don't want to "make" myself sick in the name of healing or improving. Just too contradictory to my little brain. I have been offered palliative chemotherapy, and yes, I do understand that they offer that, and not much else to us stage IVb patients. EVERYTHING is palliative at our stage sadly as I know you know. The radiation is a possibility as it would literally be one or two shots of it at the area of the closure in my throat. But chemo is out. Best part is my oncologist is behind me 100% and is so wonderful, honest and supportive. I have also seen three onco's to get to her. I have seen two of the best thoracic surgeons in the state, and the top rated radiation oncologists as well. I have done so much research and homework to get to where I am with my decision. They have even offered me the only one drug and a week-long infusion rate either in-patient or with a pump. They have offered the choice of any chemotherapy drugs that I want to choose, at whatever infusion rate I want. That is still at none. SO I think I explained. Don't know that you wanted me too but I am enjoying correcting all of my many typos!
I love this site and the message boards. I can come here any time and KNOW that I am not alone, and learn something every time I come here. I am so grateful to you for writing to me, and to anyone and everyone who takes the time to read my rants, and also their posts and the sharing and quality caring that I watch going on here all the time. NO fighting and snipping and such a wonderfully supportive place! I love it. This is a gift that comes with the awful monster inside of us. There is always some lemonade somewhere.
The only horrible awful crappy part of all this for me is my wonderful beautiful best friend, my wife. This is SO terribly unfair to her, and I DO worry about robbing HER of more time with me by some of my choices. I am pretty sure she would not want me around at the expense of being myself; being so sick that she is watching me waste away in a hospital bed with no hope of recovery, just to say you get this many more days or that I am simply still here today. I would not want to do that to her and I don't think that is our goal. For now, things are as they were, and we are fighting this with good eating, hydration, pain medication and love. We will adjust as needed.
Again, thank you SO very much for taking time to write to me. I hope this wasn’t too much of a rambling!
I hope you and especially Lee continue to hang in there, and that he gets stronger and better every single day, and with every single dose. I will be praying for him. May God bless you both!
PS- It's Eric (aka Chemosmoker).
I'm so glad you are still reading here. Many people seem to come on for a day or two, then hit the highway. I guess sometimes it can be just too much reality.
I do applaud you for your choices. Lee and I wonder almost daily, what if..... what if he didn't do chemo? what if he took a shorter chemo break? What if he stops chemo? And on and on endlessly. As you read, he started another cycle of chemo, which was cut short after a week due to the advent of the gj tube placement. He is supposed to go back for another round next Thursday. This was a huge debate, and a difficult decision. He was so very sick, which could be just the ravages of chemo, or compounded with the fact that he was severely dehydrated and starving. We had a week of hydration, followed by the feeding tube surgery. So now he's well hydrated and fed, so we hope that the chemo won't be as harsh.
This subject has been debated over and over on this site, 'how much is too much, and when do you know when to call it quits and let nature take it's course. He has been bouncing back and forth, and as of this moment he's willing to give it another shot. He asks me my opinion, and frankly I just can't answer. I don't want him to suffer during chemo, and have little quality..... but I also don't want him to remove his only chance for just a bit more time to be with me. Selfish I know, but I can't even imagine life without him. It seems to be a no win situation. How do you choose? Everyone says that they'd rather have 3 good months than 6 bad months, but when you actually have to make the decision, it's a whole different story. What if he faces a few bad months of chemo, and the tumors shrink and he has 6 more good months? What if the chemo does not work and he has 3 bad months, what if he has no chemo and 3 good months, what if he has no chemo and has 2 weeks???? It's all a big gamble, and there does not seem to be a jackpot at the end.
You are so right though Eric. His (our) quality of life has suffered tremendously, since day one of chemo. He of course has good days, but the bad days often seem to outnumber the good ones. It seems that for every step forward, we take 2 steps back. I often wonder what would have happened if he chose to go down the path that you chose. We are still madly in love, but sometimes it seems that all we talk about is cancer, treatment, side effects, pills, and my constant nagging for him to eat and drink. Some days I feel like a nurse, not a loving wife. I am happy to do whatever I can for him, but I do miss our previous life, when we had fun, acted silly and had few worries. You are so right, your wife is being robbed. It's terribly unfair, both to you and to her.
Again, I wish you all the best, and congratulate you on your strength and convictions. Enjoy every moment with your beautiful wife. Take care and keep us posted on how you're doing!
Chantal0 -
Know the blog so well....and didn't realize...Daisylin said:Hi Eric
I'm so glad you are still reading here. Many people seem to come on for a day or two, then hit the highway. I guess sometimes it can be just too much reality.
I do applaud you for your choices. Lee and I wonder almost daily, what if..... what if he didn't do chemo? what if he took a shorter chemo break? What if he stops chemo? And on and on endlessly. As you read, he started another cycle of chemo, which was cut short after a week due to the advent of the gj tube placement. He is supposed to go back for another round next Thursday. This was a huge debate, and a difficult decision. He was so very sick, which could be just the ravages of chemo, or compounded with the fact that he was severely dehydrated and starving. We had a week of hydration, followed by the feeding tube surgery. So now he's well hydrated and fed, so we hope that the chemo won't be as harsh.
This subject has been debated over and over on this site, 'how much is too much, and when do you know when to call it quits and let nature take it's course. He has been bouncing back and forth, and as of this moment he's willing to give it another shot. He asks me my opinion, and frankly I just can't answer. I don't want him to suffer during chemo, and have little quality..... but I also don't want him to remove his only chance for just a bit more time to be with me. Selfish I know, but I can't even imagine life without him. It seems to be a no win situation. How do you choose? Everyone says that they'd rather have 3 good months than 6 bad months, but when you actually have to make the decision, it's a whole different story. What if he faces a few bad months of chemo, and the tumors shrink and he has 6 more good months? What if the chemo does not work and he has 3 bad months, what if he has no chemo and 3 good months, what if he has no chemo and has 2 weeks???? It's all a big gamble, and there does not seem to be a jackpot at the end.
You are so right though Eric. His (our) quality of life has suffered tremendously, since day one of chemo. He of course has good days, but the bad days often seem to outnumber the good ones. It seems that for every step forward, we take 2 steps back. I often wonder what would have happened if he chose to go down the path that you chose. We are still madly in love, but sometimes it seems that all we talk about is cancer, treatment, side effects, pills, and my constant nagging for him to eat and drink. Some days I feel like a nurse, not a loving wife. I am happy to do whatever I can for him, but I do miss our previous life, when we had fun, acted silly and had few worries. You are so right, your wife is being robbed. It's terribly unfair, both to you and to her.
Again, I wish you all the best, and congratulate you on your strength and convictions. Enjoy every moment with your beautiful wife. Take care and keep us posted on how you're doing!
Chantal
Chantal,
I had no idea that YOUR Lee was the very same Lee who's BLOG I had been reading and following for the last few months!!!
It's Lee From London, Ontario, Not England.
Yes, I have read his posts and progress all the way back to the original diagnosis! I had no idea until I saw the link to YURBO at the bottom of your about me page just now.
Too funny.
ANYWAY. I HOPE things get better now. I SURE hope the Hydro-morphine is working? And that with the stopping of Chemo things start to even out. Please, let me know. I wish you continued peace and time together.
-Eric0 -
Hi ericchemosmoker said:Know the blog so well....and didn't realize...
Chantal,
I had no idea that YOUR Lee was the very same Lee who's BLOG I had been reading and following for the last few months!!!
It's Lee From London, Ontario, Not England.
Yes, I have read his posts and progress all the way back to the original diagnosis! I had no idea until I saw the link to YURBO at the bottom of your about me page just now.
Too funny.
ANYWAY. I HOPE things get better now. I SURE hope the Hydro-morphine is working? And that with the stopping of Chemo things start to even out. Please, let me know. I wish you continued peace and time together.
-Eric
It's a small world indeed. Your mindset is very similar to mine, and as an analytical person I,ve dove into the wacky world of cancer cures for the last 9 months and looked every possible approach, from the ridiculous to the sublime. I respect your view about chemotherapy, but as someone who walked into my first chemotherapy session absolutely terrified, I'm glad I did it. If you have specific questions about my experience I'd be glad tomhelp, feel free to message me privately if you prefer, BTW, may I ask how you came across my blog?
Best,
Lee0 -
chemo
Dear Eric
I just read your post and am not surprised at all that you have decided against chemo. I truly do think you are doing the right thing. Vince had the MIE and 18 months later his cancer came back full-fledged. He did do the BIG CANNONS of chemo from Oct 2010-thru Feb 2011 when he passed away. He was only 63 and very healthy before that. A non-smoker, non-drinker and a fitness freak.
His one regret wan that he took chemo once he knew it would no longer really help him. His quality of life was very bad with the chemo.
Now that was him and not everyone but understanding that you want to have a better life without is really is important.
I think you are very brave and a wonderful compassionate man for caring so about your wife. This EC is BEAST so never underestimate it.
I am so sorry you are on this journey but please hang in there and do what your heart tells you to do.
Love
Barbara0 -
Thank you for the support...mrsbotch said:chemo
Dear Eric
I just read your post and am not surprised at all that you have decided against chemo. I truly do think you are doing the right thing. Vince had the MIE and 18 months later his cancer came back full-fledged. He did do the BIG CANNONS of chemo from Oct 2010-thru Feb 2011 when he passed away. He was only 63 and very healthy before that. A non-smoker, non-drinker and a fitness freak.
His one regret wan that he took chemo once he knew it would no longer really help him. His quality of life was very bad with the chemo.
Now that was him and not everyone but understanding that you want to have a better life without is really is important.
I think you are very brave and a wonderful compassionate man for caring so about your wife. This EC is BEAST so never underestimate it.
I am so sorry you are on this journey but please hang in there and do what your heart tells you to do.
Love
Barbara
Barbara,
Thank you so much for not only writing to me, but also for your understanding and support.
I know this is a VERY personal decision and I would NOT recommend this course for anyone new to this disease, as this only applies to ME. I am still learning, and as I state on my "About Me" page, I am still open to suggestion and may change my mind if I am convinced otherwise. So far, that has not been the case. I am sending you a private message.
Wishing you peace, love and calm for this Sunday.
-Eric0 -
I was wrong.....It was YOU! LOLLeeinLondon said:Hi eric
It's a small world indeed. Your mindset is very similar to mine, and as an analytical person I,ve dove into the wacky world of cancer cures for the last 9 months and looked every possible approach, from the ridiculous to the sublime. I respect your view about chemotherapy, but as someone who walked into my first chemotherapy session absolutely terrified, I'm glad I did it. If you have specific questions about my experience I'd be glad tomhelp, feel free to message me privately if you prefer, BTW, may I ask how you came across my blog?
Best,
Lee
Lee,
Just realized that it was YOUR post that led me to your blog! I had run across it before doing a GOOGLE search of "London and Cancer" (don't ask!) and I had found and bookmarked it back in late June. I followed you there until I found the ACS site from the main ACS website later on doing research. Here is the post that you listed your blog in, where I realized you were you (LOL):
-------------------------------------------------------------------------------------------
Hello everyone;
My name is Lee and I have EC with mets to the liver and lymph nodes. My wife is Daisylin in these forums, and BTW it's London Canada, not England
I've been lurking for a few months and want to thank you all for contributing to a very valuable resource, and how empowering to find a focused forum populated by such courage. I also think it's important for patients to learn of the experiences of others; I know that before diagnosis the guy in the wheelchair was a "them"... the man with the medical appliance on the subway was a "them". At the moment of diagnosis we are all very clearly reminded that there is just "us", and we're all in this together.
I think that forums like this help patients and caregivers to act more as a team, I know that Chantal would go stir crazy if she wasn't actively involved in my care. Having a curiosity and a determination to sift through all the information overload out there really helps.
So helloto all, and I look forward to contributing to the EC forum.
- Lee
PS: My story can be found at:
www.yurbo.com/leescancer
-------------------------------------------------------------------------------------------
-Eric0 -
Double Post...LeeinLondon said:Hi eric
It's a small world indeed. Your mindset is very similar to mine, and as an analytical person I,ve dove into the wacky world of cancer cures for the last 9 months and looked every possible approach, from the ridiculous to the sublime. I respect your view about chemotherapy, but as someone who walked into my first chemotherapy session absolutely terrified, I'm glad I did it. If you have specific questions about my experience I'd be glad tomhelp, feel free to message me privately if you prefer, BTW, may I ask how you came across my blog?
Best,
Lee
Double post.
-Eric0
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