MY Reality with the number of Treatments
I wish everyone the best of health and fast and successful treatments.
-phil
Comments
-
Oh, yes...
That is me, also. Thank you for posting this. So often, I'm afraid to speak the truth here, because it seems discouraging to those that are earlier on in their treatment. When you have just had surgery and are planning on 6 mos of chemo, you don't really want to hear about someone a couple years out still having chemo and surgeries. But that leaves many of us in the lurch, so to speak. The mere mention of people actually dying from CRc in a previous thread brought about a response of surprise and dispair.
So, where are we supposed to talk about long term treatment? Yours is a story of survival! Isn't that positive? Your posts shouldn't discourage others, it should be an encouragement that you are still here 5 yrs later. We are ALIVE. We are still here to talk about treatment. I think we need to get it out on the boards. This isn't just a place for those newly diagnosed or that will get through their original treatment plan and be NED. Some of us will have a recurrence (or many), some will be NED long term or forever, and some will (yes, it's true) die.
Thank you, Phil. You've given me new insight into this and "permission" to speak the truth. Randy Pausch reminds me to speak the truth, also. So, I guess you are in the same league as Randy Pausch!
Kimby0 -
thanks Phil and Kimby
Thank you for posting this, I like everybody starting this fight hope my six months of chemo will bring an end point, but, I also know there are no guarantees. Hearing from posters like the two of you shows me this disease can be fought for a long time and life goes on along the way. I gain strength knowing this. Thanks to both of you and good luck to us all.
MIke0 -
I call it as I see it...kimby said:Oh, yes...
That is me, also. Thank you for posting this. So often, I'm afraid to speak the truth here, because it seems discouraging to those that are earlier on in their treatment. When you have just had surgery and are planning on 6 mos of chemo, you don't really want to hear about someone a couple years out still having chemo and surgeries. But that leaves many of us in the lurch, so to speak. The mere mention of people actually dying from CRc in a previous thread brought about a response of surprise and dispair.
So, where are we supposed to talk about long term treatment? Yours is a story of survival! Isn't that positive? Your posts shouldn't discourage others, it should be an encouragement that you are still here 5 yrs later. We are ALIVE. We are still here to talk about treatment. I think we need to get it out on the boards. This isn't just a place for those newly diagnosed or that will get through their original treatment plan and be NED. Some of us will have a recurrence (or many), some will be NED long term or forever, and some will (yes, it's true) die.
Thank you, Phil. You've given me new insight into this and "permission" to speak the truth. Randy Pausch reminds me to speak the truth, also. So, I guess you are in the same league as Randy Pausch!
Kimby
Kimby, I certainly am not in Randy Pausch's league at all but thank you for the compliment. Everyone wants a positive outcome and I think that having one enhances one's chances of living with cancer longer or beating it. A lot treatment issues have to do with the staging and when it's caught. We all will have different outcomes too. I'm not trying to be gloom and doom but I remember how disappointed I was when I was not finished with chemo when they said I might be. I guess one good thing is that no one ever told me that one thing was GOING to happen. They don't know, no one knows. People have been told they have 6 months and they live 6 years and probably the opposite has happened too. Look, we all are going to die, from the moment we are born we are on our way to death. the important thing is to enjoy yourself and try to lead a good honest life and do no harm to others. Some of us are in this for the short term and others, like you an me, are in it for the long haul. I hope this post gives some perspective to others about what can happen and to not be too disappointed if you have to do another round, or 2, or 3, or 4...0 -
This comment has been removed by the ModeratorMike49 said:thanks Phil and Kimby
Thank you for posting this, I like everybody starting this fight hope my six months of chemo will bring an end point, but, I also know there are no guarantees. Hearing from posters like the two of you shows me this disease can be fought for a long time and life goes on along the way. I gain strength knowing this. Thanks to both of you and good luck to us all.
MIke0 -
Phil
I really like your posts. They are humorous at times, informational and also gives me a reality perception. I've always been a realist and want to know whats going to happen. A lot of people I talk to want to Sugar-coat cancer recovery because they don't want to hurt my feelings or be negative. I'm not a negative person, but always search for the truth. Yes, I'm hoping my cancer is cured and no re-occurance, but I need a plan if it doesn't. When I read about all your treatments, I know myself well enough to make a decision on whether or not to continue chemo. When I first found out I had cancer (Dec 08) I think everyone just assumed, start her on chemo. After two brain surgeries, I was debating whether or not to even start chemo. No, I don't want to die, but dealing with chemo and its physical and mental side effects is a job in itself. You have had so many treatments, I wonder how you've gotten through it all. I appreciate your posts and hope you continue to post positive or negative comments. I wish you health, happiness and a good life.0 -
I hear youPhillieG said:I call it as I see it...
Kimby, I certainly am not in Randy Pausch's league at all but thank you for the compliment. Everyone wants a positive outcome and I think that having one enhances one's chances of living with cancer longer or beating it. A lot treatment issues have to do with the staging and when it's caught. We all will have different outcomes too. I'm not trying to be gloom and doom but I remember how disappointed I was when I was not finished with chemo when they said I might be. I guess one good thing is that no one ever told me that one thing was GOING to happen. They don't know, no one knows. People have been told they have 6 months and they live 6 years and probably the opposite has happened too. Look, we all are going to die, from the moment we are born we are on our way to death. the important thing is to enjoy yourself and try to lead a good honest life and do no harm to others. Some of us are in this for the short term and others, like you an me, are in it for the long haul. I hope this post gives some perspective to others about what can happen and to not be too disappointed if you have to do another round, or 2, or 3, or 4...
I have people ask me almost everyday when I'll be done with chemo. My answer lately seems to scare them: "30 more years, I hope!" I really do hope I have chemo for 30 more years....I don't expect to be NED with the mets I have. So, the longer I have chemo, the longer I'm around aggravating them. But, I need to come up with a better answer. A less scary one. I'm not sure why people are so frightened of chemo. If it's working (so far, not so much) and I have a good quality of life (my life is GREAT) then what's the problem?
The best analogy I've seen was one from another board. I'm going to share it but it is NOT my own:
"We may or may not be able to beat this over the long term, but we certainly can't know the answer right this minute. It is hard to make peace with this kind of uncertainty but maybe the situation can be liberating at least some of the time? If it is true that we are in a game where we often don't know if we're winning, losing, or tied -- and sometimes the scoreboard seems to be faulty and the referees inattentive -- then maybe the best thing to do is just keep playing as hard as we can & trying to influence the outcome in our favor. Glory in the fact that you feel so good now and have the strength to play hard! One thing is sure -- when we look back at how we played we're going to want to know that we tried our best."
Am I winning or losing the game? Who knows? Chemo has failed me to this point. Is the new 'cocktail' working? I don't know yet and I can't even see the scoreboard. So, I keep playing the game to the best of my ability knowing that I am, in the end, doing my best. I found hope in this analogy and hope it gives someone else the comfort it has me.
Kimby0 -
Great Postjenben59 said:Phil
I really like your posts. They are humorous at times, informational and also gives me a reality perception. I've always been a realist and want to know whats going to happen. A lot of people I talk to want to Sugar-coat cancer recovery because they don't want to hurt my feelings or be negative. I'm not a negative person, but always search for the truth. Yes, I'm hoping my cancer is cured and no re-occurance, but I need a plan if it doesn't. When I read about all your treatments, I know myself well enough to make a decision on whether or not to continue chemo. When I first found out I had cancer (Dec 08) I think everyone just assumed, start her on chemo. After two brain surgeries, I was debating whether or not to even start chemo. No, I don't want to die, but dealing with chemo and its physical and mental side effects is a job in itself. You have had so many treatments, I wonder how you've gotten through it all. I appreciate your posts and hope you continue to post positive or negative comments. I wish you health, happiness and a good life.
Hi there,
Phil, I appreciate your honesty in looking at the realities of some, including yourself, who have to go through ongoing chemo treatment. You too Kimby. My hope is to stay NED after my treatment which ended a year and a half ago. If not, then I can look to your survivors who live with grace, determination and courage.
Cheers, Lance0 -
Great Post
Hey Phil,
Let me chime in here too... I really enjoy your posts and you have made me snourt my beverage on more than one occasion with some of your humour
Meanwhile, on the reality side... that has also come through loud and clear that this journey we all are on is not just a temporary "6 months and it's over" message. Yes, there are those who are lucky to have their surgery and then 6 months of mop up chemo and voila... life is back to normal and they are NED ... for the rest of their lives, however long that will be.
I'll be the first to admit that when this journey gets overwhelming and too stressful for me, I use my handy dandy trick of going into denial. Denial is a much safer, comfortable place to be and easy to get into when one is feeling and looking great. Hey, if you look and feel great, then you can't be all that sick, right?? Famous words of one who is in denial... and also, it's a lot easier to comfort a worried/concerned friend/relative. The last thing I want to do is spend my life discussing the horrors of cancer, the terrors we cancer folk go through, the fears of what's to come... when I could be sharing good quality fun with these same people. So I just look them in the eye and say, "Do I LOOK sick?? Do I LOOK like I'm about to keel over any minute, or that you are in danger of having to rush me to the hospital before the day is out?" Of course the answer is "No", so I tell them, "Then as long as I'm feeling well, and looking well, then life is good... and that's what it's all about... having a good life!"
Hehehe... you say this as many times as you need to to convince others that all is ok right now, then you start to believe it yourself
The way I see it... I am going to be tested and scanned and involved with the medical world for many years to come... that isn't going to go away. So the reality is, there's a reason I have to be involved with oncologists, doctors, surgeons and radiologists, no matter how well I look or feel. These incredibly skilled folk are going to do everything in their power to keep me feeling this good and that means I will need meds along the way, for whatever pops up (and thank goodness those meds have been created!). If it means I have to go back on chemo at some point... then back on chemo I go. That is not something to whine about or be devastated about... it means that for whatever reason, I need the chemo to keep me feeling the way I currently do and I'm all for that! If it means more surgery or radiation, then I'll go for that too.
Will I get depressed or down if I hear the spots on my lungs have grown, or there are more of them there than the last scan? You bet I will!! Right now I'm going through a "I feel great" stage, even knowing I have spots on my lungs... I would like the spots to magically disappear, but we all know that's not going to happen. So the next best thing is for them to remain stable and not grow... only time will tell if that happens. And if it doesn't, then what? Chemo, ablation, surgery? Right now, I'd like to remain stable for as long as possible with the hopes (denial again??) that they are going to come up with some incredibly new procedure/drug that will eliminate these spots... without cutting up my lungs
So, I think I combine a good healthy dose of denial with reality to keep me going. In the meantime, I don't see anything negative or depressing about you and Kimby (and anyone else) posting about your ongoing treatments, or if someone gets a break and then finds they have to go back on chemo/radiation. These chemos are saving our lives gang! Look at the alternative if no one had discovered chemo??
Huggggggs,
Cheryl0 -
I don't expect...ldot123 said:Great Post
Hi there,
Phil, I appreciate your honesty in looking at the realities of some, including yourself, who have to go through ongoing chemo treatment. You too Kimby. My hope is to stay NED after my treatment which ended a year and a half ago. If not, then I can look to your survivors who live with grace, determination and courage.
Cheers, Lance
..my battle to be short, I expect I'll be going through some long battles as well, and don't even expect to be NED, I'll be lucky if that happens, and fortunate, but in reality, I know I can have this for a long time, but it doesn't mean I'll give in to it, if I have to do 50 years of chemo, I'm doing it, as long as I can see my kids grow up and have babies of their own, I'll be happy! 0 -
good post
Hi,
I hope it is OK for me to chime in since I'm a spouse. Thanks for the post. I have read in some books that some cancer is being treated as more of a chronic condition that people learn to live with. For some people it is more like diabetes, heart disease... I know we are working toward **** being NED in 6 months and we know that there is no guarantee. You all have shown us about living life and that is what we want to concentrate on right now. Phil, thanks for your funny and frank posts, they are always good.
**** should start folfox (and maybe Erbitux) next week.
Aloha,
Kathleen0 -
Phil.......Kathleen808 said:good post
Hi,
I hope it is OK for me to chime in since I'm a spouse. Thanks for the post. I have read in some books that some cancer is being treated as more of a chronic condition that people learn to live with. For some people it is more like diabetes, heart disease... I know we are working toward **** being NED in 6 months and we know that there is no guarantee. You all have shown us about living life and that is what we want to concentrate on right now. Phil, thanks for your funny and frank posts, they are always good.
**** should start folfox (and maybe Erbitux) next week.
Aloha,
Kathleen
I certainly don't want to sound like "Yes , follow me to NED" , but to me that is what all newbies of this disease and old timers all want. To expect that all will be or remain there is probably not a reality but I am here to make people think of other things than a life with cancer or chemo. I understand that I may have a reoccurence also even though no nodes were involved I still have a 15% chance of it coming back, but I won't dwell on it. I will live everyday as if its my last and I will not dwell on something that is not there until it shows its face then and only then will I give it a second thought, for to let it run your life to me is giving into it, and no one does that. I do know what reality may do but I also know that without hope all is lost. I hope you don't find this as a rebuttle to you. It isn't , its just my thinking of the way that I handle this situation and I think what others new to this like to hear. There has to be some type of light at the end of the tunnel or whats the use. I am only here trying to give light when there is nothing but despair in some of these peoples lives....I know what this disease can do, I watched it with my father, but I also know that if I dwell on it that it will only get worse for me, and I just consider others that may want to hear of simply the surviving when all cancer use to be was a death sentence, not so anymore....and yes, you have a great attitude towards it, whatever it takes to get through .....I do take a lot of heart in all of your posts, and regret that you have been at it for 5 plus years. I do hope that meds catch up to us all and rid us all of this mess...I do understand how you feel........God Bless ya bud0 -
my worry
Hi,
As my CT scan date gets closer (last week of March), I'm feeling more nervous about what's going to be found. These many small nodules in my lungs didn't seem to do much with the chemo last time I was scanned (November, after 3 months of chemo) & I guess I'm really not expecting them to be fully gone this time. I'm sure hoping -NED would be great! But hearing your posts from those of you who have also been doing chemo for a while makes me feel better- yes, life can and does go on. I know this, but sometimes have to be reassured. I'm feeling good at the moment & would never even know I have anything cancerous in my body if it weren't for the last scan telling me so. So, I'm grateful that I can function and do most things that I could do before (except I get tired and have more aches and pains). I'm still quite the busy mom and most people tell me they'd never know I have anything wrong with me by looking at me. For that, of course, I'm most grateful to God for. I was feeling down yesterday, though, thinking "can this ever actually go away, or will I be just having chemo off and on forever?" I may and I'm just looking at it now as more like dealing with a chronic illness- lots of people have other kinds of chronic illnesses that they deal with and that they suffer from far more than I'm suffering. So, yes, life can and does go on and I'll be happy if I can be NED someday, but happy still to keep on doing chemo, if that's what will keep me going and doing well.
I'm jabbering on here, sorry. Anyhow- long way of saying (especially to Phil and Cheryl) that you guys are a great support and reading your posts here is what I needed to hear today!
Lisa0 -
All the best to you
and to all us survivors out there, no matter the stage or the length of the journey. I am one of the lucky ones: six months and out, diagnosed in '04 and NED since. While I am not usually posting anymore, I still read regularly and chime in at times.
I think your post is a really important one for those in treatment for the long haul; in my five years on the boards, I have been touched by the support and honesty among us, but I have also seen a tendancy among my friends who had a recurrance or mets to NOT continue to post at the boards, for fear sometimes of being "too glum". Just when they needed this group the most, they withdrew and, I think, lost some of the valuable support they could have used.
I lost my dad to this disease; I have worked as a nurse (including hospice) my entire adult life. You are right that we are all on this earth for a short time, it's how we use the time that counts. While we all try to be positive or have faith, those are NOT the only factors in beating this, or any disease.
I admire your honesty (and love your humor!) and hope that you continue to post threads that may be a lifeline for others here.
Stay strong, Judy0 -
SCANlisa42 said:my worry
Hi,
As my CT scan date gets closer (last week of March), I'm feeling more nervous about what's going to be found. These many small nodules in my lungs didn't seem to do much with the chemo last time I was scanned (November, after 3 months of chemo) & I guess I'm really not expecting them to be fully gone this time. I'm sure hoping -NED would be great! But hearing your posts from those of you who have also been doing chemo for a while makes me feel better- yes, life can and does go on. I know this, but sometimes have to be reassured. I'm feeling good at the moment & would never even know I have anything cancerous in my body if it weren't for the last scan telling me so. So, I'm grateful that I can function and do most things that I could do before (except I get tired and have more aches and pains). I'm still quite the busy mom and most people tell me they'd never know I have anything wrong with me by looking at me. For that, of course, I'm most grateful to God for. I was feeling down yesterday, though, thinking "can this ever actually go away, or will I be just having chemo off and on forever?" I may and I'm just looking at it now as more like dealing with a chronic illness- lots of people have other kinds of chronic illnesses that they deal with and that they suffer from far more than I'm suffering. So, yes, life can and does go on and I'll be happy if I can be NED someday, but happy still to keep on doing chemo, if that's what will keep me going and doing well.
I'm jabbering on here, sorry. Anyhow- long way of saying (especially to Phil and Cheryl) that you guys are a great support and reading your posts here is what I needed to hear today!
Lisa
Hi Lisa,
So YOU were the person I referred to in my reply to Buzzard about people dealing with it like a chronic disease.
I had a scan this past Thursday and find out Monday the results. I've had these "things" hanging around in my lungs for the past 3-4 years and after 3 operations they keep popping up. The chemo seems to keep them in check and stable. It's strange how the chemo often takes the cancer just so far, then it stops or slows down with it making it go away. We seem to be similar with how we feel and appear to others. If someone didn't know me they would not know I've been living with cancer for 5 years. I never lost my hair (it's thinned but hey, I'm 51). So while I hope to hear that all is well and I'm NED, I will be happy with all is stable. I don't want to go back on CPT11 but if I have to , I have to. I too wish it would just go away.
I hope your scan turns out where the nodes shrunk and better yet, are gone, I feel we all want this for each other. I wouldn't wish this on anyone (well, maybe one or two people)...
I'm glad you've enjoyed my (and Cheryl's) posts. I've found many people have been helpful. It's good to get different perspectives from folks.
All the best to you Lisa
-phil0 -
:-)jsabol said:All the best to you
and to all us survivors out there, no matter the stage or the length of the journey. I am one of the lucky ones: six months and out, diagnosed in '04 and NED since. While I am not usually posting anymore, I still read regularly and chime in at times.
I think your post is a really important one for those in treatment for the long haul; in my five years on the boards, I have been touched by the support and honesty among us, but I have also seen a tendancy among my friends who had a recurrance or mets to NOT continue to post at the boards, for fear sometimes of being "too glum". Just when they needed this group the most, they withdrew and, I think, lost some of the valuable support they could have used.
I lost my dad to this disease; I have worked as a nurse (including hospice) my entire adult life. You are right that we are all on this earth for a short time, it's how we use the time that counts. While we all try to be positive or have faith, those are NOT the only factors in beating this, or any disease.
I admire your honesty (and love your humor!) and hope that you continue to post threads that may be a lifeline for others here.
Stay strong, Judy
I'm glad you are still doing well Judy. I hope that you stay NED forever. I was nervous about being too glum too or not agreeing with the mainstream, but I figured the worst that can happen is they throw me off the site. So what. Thanks for your compliments.
-p0 -
uuuggghhh!PhillieG said::-)
I'm glad you are still doing well Judy. I hope that you stay NED forever. I was nervous about being too glum too or not agreeing with the mainstream, but I figured the worst that can happen is they throw me off the site. So what. Thanks for your compliments.
-p
Lately I have been feeling the same way, diagnosed last year ,state 4 with mets to lymph nodes, 12 rounds of 5fu then surgery. I thought I beat it! Ned for 2 months, lymphnodes ARE BACK!. Here we go again, started chemo again then they will run more tests next month to see what is going on. I also asumed I beat it and it was over, but here we go again.. It is very disappointing, but then again we made it this far to start the fight again!! You do get tired of it though, I am feeling that way now, at first I was all gung ho, now i'm like " what the __" But I will give it my all AGAIN! Remember it can always be worse and unfortunately there are worse people off then we are... Keep the faith, stay positive and kick butt!
Karyn0 -
Well Putbutterfly23 said:uuuggghhh!
Lately I have been feeling the same way, diagnosed last year ,state 4 with mets to lymph nodes, 12 rounds of 5fu then surgery. I thought I beat it! Ned for 2 months, lymphnodes ARE BACK!. Here we go again, started chemo again then they will run more tests next month to see what is going on. I also asumed I beat it and it was over, but here we go again.. It is very disappointing, but then again we made it this far to start the fight again!! You do get tired of it though, I am feeling that way now, at first I was all gung ho, now i'm like " what the __" But I will give it my all AGAIN! Remember it can always be worse and unfortunately there are worse people off then we are... Keep the faith, stay positive and kick butt!
Karyn
Well Put Karyn. Hang in there. It (chemo) really is a grind though. There's life at Stage IV, I'm here after 5 years. Make the best you can of your time.
-phil0 -
Init for the long haul, too!PhillieG said:Well Put
Well Put Karyn. Hang in there. It (chemo) really is a grind though. There's life at Stage IV, I'm here after 5 years. Make the best you can of your time.
-phil
Thanks, Phil, for posting this. I have been fighting now for 18 months and I just spoke to someone I thought was a friend say "Is it really worth it?" I almost climbed through the phone to wring her neck, but then I thought,people have no idea what it takes to fight this beast and I guess we have to educate some of them. This friend has a husband who had a major stroke and needed serious rehab for many months and has been on disability now for many years. I almost asked her if it was "worth it" for him.
I have been chronicling my struggle, also, for many months and am so grateful for the support of all my friends here that truly understand.My odds are not good and the chemo and 4 surgeries were brutal, but I have a family to raise and God will get me through all of this; I also believe it is his decision when I am done with this fight and nor someone standing on the sidelines. Like you, I would love for my doc to tell me I'm NED, but if that doesn't happen at least I know that I haven't given up without trying my best.
Your struggle just makes me realize that I can do this today ,tomorrow and for however long it takes to be cancer-free. Keep telling it like it is. We can take it! There is always hope in any situation; and even if this cancer beats me, I will be o.k. and my family can be proud that their mom did everything she could to stay with them and is now watching over them.
Good luck in your continued battle!! You have given me strength for today and I thank you!
Much love,
Hollyberry0 -
I was just talking about you!
I was visiting with my daughter this weekend and was talking about the boards, colon cancer and how jealous I am, at times, of those who are diagnosed, treated, then NED for life, it seems! I was talking about your posting about 170+ treatments, and they rise every 2 weeks since you continue on treatments. About how this beast is so ugly and how it has turned out to be such a HUGE battle, much more so than I had originally expected. But, I like the rest of us, am glad to have the opportunity to continue the fight! One day, God willing, we will be taking a pill for 5 years and that's that! It's amazing the things we learn in this fight. I think it's important that we who are in a situation that can be a bit scary for newbies feel comfortable in speaking about the issues we have regarding multiple recurrences and long term treatment! This is a survivor's board, not a curing board! While it certainly pains me to see a newbie dealing with the fear of this beast, I am also a realist and believe it is always better to face reality than to go blindfolded and hope for the best! We are all adults here, and certainly have the ability to not read something if it appears to be not the message we are looking for! I certainly don't read word for word every topic on this board, and I would be very surprised if everybody here reads every post ever made! Plus, there's the added bonus that perhaps knowing this beast CAN be so persistent will keep even one person from not doing followup care! Keeping everyone vigilant to the possibility of recurrence can help us to make hard choices in changing how we live out the time we have left on this earth!0
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