Today I don't know which way is up
I wish this whole business of having cancer came with a user's manual. I don't know what the right thing to do is. Should I encourage my partner to continue chemo or encourage him to stop? I can make a strong case for denial in either scenario.
He's extemely stubborn and tenacious (mostly in a good way when it comes to setting his mind to something and then achieving it), but I can't seem to be able to get him to apply that tenacity to surviving the cancer. I don't want to sit back and just let him wither away, but I don't know what to do. He shoots holes in all of my arguments.
We had talked about him stopping the chemo in favor of quality of life, but now he thinks that that would be the same as giving up. On the other hand when I tried to get him to focus his energy on surviving, he said that that's just denial of what's inevitable. I gave examples of people who had survived cancers much more dire than his and are doing fine 10 + years later, but he says he can't relate to those.
I'm feeling frustrated today and unsure of how to navigate. All along I've tried to respect all of his decisions in how to handle cancer, but now I'm thinking I need to be more assertive.
If you made it this far, thanks for reading this -
Comments
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get him on the board
Hi jeff here stage 1V.
Have you tried to get him to join this board. The people on this site are great and have or are going thru the same fears and concerns as he is. Sometimes it great to talk with someone who has gone thru it and learn from them what to expect.also how to cope with things. It has been a great help to me and countless others. Have him try it, he has nothing to lose and everything to gain.
Jeff
Just happy to be here!!0 -
Quality vs Quantity
Hey Adrian
I'm a big proponent of QUALITY of Life over a QUANTITY of Life - and I believe each of us have the right to make our own decisions on that. To me, it's more than keeping my heart "beating" you know?
But, one should not give up before they have TRIED to win the battle - give it your all first and then if you want to raise the "white flag" then I can't and nobody can/should argue with that.
His Cancer is undboutedly painful as I've heard about bone cancer hurting...just keep telling him about Rob and Karyn here on this side of the board and how they are battling it - he should be able to "RELATE" to those 2 people, because they have what he has - maybe the rest of us don't count because our Cancers are different - but our wills to fight and live are universal.
Personally, I think he's got to give it a chance to work or not work - what is there to lose? Well his life for one and his partner for two...that's a pretty strong argument right there.
TRY NOW and you can always quit later...we all know what chemo does, just read the stories here, Adrian...we've all suffered and lost parts of our bodies, but our spirits soar like an eagle...when I go, I want to go out FIGHTING! It's the only way.
BTW, glad that Rob and Karyn got hold of you - told you they would, didn't I?
You hang in there - and YOU go ahead and ENCOURAGE him...it's the right thing to do right now.
Take care
-Craig0 -
Thanks, Jeff,Muzzy said:get him on the board
Hi jeff here stage 1V.
Have you tried to get him to join this board. The people on this site are great and have or are going thru the same fears and concerns as he is. Sometimes it great to talk with someone who has gone thru it and learn from them what to expect.also how to cope with things. It has been a great help to me and countless others. Have him try it, he has nothing to lose and everything to gain.
Jeff
Just happy to be here!!
I did try to
Thanks, Jeff,
I did try to get him to join this one, but he belonged to a different one when he was first diagnosed (2 years ago) and was on it for a while but found it to be clicque-ish. I told him this was not at all like that, but I think he's soured to the idea of online forums. He has a colorectal cancer support group (which meets tonight) but none of them are at the same stage that he is. I told him about Rob and Karyn on here, and don't want to push him into it if he doesn't want it. Personally I think it would be great for him. Anyway - thanks for responding - I appreciate the support!
Adrian0 -
The right thing to do
Hello there
We haven't met here yet, but my name is Leslie and I am a stage 4 rectal cancer survivor dx May 08 and currently still NED after surgeries, with a few scares with a PET scan and blood tests.
I want to applaud your efforts as a caregiver for your partner. You are here, sharing your frustration, and wanting the best for your partner. Cancer, and advanced cancer, is a very difficult life challenge, and yes, I wish there were a user's manual too. I also wish there were a cure, or vaccine or SOMETHING, because treatment as it is today is a long long haul with lots of serious side effects as you well know. It's hard to endure the treatments and it's hard to watch your loved ones endure you enduring the treatments. I'm very very grateful for all my caregivers, especially my husband and girlfriend, who are my closest caregivers. It is very painful for me at times to watch their struggle, and not want to give them relief. Unfortunately the scenarios of relief for them can drift towards not having the cancer to deal with, and well, those thoughts of not having the cancer, not having me with the cancer, aren't healthy ones for me. So I'm left just being there as best I can as they go through their struggle. Sometimes I can be more present than at other times. Sometimes I'm struggling too.
I don't think there is any right way for you to be right now, or maybe there are many right ways to be. It seems your partner is struggling with treatment fatigue, frustration with advanced cancer treatment which is a daunting in finding info, doctors to treat you, effective treatments etc etc and then, why bother, because it'll come back anyway. I'm familiar with living with the fear of the unknown, and am left with just doing my best right now.
And right alongside the grimness of the situation, is great love, caught in moments that touch me. It can be my Border collie sticking her cold nose under my hand, the flight of the harrier across the yellow-brown grass fields, the delight of my partner in cooking a meal I can eat, and enjoy no less!
So I can't find that user's manual, but I join you in your search as you make meaning out of what's going on.
all the best, Leslie0 -
Caregiving
We have met on the caregivers sight and I agree that it doesn't get enough responses. Maybe us caregivers are just too busy to post. It's a constant struggle to stand by knowing that we don't have control. We can't make the decisions. We can't cure our loved ones. Sometimes, we can't help the pain. My husband has told me many times that my job is harder than his. He has a very strong faith and no question about where he's going. He fought a very brave fight and was told there was nothing more they could do. He has said from the beginning that he didn't want to chase a cure. He did want to buy as much time as he could. If your partner won't join this board. you might print out some of your favorite posts and let him read them. Then just tell him how you feel and encourage him to share his thoughts. The best thing we can do as caregivers is support them in their decisions, hug them, and tell them we love them. This is really hard! Fay0 -
Hi Adrian,I'm very sorry to
Hi Adrian,
I'm very sorry to hear of your dilemma regarding your partners struggle with Cancer and the accompnying mood swings he is experiencing and finding difficulty coping with.
I've been fighting Cancer for nearly 10 years but, I only seem to have one mode for dealing with it, and that's fight it as long and hard as I can. It worked great for me and kept me in a positive frame of mind throughout the Journey so it's somewhat easy for me to continue with the "take no prisoners, and bring it on" attitude I maintain for myself and which has served me well.
Unfortunately, I've learned through the recent passing of someone very close and dear to me that what was good and appropriate for me in my battle with cancer wasn't necessarily the appropriate response for me to convey to her when she was at the end of her Journey.
Her prognosis was devastatingly poor, she had been advised by the Oncologist at Stanford U that there were no further treatments available except pallitive, that she could withstand and she had from 2 weeks to 2 years, (her own words, but she wasn't being completely honest about the 2 year part}, of course, I thought she was just having a "down day", and needed encouragement. I was in total denial of reality regarding her condition, heard what I wanted to hear and didn't even listen to what she was telling me, which was essentially "goodbye", and what she really needed was a different response that I was absolutely incapable of providing. I learned a great deal about myself and my inability to accept things I cannot change, and my troubling lack of even the barest of vocabulary to talk to someone about their inevitable and iminent end of life reality. It's like I have only one mode...and nothing else to offer. The consequence is that Lyn died within a week, I was still in total denial, and never took the opportunity to even tell her how much I admired and loved her, or how important she was in my life, or even to tell her how important all the years of encouragement, kindness, and caring, and support she had provided were to me.
When I stop to think about things, I've come to realize that I've always been that way, I seem to be unable to express any response except, just keep fighting, when I should have talked to Lyn about her fears, anxiety, pain, quality of life, and her own wishes and desires. I feel like I completely let her down in her time of real need when she was reaching out for understanding and compassion and I feel very confused and emotionally, and intellectually, and spirtitually, inadequate by my inability to do or say anything differently than what I did.
I don't know what the message is in this for you, Adrian, except perhaps listen to what your partner is telling you and respond from your heart when that's appropriate, and respond with encouragement when that's appropriate, and pray for the wisdom to know the difference.
DennisR0 -
No other way...DennisR said:Hi Adrian,I'm very sorry to
Hi Adrian,
I'm very sorry to hear of your dilemma regarding your partners struggle with Cancer and the accompnying mood swings he is experiencing and finding difficulty coping with.
I've been fighting Cancer for nearly 10 years but, I only seem to have one mode for dealing with it, and that's fight it as long and hard as I can. It worked great for me and kept me in a positive frame of mind throughout the Journey so it's somewhat easy for me to continue with the "take no prisoners, and bring it on" attitude I maintain for myself and which has served me well.
Unfortunately, I've learned through the recent passing of someone very close and dear to me that what was good and appropriate for me in my battle with cancer wasn't necessarily the appropriate response for me to convey to her when she was at the end of her Journey.
Her prognosis was devastatingly poor, she had been advised by the Oncologist at Stanford U that there were no further treatments available except pallitive, that she could withstand and she had from 2 weeks to 2 years, (her own words, but she wasn't being completely honest about the 2 year part}, of course, I thought she was just having a "down day", and needed encouragement. I was in total denial of reality regarding her condition, heard what I wanted to hear and didn't even listen to what she was telling me, which was essentially "goodbye", and what she really needed was a different response that I was absolutely incapable of providing. I learned a great deal about myself and my inability to accept things I cannot change, and my troubling lack of even the barest of vocabulary to talk to someone about their inevitable and iminent end of life reality. It's like I have only one mode...and nothing else to offer. The consequence is that Lyn died within a week, I was still in total denial, and never took the opportunity to even tell her how much I admired and loved her, or how important she was in my life, or even to tell her how important all the years of encouragement, kindness, and caring, and support she had provided were to me.
When I stop to think about things, I've come to realize that I've always been that way, I seem to be unable to express any response except, just keep fighting, when I should have talked to Lyn about her fears, anxiety, pain, quality of life, and her own wishes and desires. I feel like I completely let her down in her time of real need when she was reaching out for understanding and compassion and I feel very confused and emotionally, and intellectually, and spirtitually, inadequate by my inability to do or say anything differently than what I did.
I don't know what the message is in this for you, Adrian, except perhaps listen to what your partner is telling you and respond from your heart when that's appropriate, and respond with encouragement when that's appropriate, and pray for the wisdom to know the difference.
DennisR
I don't think Lyn would have wanted you to be any other way than you are. I think she appreciated you being a fighter - it probably gave her strength. You seem to be second guessing - thinking what you should have done. In reality - there is probably nothing you could have done with the information you were given. It seems as though she wanted you to be just who you are and I bet you are a special person. Don't have regrets - I think she knows how you feel.0 -
Just my opinion...
but I think your partner is angry and scared and several other emotions. And that is a very normal response to his diagnosis. I don't know his diagnosis or stage or anything else - but it's a rough ride. I do apologize for sounding rude, but it's not your fight -it's his.
The reason my husband and I have a living will, physician's directive and everything else is because neither one of us want heroic measures to keep us alive. I do not want someone in my family to decide that they want to keep me alive to make them feel better - to make them feel as though they are doing the right thing. This directive will ensure my wants are followed.
Personally, were I you, give him the power to determine what he wants to do. It is his life, after all.0 -
Hi Adrian,
It sounds like you and your partner are in the midst of some very difficult "discernment". Probably something we all face on this journey as it heads in its darker directions. When is treatment "Life-giving" and when is it merely "prolonging suffering".
For myself, I am still very much in the land of the living and I still want to get the most out of this life as possible. I want to spend as many days with my partner and children as I can. But I am not suffering that much either at the moment. My pain is well managed and the side-effects, though bothersome, are bearable. The difficult time of discernment is not there for me yet. I'm still looking for options and planning to pursue all those that offer a realistic hope of longer term survival (years not months PLEASE).
As important as it is for you to respect all of your partners decisions, I think it is also important to affirm that you are in this too. And that you have your own feelings, needs and interests that need to be named and considered as well. This is the tough piece for the caregivers who are often the ones to put all of their own needs on the back-burner while supporting the one with cancer. I think you can be assertive when it comes to saying what is important for you. I really think you have to be. A partnership is just that... in sickness and in health! You are more that just a passive witness to your partners suffering, you participate in it, suffer as well, and do have a say in the decisions.
From our recent conversations it sounded to me like there was still some hope for mid to long term survival if the tumour could be shrunk. It doesn't seem like the time to be pulling the pin. Sounds like you are mid-program. Perhaps seeing it through would lead to a time of clearer discernment. It is too difficult to try to make decisions when not all of the information has emerged yet.
And of course it is mid-program when we get weary and discouraged and feel we can't carry on.
My heart is with you both. Pehaps you can find a little book or resource to support you in this discernment/decision-making time.
Peace and Blessings... Rob; in Vancouver0 -
Hi Adrian
Hi Adrian,
It's good you could come to this group with very real issues. I think people have shared a lot of wisdom. I too am a caregiver. My husband has only posted once or twice and I find I am the one who relies on the board through direct contact. **** likes to hear things from me. When we have a question he'll ask, "Have you put it out to the group?"
I know that as a caregiver I try to listen a lot and provide support. I try to go to others for strength but I know **** is there when I need him.
Best to the two of you.
Aloha,
Kathleen0 -
Hey Dasspears,dasspears said:No other way...
I don't think Lyn would have wanted you to be any other way than you are. I think she appreciated you being a fighter - it probably gave her strength. You seem to be second guessing - thinking what you should have done. In reality - there is probably nothing you could have done with the information you were given. It seems as though she wanted you to be just who you are and I bet you are a special person. Don't have regrets - I think she knows how you feel.
Thank you for
Hey Dasspears,
Thank you for your kind and insightful message.
Intellectually, I understand everything you're saying, my issue seems to revolve around a feeling of inadequacy, not only to not have any other mode than fight, but to not recognize when someone close to me wants to talk about their end of life and I feel like a brick wall comes up and I'm unable to respond.
I know that Lyn knew how I felt about her, we had become very close spiritually during her unexpected struggle with Pancreatic Cancer and yes, she did rely on me for encouragement and support while she bravely fought her deadly cancer until there just wasn't any fight left in her.
DennisR0 -
Thank you all!Sonia32 said:I will be sending
positive vibes and prayers your way hoping that your partner and yourself will come to the right decision about his cancer treatment.
hugs to you
Thanks to all of you for taking the time and energy to respond to my posting. I was having a rough day and hearing from each of you really helped. I used to be somewhat dismissive of online forums etc as being superficial but the genuine love and concern that I've seen on this one has changed my mind! Thanks for all your prayers and good vibes or whatever you call those good intentions. We don't get hung up on the language and will take any kind of prayers, good energy, whatever - that people want to throw our way. And we'll be doing the same for you. Quakers use the expression "holding someone in the light." I'll be doing that for all of you and wishing you lots of joy along this journey.
with gratitude,
Adrian0 -
Holding You in the LightAceSFO said:Thank you all!
Thanks to all of you for taking the time and energy to respond to my posting. I was having a rough day and hearing from each of you really helped. I used to be somewhat dismissive of online forums etc as being superficial but the genuine love and concern that I've seen on this one has changed my mind! Thanks for all your prayers and good vibes or whatever you call those good intentions. We don't get hung up on the language and will take any kind of prayers, good energy, whatever - that people want to throw our way. And we'll be doing the same for you. Quakers use the expression "holding someone in the light." I'll be doing that for all of you and wishing you lots of joy along this journey.
with gratitude,
Adrian
We're holding you and your partner in the light. I hope it helps you to find your way through the night!
Rob; in Van0 -
My thanks tooAceSFO said:Thank you all!
Thanks to all of you for taking the time and energy to respond to my posting. I was having a rough day and hearing from each of you really helped. I used to be somewhat dismissive of online forums etc as being superficial but the genuine love and concern that I've seen on this one has changed my mind! Thanks for all your prayers and good vibes or whatever you call those good intentions. We don't get hung up on the language and will take any kind of prayers, good energy, whatever - that people want to throw our way. And we'll be doing the same for you. Quakers use the expression "holding someone in the light." I'll be doing that for all of you and wishing you lots of joy along this journey.
with gratitude,
Adrian
And my thanks to all of you too. I am Adrian's partner. Adrian has been telling me about the group, and I just read through the thread. Thank you for all of your kind, sensitive, and very helpful responses to Adrian (and to me indirectly). I see that he's right in describing this group as sensitive and caring, so I'll be reading and posting here for a while too. I have a support group that I meet with in person -- as well as Adrian and many friends -- and all of that helps a lot. But this group looks like it has much to offer, and I'm glad to be joining it.
A few responses to the thread: I admire all of your sensitivity to the variety of ways in which people experience their cancer. I have thought and said from the start that each person finds their own best way to experience the cancer, and that perspective seems abundantly present here. As for feeling afraid and angry, as one of the posts suggests -- not much; I never have for reasons I cannot explain, although I can easily understand how you might think those would be the feeling that motivate my response. My reasons for acknowledging the likelihood of dying from the disease do not arise from fear and anger though; they are just realistic, I think. Colon cancer with bone metastasis has a poor prognosis, and my cancer has been growing at a remarkably fast rate. I hope the cyberknife treatments and the chemo slow it, but I don't think they will stop it forever.
That doesn't seem like doom to me, just a realistic acknowledgment of what I am most likely to experience in the long run. The chemo (irenotecan) makes me very sick, and I was having a hard time evaluating whether experiencing that was worth whatever it might provide in terms of slowing the disease. I found that I am completely unable to make a decision about chemo based on anything rational, so after deeply thinking about the options, I came to realize that chemo, for the time being at least, is one aspect of maintaining hope -- part of my quality of life -- and Adrian and I have decided that I will continue the chemo for now.
In the meantime, Adrian and I have focused from the start on living well with cancer, and we continue to do so. I have had a rough time -- and Adrian even more so, I think -- in the last few weeks (bowel blockage, hospitalization, discovery of cancer back in the colon), but Adrian and I are resilient and emerging from that episode as strong as ever.
I find that I am not only writing this for all of you who I have just met online but for the man I love who is sitting downstairs right now. We have talked a few times in the last few days about how I think about survival. Part of his frustration comes from my poor communication. He had asked me to project my will toward survival, and I had told him that that was too abstract, that I had no ability to picture "survival" in my head. What I have done consistently from the diagnosis has been to picture concrete things that require joyous life to achieve -- swinging off a rope swing into Bass Lake on my 50th birthday, climbing Mount Katahdin after surgery and chemo; seeing the garden come into bloom in the spring; getting married on our 19th anniversary as a couple. We've done all that in the last year or so. Adrian and I are making similar plans now for a joyful and love-filled Fall, Winter, and beyond.
With thanks and best wishes to all.
John0 -
Hi John and Welcomejohnsfo said:My thanks too
And my thanks to all of you too. I am Adrian's partner. Adrian has been telling me about the group, and I just read through the thread. Thank you for all of your kind, sensitive, and very helpful responses to Adrian (and to me indirectly). I see that he's right in describing this group as sensitive and caring, so I'll be reading and posting here for a while too. I have a support group that I meet with in person -- as well as Adrian and many friends -- and all of that helps a lot. But this group looks like it has much to offer, and I'm glad to be joining it.
A few responses to the thread: I admire all of your sensitivity to the variety of ways in which people experience their cancer. I have thought and said from the start that each person finds their own best way to experience the cancer, and that perspective seems abundantly present here. As for feeling afraid and angry, as one of the posts suggests -- not much; I never have for reasons I cannot explain, although I can easily understand how you might think those would be the feeling that motivate my response. My reasons for acknowledging the likelihood of dying from the disease do not arise from fear and anger though; they are just realistic, I think. Colon cancer with bone metastasis has a poor prognosis, and my cancer has been growing at a remarkably fast rate. I hope the cyberknife treatments and the chemo slow it, but I don't think they will stop it forever.
That doesn't seem like doom to me, just a realistic acknowledgment of what I am most likely to experience in the long run. The chemo (irenotecan) makes me very sick, and I was having a hard time evaluating whether experiencing that was worth whatever it might provide in terms of slowing the disease. I found that I am completely unable to make a decision about chemo based on anything rational, so after deeply thinking about the options, I came to realize that chemo, for the time being at least, is one aspect of maintaining hope -- part of my quality of life -- and Adrian and I have decided that I will continue the chemo for now.
In the meantime, Adrian and I have focused from the start on living well with cancer, and we continue to do so. I have had a rough time -- and Adrian even more so, I think -- in the last few weeks (bowel blockage, hospitalization, discovery of cancer back in the colon), but Adrian and I are resilient and emerging from that episode as strong as ever.
I find that I am not only writing this for all of you who I have just met online but for the man I love who is sitting downstairs right now. We have talked a few times in the last few days about how I think about survival. Part of his frustration comes from my poor communication. He had asked me to project my will toward survival, and I had told him that that was too abstract, that I had no ability to picture "survival" in my head. What I have done consistently from the diagnosis has been to picture concrete things that require joyous life to achieve -- swinging off a rope swing into Bass Lake on my 50th birthday, climbing Mount Katahdin after surgery and chemo; seeing the garden come into bloom in the spring; getting married on our 19th anniversary as a couple. We've done all that in the last year or so. Adrian and I are making similar plans now for a joyful and love-filled Fall, Winter, and beyond.
With thanks and best wishes to all.
John
I am
Hi John and Welcome I am going to suggest that you repost your comment in a new thread. I think it is worthy of a new one and fear since it is at the bottom of an old post (not that Adrian's post was bad or anything, lol) and due to this heavy spamming we just got over. I am soooooo glad you joined us and I know others will be too! 0 -
will to survivaljohnsfo said:My thanks too
And my thanks to all of you too. I am Adrian's partner. Adrian has been telling me about the group, and I just read through the thread. Thank you for all of your kind, sensitive, and very helpful responses to Adrian (and to me indirectly). I see that he's right in describing this group as sensitive and caring, so I'll be reading and posting here for a while too. I have a support group that I meet with in person -- as well as Adrian and many friends -- and all of that helps a lot. But this group looks like it has much to offer, and I'm glad to be joining it.
A few responses to the thread: I admire all of your sensitivity to the variety of ways in which people experience their cancer. I have thought and said from the start that each person finds their own best way to experience the cancer, and that perspective seems abundantly present here. As for feeling afraid and angry, as one of the posts suggests -- not much; I never have for reasons I cannot explain, although I can easily understand how you might think those would be the feeling that motivate my response. My reasons for acknowledging the likelihood of dying from the disease do not arise from fear and anger though; they are just realistic, I think. Colon cancer with bone metastasis has a poor prognosis, and my cancer has been growing at a remarkably fast rate. I hope the cyberknife treatments and the chemo slow it, but I don't think they will stop it forever.
That doesn't seem like doom to me, just a realistic acknowledgment of what I am most likely to experience in the long run. The chemo (irenotecan) makes me very sick, and I was having a hard time evaluating whether experiencing that was worth whatever it might provide in terms of slowing the disease. I found that I am completely unable to make a decision about chemo based on anything rational, so after deeply thinking about the options, I came to realize that chemo, for the time being at least, is one aspect of maintaining hope -- part of my quality of life -- and Adrian and I have decided that I will continue the chemo for now.
In the meantime, Adrian and I have focused from the start on living well with cancer, and we continue to do so. I have had a rough time -- and Adrian even more so, I think -- in the last few weeks (bowel blockage, hospitalization, discovery of cancer back in the colon), but Adrian and I are resilient and emerging from that episode as strong as ever.
I find that I am not only writing this for all of you who I have just met online but for the man I love who is sitting downstairs right now. We have talked a few times in the last few days about how I think about survival. Part of his frustration comes from my poor communication. He had asked me to project my will toward survival, and I had told him that that was too abstract, that I had no ability to picture "survival" in my head. What I have done consistently from the diagnosis has been to picture concrete things that require joyous life to achieve -- swinging off a rope swing into Bass Lake on my 50th birthday, climbing Mount Katahdin after surgery and chemo; seeing the garden come into bloom in the spring; getting married on our 19th anniversary as a couple. We've done all that in the last year or so. Adrian and I are making similar plans now for a joyful and love-filled Fall, Winter, and beyond.
With thanks and best wishes to all.
John
I believe mine is a minority opinion, but I don't think a will to survival really makes any difference to survival, so long as you continue to follow your doctors' advice. If your opinion is that you will likely not survive the disease, it won't harm you to hold that opinion. Anyhow, things that are merely likely don't always happen. Good luck.0 -
welcome Johnjohnsfo said:My thanks too
And my thanks to all of you too. I am Adrian's partner. Adrian has been telling me about the group, and I just read through the thread. Thank you for all of your kind, sensitive, and very helpful responses to Adrian (and to me indirectly). I see that he's right in describing this group as sensitive and caring, so I'll be reading and posting here for a while too. I have a support group that I meet with in person -- as well as Adrian and many friends -- and all of that helps a lot. But this group looks like it has much to offer, and I'm glad to be joining it.
A few responses to the thread: I admire all of your sensitivity to the variety of ways in which people experience their cancer. I have thought and said from the start that each person finds their own best way to experience the cancer, and that perspective seems abundantly present here. As for feeling afraid and angry, as one of the posts suggests -- not much; I never have for reasons I cannot explain, although I can easily understand how you might think those would be the feeling that motivate my response. My reasons for acknowledging the likelihood of dying from the disease do not arise from fear and anger though; they are just realistic, I think. Colon cancer with bone metastasis has a poor prognosis, and my cancer has been growing at a remarkably fast rate. I hope the cyberknife treatments and the chemo slow it, but I don't think they will stop it forever.
That doesn't seem like doom to me, just a realistic acknowledgment of what I am most likely to experience in the long run. The chemo (irenotecan) makes me very sick, and I was having a hard time evaluating whether experiencing that was worth whatever it might provide in terms of slowing the disease. I found that I am completely unable to make a decision about chemo based on anything rational, so after deeply thinking about the options, I came to realize that chemo, for the time being at least, is one aspect of maintaining hope -- part of my quality of life -- and Adrian and I have decided that I will continue the chemo for now.
In the meantime, Adrian and I have focused from the start on living well with cancer, and we continue to do so. I have had a rough time -- and Adrian even more so, I think -- in the last few weeks (bowel blockage, hospitalization, discovery of cancer back in the colon), but Adrian and I are resilient and emerging from that episode as strong as ever.
I find that I am not only writing this for all of you who I have just met online but for the man I love who is sitting downstairs right now. We have talked a few times in the last few days about how I think about survival. Part of his frustration comes from my poor communication. He had asked me to project my will toward survival, and I had told him that that was too abstract, that I had no ability to picture "survival" in my head. What I have done consistently from the diagnosis has been to picture concrete things that require joyous life to achieve -- swinging off a rope swing into Bass Lake on my 50th birthday, climbing Mount Katahdin after surgery and chemo; seeing the garden come into bloom in the spring; getting married on our 19th anniversary as a couple. We've done all that in the last year or so. Adrian and I are making similar plans now for a joyful and love-filled Fall, Winter, and beyond.
With thanks and best wishes to all.
John
Welcome John
i'm so glad you join. The group here is wonderful and i think you will benifit a lot from this group. Also i think we can benifit from you.
Jeff
Happy to be n
here!!!0 -
Joyful and love-filled Fall, Winter, and beyond.johnsfo said:My thanks too
And my thanks to all of you too. I am Adrian's partner. Adrian has been telling me about the group, and I just read through the thread. Thank you for all of your kind, sensitive, and very helpful responses to Adrian (and to me indirectly). I see that he's right in describing this group as sensitive and caring, so I'll be reading and posting here for a while too. I have a support group that I meet with in person -- as well as Adrian and many friends -- and all of that helps a lot. But this group looks like it has much to offer, and I'm glad to be joining it.
A few responses to the thread: I admire all of your sensitivity to the variety of ways in which people experience their cancer. I have thought and said from the start that each person finds their own best way to experience the cancer, and that perspective seems abundantly present here. As for feeling afraid and angry, as one of the posts suggests -- not much; I never have for reasons I cannot explain, although I can easily understand how you might think those would be the feeling that motivate my response. My reasons for acknowledging the likelihood of dying from the disease do not arise from fear and anger though; they are just realistic, I think. Colon cancer with bone metastasis has a poor prognosis, and my cancer has been growing at a remarkably fast rate. I hope the cyberknife treatments and the chemo slow it, but I don't think they will stop it forever.
That doesn't seem like doom to me, just a realistic acknowledgment of what I am most likely to experience in the long run. The chemo (irenotecan) makes me very sick, and I was having a hard time evaluating whether experiencing that was worth whatever it might provide in terms of slowing the disease. I found that I am completely unable to make a decision about chemo based on anything rational, so after deeply thinking about the options, I came to realize that chemo, for the time being at least, is one aspect of maintaining hope -- part of my quality of life -- and Adrian and I have decided that I will continue the chemo for now.
In the meantime, Adrian and I have focused from the start on living well with cancer, and we continue to do so. I have had a rough time -- and Adrian even more so, I think -- in the last few weeks (bowel blockage, hospitalization, discovery of cancer back in the colon), but Adrian and I are resilient and emerging from that episode as strong as ever.
I find that I am not only writing this for all of you who I have just met online but for the man I love who is sitting downstairs right now. We have talked a few times in the last few days about how I think about survival. Part of his frustration comes from my poor communication. He had asked me to project my will toward survival, and I had told him that that was too abstract, that I had no ability to picture "survival" in my head. What I have done consistently from the diagnosis has been to picture concrete things that require joyous life to achieve -- swinging off a rope swing into Bass Lake on my 50th birthday, climbing Mount Katahdin after surgery and chemo; seeing the garden come into bloom in the spring; getting married on our 19th anniversary as a couple. We've done all that in the last year or so. Adrian and I are making similar plans now for a joyful and love-filled Fall, Winter, and beyond.
With thanks and best wishes to all.
John
May it be so!!
Peace and blessings... Rob; in Vancouver0
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