3rd month of 6 mo. life expect
First time on the boards so please excuse me if my post is too long-winded.
if I am a 57 year old female who was diagnosed in Oct. 2018 with stage 4 colorectal cancer with metastasis in the lungs. Three doctors said my tumors were very extensive and I was not a candidate for an operation or chemo (I have some exterior tumors with open sores). In conjunction with my initial diagnosis, I also had a superpublic catheter inserted into the front of my stomach since the tumors were blocking my kidneys from functioning well. I also am incontinent with chronic diahrrea and have lymphedema in one leg. Radiation was recommendad strictly for paliiative, not curative, purposes. I was also told if I wanted to be aggressive, they could help me look for clinical trials I might join. I did 20 treatments of radiation and decided not to do any clinical trials since I wanted quality not quantity of life. I enrolled in hospice in late November 2018.
Since I've been in hospice my direct tumor-related pain for the most part has been very little. I would describe it as more of discomfort and dull pain rather than sharp, intolerable pain. in fact, I've only had to take Tylenol to control it. My major pain has been from a changing of my super public catheter which caused an infection and from the lymphedema which makes walking difficult. My incontinence of chronic diahrrea is what negatively affects me the most on a constant basis, in spite of anti-diahrrea meds.
My hospice nurse tells me I am sturdy and my vitals have remained consistent and suggested maybe I should get another opinion as to my life expectancy since I've past the "halfway mark" of my 6 mo. estimate with little decline from when I joined hospice. While part of me thinks it would be good to know I have longer than originally thought, another part of me thinks, I enrolled in hospice because I didn't want to be "poked and prodded" by doctors any more; I wanted to just spend what time I have with my family and not interupt that with trips to doctor and hospital appointments. I also don't want to get my hopes up that I have much longer than the original estimate i was given only to be told that the estimate is still more or less accurate and I've "just been lucky" that my pain level has not been severe.
I'd appreciate any feedback.
Comments
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Decisions are so hard at this point
Welcome to the forum Beldoro.
I'm sorry you have found yourself in this dilema. Decisoins about LIFE and death are so hard. I capitalize life, because I don't just mean being alive, but living life.
I can definitely understand the need and desire to have quality time with loved ones, over constant medical appointments, drugs that mess you up, and side effects.
I do on the other hand think that a second opinion would be a good idea. You can see another Oncologist and tell them what you want, and they can tell you what they think they can or can't do. They can probably go from your previous records without having to poke and prod you around too much.
Just my opinion.
Sometimes I think, if we listen, our heart tells us what we want to do and it is always good to follow your heart. If you think you will end your days thinking 'I should have', then jump on things now, before it is too late. I think going to your grave knowing you did all you could or all your body could do, is a peace we need at the end.
We do have folks on the forum who have been given dates and exceeded them. I was told five years, six years ago. Your days may very well be numbered, but I don't doubt that you can extend them. We also have folks here who were told they couldn't have surgery, but fought hard through treatment, became candidates, had their surgery and are moving along.
I don't want to give you false hope, but hope is there, if it is only extra time.
I wish you the best as you go forward and make decisions. I wish you the quality of life that you desire, but I also wish you longer time with your precious family.
Tru
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Thank You SO much Tru
Trubit, thank you so much for your thoughtful response to my post. I think your dual advice of listening to my heart and making a decision that would not lead me to think "I should have" at the end is a good one.
I'm just so tired. My diagnosis took me by surprise but it was confirmed by 3 oncologists. I just thought I had Crohn's but then in less than one month I dropped nearly 40 pounds, wasn't able to eat or drink much yet was going to the bathroom all the time. SO I went to the ER and that's when I found out I had stage 4 cancer. Initially, in fact, the first oncologist thought I was in such bad shape that he only gave me "a few weeks to a month" to live. The next day, however, after speaking with another oncologist he came back and said maybe it could be 6 months. Two other docs reviewed my biopsy and scans and they also estimated my life expectancy to be 6 mo. All recommended radiation for palliative purposes. The radiation oncologist even said MAYBE he could get me to a year. When I completed the radiation treament I asked the oncologist if he thought my life expectancy was still 6 mo. or if the radiation had helped get me to the year. He sadly replied 6 mo. I said "thats ok because I iinitially thought I'd be dead within one month so each day past that month has been a blessing." So that's when I started hospice care.
Again, thank you so much for your words Tru. It meant the world to me that you responded.
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Welcome Beldoro. I'm sorry
Welcome Beldoro. I'm sorry you're here and are going through such unpleasantness. The diarrhea must be so distressing to deal with, I can't imagine. I'm not sure what I'd do in your shoes. It would be comforting to have the care of a hospice and would be scary to not have that to fall back on. And I agree that quality over quantity is probably the decision we'll all have to make at some point. I know what I'd choose.
I don't know what to say. As Try said, there's always hope. There are miracles whether you believe in that or not but they are rare. And people exceed their life expectancy every day. But there's also reality. I guess the old saying about prepare for the worst but hope for the best applies here. Or however that goes.
For sure you need to be comfortable with your decision and not have regrets. I hope you'll be able to find a solution that you and your family feel good about.
Take care,
Jan
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Thank you Jan
Thank you Jan for welcoming me to the Board and for your words. I know each cancer is different and every BODY reacts to its cancer in different ways so it helps to be able to express my doubts to folks who also have colorectal cancer. I also know that I have been lucky that the tumors haven't directly been causing me as much pain yet as they have in other colorectal cancer patients. The constant diahrrea tires me a lot but then I think "normal" stools would probably be painful so I shouldn't complain about the diahrrea. I just wish it wouldn't be all the time. I can't get a solid night's sleep because I have to change my diapers about 4 times a night. Oh well...
Again, thank you so much for your empathy.
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Welcome! It impressed me that
Welcome! It impressed me that your pain can be controlled by Tylenol, and at the same time I'm reminded that opioids do push a body the other way, towards constipation, so it does make me a bit curious that if you get to the point where you need a bit more pain control, would it affect the diarrhea at all? I don't trust doctors time frames or even let them give me one, ever. It's just not what I choose to focus on, and as you feel strong you may have more options then you know. Quality versus quantity of time is always the big debate around here, but only each of us knows what we really want from the circumstances we find ourselves in. Hope you figure it out and find some peace within...................................................Dave
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Pain level
The Hospice nurse is also surprised that my pain level is not higher at this point in my cancer and can be controlled with just Tylenol. Before my cancer I was always very healthy and rarely took any pain meds. In my 57 years, aside from over the counter cold/flu remedies when needed, I don't think I ever took more than a grand total of 10 Tylenol/aspirin/advill pills. I was given a prescription of hydrocodone when I left the hospital which I filled but have yet to use.
I am also taking an iron supplement because my red blood cells are low. I was told the iron might cause constipation but for me it only caused my diahrrea to decrease (but not stop) for 2 days but then it went back to the constant state. As I wrote, I shouldn't complain because my symptoms could be a lot worse.
I appreciate your kind words and wish for my finding peace Dave.
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Beldoro,
Beldoro,
I'm glad you found this site but so sorry to hear about your condition. I also am 57 and rarely took over the counter or RX pain meds before I was diagnosed with cancer. Life can change so quickly and often we have little control over the changes. You mentioned family so I'm glad you have loved ones near by. I've always loved my family but since my diagnosis they have become much more important in my life. I feel the same way about my close friendships.
It's good to hear you are not in much pain and your vitals have remained consistent. Take one day at a time. If you continue to feel better than expected you may want to seek a second opinion, but you will know at the time if that is the right direction for you. Doctors can not know how much time we have left in this world, but I believe we should all consider each day a gift and cherish it.
Here is a quote that I really like and try to keep at the front of my mind.
"Do not think of yourself as the body, but as the joyous consciousness and immortal life behind it." Paramahansa Yogananda
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Thank you Diane
Diane,
Thank you for your response. I have tried to be in control for most of my life so the changes confronting me now are hard to accept because I know I can not control them at all. However, my family and friends have helped me acknowledge that even without that control I can still be me and I still have value. For that I am sincerely grateful beyond words.
I love the P. Yoganabda quote you shared. I will also try to keep it at the front of my mind.
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Sorry
I'm so sorry that you had to join this group. Wow it sounds like you have been through a lot but I'm glad that you aren't in terrible pain from all of it. It's always a good idea to get a second opinion, and that's just my opinion. But if you are stable and still are managing life - why not see what another doctor has to say. Quality of life to me is important also. Wishing you the best in whatever decision you make and always feel free to come on this board. We are here to help you or just console you whenever you need.
Kim
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Welcome to the board Beldoro.
Welcome to the board Beldoro. I'm so sorry hear that you're in the hospice but glad that you're not in any pain. Quality of life is important to me as well. merely existing is not living and also puts a burden onto my family is just not fair to them. At least that's just my opinion. I know normally they enroll patients into hospice with only 6 months to live. But many patients outlive 6 months also I know someone's mom actually got "kicked out" of hospice after spending 2 years there because she was stable was doing well. Every case is different. I wish you well and sending you best wishes. We will always be here whenever you need to chit chat or vent or just need support.
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Thanks Diane_KDiane_K said:Beldoro,
Beldoro,
I'm glad you found this site but so sorry to hear about your condition. I also am 57 and rarely took over the counter or RX pain meds before I was diagnosed with cancer. Life can change so quickly and often we have little control over the changes. You mentioned family so I'm glad you have loved ones near by. I've always loved my family but since my diagnosis they have become much more important in my life. I feel the same way about my close friendships.
It's good to hear you are not in much pain and your vitals have remained consistent. Take one day at a time. If you continue to feel better than expected you may want to seek a second opinion, but you will know at the time if that is the right direction for you. Doctors can not know how much time we have left in this world, but I believe we should all consider each day a gift and cherish it.
Here is a quote that I really like and try to keep at the front of my mind.
"Do not think of yourself as the body, but as the joyous consciousness and immortal life behind it." Paramahansa Yogananda
That is a beautiful quote, and one I have not heard before. Like our new friend, Beldoro, I will remember it.
Tru
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If you're interested in moreTrubrit said:Thanks Diane_K
That is a beautiful quote, and one I have not heard before. Like our new friend, Beldoro, I will remember it.
Tru
If you're interested in more inspiring words of wisdom I recommend a book called Autobiography of a Yogi, by Paramahansa Yogananda.
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Thank youAnnabelle41415 said:Sorry
I'm so sorry that you had to join this group. Wow it sounds like you have been through a lot but I'm glad that you aren't in terrible pain from all of it. It's always a good idea to get a second opinion, and that's just my opinion. But if you are stable and still are managing life - why not see what another doctor has to say. Quality of life to me is important also. Wishing you the best in whatever decision you make and always feel free to come on this board. We are here to help you or just console you whenever you need.
Kim
Thank you Kim, your empathy means a lot. I'm a big believer in second opinions which is why I got 3 opinions when first diagnosed. I'm hesitant about getting another opinion now, which would be the 4th, because I fear getting my hopes up and then being told the first opinions are accurate give or take a few months. Right now, I'm in the frame of mind of waiting until the 5th month and if at that point I physically feel the same, then going for another opinion. Anyway that's my current thinking.
Again, thank you for your support.
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Many thanks
Many thanks Lily Flower for your reply. I've also been told some patients "graduate" out of hospice. Given my "stable condition" during the first 3 months, perhaps I could be one of those graduates but I'm a realist and don't want to set myself up for false hope. As I wrote Kim, right now my thinking is to wait until the 5th month and then seeking out another opinion if I physically feel the same.
I appreciate your offer to vent which on reflection is what my original post was...its good to know there are people who understand what I'm going through.
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Hope you go for that 4th opinion
It seems if your vitals are all good and pain is minimal the radiation may have done more for you than the radiologist believed. It can't hurt to check into clinical trials at this point especially if you're not having much pain. It's your decision and I understand that you don't want to be sick from chemo or any other treatment related illness. Whatever you decide, I pray that you are able to enjoy the time you have left with your family.
That's really all that matters to me since my daignosis. I was told I had 6 to 18 months to live and that was 3 years ago. I've had a number of treatments since then and have listed most of that information on the CSN My space. I'm looking into clinical trials for when the Folfiri stops working for me. I intend to keep fighting the cancer until there are no remaining options. I pray for that miracle cure and feel like it may be right around the corner for all of us. The researchers have truly worked miracles in so many areas of cancer treatments, it's hard not to believe that they are close to a cure for colon cancer. That's what keeps me fighting.
Praying for your peace and comfort in whatever decision you make.
Joan
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Thank you Joan
Joan, thank you so much for your thoughtful reply and sharing your experience with me. My family and I also think the radiation treatments i had did help decrease the pain level I could have experienced. For that I am grateful.
I'll check out your CSN MySpace. Thank you for your prayers for my peace and comfort.
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Hi Trubrit,Trubrit said:$1.99
Thanks Diane
I just purchased it on Kindle for $1.99. Can't beat that.
Tru
Hi Trubrit,
If you are interested there's a website for Yogananda's fellowship, Self Realization, which has more wonderful affirmations.
This one I love.
“I relax and cast aside all mental burdens, allowing God to express through me His perfect love, peace, and wisdom.”
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