Odd place
Even being NED brings me no happiness. Oh, don't get me wrong, to hear of your victories causes my heart to soar, just as the turns for the worst cause me anguish (I still can not bring myself to read all of the comments following Peter's last post or any of the more recent posts on people suffering setbacks or worse). I have a grandson, Malachi, whom I love and another grand on the way! My youngest child is getting married in just a few weeks and he is the last! I have never felt more love for my wife in our 29 year marriage, nor more love from her than what I now receive!
Friends and family who have followed some of my cancer journey via my blog ask me, "Why have you not posted for some time and when are you going to post again?" "Why have you not posted?" My friends and family talk funny, no? The truth is, my blog and what humor it posseses, was part of my way of dealing with cancer. Right now nothing strikes me as overly funny and I have nothing good to post. I can read funny things and they make me smile. Who can read Kerry's posts and not at least smile? I get all the love and encouragement a person could want. You guys have all been great too!
I have a deep close relationship with God. Christian, born again, believer, Christ Follower, or what ever you care to call it. I am at peace with whatever happens.
I am not depressed, but for the @$!&ing life of me I can not seem to find happiness and it is driving me nuts. I used to find so much joy in my life. Now I don't think I would not know joy if I tripped over it. In fact, I think if I did find it I would trip over it and bust a hip or something. Don't get me wrong, I am only 50 and other than the whole diaper thing, which I assumed I would be dealing with at 95, not 50, I don't feel old at all.
This is such a freaking funk, I hate it. Probably more than I hated having cancer.
Sorry to rant. This is like my state of the union address and I did not know where to put it all down, if not here.
Comments
-
I understand
Finally someone that is on the somewhat same page. I am 43 finished chemo 10/08, had all my scans and blood work fine, but I am just feeling blah. My husband of 19 years has been by my side. My kids are thriving. We raised my 2 nephews and they are one their own and doing well. I try to tell my husband that I never expect him to understand, because I don't understand. While I was going through chemo I was fighting and surviving the present. You have to get through the day. NOW, I am done with treatment and i am more uneasy than I was 2 years ago. I think it is harder now because the dust has settled and I have gotten on with my life and trying to find my "new" normal. I get more anxious just waiting for the next bomb to go off. I don't want to celebrate NED because I am afraid if I do another "bad" thing will happen. I don't want to be a cancer victim, yet I am. I want to pretend that year never happened, but it did. Yhis isn't what I expected my life to be at 43, but it is. Then, I pinch myself becuase it has been 2 years and I survived. What is next? Will I ever be "normal" again? I can't eat what I like, I need to be near a bathroom all the time, that mystery gas always arrives at the most inappropriate time. Sex, forget it. But I am alive. What's next.... No one can ever understand. I feel your frustration.0 -
I wrote much the same on my
I wrote much the same on my blog a few months ago after my liver resection. Are you a mind reader? http://www.peggyluckey.blogspot.com
I think perhaps you are in this emotional void or purgatory. You spent so much time, energy and emotion on this disease...the fallout and the consequences of the disease- job loss, side effects, etc...I think you/we just get DRAINED. Done. Over It. Yeah, there are all these "shoulds" We should relish our cancer-free status and hit the road with all our new-found gusto, apprectiation for life, blah blah blah.
I think, give your self a break from all that high-energy sapping "feeling" and just "be"
And Me thinks I need to follow me own advice!
(hugs)
Peggy0 -
You're Not Alone
Everything that is in my life is pre-cancer and post-cancer. My living has changed, my life has changed, my way of thinking has changed, my attitude has changed, my sex life has changed, bathroom issues have changed (sometimes no warning is detected - ugg) etc, etc, etc, everything has changed. Called someone about getting some type of counseling but haven't done it yet since insurance doesn't pay for it and we are on monthly budget with hospital for fees.
Sometimes people just don't understand what one goes through once they have cancer. They think that if you are NED then you should be the happy go lucky person you were, but we aren't. Not saying that I'm not ever happy because that's not the case. Have a wonderful understanding husband and family. Just knowing that they are there for me has helped my attitude and way of life. Still have a good sense of humor, but life has changed for me. A smile comes my day every day no matter what and so sorry that you are having such a difficult time.
This disease can steal so much more than dignity, self assurance and life. It is a disease that will take much more than a removal of a body part. It will take away thought process, and make you change in ways not even imaginable.
You sound like you could use some help somehow, and it's easier said than done. Just keep coming on this board. So sorry for your financial difficulties too. That can be very stressful and a big downer.
Hoping you feel better soon. But just wanted to know that you aren't alone in your thinking. Only we here on this board can know what one another thinks and feels.
Kim0 -
Kim, thanks for puttingAnnabelle41415 said:You're Not Alone
Everything that is in my life is pre-cancer and post-cancer. My living has changed, my life has changed, my way of thinking has changed, my attitude has changed, my sex life has changed, bathroom issues have changed (sometimes no warning is detected - ugg) etc, etc, etc, everything has changed. Called someone about getting some type of counseling but haven't done it yet since insurance doesn't pay for it and we are on monthly budget with hospital for fees.
Sometimes people just don't understand what one goes through once they have cancer. They think that if you are NED then you should be the happy go lucky person you were, but we aren't. Not saying that I'm not ever happy because that's not the case. Have a wonderful understanding husband and family. Just knowing that they are there for me has helped my attitude and way of life. Still have a good sense of humor, but life has changed for me. A smile comes my day every day no matter what and so sorry that you are having such a difficult time.
This disease can steal so much more than dignity, self assurance and life. It is a disease that will take much more than a removal of a body part. It will take away thought process, and make you change in ways not even imaginable.
You sound like you could use some help somehow, and it's easier said than done. Just keep coming on this board. So sorry for your financial difficulties too. That can be very stressful and a big downer.
Hoping you feel better soon. But just wanted to know that you aren't alone in your thinking. Only we here on this board can know what one another thinks and feels.
Kim
Kim, thanks for putting those thoughts out there, you expressed what I feel also.
and uggh, the financial crud. I am doing a very bad job at facing the mountains of paper work. bill collectors after me for hospital bills....once chemo robbed my brain for a year, i am just shamefully avoiding dealing with it.
I must get back on the wagon and try and get some type of job...have no idea how we'll pay for the loan we got for daughter's first year of college...i need to medicate myself tonight so i can sleep!0 -
I understand
Hey, Rick.
It's just really, really hard to get back to what used to be normal after going through something like this. Truth is, what you end up doing is finding a new normal. I know when my husband had his sudden cardiac arrest 10 years ago, that was a dividing line for me. For many years, if I thought back on something that happened before the arrest, I would think "I was happy then." I felt like I couldn't find my happiness again.
Though I still deal with sometimes severe post traumatic stress over that incident, I was basically doing well until my cancer diagnosis. And now I'm happy on the outside, not so happy on the inside. I can literally feel my facial expression change when I read or hear about cancer.
I hope you can find someone really good and understanding to talk to and get some help. You already sound like you have a supportive family situation.
*hugs*
Gail0 -
Ya Know, come to think of it........tootsie1 said:I understand
Hey, Rick.
It's just really, really hard to get back to what used to be normal after going through something like this. Truth is, what you end up doing is finding a new normal. I know when my husband had his sudden cardiac arrest 10 years ago, that was a dividing line for me. For many years, if I thought back on something that happened before the arrest, I would think "I was happy then." I felt like I couldn't find my happiness again.
Though I still deal with sometimes severe post traumatic stress over that incident, I was basically doing well until my cancer diagnosis. And now I'm happy on the outside, not so happy on the inside. I can literally feel my facial expression change when I read or hear about cancer.
I hope you can find someone really good and understanding to talk to and get some help. You already sound like you have a supportive family situation.
*hugs*
Gail
Im not really happy either, I say I am but look at me...I wear a bag with crap in it all day long, half the time it smells. I can't go anywhere without constantly checking to see if its still there or at least if the shirt I am wearing is covering it up, or trying to make sure that maybe when I am holding hands in a circle of prayer that I don't gas. I am 55 and my wife is 37 and I am almost completely useless in the sex department in certain areas. I owe every hospital,nurse,Dr, and clinic I think in the United States. I worry what my wife and children will do if I was to die. The things I use to take for granted I now still do. Life is so blah, I am so tired of being tired, I am so tired of not being able to have sex all night and so tired of not having much money, and so tired of just simply being so tired....but then, when I really get to feeling all woe is me a thought runs through my mind...that all of our friends that have passed would give everything to simply have what we feel is stressing us out..life as we know it now....and then, to me it all starts getting better then......
Rick, I am alot like you in most respects, both physical and mental, but we have to find the deep companionship that has always been there with our spouses when there is nothing else good to smile about. There is always her, she loves you, and you love her, and in the end all there will be is what there was before..just you, and her. and really, isn't that all that matters...The rest is simply material.....Love to ya buddy....Buzz0 -
OK, I think get itBuzzard said:Ya Know, come to think of it........
Im not really happy either, I say I am but look at me...I wear a bag with crap in it all day long, half the time it smells. I can't go anywhere without constantly checking to see if its still there or at least if the shirt I am wearing is covering it up, or trying to make sure that maybe when I am holding hands in a circle of prayer that I don't gas. I am 55 and my wife is 37 and I am almost completely useless in the sex department in certain areas. I owe every hospital,nurse,Dr, and clinic I think in the United States. I worry what my wife and children will do if I was to die. The things I use to take for granted I now still do. Life is so blah, I am so tired of being tired, I am so tired of not being able to have sex all night and so tired of not having much money, and so tired of just simply being so tired....but then, when I really get to feeling all woe is me a thought runs through my mind...that all of our friends that have passed would give everything to simply have what we feel is stressing us out..life as we know it now....and then, to me it all starts getting better then......
Rick, I am alot like you in most respects, both physical and mental, but we have to find the deep companionship that has always been there with our spouses when there is nothing else good to smile about. There is always her, she loves you, and you love her, and in the end all there will be is what there was before..just you, and her. and really, isn't that all that matters...The rest is simply material.....Love to ya buddy....Buzz
OK, I think get it.
You all are just baiting me right? Na, this is just too easy.
Kerry0 -
you speak to a lot of us
We all crossed that line the day we heard those words and there's no going back. I also used humor in dealing with the crap that was chemo and my blog reflected that. My family and friends appreciated being able to read and I think the humor was a good way of being honest and truthful without being blunt. I no longer blog, since I'm not in current treatment of any kind. I've tried, but every day life just isn't that interesting from my perspective. I think that's ok; only a few people are gifted writers and can continue to find the funny in the everyday mundane. As far as finding the happiness, I also live day to day. I have bowel issues that my daily life now seems to rotate around, due to fallout from past surgeries and infections. Every day I get up knowing the pattern my day is most likely going to take. I have begun going to see a counselor and he is really helping me a lot! My daughter researched and found him for me, he specializes in cancer survivors and has dealt personally with it, his father had colon cancer and mother had breast cancer. He really treats the whole, body mind and soul. There is a lot of PTSD from this disease to deal with. I struggle to remember to be thankful for what I have, rather than sad at the loss of what was. I also struggle with the battle within my own head; I live alone and my job is done from my home as well, so I am inside my head pretty much 24/7 most weeks. I have to remember to take breaks and at least have telephone conversations with others outside my world so I can stop concentrating on my situation some time. I'm learning relaxation techniques to help when the anxiety starts building and when the internal chatter starts getting out of control. I'm learning to let go of those things I have no control over, but it's a constant battle. I don't doubt that that will be true for quite some time. I didn't arrive at this place overnight, and I won't be able to move on overnight either. Time and patience, and the help and love of my family and friends will get me through and it will get you through this time as well!
mary0 -
Rick -
Re:
"This is such a freaking funk, I hate it. Probably more than I hated having cancer."
And why not? Why should you feel differently?
Cancer not only robs us of health, it robs us of the security of decent
health we thought we had, as well as the future we though we might
be able to eventually enjoy.
You had a right to be normal, and it's been taken away by some
indiscriminate rogue cell that just does not want to die as it should have.
For most of us, we have lost some bodily functions; some noticeable
and some that only we know and feel. It's a loss, and regardless
if we live or not, it will be a loss until the end; a dramatic change
in our life-style that we will never get back.
It's a loss, Rick. And we mourn any loss; there's nothing to
be happy about, when you lose part of your life.
Sure, merely being "alive" may cause some to act thrilled while they
are in public view, but we all mourn our losses privately.
Forums like this, allow us to vent safely....
You are no different than anyone else here. Cancer is the common
denominator; our losses are unanimous, and our fears and sorrow equal.
Stay well; with time, comes memories......
John0 -
Not Alone
Not that it makes everything better but it's something that I think most all of us can relate to experiencing at one point or another. This cancer gives us what I refer to as "new normals" and not all of them are by any means good. It just becomes how are days are now, at least from a physical point. One of the few things we can control is how we feel emotionally and even that is hard as hell as you are experiencing it now.
I don't like being in funks either Rick, I get them and they stink and can be tough to get out of. Sometimes something unexpected can snap us out of them. I hope yours passes quickly.
-phil
PS: I don't think any of us should ever have to be or say that we are sorry for blowing off steam, venting, rants, or any other thing like that. We NEED to do it.0 -
Great Points...all of them, thanks for bringing it up..PhillieG said:Not Alone
Not that it makes everything better but it's something that I think most all of us can relate to experiencing at one point or another. This cancer gives us what I refer to as "new normals" and not all of them are by any means good. It just becomes how are days are now, at least from a physical point. One of the few things we can control is how we feel emotionally and even that is hard as hell as you are experiencing it now.
I don't like being in funks either Rick, I get them and they stink and can be tough to get out of. Sometimes something unexpected can snap us out of them. I hope yours passes quickly.
-phil
PS: I don't think any of us should ever have to be or say that we are sorry for blowing off steam, venting, rants, or any other thing like that. We NEED to do it.
It helps me as well as everyone else when we vent. It allows us to vent as well with things that bother us that we normally won't open up to and admit.....Hope you feel better...0 -
It's called SHOCK
Hello my friend. I sometimes go though the same thing you're feeling. I think we're still in shock about the whole cancer thing. Hell maybe it's Post Traumatic Stress thing that people get. We've been through a mixed up crazy time in our lives. Had a bunch poison pumped into us, Radation galor, and yes... and more strange things shuved where the sun dont shine!! LOL No wonder we're a little messed up
We'll be okay it just
might take awhile!!
Brooks0 -
Hey Ricky!
You of anyone certainly deserve a rant..or two...or more... You have certainly lifted my spirits uncountable times with your positiveness + humour.
I want to congratulate you on your recent good results. Although I am not where you are in terms of cancer, I think I can understand where you are at. You have been through a lot...diagnosis, surgery, chemo, radiation (I think), job decisions to make etc. I think of it kind of like post traumatic syndrome - sometimes it is after we have been through the worst of it that we stop + realize just what we have been through. Figuring out the next step career-wise is not easy either. I think you will find the "joy" again; you need to give it some time, but it sounds like you have too many passions - wife, kids, grandchild, cooking, eating, God, etc, not to get it back.
I am glad we all have this place where we can come to rant, share good news + sorrow, etc. I am glad you have your son's wedding + birth of your grandchild to look forward to, + hope you will share that with us. And after 29 comes 30, a huge cause for celebration. By then I see you in a great job, bouncing the new baby on your knee + thinking back to this time as a distant memory.
Good thoughts are coming at you!
(feel free to rant whenever, you have totally earned it!)0 -
Thank you all
I was unsure if reading your comments would be of any value, but thankfully my doubts were baseless.
Everyone collectively made such a strong case for, at the very least, being thankful. And after reading each post I was more and more encouraged. That was odd to me, not because of your posts, but because I had not expected to be encouraged or more thankful. I thought the funk would steal away any feeling of benefit from reading your posts.
I had an epiphany this morning. I think I know the root cause of the funk. Since my cancer dx, I have been able to call the shots. The outcome was mostly irrelevant and future based. It was the control, deciding the course of action based on the knowledge I had, regardless of consequence. Even if I died, they were my decisions that would have brought me to that point.
There has been one thing recently that has been not in my control. Diarrhea. For two weeks now everything in my arsenal of knowledge and experience has been unable to control it. You can probably guess when I had my epiphany. Every night/morning once, twice or three times I have to deal with cleaning myself up - everything from "spotting," as my surgeon likes to call it, to a full load. No protocol, system, diet or habit seems to help.
In the past, at times, I would avoid sleeping so as to avoid any surprises when I awoke. I would simply wait until I had control again and then sleep. Now even taking Lomotil, Immodium and eating only Metamucil wafers (which I have come to loath) will slow things down.
I do have one short term option and one long term option to consider and I wish it was not the weekend so I could at least get the short term option moving. The next thing to try is tincture of opium - laudanum, I think it is called. It is as bad, and perhaps as good as it sounds. Two or three teaspoons can OD and kill you. My guess is you don't take it by the teaspoon, which is good because it seems a teaspoon of the stuff costs nearly $30. I am not even sure if my insurance would cover it. It used to be cheaper than alcohol and used for almost every ailment.
If it turns out that short term solution either does not work or the problem remains a long term one, I think I really have one option - that is to go back to having an ileostomy, permanently. As much as that would suck (I would use stronger wording, but I prefer not to get banned from my 24/7 support group) I have more than nine months experience in dealing with it. In the last few months of having my ileo, I would even call my experience successful. I COULD live with that. I CAN NOT live with this.
I think, if I did not have to deal with diarrhea I coulees easily rid myself of "The Funk.". Sounds like a B horror movie and so it would be.
If I was a billionaire I would give you each a million dollars. If I was a millionaire I would give you each thousands. If I was very wealthy I would give you each gifts, but as I am an unemployed cancer patient, quickly running out of money, I can only offer you the heartfelt gratitude that, at the very least, you deserve. Thank you.
P.S. I hate to detract from the intended effect of the thank you, but has anyone had any thing other than laudanum given for prolonged, very severe diarrhea (we are talking dysentery severe)? I had heard of sandostatin used before, but I think if it is available laudanum is what is next.0 -
Poops and stuffRickMurtagh said:Thank you all
I was unsure if reading your comments would be of any value, but thankfully my doubts were baseless.
Everyone collectively made such a strong case for, at the very least, being thankful. And after reading each post I was more and more encouraged. That was odd to me, not because of your posts, but because I had not expected to be encouraged or more thankful. I thought the funk would steal away any feeling of benefit from reading your posts.
I had an epiphany this morning. I think I know the root cause of the funk. Since my cancer dx, I have been able to call the shots. The outcome was mostly irrelevant and future based. It was the control, deciding the course of action based on the knowledge I had, regardless of consequence. Even if I died, they were my decisions that would have brought me to that point.
There has been one thing recently that has been not in my control. Diarrhea. For two weeks now everything in my arsenal of knowledge and experience has been unable to control it. You can probably guess when I had my epiphany. Every night/morning once, twice or three times I have to deal with cleaning myself up - everything from "spotting," as my surgeon likes to call it, to a full load. No protocol, system, diet or habit seems to help.
In the past, at times, I would avoid sleeping so as to avoid any surprises when I awoke. I would simply wait until I had control again and then sleep. Now even taking Lomotil, Immodium and eating only Metamucil wafers (which I have come to loath) will slow things down.
I do have one short term option and one long term option to consider and I wish it was not the weekend so I could at least get the short term option moving. The next thing to try is tincture of opium - laudanum, I think it is called. It is as bad, and perhaps as good as it sounds. Two or three teaspoons can OD and kill you. My guess is you don't take it by the teaspoon, which is good because it seems a teaspoon of the stuff costs nearly $30. I am not even sure if my insurance would cover it. It used to be cheaper than alcohol and used for almost every ailment.
If it turns out that short term solution either does not work or the problem remains a long term one, I think I really have one option - that is to go back to having an ileostomy, permanently. As much as that would suck (I would use stronger wording, but I prefer not to get banned from my 24/7 support group) I have more than nine months experience in dealing with it. In the last few months of having my ileo, I would even call my experience successful. I COULD live with that. I CAN NOT live with this.
I think, if I did not have to deal with diarrhea I coulees easily rid myself of "The Funk.". Sounds like a B horror movie and so it would be.
If I was a billionaire I would give you each a million dollars. If I was a millionaire I would give you each thousands. If I was very wealthy I would give you each gifts, but as I am an unemployed cancer patient, quickly running out of money, I can only offer you the heartfelt gratitude that, at the very least, you deserve. Thank you.
P.S. I hate to detract from the intended effect of the thank you, but has anyone had any thing other than laudanum given for prolonged, very severe diarrhea (we are talking dysentery severe)? I had heard of sandostatin used before, but I think if it is available laudanum is what is next.
With an Ileo, eating 1/2 grapefruit, or an orange. or a glass of
high-pulp orange juice, will slow output to a crawl without harm.
High carb foods thicken output, while 0 or low carb foods will
produce a lot of liquid. So diet can make a tremendous difference!
Diarrhea? You can have too much, or too little bacteria causing it,
but either way, a gastrointestinal doc oughta' know how to clear it up.
I have an ileo that they told me they could reverse. Aside from
the fact it would involve the same intensive surgery as the original
two surgeries, I have only about a foot of colon left. Getting
a reversal will more than likely mean that I would have essentially
the same frequent and liquid output I now have, but only out of
my rear end, instead of this ileostomy bag.
If that's what's happening to you, egads, but I wish your doc
would have informed you of that before the reversal.
If it's not your case...... then get to a good gastro specialist
and get it resolved.
Good luck; my wishes for less squirts are with you.
John
PS:
I accept PayPal0 -
LafJohn23 said:Poops and stuff
With an Ileo, eating 1/2 grapefruit, or an orange. or a glass of
high-pulp orange juice, will slow output to a crawl without harm.
High carb foods thicken output, while 0 or low carb foods will
produce a lot of liquid. So diet can make a tremendous difference!
Diarrhea? You can have too much, or too little bacteria causing it,
but either way, a gastrointestinal doc oughta' know how to clear it up.
I have an ileo that they told me they could reverse. Aside from
the fact it would involve the same intensive surgery as the original
two surgeries, I have only about a foot of colon left. Getting
a reversal will more than likely mean that I would have essentially
the same frequent and liquid output I now have, but only out of
my rear end, instead of this ileostomy bag.
If that's what's happening to you, egads, but I wish your doc
would have informed you of that before the reversal.
If it's not your case...... then get to a good gastro specialist
and get it resolved.
Good luck; my wishes for less squirts are with you.
John
PS:
I accept PayPal
Well John, i have zero colon left. I knew what was possible and what I had going into this. My output had been great just prior to takedown. I could have made roses if I had a pastry tip for my bag. My output after takedown was slowly headed in that direction and then bam, only diarrhea, no matter what I tried and did. Nothing has slowed it down. I was getting to be a pro at managing BMs and working toward better and better stools. Months of trail, learning and error, all flushed away in an instant. I had almost three good months prior to the last two weeks.0 -
You will find the fix to your problemRickMurtagh said:Laf
Well John, i have zero colon left. I knew what was possible and what I had going into this. My output had been great just prior to takedown. I could have made roses if I had a pastry tip for my bag. My output after takedown was slowly headed in that direction and then bam, only diarrhea, no matter what I tried and did. Nothing has slowed it down. I was getting to be a pro at managing BMs and working toward better and better stools. Months of trail, learning and error, all flushed away in an instant. I had almost three good months prior to the last two weeks.
There you go, that’s the Rick I know. You will find the fix to your problem.
Kerry0 -
Opium tinctureRickMurtagh said:Laf
Well John, i have zero colon left. I knew what was possible and what I had going into this. My output had been great just prior to takedown. I could have made roses if I had a pastry tip for my bag. My output after takedown was slowly headed in that direction and then bam, only diarrhea, no matter what I tried and did. Nothing has slowed it down. I was getting to be a pro at managing BMs and working toward better and better stools. Months of trail, learning and error, all flushed away in an instant. I had almost three good months prior to the last two weeks.
I was on a regint of opium tincutre and lomotil.
This time last year, 4 months into my dx, surgery,ileo etc I was major anorexic - imy ileo output was frequent and loose- losing too much nutrition, i wasn't eating anyways etc...i went to hospital because of a possible blockage and pain in rectum..anyway, other things included me getting good TPN? vein in my neck..tube down my nose into my stomach etc..
The surgeon had me go on tincutre of opium- i would dispense it in a tiny vial/plunger..tasted nasty. But it WORKED. Along with lomotil, my output began to get thick..so much so that my ususal cleaning of my bag wasn't so easy (I drained the bag and used a large plunger/shot thingy from the ER to rinse my bag)
My insurance did cover it. It only took a week or so to get thicker output. I didnt OD or anything....!!!
((hugss))
Peggy0
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