"Slowly Learning to Live with the Physical Pain of Cancer"

Sundanceh
Sundanceh Member Posts: 4,392 Member
edited December 2013 in Colorectal Cancer #1

Note:  I need to talk here and this could be one of my last chances to write a good post.  Thanks for listening.

 

What does it feel like when the body starts dying?

I’ve asked myself that question the past several months as I’m battling my 4th recurrence.  There are times where I feel like my body feels like it is physically dying some days. 

Some days I’ve been better than the next or the preceding day.  There seems to be no rhyme or reason.  What seems to have gotten to me the most is the PAIN from the lung pleura.  This is the worst place to get it in the lung it seems.  There is a lot of associated pain in there and surgically it is a real challenge to operate.  It’s all about location. 

Even with the pain medication, I’m having a hard time writing to you today.  I have a high tolerance to pain meds so I’ve done well with staying with it and such…but as the doses go up, I can feel myself waning. 

Appetite is good some days, others not so much.  It’s so hard to keep a balance on everything.  There are days lately when I just want to give in and wish I would just blow away (without the pain that must come with it).

It’s so hard being in pain 24/7…and my onc said it’s hard to eradicate all the pain.  I know this.  It seems you either have to be dead or comatose….neither good choices. 

Cancer can turn so quickly….missing those treatments to try and go on that failed trip was good in the fact that I lived through the appendix fiasco….but it set me back on treatment.  Who knows what was right or wrong there.

I’m in so much pain, it’s hard to care about that anymore.

Ann said it good the other day….the pain makes it hard to “hear” anything.  I know what she means. 

It’s just hard to live like this….and you know in your heart it is going to get progressively worse.  Sometimes, you just wish you could flip the switch yourself to end the suffering.  It is amazing how quickly things can change in the cancer world.

I’ve heard it asked here before if cancer hurts?

Yes, it can.  Mine just feels like there is less wiggle room to breathe and find any kind of relief.  It’s hard to stand for long or sit down….and my favorite…lay down. 

I get upset when the body begins to fail us….when we begin to lose the control to have control of ourselves.  You have to fight the pain to make your appts.  One day, I was in the appendix guy’s waiting room and hurt so bad, I couldn’t sit up.  There we people all around and you’re trying to put on the brave face but you know people are noticing you hurting. 

Walk out of the hospital doors and there is another life going on out there…..one you had…and lost.

You know what’s funny?

About 4-months I was doing (or thought I was) pretty good.  No sign of cancer….I was on no medication but a Zytrtec tablet for allergies.  I was writing at my highest level…..about to get an article published….and felt like I was helping people really good.

And then the rug came out from under me…

Now, I don’t know where I’m headed or how long it will take.  Part of me wants to go….part of me wants to stay…..but not like this indefinitely.  It’s painful watching it slip away.  I’m still ‘good’ but bad at the same time. 

I guess I’m just scared about the future now….really for the 1st time. 

I was too naïve before….now I just know too much….but on the other hand, not enough. 

I’m sorry I can’t be with you more….I often wonder how much more I’ll be able to participate unless we turn a corner in the relief department.  There’s gotta be something. 

Just know I love you….I miss you….and I have not forsaken you.  I’m just having a hard time these days doing. 

We’ll hope treatment buys me some more time….or even works. 

It’s all scary stuff.

It’s true what they said…..”When you got your health – you got it all.” 

I’ve got to go now….it took me a couple of passes just to write this dribble. 

I'll summzarize by just saying that I'm trying to find a way to live with the pain of cancer.....and it (ain't) easy after all.

I'm still 4-months behind my boy,Phil.....but now I wonder for how much longer. 

Gotta' go lay down again folks.....sorry this was not a better post.....but it is a snapshot of what I'm dealing with....maybe it will help someone down the road.  I'll keep trying.  Chemo has been rescheduled for this upcoming Friday.

Best of luck and wishes to everyone out there!

Love/Craig

«13

Comments

  • esk2poo
    esk2poo Member Posts: 25
    Craig,
    I don't post much but

    Craig,

    I don't post much but always lurk. Don't take this personal but at first, I used to just skip over your posts. They were too long. I couldnt stand reading in school and not even a kids book for my children. I dont know, maybe I have ADHD but we never heard of it when I went to school and really don't care. Add in what I still call chemo brain and I do not remember the first sentence I read after I read the second one. But I have become quite fond of you and your writing. I hope you can find some major relief from the pain. It sucks royally. I have the neuropothy and 6 herniated discs now along with the arthritis, stenosis, and all the other crap I shouldn't know how to spell. I myself have always said when I get to that point, I am going to be so high, I will not know what is going on. There are too many good drugs out there to really have any pain in the state your in. Hope you sought pain management. I believe I read in the past you had problems with fentanyl. That's a shame if so. I wouldn't be able to walk without it.Good luck,

    Allen

  • annalexandria
    annalexandria Member Posts: 2,571
    Oh Craig...

    I'm so sad reading this, but also glad that you gave up some of your precious energy to write it.  You don't have to be witty or profound or anything with us.  Just letting us share the journey with you, as best we can, is enough.  

    I can "hear" the loss of hope in your words and I know at least some of that is from the pain.  I said in my other comment that chronic pain makes it hard to hear anything, but that's not entirely true.  What you hear is pain itself, whispering non-stop in your ear that things will never be better, that the hell you are in at this moment is all you will experience for the rest of your life.  I can completely understand how worn down you must feel.

    I want to hold onto hope for you, pal.  I want to believe, and I continue to believe, that this chemo will help you once it gets underway.  And then the pain will have to shut its f'ing mouth for a while and let you hear what the rest of the world has to say.

    Try to hold tight for a little longer, see how the tx plays out.  I know your hopes for the future have been really destroyed by this latest round.  I'm asking whoever is in charge of this universe to give you the time you need to heal and regain a little of that hope you once had.  And I hope you keep coming here just to talk, knowing we don't need anything fancy.

    Lots o' love~AA

  • UncleBuddy
    UncleBuddy Member Posts: 1,019
    I'm sorry that you're in so much pain.

    This miserable disease just sucks all the joy out of people. I keep looking for your posts and hope you can find some relief from your pain. I appreciate your honesty because I know I have to face the fact that my sweet brother is heading down the same road as you. I am pragmatic and like to know what is happening, what can be done and what to expect. In a crazy way, it helps me deal with all the stuff that will happen, just by knowing what CAN happen. I don't know if that makes any sense, but I see my broter getting weaker and weaker. I guess your voyage is preparing me for his.

     I pray and hope that you are abe to get better and your pain stops. Your posts always caught my attention and I love following your story. I just hope there's a good ending.

    Please take care and get well.

    Lin

    {{{HUGS}}}

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    esk2poo said:

    Craig,
    I don't post much but

    Craig,

    I don't post much but always lurk. Don't take this personal but at first, I used to just skip over your posts. They were too long. I couldnt stand reading in school and not even a kids book for my children. I dont know, maybe I have ADHD but we never heard of it when I went to school and really don't care. Add in what I still call chemo brain and I do not remember the first sentence I read after I read the second one. But I have become quite fond of you and your writing. I hope you can find some major relief from the pain. It sucks royally. I have the neuropothy and 6 herniated discs now along with the arthritis, stenosis, and all the other crap I shouldn't know how to spell. I myself have always said when I get to that point, I am going to be so high, I will not know what is going on. There are too many good drugs out there to really have any pain in the state your in. Hope you sought pain management. I believe I read in the past you had problems with fentanyl. That's a shame if so. I wouldn't be able to walk without it.Good luck,

    Allen

    Thanks, Allen:)

    Fentanyl is a godsend:)

    Unfortunately, I've moved up to .075mcg....with Dilaudid @ 4mg every 6 hours or so.....I could not function any without them.

    It looks like we are going to have to move up the dosage on the Fentanuyl though to 1.0....fortunately I had a couple of .025's left over....but even that is not quelling the relef as it once did.

    I'm upset because I just changed out yesterday, but feel just as bad before....mostly bedridden the last couple of days with no appetite to speak of....pain shuts that down.

    I was doing better a couple of weeks ago, as I've been helping my wife with business about the house......I take those and do what I can.....because other days are like this one and yesterday.

    Thanks for your post....nice to meet you.  I'm glad my writing WON you over, lol!

    -Craig

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

    Oh Craig...

    I'm so sad reading this, but also glad that you gave up some of your precious energy to write it.  You don't have to be witty or profound or anything with us.  Just letting us share the journey with you, as best we can, is enough.  

    I can "hear" the loss of hope in your words and I know at least some of that is from the pain.  I said in my other comment that chronic pain makes it hard to hear anything, but that's not entirely true.  What you hear is pain itself, whispering non-stop in your ear that things will never be better, that the hell you are in at this moment is all you will experience for the rest of your life.  I can completely understand how worn down you must feel.

    I want to hold onto hope for you, pal.  I want to believe, and I continue to believe, that this chemo will help you once it gets underway.  And then the pain will have to shut its f'ing mouth for a while and let you hear what the rest of the world has to say.

    Try to hold tight for a little longer, see how the tx plays out.  I know your hopes for the future have been really destroyed by this latest round.  I'm asking whoever is in charge of this universe to give you the time you need to heal and regain a little of that hope you once had.  And I hope you keep coming here just to talk, knowing we don't need anything fancy.

    Lots o' love~AA

    Love You, Annie:)

    I'll have to clear the cob webs to get any more profound or witty:) LOL!

    For the pain I'm in, this was good.....took me 3x getting up to write it. 

    I will hold on....we've got to see if treatment helps any at all....and I'm still pushing the palliative approach in my lung.....no takers until chemo shows something.  The Iriinotecan did not work.

    Great to see you!

    -Craig

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

    I'm sorry that you're in so much pain.

    This miserable disease just sucks all the joy out of people. I keep looking for your posts and hope you can find some relief from your pain. I appreciate your honesty because I know I have to face the fact that my sweet brother is heading down the same road as you. I am pragmatic and like to know what is happening, what can be done and what to expect. In a crazy way, it helps me deal with all the stuff that will happen, just by knowing what CAN happen. I don't know if that makes any sense, but I see my broter getting weaker and weaker. I guess your voyage is preparing me for his.

     I pray and hope that you are abe to get better and your pain stops. Your posts always caught my attention and I love following your story. I just hope there's a good ending.

    Please take care and get well.

    Lin

    {{{HUGS}}}

    Thanks, Lin

    Perhaps, this is the Swan Song of my journey.....

    If so, I want to help as many as I still can.....that was bring me joy just 3 months ago....and then snatched away in the night.

    Thanks for reading.

    -Craig

  • karguy
    karguy Member Posts: 1,020
    I'm sorry

    I'm sorry you are in so much pain,I hope the new medication works.It's not easy to live with pain,and it never gets any easier.I hope that you can stay with us for a long time to come.It's to easy to give up,I know i've felt like it many times.I will keep praying for you,and cross my fingers.I hope everything works out for the better.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Pain sucks....cancer sucks

    Pain sucks....cancer sucks more.  So sorry Craig. My hubby just moved from the hospital..3 weeks and 1 day.   Now in a rehab place.  He was on the constant drip of dilaudid ..think the highest was 5 and he just slept all the time.  They converted his dilaudid to 275 of fentynyl patch..plus a dilaudid pump of 1 every 15 mins as needed.  He also has an order of dilaudid ..12 mg every 3 hrs.  Since changing over to the pump at rehab , he doesnt hit it anymore...and has not been taking the pills by mouth much.  So the 275 of the patch is a huge amount but its not knocking him out like the dilaudid.  Not sure if that is good or bad...more time awake means more thinking and hes pretty down.  Being at rehab with a bunch of old people running laps around you kind of sucks.  Do you have a pain mgt doc?  

     

    I feel kind of loopy from the happenings of the last couple of months and know im rambling here..just hope they can get your pain under control and you get better.  Will be thinking of you friday...and every day...

  • marbleotis
    marbleotis Member Posts: 720 Member
    So Sad

    I am really sad reading your post.  I love how your write and your incredible wit and humor.  Please do not lose that. 

    I am sorry you are in pain - I call that the residual cancer crap that we have to deal with.

    I hope you find a comfortable balance to control the pain. 

    Please post when you can. 

    Love and hugs - your writing has helped me on many a dark day!

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Post

    Your post has saddened me because your pain and emotions are coming through so loud and clear.  I'm sure that I've missed a post about you quitting work, but I'm sure you have by now.  You need to focus everything you have on your upcoming treatment and get some help getting your pain under control.  With all that is out there to help with pain medication, you should ask your doctor to help and stress that it is not tolerable.  I'm hoping that your new treatments will work for you and give you some relief.  You shouldn't have to feel you need to write much when you come on to post, just a couple words would let us know how you are doing.  Being a writer, I'm sure you find comfort in expressing how you are feeling, and as much as we love those eloquent posts, you writing one sentence brings us hope.  Hang in their kiddo.  You have a lot of prayers coming your way and a lot of people that are in your corner rooting you on.  I'm waiting to hear a little roar from this lion and hopefully soon.

    Hugs!  Kim

  • Goldie1
    Goldie1 Member Posts: 264 Member
    Dear Craig,

    I'm taking a deep breath here at the end of your post.  To hear and see the toll pain takes on a person is, I think, the hardest thing of all.  

    I'm going to keep it simple and say, thank you Craig, for your wonderful witty posts, that I'm sure made people think as much as it made them smile.  

    Hoping your pain can be kept to a minimum and of course, you are always in my thoughts, 

    Ellen 

     

     

     

  • Cathleen Mary
    Cathleen Mary Member Posts: 827
    Goldie1 said:

    Dear Craig,

    I'm taking a deep breath here at the end of your post.  To hear and see the toll pain takes on a person is, I think, the hardest thing of all.  

    I'm going to keep it simple and say, thank you Craig, for your wonderful witty posts, that I'm sure made people think as much as it made them smile.  

    Hoping your pain can be kept to a minimum and of course, you are always in my thoughts, 

    Ellen 

     

     

     

    Oh, Craig, this breaks my

    Oh, Craig, this breaks my heart. I've missed your posts but know that these have been difficult weeks for you. You hardly had a chance to celebrate your writing success when the pain kicked in. Do you have a pain management doc?  It seems there should be some relief.  It is hard to find the energy to continue the fight when it all goes to dealing with pain.  I am hoping and praying chemo works for you once again. A lot of people are rooting for you and grateful for your presence on this board. Don't carry the burden of being eloquent...we just love you! 

    Hugs,

    CM

  • LivinginNH
    LivinginNH Member Posts: 1,456
     
    Hey buddy,
    Reading your

     

    Hey buddy,

    Reading your post became very emotional for me, so I couldn't respond earlier.  The thought of you being in so much pain that you can't even type is difficult for me to wrap my head around.  But as always, you continue to be an inspiration with your strength and courage - but really, I wouldn't have expected anything less from our resident Lion!  :)  And as the others have stated, you don't need to write long posts, just a "Hi folks!", would be just fine.  :)

    Luv ya,

    Cyn

    (All my best to Kim too of course.)

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dearest Craig

    Thank you for taking your precious strenght to think of us.

    I wish I had some profound words for you...but I am at a loss.

    Know that you are loved by many...not only for what you have given...but also for who you are.

    May that love help to shield you from pain and may our hugs give you comfort.

    Love and hugs from me to you,

    Marie who loves kitties

  • AnnLouise
    AnnLouise Member Posts: 276
    Thinking of you....

    Craig, I am so sorry you are in such pain. I wish I could take some of it for you. The first post I ever read was yours and I knew I wanted to be part of this family. Your words have a way to captivate and every time the lion comes up I know it will be a  inspiring. Now it is our turn, please come to us when you are scared or don't think you have the strength to deal with it. I am hoping for everything imaginable to be positive - the pain management and the new chemo. I am not very good at expressing myself in writing(although my two oldest boys are English teachers). Just know I am thinking of you and so grateful to know you. Ann

  • Aud
    Aud Member Posts: 479
    Craig, I am so sorry you are

    Craig, I am so sorry you are experiencing so much pain.  I hope you find more relief soon.

    Holding you in the Light,

    Aud

  • devotion10
    devotion10 Member Posts: 623
    Dear sweet Craig ...

    I wish I could comfort you so much right now as you have always done for others.

    Interesting that the word comfort originates from the Latin 'con fortis', meaning to 'be strong with'.  Seems being strong with someone means creating a sanctuary for them ... just listening and allowing the person to acknowledge their pain ... may we be this for you at this very challenging time.

    Peace, love, and courage to you.

    Cynthia

     

  • hippiechicks
    hippiechicks Member Posts: 509
    Craig...
    It is so good to

    Craig...

    It is so good to see you post!  I am so sad to read you are in such pain, (tears for you) wishing I had some answers or advise to help ease things for you. I am also on the path of refusal to meds for the pain and trying to keep on top of things with ibuprofen, heat (several times per day) and a multitude of therapies.  I do think of you often and keep you in my well wishes!  

    You have given such a gift with sharing your experiences and wisdom here with us.   You have made such a difference in so many lives by doing so.  With that I hope you can find some comfort and inner peace during this part of your journey and use that as a tool to come out of this part stronger and ready to roar!

    Are you able to drink some carnation breakfast drinks or boosts to help with the weight?  I found the instant carnation tasted better, are good warm or cold and have just as much good stuff in them and a bit easier on the pocket.  How are you doing eating? Baked mac and cheese is always a good comfort food!

    I also will be watching for your posts .. but I do understand the pain and fatigue. 

    Take care dear Craig. Rest and heal.  That is most important. 

  • herdizziness
    herdizziness Member Posts: 3,624
    Gosh [email protected] it

    Your post put tears in my eyes, tears for the pain you are going through, if I could take a little bit away from you and give it to myself to help ease your pain I would do so.

    i can only hope your pain eases as the treatments do their job for you.

    Even short posts from you are a welcome read.  I do miss you so much.

    Love!

    Winter Marie

  • sky123
    sky123 Member Posts: 15
    Thank you...

    Hi Craig, my name's Theresa and I'm glad to meet you. Your post means so much to me. Four or so months ago I was suddenly in considerable and constant pain from what turned out to be, as best we can figure, a problematicly placed peritoneal met. I had never experienced anything like unremitting pain. It took my life away as I knew it, and I was hit square in the face with the reality that some deaths by cancer are painful, and I drew that lot. That was also when I really understood that I was indeed dying, even if not yet close to death. I went back on chemo, though, and it has done a great deal of good. The pain is still there, yet at a minimal level. But I know it is there, waiting, and that it will have its day.

    I guess I write this to tell you I really hear you, that your voice speaks for me, and that I hope treatment gives you relief, too.

    Wishing you all good things,

    Theresa