The Rumor Was True - Sundance Was Full of $hit After All. (Updated below)

Sundanceh said:

Hospital

May be heading to hospital tomorrow if I can get in.

i need ton as I'm scary skinny now and can't eat...It scares me to look at myself without clothes...just bony and emaciated looking.   May have to get cleaned out while I'm there.

medical community just moves too slow when you're deathly sick....shaking so bad I can barely type...have to retype over and over.

im slipping and they better hurry.

anywsy tpn needed for sure.

im worried...goodnight.  Hope to talk to you soon.

craig

This is so absolutely heartbreaking to read all of your post Craig. You know I love you and have always looked up to you and will continue to do so.

Sundanceh said:

Hospital

May be heading to hospital tomorrow if I can get in.

i need ton as I'm scary skinny now and can't eat...It scares me to look at myself without clothes...just bony and emaciated looking.   May have to get cleaned out while I'm there.

medical community just moves too slow when you're deathly sick....shaking so bad I can barely type...have to retype over and over.

im slipping and they better hurry.

anywsy tpn needed for sure.

im worried...goodnight.  Hope to talk to you soon.

craig

I'm just in tears reading this.  Please keep us in the loop (or ask Kim to update us if she can).  You are an important part of our family, we need our lion to get back on his paws!

Big hugs coming your way~AA

Sundanceh said:

Hospice has landed...

could not get into hospital...none of my gi docs were even there today.

unbelievable can you believe it?  I swear nobody there cares...my onc signed off for hospice today and here they are.

as long as I'm not in chemo I can do hospice - that's the rule.

nurse is nice and seems to want to help me...I hope they can.

i am trying to hang on...it just seems things changed so suddenly...pain intensified and stopped eating etc.

my wife called pain pump surgeon office....were not even close for surgery...they want a consult - why?

and then a ct for the surgery to know where to go - I get that one but still....

thr long trips to and fro are so hard on me I've told them over and over.....and still we drag it out...

this is how folks die...dragging it out like I've got all the time in the world..my cancer is running unchecked since November while we battle all of this other.

times like this make me question why I still fight.

well we'll see what hospice comrs up with.

over and out....will update when I can.

Hope I'm not acting like s big old baby with my whining...but I have my wife and my remaining friends on the board here...that's it and I need to talk to you.

Love, Craig

Craig, I haven't posted because I don't know what to say. My heart is breaking for you and Kim...and for all of us.   You are constantly in my thoughts and prayers.  You are never a big baby.  this should be your safe place where you can say anything.   Keep at them until they get your pain under control.   Take care of you.  Love and hugs, Jen

Sundanceh said:

Hospice has landed...

could not get into hospital...none of my gi docs were even there today.

unbelievable can you believe it?  I swear nobody there cares...my onc signed off for hospice today and here they are.

as long as I'm not in chemo I can do hospice - that's the rule.

nurse is nice and seems to want to help me...I hope they can.

i am trying to hang on...it just seems things changed so suddenly...pain intensified and stopped eating etc.

my wife called pain pump surgeon office....were not even close for surgery...they want a consult - why?

and then a ct for the surgery to know where to go - I get that one but still....

thr long trips to and fro are so hard on me I've told them over and over.....and still we drag it out...

this is how folks die...dragging it out like I've got all the time in the world..my cancer is running unchecked since November while we battle all of this other.

times like this make me question why I still fight.

well we'll see what hospice comrs up with.

over and out....will update when I can.

Hope I'm not acting like s big old baby with my whining...but I have my wife and my remaining friends on the board here...that's it and I need to talk to you.

Love, Craig

what??? I can't believe it. I really question why they put you on hospic instead of pain management. Please don't be disencouraged by hospic care, I heard that people can be out of this care when things are under control. Overall I am just as upset as you are with the whole thing, speechless. Take care.

LindaK. said:

&*$#@*!

I can't print what I really want to say!  Craig, someone must not be telling you something.  This sounds inhumane to dump on a cancer patient who so desperately wants to continue the fight.  I found home hospice in our city not so great.  They would say opposing things depending on who you spoke to.  The night and weekend "emergency" number was often unmanned and I had to call 2 or 3 times to even get the service to get the 1 on-call nurse.  The inpatient facility I took my husband to was fantastic.  Maybe something like that will be better for pain management for you to get it under control.  Hospice does not always mean the end, it means caring for someone with a life threatening illness.  If you could get in patient and get a pain pump, you can go home with it.  We pushed for it and we made them ask the palliative care doctor.  They said it can be done.  My husband then decided he wanted to keep the pain under control with pills.  I didn't think that was such a great idea, but I couldn't argue with him.  The pain pump they used at the facility was called "sub Q" so it wasn't through his port or an IV.  It had to be moved every 3 or 5 days but he never had another pain episode and for that, I am glad.

Please feel the love and concern from all of us.  We are in your corner.

Linda

for the pain control then you can think more clearly. Not telling you what to do here but if you want to keep fighting you should. Next thing, when you're pain free put on some weight. Whatever you decide you have my support. Good luck.

Easyflip/Richard

   I'm not much use for advice at the moment mate. I'm having problems keeping it togeather myself. My gp up and changed towns without a good bye or kiss my a. Now I am just rehashing things with the new guy. I have asked and asked for a viable alternative to Targin but there appears to be none. Every couple of weeks I have to do battle with opiate induced constipation again. I could just about afford to give up going to the toilet . I am not eating much and nothing much appeals to me. After 17 years of fighting I am financially , mentally and emotoinally bankrupt. Cancer and the long term effects thereof is an expensive on finances and the body and soul. I hope you can stop the blockages, I rely on 4 biscodyl ,4 coloxyl and two to three sachets of movicol a day. Sometimes it works , sometimes not. My neprologist put me on prednisone again for a while to help deal with some auto-immune hepatitis. Life really is a tightrope for us. All the best Craig,hugs Mate. Ron.

Sundanceh said:

Hospice not the end

they are here to help manage pain and symptoms....I don't see it as the end yet...I see them offering help when nobody else would....one call and they show right up today and I don't have to travel - beautiful.

they are staying overnight for 24 hours to watch me and help with meds etc...

and.........a pain pump is being delivered TODAY.  It will run through my port.  Did my pain mgmt team do that for me?  No.

Linda I agree think pump will be better than pills...so hard to maintain and stay up with it.  It has a carrying case like the 5fu pump but it's always something.  Pain is so bad after s year and half I can bsrely see sometimes.

its been so long with pain it's hard to know anything else.....

so if this can help me for now I'm going to try it.

You know I talk a lot but I'm not ready to quit yet....not yet......10.5 years and still actively fighting....how many can say that?

i want to thank you for responding and reaching out to me....I've really missed our interactions - a lot .

in my continuing effort to share what I learned.....

TPN is used for bad bowel conditions and not used for sustenance to live on so interesting.  Starting the LINZESS and they want pain under control do I can eat something.....and they will work with bowel regimen to help me there so I don't Impact again.

not usrd to stranger staying over but it's good precaution.

thanks for listening....this thread makes me feel close to you and I need that.  

Keep your fingers crossed and I'll do my best to keep you posted.

What a comeback this would make:)

-Craig

well that deserves a happy dance man .

Sundanceh said:

Hospice not the end

they are here to help manage pain and symptoms....I don't see it as the end yet...I see them offering help when nobody else would....one call and they show right up today and I don't have to travel - beautiful.

they are staying overnight for 24 hours to watch me and help with meds etc...

and.........a pain pump is being delivered TODAY.  It will run through my port.  Did my pain mgmt team do that for me?  No.

Linda I agree think pump will be better than pills...so hard to maintain and stay up with it.  It has a carrying case like the 5fu pump but it's always something.  Pain is so bad after s year and half I can bsrely see sometimes.

its been so long with pain it's hard to know anything else.....

so if this can help me for now I'm going to try it.

You know I talk a lot but I'm not ready to quit yet....not yet......10.5 years and still actively fighting....how many can say that?

i want to thank you for responding and reaching out to me....I've really missed our interactions - a lot .

in my continuing effort to share what I learned.....

TPN is used for bad bowel conditions and not used for sustenance to live on so interesting.  Starting the LINZESS and they want pain under control do I can eat something.....and they will work with bowel regimen to help me there so I don't Impact again.

not usrd to stranger staying over but it's good precaution.

thanks for listening....this thread makes me feel close to you and I need that.  

Keep your fingers crossed and I'll do my best to keep you posted.

What a comeback this would make:)

-Craig

Hospice is not the end as you said, if they are offering pain meds and you can't get it from any other source so be it. Bro you know we still watch over your Kim on Facebook. How can anyone forget you, you are still my bro and no one I know has been fighting as long as you have. You are an inspiration.

Love you. Now take those drugs, get stronger and kick butt.

Sundanceh said:

Hospice not the end

they are here to help manage pain and symptoms....I don't see it as the end yet...I see them offering help when nobody else would....one call and they show right up today and I don't have to travel - beautiful.

they are staying overnight for 24 hours to watch me and help with meds etc...

and.........a pain pump is being delivered TODAY.  It will run through my port.  Did my pain mgmt team do that for me?  No.

Linda I agree think pump will be better than pills...so hard to maintain and stay up with it.  It has a carrying case like the 5fu pump but it's always something.  Pain is so bad after s year and half I can bsrely see sometimes.

its been so long with pain it's hard to know anything else.....

so if this can help me for now I'm going to try it.

You know I talk a lot but I'm not ready to quit yet....not yet......10.5 years and still actively fighting....how many can say that?

i want to thank you for responding and reaching out to me....I've really missed our interactions - a lot .

in my continuing effort to share what I learned.....

TPN is used for bad bowel conditions and not used for sustenance to live on so interesting.  Starting the LINZESS and they want pain under control do I can eat something.....and they will work with bowel regimen to help me there so I don't Impact again.

not usrd to stranger staying over but it's good precaution.

thanks for listening....this thread makes me feel close to you and I need that.  

Keep your fingers crossed and I'll do my best to keep you posted.

What a comeback this would make:)

-Craig

Craig - Hopsice may just be the best thing for you right now.  You've got a pain pump, that's awesome.  I hope and pray it helps.  Get this under control so you can deal with the rest.  We're in your corner and looking for the day when you're back and dispensing your pearls of wisdom!  You're always in my thoughts.  Traci