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Sundanceh/Craig

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Craig, I am so happy to see you post even if it isn't much, I think about you most everyday, especially since we both have this weight thing going on (I'm still same as day I left hospital) and wish we could gain the weight back and keep it (I've gained in a week and then end back losing it again the next).

I do miss seeing your posts, and what surgery are you going to have the week before Christmas?

We here on the board miss you and think about you and send our love and virtual hugs.  I hope your pain has lessened somewhat as well.

Winter Marie

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Craig:  Miss you on the forum but know you are battling against this calamatous disease process.  Wishing you well and asking that you write when you can.  Art

jen2012
Posts: 1607
Joined: Aug 2012

So weird - I dropped the kids at school and Craig popped into my head and I signed in to post a hello to our friend.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I appreciate the post Winter...thank you.  And also thanks to everyone who posts on this thread.

i basically don't eat anymore holding a little over buck 50 for weight.  Along with cancer and pain I've got digestive issues with bowel from pain pills and who knows what else.

i stopped urinating suddenly....only way to go is hot water shower....this makes going places or making any kind of appt s challenge and difficult... a real challenge...went to urologist and tests were inconclusive.

i decided to see my colorectal guy and he did physical exam.  He initially thinks partial impactiion could be severe.  Told me to do 30 enemas but I'm so sore there the plastic tip hurts on insertion.  Im already going 12-20# a day without....and without eating how am I producing?

Im basically living off of chocolate milk and bites of fig newton or some cookie...sometimes one pancake.

I'm caught in a vicious cycle I cannot currently escape from.....it's scary.  Hope it's not a tumor revealing itself...there is so much pressure in there just constant.

So I will be going in for a flex sigmoid exam to see what he can see.  Im worried all he sees will be $hit...so many things to worry about.  Outside of dr appt I'm still mostly bedridden except for bathroom runs, so painful.

So Sundance just has too much to fight it seems....I'm sad that the days are rolling past and I now find myself a prisoner of my own body.  And I lose ground when I have to stop chemo for surgery.  I could not make my last infusion because it would take too long with waiting on labs, dr visit and infusion itself...the urge to pee and being unable to go is painful and frightening event.

Hopefully we"lol find an answer...this is no life and I've lost much functionally this time through...I keep losing and not winning...part of me just wants to die some days...but I just hang on as best I can.

What happened?

So much I have not told you....did not want to burden the community with my troubles so I've kept quiet about it.....the holidays and all that.

Were I ever to get out of this mess it would be my greatest trick ever!

The new hospital is opening and its supposed to be real nice with flat panels and better food I won't be able to eat:) I should be seeing a lot of the new place in '15. 

Still trying to get back surgery...I continue to give to them but they have not given back to me...but the word is still trying; trial ends next month.

I miss my old life very much...my retirement sucks due to issues and financially difficult as well.

I really miss all of you...miss being what I was here and to my wife.....she handles most everything now and still works full time career.

What they told us from the beginning rings loud and true today - "If you have your health then you are blessed."

I would add that when you can go to the restroom with no problemS / you're truly blessed and fortunate...it's a gift that most of us take for granted.  

I could use a prayer or two if you had one to spare:). Best wishes will work as well...I need some help and feel like I'm slipping or something.

Thanks for checking on me...now you know why I kept my mouth shut:)

Love you guys with what I've got left.  Hope to get out some of this if its in the cards to do so.

Take care...youve got me beat Winter.  I can barely do anything and read where others are living their cancer more fully....part of me longs for that so much....it hurts.

Hope I can rejoin you once again:)

All my best to all - keep fighting!

I still plan to - for awhile at least.

-Craig

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Hi Craig, I'm glad to see you are able to post and wish you good vibes and answers to your current issues.  It's so true, if you have your health, you're blessed but more than that, if you have your health and realize the value in it, you're seriously ahead of most other people.  Keep fighting=)  Helen 

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

My dear friend, it pains me deeply to hear of your troubles, but that doesn't mean you shouldn't share your pain with us.  You mean so much to many of us here and I'm sure that everyone who hasn't "met" our Lion will support you no matter what the circumstances.  You are often in my thoughts and I pray that you'll find some relief from your pain. You have helped me over the years more than you'll ever know with your encouragement, insight, caring and loving support.

Hugs (())

Cynthia

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

I'm so sorry you are going through so much especially just the bathroom issues upon everything else that you are dealing with.  May God bless you with some peace during this Christmas season and you find that the new hospital will benefit you greatly in 2015 and hopefully giving you a new direction in your treatment to turn your situation around.

Kim

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

  I'm on 80mg oxycodone/40 naloxone. The naloxone is supposed to stop opiate induced constipation but itdoes not. Every time I take my pain pills I take two dulcolax and two of three coloxyl. I have almost gotten to like the taste of moviprep I  drink so much of it. I take 150mg of cyclosporine daily. Another constipating agent. I am sitting here at the puter , It si just past midnight and I am waiting for the microlax enema to work. It is taking its time. I find severe constipation one of the most terrifying ordeals that I have faced. Every time my bowels open it is a major victory. My heart goes out to you . Good luck with everything, if that sounds lame mate it probably is I just don't know what else to say.. Ron who is also full of ít.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

folks have said I'm full of $hit:)

guess they were right!

LOL!

UncleBuddy
Posts: 1019
Joined: Aug 2013

You have been through a great deal! I am speechless now reading everything you're dealing with. I hope things start to get better for you. You have been such a big part of this site and we all miss your posts.

Feel better.

Lin

LindaK.
Posts: 490
Joined: Apr 2013

I, too, am so glad to read your update, as painful as it sounds.  I have no advice for you.  I'm still struggling with the needless suffering my husband and so many of you are having.  I hate this disease and what it does to all of us.  I am trying not to dwell on the all the bad images, but that is all I can seem to picture.  I have 8 large picture boards from my husband's service and I have them all around me in my bedroom.  I look at his smiling face (in most of the pictures) when I go to sleep and when I wake up.  We had many good times in the 33 years we were together so I try to concentrate on that and not the past 2 years of cancer.  I even look at the pictures and say to myself "Before cancer, after cancer, etc"  I am reading a book titled "The Love Never Ends" and REALLY trying to find the good in my grief.  It does give me hope.

I know from my husband's experiences, the pain from cancer and constipation are all consuming so I can understand some of your issues.  I wish you well, friend

Linda

hippiechicks
Posts: 509
Joined: Sep 2012

I have been thinking of you Craig, and although this was difficult to read, it is nice to see you on the board. 

I have not had the experiences you have, but I too have heard of and almost needed the opium drops. I have heard they are very helpful.  

It makes me very unsettled to say the least to hear you are so uncomfortable.  I hope you are able to get some relief very soon. 

Are you working with pallative care at all to help with QOL? 

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Craig, you continue to be in my prayers. I truly admire how tough you are and your unrelenting fight! I pray and hope that you will find releif from the current challenges / symptoms and get that cancer into a remission once again!

 

Sending Love and Light to you Craig, today and everyday...

 

Philip

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

Craig! A million well wishes from another stage 4. Keep yourself as comfortable as possible. You're wife sounds like a hero too, merry Christmas to both of you.

Easyflip/Richard

coloCan
Posts: 1956
Joined: Oct 2009

called anamorelin,both of which may help with appetite,weight gain due to cachexia

http://medicalxpress.com/print290689419.html

(ignore the elderly part)

www.eurekalert.org/pub_releases/2014-09/esfm-aia092614.php

(Don't know if this will help;have suggested these before) 

 

 

 

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

They may have to "roto rooter" me to clean me out....how embarrassing.

i feel alone with this but know I am not.  Apparently this is not uncommon as we age...not all of us but some.

these are some of the darkest days of my life and I dont sat that lightly.  I'm trying to find any joy in life but difficult as you can see.

thanks for listening...great seeing everyone.  

Wish Santa would slip some health down the old chimney....too much to ask for I suppose....I'll hope anyway....this could be one of my last Xma.  Don't know how long I'll last against cancer but wish I could cure these ailments and improve some QOL while there is time.

this can be such a difficult life - a facade of life for those stricken with illness and a true life nightmare for so many of us....it saddens me so to see it all.

thanks again for posting to me:)

-Craig

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

Craig, my heart aches for all you continue to endure.  Why does this remain your burden to bear?  

Please ask your doctor about taking Tincture of opium.  It was the one and only thing that stopped my constant cycle of diarreah all day long and the chronic weightloss.  When I was down to 90 lbs and put on a feeding tube, that was the last resort.  Once Daily - the Opium drops on the tongue started firming up my waste matter in a few days, so I was able to retain nutrition even from small amount of food i was eating. I was on a colostomy bag at the time, so not all the pain on my bottom you are going through. Once that improvement was made, my ostomy was reversed as well.  May be worth a shot Craig.

It was a major accomplishment Craig and allowed me to get my liver surgery because i got fattened up and stronger.

 

Prayers for you and Kim- ((hugs))

Peggy

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Can you juice, do you have a juicer?  4 organic carrots amd 2 granny apples With two seeds from apples (once a day) Do this at least 3 times a day.   Gerson states that infants can live off of only carrotts. Lots of nutrients.  I try those and of course the kale, carrott and apple one. 

 

My Nana lived to 101 and all she ate was purred veggies. In bed for over 10 years  Every time she ended up in the hospital and docs said to say good bye, she came right out of there, smiling.  

 

God bless you. Praying. 

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Craig,

I am sad at the amount of pain and endless complications you are suffering.  Kim is in my thoughts as well.  You are seemingly so enmeshed in your daily traumas and misadventure it has to be hard to step back, even a few steps.  

Dear Craig, as long as there is the gift of life there is the blessing of hope:  Hope for relief, Hope for a cure, Hope for tomorrow.  You have amazing strength, will power and perisitence.  You continue to be a model for me and others as we wander this winding and rocky road called cancer.

With greatest respect,

Art

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

  For those that have never had to take opiate based pain killers , they have a very dark side. Their control of pain is amazingly good. Their major downfall is that they literally put the my bowel to sleep. That stops motility, the caterpillar like movement of the large and small intestines that moves food and waste thru. Fibre is no use in fact it adds to the problem by building brick walls in the intestines particularly because most of us have areas where the colon has stuck to itself during operations ie adhesions. Compaction is hard to shift. The first prblem is restarting the motility. I take dulcolax which is the same biscodyl we take during our scope prep. I have to use a stool softener to loosen up the compaction. I have to drink a lot more water than normal to provide a medium for the stool softeners to get to the blockage, I use moviprep , up to five sachets a day . It is the same as the scope prep  and it helps to restart motility and soften areas of compaction. I can only eat snall meals which contain some soft fibre. Things like green peas ,pears but no crude or coarse fibre. Prune juice helps but not too much as bloating does not help issues. And last but not the least the microlax enemas. These little suckers can be life savers. I have developed an early warning system . I can definitely feel a blockage as it happens. Proof is when I try to go to the loo and strain for no result, That is the time to use an enema. Break it up before it becomes serious. I know it is not a pleasant subject but I also suffer from pulmonary odeema. When I block up pretty soon I can't breathe and that really panics me. Cheers to all. Ron.

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

I know it is not a pleasant subject

Absolutely no problem talking about this us with here on the forum, considering our medical complications. Your post is full of great information, thank you. 

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

you said it buddy.

im so sorry for all you have to go through...you've really paid the price.  Wishing good fortune for you as always.  You are tough to go through all of that.

Thanks for stopping in with good info.

Craig

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

My heart hurts to read of your trials. You are such a strong person, and that is being sorely tried. 

I wish I could wave some kind of magic wand at you. If only it were that easy. 

Bless you! I pray for your comfort. 

Sue - Trubrit

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

It feels good to be back in the room again.

I needed to know I have friends left who get me and put up with me:)

We'll start with the procedure on 18th and see what they see.

Wish it would been today...I finally passed a bm knot that had been torturing me for weeks now.  Not sure how long it will last never does long.  With me not really eating itmustbe the choco milk that is keeping me alive.

He might have got the scope inerted better than he will for the procedure on 18th.

Urinary wise i void fully so its a bowel issue causing issues on that side im sure.

I wanted to add that pain pills can inhibit renal motility as well......pain pills are an oxymoron - they give  but can also take away....reason I'm fighting for back surgery in trial...vot me lff Dilaudid instantly on 2nd day....

Had a whole bunch written but it it did not post...went away.

So, it's Impaction OR a new tumor:(. possibly a hemi?

Stay tuned to the Sundance Channel - Story Matters Here...

-Craig

janderson1964
Posts: 2215
Joined: Oct 2011

Craig. It is good to see you posting again and most importantly still fighting.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I'm so glad you updated us, but my heart is breaking for what you have to go through.

Cancer is SO F'ING UNFAIR (I will censor myself there, or I know CSN will do it for me, I could use the word "freaking" but really that isn't strong enough).

I hope you can be here more often, despite all the challenges.  You have provided a lot of much needed support to folks over the years, it's our turn now to support you.

Big hugs coming your way, buddy~AA

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Maybe I can surprise the community one more time:)

wolfen's picture
wolfen
Posts: 1320
Joined: Apr 2009

You are truly "The Man".

So very sorry for what you are going through right now. Would you be better off at MD Anderson? I know it's a ways from Dallas to Houston, though. Please give me a shout if I can help in any way.

Luv,

"Mama" Wolfen

 

Yolllmbs's picture
Yolllmbs
Posts: 361
Joined: May 2014

I'm in awe of your strength.  I will keep you in my thoughts and prayers.  You certainly are a true inspiration.

 

Cyber hugs, prayers, good thoughts

 

Yolanda

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

have I said hello?

Nice to meet you and thanks for your support.

craig

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Can't make that far of a drive....just too far for me now.

-C

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

AHHH Craig you just keep tryin and fightin and still your smarts and sense of humour shine through.  Yup poop and more poop.....we can talk about that here....noooo prob.

I remember so well when Donna was here and you two would rattle on to the delight of all....everybody in treatment and still laughing with one another.....you know what I am going to do right this second.....I am going downstairs and I am going to put Santa's Craig Christmas CD and have a great big fat laugh/cry for you, and everybody else here.

hang in big guy....well somewhat reduced big guy....still big in heart and spirit.....hugs

mags

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Chicky and I were a magical time alright....this room was the place to be:)

And Santa Craig brings back really nice memories too.  I really tried to do what I could.

Thanks for the flashback!

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

I'm going to call you Joe...  Cause he was the king of come-from-behind wins!!!  Go Joe!!!

Joy1216's picture
Joy1216
Posts: 293
Joined: Mar 2006

Time to get out my Santa Craig CD!

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Everyone play theirs...want to hear it all the way down in the Lone Star state.

glad you still enjoy it:)

craig

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

ive worsened as you can see.  just wish all of this pain and madness would cease and decist.  Hopefully next Thursday we'lol know more than we do now.

it is so hard to keep going and staying strong....I'm tied to bed almost exclusively these days.  Dr appointments take a toll on me and the drive is draining enough.

at home I can't sleep much cause I'm up and down getting sick and trying to get my system working.  

I just keep trying and hoping....it's not life...but the only one I got.

Good thought though...know you want me better....the wife too.

And let me add its a lot of work and tiring getting up 20 plus times a day or more.

Lets recap:

1. Fighting cancer 4th time.

2. Pain from lung tumor in tight pleura....4 different meda...fentanyl, dilaudid, tornados and lidocaine patch.

3.  BM pain multiple attempts.

4.  Don't eat anymore....a cookie maybe one pancake sometimes.

5.  Difficulty urinating due to bowel pressure constant.

that's enough for anyone, right?

anyway we will see how it goes.  Thanks for the post!

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Craig, it is nice to see your post, but my heart hurts. I totally got what you are saying and I can feel your pain. It's too much torture...

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Craig,

I wish I could do something to lift some of your pain.  I can offer friendship, love, admiration and hope that you will have another big recovery.  I hope the best for you my friend.

 

Aloha

Kathleen

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Hello Craig, so glad to read your posts, still have your sense of humor. I am in awe of how you are handling things. I understand your problems, my daughter has some if them mainly because of meds. I get her Booster juice with extra protein, a comp we have here, it is mainly fruit juice with yoghurt and protein powder . Cocoa makes it hard to go just like calcium, maybe if you try a fruit juice and add protein powder ? A few sips every few minutes is what she does , chewing and swallowing hurts her. 

 

I am am just very happy to read your posts, what might help you urinate is a electric pillow or anything warm to stimulate the area? Main thing is to stay hydrated or there is no output.

much love and incouragement ,i send your way, thinking of you often, you incouragement me when I needed it . Give my regards to your wife, I know she can use a hug also. Remember we love and care for you deeply, 

Marjan

 

 

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Nice to see you still roaming these halls:)

im in a real fix right now.....procedure this ThursdaY.  Almost scared at what we'll find.  It just never seems to end.....

take care and thx for posting...good to see you.

hugs/Craig 

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Thanks for saying hi....nice to see you.  Now get your Santa Craig CD out and Mele Kalikima to you and yours.

craig

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Craig,

Can I suggest that you try to take each day as it comes and not get too far ahead of yourself.  Sounds corny, but today is the best day and tomorrow is something we hope for.  

Try not to worry too much about Thursday; I know it is hard.

((HUGS)) and positive uplifting thoughts streaming at you. Wish I could do more.

Art

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

were all on the sidelines watching our friends suffer while we mostly helplessly watch.

But we give our support and that's what we can do for one another.

i do take it a day at a time.....back pain alone 16 months now....everyday 24 hours a day.....so I'm doing it...and it is hard.  These latest issues keep me occupied all day and night....so physically and mentally tiring....sleep is not easy now as I'm up and down every hour or two.

the days ebb on seemingly endless....then the shadow passes from day to night and the loneliness, separation and emptiness can sometimes consume you. TV is my friend but it's mostly reruns and sometimes not enough.

i never knew how hard it was to live 22 hours each and everyday for a year and a half.  Still mentally active but physically tied to bed is not right.  

Anyway thanks again for writing know you're trying to help...it's all good.

-Craig 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Can you watch shows on your computer?  If you can, then Netflix has a lot of good shows.  Kept me distracted during some of the worst of it.  And if you're interested, I'm sure "Santa" could get you a membership. :)

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

one day perhaps right now cable is enough but thank you so much.....it's hard passing twenty hours everyday no matter what's playing:(

youte sweet and thanks again 

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

a little apprehensive right now....so much I'll have to do just to get there.

the uribary problem from probable bowel issue really turns up the heat.

i can't live like this indefinitely and yet I'm worried that he wont.Be able to pass the scope through....then if he does what is happening....and then the fallout from that.

Nothing I can do and it will be a long day...whether I come home or are admitted to the hospital is any of our guesses.

i want to be home for Xmas unless critical.  

Im judt really tired and hurting....makes my 7th or 8th procedure this year...16th or 17th total so far and I'm probably not done just yet.

Just needed to say hi.....we'll be at the brand new hospital so first well see the day procedure first.....supposed to be a first rate hospita...I'm sure it will be nicer.

see you

craig

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

on 2nd thought

save the Netflix and ask Santa to send me some good news and health instead:)

LOL

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

from all of us!  

Pls let us know how your visit goes...we're all going to be worrying about you until we hear.

(and if you change your mind about the Netflix, just PM me. I got it myself from a friend when I was in the hospital and it was a great thing to have)

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