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I am at a loss

Ruthmomto4's picture
Ruthmomto4
Posts: 682
Joined: May 2013

I don't feel like I can say this anyplace but here I try not to say much on Facebook because my husband hates his business out there. I think he might be dying. He had a stent replacement before halloween and they could barely advance the scope, but they did. They removed and replaced two stents. within a week he was very sick. He literally runs to the bathroom 15 or more times a day. Food just passes right through. He is down to 140lbs, horribly emaciated. as typical for him the stents got infected right after thanksgiving and they could not advance the scope. his only option was an external biliary drain, he probably would have said no if it wasn't the holidays. So the stents are still there but the drain is working and his numbers are down but the running to the bathroom and is worse. He can't leave the house, they tried pancreatic enzymes and it just got worse. I am holding out hope if they can get the scope through ( everything was infected and inflamed so they needed time) and remove the stents this problem will go away. No one seems to want to telll us why it's happened or if it will get fixed. they move like sloths and it's maddening. he has two appointments next week that hopefully will give us a answers. I know if it doesn't help he can't and won't continue like this. He has no cancer anywhere in his body this is due to damage from the hai chemo. All this time we worried about the cancer and it's not even that. His CEA is so low (1.6) I don't even worry about anymore my new obsession are his liver enzymes and his very low hematocrit levels. funny how life just kicks you harder in another direction. I am just a miserable mess most days, it's just a sad life.

abita's picture
abita
Posts: 934
Joined: Dec 2017

I am so sorry. 

Annabelle41415's picture
Annabelle41415
Posts: 6655
Joined: Feb 2009

Geez, I'm not sure what to say.  During your next two appointments when you are there, you need to demand some answers.  Have them offer some alternatives to what approach they could try next.  Tell them of your concerns and how you feel that they aren't addressing his problems and see what they say.  If they aren't able to give you some good advice, ask them who else you might be able to consult that will give you some immediate help.  I'm sorry that your husband is dealing with this.  I'm hoping that you get some good answers this week.  Please keep us posted.

Kim

beaumontdave's picture
beaumontdave
Posts: 1101
Joined: Aug 2013

I'm sorry Ruth, hearing that is so deflating just as another member here, and it jars memories I don't revisit. I can't fully imagine your emotional load, but I recall the sorts of feelings that go with such a burden. You both have fought so hard, for so long that to have ''the cure'' doing such damage is a bitter irony. Thinking about you both, and hoping for a rebound for him, and some relief for you...................................................Dave

myAZmountain
Posts: 373
Joined: Apr 2018

You and you hubby have been fighting for so long and with such strength. Hoping  and praying his body will find the resources to continue to fight and start to heal and you get some answers from the medical team soon!

LindaK.
Posts: 500
Joined: Apr 2013

I'm so sorry to hear about all your husband's troubles.  I can't believe they are letting him go on like this without medical intervention.  My brother was treated for tongue cancer over the summer and he was in such bad shape, they finally admitted him to the hospital with severe malnourishment, dehydration and constipation.  He couldn't eat or drink anything and using his feeding tube made him nauseous and anxious about being nauseous.  He was in the hospital for 5 days on IVs. He lost 35 lbs in just a few weeks on an already fit slim athletic build.  

My husband had colon cancer and during his 2nd round with Folfiri, he had lots of complications, several hospitalizations, etc.  He had two separate endoscopies where stents were placed.  When I read about them on line, the words "it will extend the life of a cancer patient 3-6 months" I just lost it.  At that time, I had no idea he was doing so poorly.  When you see them day to day, I guess we don't see their decline.  

Your poor husband must be feeling awful.  I would call his oncologist, surgeon, GI doctor or all of them to insist something needs to be done for him.  I know no one wants to be in a hospital these days, but that's the place that can give him some relief.  I'm so sorry you are both struggling now, I can relate.

Linda

Trubrit's picture
Trubrit
Posts: 5341
Joined: Jan 2013

I am so sorry to hear about your brother.  I hope he is doing better now. 

Tru

LindaK.
Posts: 500
Joined: Apr 2013

Hi Sue, My brother is doing much better. He had his feeding tube and port removed in November.  He's slowly getting back to semi-normal.  His taste buds are coming back, but he may never get his saliva glands working again.  They will be first time grandparents in about a month, so that is really good news. Another kick in the guy, his wife (my sister in law) was just diagnosed with breast cancer last Monday.  It's early stage and she has a good attitude and very strong faith.  They live a very healthy lifestyle so hopefully that helps both of them kick cancer to the curb!

I hate seeing when people like Ruth's husband are suffering.  Like I said, we are so close to them, sometimes it takes an outsider to see their decline and step in to help.  His case seems more complicated than my husband's and of course I'm no doctor.  It just seems senseless to have people suffer so much.

See you on Facebook,  Linda

Ruthmomto4's picture
Ruthmomto4
Posts: 682
Joined: May 2013

My husband had a stent put in the summer of 2017 for a tumor in his liver compressing the duct. Chemo shrunk it, and then he had a second resection. He has had stents put in, and removed continually since July of 2018. In his case the reason is no longer cancer but Primary Sclerosing Cholangitis caused by the chemo in the Hai pump. The pump is a good thing, it does not do this to everyone, but unfortunately you don't know it will do it until you use it. In his case the first time they put chemo through it he instantly got a blockage. This last time the stent was put very close to the pancreas, we are very hopeful if they get it out he will feel better. However, no one will say this And he is so sick and frail I don't know if he can come back. Also the pancreas does not fix itself so we have to hope the damage is not to severe. I can't go to any of his appointments because of COVID, I can't even go to the hospital, it's on a zero visitors policy right now. 
I hope your brother is feeling better, and thank you.

LindaK.
Posts: 500
Joined: Apr 2013

Hi Ruth, I'm hoping your husband might be feeling better this week.  Has he had his appointments yet?  Can your husband put you on speaker phone while he's in with the doctor/nurses so you can hear what they're saying and ask questions?  It must be so frustrating not being able to be with him

When my husband had one of his stents, the hospital used a suppository with some medicine to help keep the pancreas from getting irritated.  They told me it was designed at that hospital.  Kind of funny story (we have to have laughs once in a while) was when my husband woke up, he could feel the suppository and in his post op haze he whispered (very loudly) to me that he thought he crapped the bed.  I told him it was a suppository and he asked me who put iti n.  He had a male nurse taking care of him, his name was Doug I think.  I said Doug put it in and my husband looked at him in horror which I thought was pretty funny, Doug didn't have much of a sense of humor which made it even funnier to me.

My brother is doing good, getting better every day.  

I hope your husband can get some relief and you can too.

Linda

Kazenmax's picture
Kazenmax
Posts: 436
Joined: Feb 2016

I can't imagine the frustration. I hope you are able to go with him on his next appt. and I hope they can find someway to help him.

k

SnapDragon2's picture
SnapDragon2
Posts: 400
Joined: Nov 2019

I am so very sorry to read this.  What a huge gut punch.

Have you looked into ozone therapy?  A family member of mine has liver trouble of some kind (?) and it really helps.  I've thought about it for myself also.

Peter_S
Posts: 109
Joined: Oct 2018

They're a safe port in a storm aren't they ~ and it's a storm your in right now, I'm so sorry for the pain. I don't pop in here these days but often take a look around the old joint and it helps, this special place full of kind souls and kindred spirits. We all hear "The cure is worse than the disease"  it's one of those cancer constants folks say over and over, decade after decade because it's true -- not for all but for many. I got sick in September , pretty much in bed or the emergency room through just recently - I lost 40 lbs though so I have that  working for me, it was horrible but it's over, thank God (knocks on your head) sorry, but I needed the wood.

So maybe he'll bounce back, I hope so - I hope things can get a little better for him,  for you. Please, keep hope in your heart even it it's just a flicker. Sean has filled me in whenever he sees you FB but it's rare and I always hope all is well but of course right now, in this moment it's not, things are a far cry from being well and my heart is heavy for the both of you. You'll endure, weep and sleep and endure it all again because you're strong and you've ben hit with so much it's made you a master at fighting this demon.

I think ( not often but on occasion) back to what I was thinking -- you two have been hit hard with unexpected repeated blows so you're brusied, terribly fractured but, you're still here, you both are here there's great beauty in that Ruth because if you look hard you'll see the hope -- Peter

(look at that pic of Harley I didn't have the heart to change it, Jan 30 will be two years it's hard to believe. Luca is 100 lbs now I'll send you pics but I want ones of Lucy in return.) 

abrub's picture
abrub
Posts: 2146
Joined: Mar 2010

Just sending my best and hoping for a resolution of all the issues.  I do know for me, my dr had me on Tincture of Opium, which is a super remedy for the runs.  I was on it 4 times a day.  It's rarely prescribed now, but my surgeon wanted me on it while I had my colostomy.  Ask about it.

 

Alice

darcher's picture
darcher
Posts: 290
Joined: Jun 2017

It's troubling to read these kind of posts. I don't know what to say except we're here for you and to offer our prayers for a full recovery.

Canadian Sandy's picture
Canadian Sandy
Posts: 681
Joined: Jul 2016

I am sorry for all of this Ruth. Just know you are in our thoughts.

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