Topic: Tough week

My husband, John, hilar cc, is having his PTCD drains replaced today with metal stents. His radiation/ chemo was supposed to start Monday, but has been delayed to have these stents placed.  HE's had several blockages and two infections with the PTCD's so hopefully this solves the problems. 

While I have no issues with the drains when they need to be un-capped it always upsets John and makes him feel really nauseous.  I wish I could help him get over that - I keep assuring him that it doesn't bother me in the least to empty the bags or change the dressings. He's never been sick a day in his life and has always been there for me when I was ill with depression, recovering from a heart attack and other surgeries....I've always been the patient.  I wish I could take his place.  He!s been a little down this week and It breaks my heart.  We have so much to be thankful for and that is what I keep focussing on (as does John).  I think he's just realizing how long this journey is going to be and it's all bit overwhelming.  We were both just saying this morning that we need to see CC as a chronic illness, not a life sentence. Our eldest daughter is getting married the end of April so that will be our focus for now.  Even though he is on the Mayo protocol for a liver transplant, I am not pinning my hopes on that as the only positive outcome. Whatever happens we'll face it together and try to make the most of every day.

So, Next week he'll have a renal scan done and hopefully the radiation simulation so he can start the radiation/chemo ASAP.   I just keep thinking that they found the tumour in July but there has been no chemo or radiation done yet (because of high bilirubin, infections and drain issues).....let's just say my imagination is running wild. I am doing a lot of self talking lately and working hard to keep fear out and let hope in.  I appreciate this wonderful site, it's very hard to talk to others about cc as no one seems to have ever heard of it.  That's another mission of mine; educating as many people as I can about cc and raising awareness.  It's such a little thing, but it's what I can do for now.

Tanya

Re: Tough week

Dear Tanya, I know so well how hard this part is for you but I swear once the treatment actually begins your and John's fright will change to fight. The new metal stents will make a big difference for John too. All in all it sounds like you have a good attitude as it is not easy caring for a loved one, staying positive and reassuring others. That is why no one applies for the job of Care Giver, it sucks and while there are no benefits the big reward is when you start to see John improving. Honestly I think you are doing everything just right. You are so right to see CC as a Chronic disease and try real hard to take each day at a time. It is wonderful that he got on the list for Mayo and yes, hold that wedding in front of him in April. While I don't want to see anyone get sick, I have to say as a couple working together through this journey, I think it brings a kind of love that most people never reach and I felt grateful to be a part of that kind of love. Stay  strong and good luck on the stenting!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Tough week

John is in recovery and doing well. So relieved. 
Thank you Lainy for your encouragement.  It's an honour to walk this journey with John, and already it has given us the opportunity to grow even deeper in love.
I think you're right, these stents will likely help John feel so much better and he won't need to worry about them.
One day at a time, right?   :-)

Tanya

Re: Tough week

Hang in there Tanya - this is a roller coaster ride of a disease and I have been through so much of the same stuff. My husband had his drain (no stents though) placed the end of May and had it through July 3rd. The first few days were rough....by biggest suggestion for that is have him drink lots of Gatorade....we were told to drink as much Gatorade as what comes out the drain. My husband didn't do such a good job of it and we had some problems with dehydration.....on a side note our doctor said that they used to have people drink the bile to keep the electrolytes in balance....I really hope he was joking. I have a strong stomach and that grossed be out.

Men really have a hard time being patients for the most part. They feel like they should be able to take care of you and everything else. They also want to fix everything and that just can't be done right now. All I can suggest in maybe have him take a pain pill an little bit before you work on the drains as they may help him relax some and not be so worried about what you are doing or maybe even something for anxiety. I know my husband eventually said there was some pain because of where they were placed in him and once he started taking some pain medications it helped'

Just take one day at a time and celebrate any little positive progress.....it always cause for celebration no matter how small. We got supper excited this week about 2 rounds of chemo and no hospitalizations....the first two rounds landed him in the hospital with infections.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Tough week

Hi Kris; sounds like we're on the same coaster ride.  The first thing we did when we got home was get some pain meds into him. He's resting quietly at home now.  The Gatorade is a great suggestion - thanks!

Tanya

Re: Tough week

Kris....thanks for mentioning the Gatorade.  This suggestion had been a major staple of conversations however; for some reason it dropped of the radar on this site.  Some time back. I recall someone drinking her own bile in order to keep the electrolytes in balance.   As far as I remember (not sure I want to) it helped keep her stable.  Sure glad to have Gatorade - it also comes in a green mix, doesn't it?
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Tough week

They now sell power aid flavour drops for your water. They're very easy to carry with you, not sure if they have the electrolytes though, I'll have to check.

John is quite sore tonight but he won't take any pain meds because he's afraid that if he does they'll mask any symptoms of infection.  SO Frustrating!  He was a little chilled when we got home from the hospital so he's convinced himself that he's developing an infection.  The heat is not turned on yet so the house is a little cool. I took his temp and is was actually a little below normal so I loaded on the blankets and he slept for a few hours. When he woke we took his temp again and it was normal, but he thinks it's rising. It did rise, but that's because it was below normal to begin with. Argh.  I know he's just afraid of another infection ( he's had two that have landed him in the hospital for week long stays) but sometimes I think he can talk himself into a fever.  Luckily, our two daughters started chatting to him about wedding plans (our eldest is getting married in April) and distracted him for an hour. By the time we took his temp again he realized that it was holding steady at normal.  He still wouldn't take any pain meds before bed, but at least he's not insisting he has an infection.  I sure hope he stays fever free or he'll be saying "I told you so!"   :-)

Tanya

Re: Tough week

I do think that some of those flavor drops have the electrolytes....my youngest is really into nutrition and stuff and works out a lot. He uses MIO Fit I think and I am pretty sure it has all the right stuff. I also know that Powerade comes in powders too.

We have been that infection route....it is awful. It's like constantly waiting for something to go wrong. Your husband sounds more like me....my husband would ignore the temps if I would let him. One thing I did learn is that the pain meds (ie the Tylenol) will only mask that infection symptoms for awhile then if won't matter, the temp will be there. The other thing is ask the doc for something like just plain Oxycodone which doesn't have the Tylenol in it which is what can mask the symptoms.....it's what we did. Then he just takes Tylenol when he needs it. I wish we could use Advil for his general aches and pain plus temp but my husband had a blood clot after surgery so is on blood thinners.  sad

So far we have been out of the hospital since September 6th....wow a whole month now that I look at it. That's the longest stretch for us since the middle of May.

Kris

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Tough week

Wow, a month is impressive Kris!  Today has been much better. John had a pajama day today....just what he needed.

Tanya