I am new and stumped on what to do.
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Tom also developed a bed sore on the ‘end’ of his tailbone. He’s lost so much weight that he is just skin and bones. The wound center at our local hospital said that there was ‘nothing they could do, it was too far gone’. I could not believe that!
What I then did was to wash the area 2x daily and then put hot compresses on it for about 10 min each time. Then I used Aloe Plant which I applied directly to the wound, then an ointment to promote healing. Gradually over a three week period I got the sore to heal. He now has a RoHo pillow ($430.00) that he sits on. This pillow has ‘fingers’ that fill up with air and takes the pressure off his tail bone when he is sitting.
Your dad probably has to stay off his backside, laying mostly on his side as much as possible.
Good luck.
MargaretGlad there is no power struggle with you and step mom, and you both want the same end result, a cancer free dad. There is very interesting commercial airing about a women grilling her waiter about menu, question after question and then the next scene they show her at doctors and when asked if she has any questions she looks dumbfounded and says no! This a very common problem. I suggest you tell your stepmom you are going to look for more opinions since this a rare cancer. I would also ask your doctor to help, if he is good he will not feel threataned and will understand.
My mother-in-law was diagnosed with cancer and when we said we wanted more opinions his response was “Thats OK I have lots of patients” needless to say we moved on. Scary part he is one of the most popular in our area.
Good luck and don’t think you can ask to many questions. When and if you find more info, your stepmom will welcome it because you both love your dad.
Lots of prayers-CathyI would work with your dad’s wife to see if he and she will agree that he should absolutely have a second opinion at least. What can it hurt? It may help more than you imagine and that would be awesome. Keep us posted. Blessings, Susan
I don’t know a lot about bed sores, but I do know that once you get one, they take a long time to heal. I’m still feeling a second opinion is the way to go. Perhaps you can get your Stepmom to read some of this website about folks who have gotten 2nd opinions that have been much more favorable. I don’t know….just thinking it’s worth a shot. Lots of hugs – Nancy
Thank you for your responses. My stepmother and I have been on very good terms through this whole thing. When Dad came home the first time I took vaction time and stayed with them to help. So far as I know this is the only thing we disagree on (second opinon or move). I do realize that it is alot of work for her and we do agree that this time when/if he gets out he will need to go to a rehab center to help. As far as the costs. He is a retired firefighter from seattle and has full pension and all his medical is 100% paid. Like I said he is one of the very lucky ones.
He had this done at OHSU… Oregon Health and Science University. Other then my dads case I have no experience with them. The hospital is in Portland OR. and I live in Seattle Wa.
I have heard great things about John Hopkins Cancer center in Seattle and University hospital in Seattle but they chose OHSU because it is closer to my stepmother. Which I supported 100% at the time.
As far as his bed sore, up until he was put back into ICU he has I think they call it a medvac on it that keeps the circulation going to make it heal faster. They do not want to put it back on in the hospital because they say the sponge collects too much bacteria. That makes sense to me. Why it has taken so long to heal I dont know. It was very bad and very deep right above his tailbone area. He got this the first two months he was in the hospital. I am not sure if they were unaware until it was too big or it just got real big real fast.
Don’s Daughter – You are in a very difficult situation….sort of “caught between a rock and a hard place.” How is your Dad’s mental state? If he is doing well, perhaps you could chat with him about a second opinion? I’m not sure….I’ve never been in this position. It is very touchy. The important thing is how much experience his current doctors have with cholangiocarcinoma. Good luck – Nancy
an added point, after Tom’s initial resection he had two drain tubes for 7 1/2 months. The 2nd drain tube was added after surgery because he had a pool of bile collecting behind the liver. This is fairly common with bile duct cancer where they remove the liver. The cut side of the liver can ‘leak’ bile into the abdomen and that means external drain tubes to drain off that bile so it does not ‘grow’ bacteria.
It sounds like his doc’s are on top of everything. The only other thing I would add is to ensure that the ‘Wound Care Team’ has been called in to address the bedsore that your dad is experiencing.
Margaret
Don’s Daughter:
As a Step Mother myself, I urge you to be very careful on how you approach this with your dad’s wife. This may depend upon how good of a relationship you have with her and also may depend upon how long they have been married.
My husband Tom has three children from previous marriages and he and I have been married for 10 years. Although I will listen to advice from his children regarding his care, he is my husband and he and I make decisions together regarding his care. As his wife, I have the final say so in all those decisions.
Since Tom’s children do not care for him on a daily basis (I do) I feel that they do not have many ‘rights’ in making any decisions for him or for his care. That includes doctors, hospitals, surgery, chemo, etc. They are not the ones paying for the health insurance, they are not the ones who help him bathe, dress, get to/from doctors appointments. They are not there by his side for each and every surgery that he has. They are not the ones who changes his dressings, they are not the ones who spend time with him.
If you do approach this subject with your step mother you will have to do it in a very cautious, sensentive manner so you do not get her upset, after all she IS HIS wife.
I know that this is a very hard thing for you to watch your father go through, however, she is his wife and those decisions have to fall to her.
Hopefully your dad’s doc’s figure this out quickly!
Go with God!
Hugs,
MargaretDear Don’s Daughter, welcome to our wonderful family but so sorry you had to join us. Wow, your dad has really been through the wringer! Where is he being treated? Has his doctor and the hospital treated CC patients before? CC is a roller coaster ride with many surprises. What I don’t understand is why the bedsore did not heal in all this time. Infections are common after surgery of that kind, but they should be able to get it under control after so long. I agree with you that perhaps he needs another opinion and another hospital. What if you told your Step mother that you would feel more comfortable if someone else was just asked about all he is going through. As the daughter you have a right to speak up. What if you talked to him and he talked to his wife. I sure hope you can get him to feeling better and please keep us posted.
I am new to this group and I have spent several days looking through a good many of your posts and you guys are generally so encouraging and upbeat. I think its wonderful.
here is my story, My Dad was diagnosed with cholangiorcarcinoma around June of last year. They found it by accident when they were running some tests for some kidney stones he had. He had no symptoms and felt great. There was just a little mutation of his liver and they werent sure that it was cancer but recommended surgery. He got a second opinion and it agreed with the first. Could not tell for sure. In fact when we were in the waiting room during surgery the first update call we got was to tell us he didnt have cancer but later that call was updated to say they did find some. I am telling this just to explain how small it was.
So they then removed some of his liver and bilduct. They then from the way I understand it they took part of his instestine and used it to create a way for the bile to drain into the instestines. They call it a Y something. I dont remember the name. Well that leaked horrible so he was in the hospital for two months with many complications and in and out of ICU and one more surgery. He finally got out just before Thanksgiving. He is one of the lucky ones that has insurance to pay for in home care. He still had drain tubes coming out of him and was told they would take them out when they stopped draining so much.
He was doing not to bad and went back to the hospital and had one of the drains removed in January. Once that was done his bile started leaking much more rapidly again. The Doctor kept telling him it was ok but she wanted to wait until he got stronger and the bedsore he got in the hospital the first time he was in got better.
Well three weeks ago they took him in to look for the leak because he became very ill with a large spot of fluid near his lung. They were suprised at all the scar tissue inside and said they couldnt find the leak without doing anymore damage. So he will have to live with the drain the rest of his life.
As of yesterday he is cancer free and is still in ICU with pneumonia, a blood clot in his leg and they are feeding him through a tube. Ecoli in his blood And very incoherant with little pain meds. Still has huge bed sore. Going on week 4 of ICU.
I feel very helpless because my stepmother likes all the nurses and doctors and doesnt want to move him to a different faciliy. I havent found any other posts that had this much stuff wrong when the cancer was small and caught early. He was healthy when he went in. scuba diver, dirtbike rider, fisherman. Many things. This whas his very first surgery in his life.
Has anyone else out there experienced this? I dont want to fight and argue with her if this is common. but if its not I would really like to see if I can talk her into at least getting a second opinion on his now condition. But it seems I backup for my request. I am at a loss.
Thanks for listening.
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