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Donna,try and keep Jim out of hospital.He needs the hospice/palliative treatment now because he needs it to be accessable and coming to him.It may make a big difference to how he feels.If the pleural tap needs to be done,he would not be in hospital long,just a day,overnight at most. Janet
Donna,is Jim on oxygen at home?86% is a bit low for comfort if not.The cancer may have spread to the lung or it may be malignant cells in the effusion which is basically fluid where it shouldnt be.Sometimes it is present in the abdomen and sometimes in the chest.It can be drained off(tapped),but as it does return its not always done.Is hospice happening for you yet? Janet
Hi,Jennifer,it is quite painful after the procedure and most people need regular analgesia for a couple of weeks.Having said that,it should start to ease after a couple of days.You know its working by the absence of the jaundice,the colour of the urine is sometimes the 1st indicator of that,skin and eyes etc take longer to yellow.Your dad will hopefully recover some apetite soon as the fall in bili levels happens Janet
Hi I too understand how you feel,and its not a good place to be.I lost my husband just over 3 months from diagnosis and he was well,it was picked up on a routine checkup.Sometimes I feel as if I am still processing it all.
It was very hard for me because as an RN I knew exactly what cholangiocarcinoma was and what would happen so the initial diagnosis was the biggest shock I have ever had in my whole life.
You need to be very patient and kind to yourself.It will ease a bit with time and not feel so devastating.Grief is very,very tiring and your energy levels will be low for a bit but it will improve.Gentle exercise of any sort helps a lot.If you have some counselling available that can be good too,worth a try.
My very sincere condolences JanetI am happy you got it sorted and I hope your dad improves quickly,he should do.Babies are great,I have a newborn nephew so am enjoying babies at the moment Janet
People are welcome to disagree but I have been on both sides and have seen how unhelpful it can be to the patient when a “major fuss” is made and how it sometimes backfires.Persistant was my key word,polite but persistant,I think it gets better results Janet
Jennifer,what a nightmare for you.Is the problem coming through the emergency system?I am in another health system again!!but sometimes it is quicker to access tests and procedures if you are an inpatient,in your dads case it has backfired.Who knows what else is going on in there.Good luck in getting il properly sorted out. Janet
addit…by the way dont make a major fuss,just a subtle persistant one
Teresa,what a terrible time you have had,losing your son and then your husband more recently.I hope you have some really good friends on hand and we internet types are here,we have a lot of experience between us particularly on the loss of husbands.
So please connect here for anything we can do to help Janet xHi Jemima,
so hard to know what to do!I felt that I did not want my husband to look things up,I wanted to spare him really.There are some success/survival stories on this site and we love them but they are few overall.
This diagnosis is actually a pretty devastating one and your mum needs so much help to digest it all. sorry,sorry about what you are all going through JanetJeff was such a great bloke.He was always very sensible and no nonsense with his posts but very funny at times.I rememember how he loved The Eagles and I always think of him when I play them.”Take it to the limit” was his signature.
I miss him,he was one of a kind JanetHi there everyone,
Where has the time gone?it is not quite the same is it?I find time going very quickly but then I lie awake at night going over and OVER all those awful times just before Joel died.Sometimes I cant remember how old I am,seriously I have to think because it is as if time has been frozen yet is rushing ahead.
This cc site has been so great for me though,I feel as if I have made a whole lot of penfriends and I apreciate that.
Pauline,I dont wonder you missed Anthony with that election of yours.I missed Joel,he had a degree in politics and he would go on and on about it all and I only listened with 1 ear,now I miss his ramblings!
Now you are all heading into summer and me into winter.
love from JanetJemima,the stent is the most important treatment to get happening quickly.After that it is not so clear and needs careful investigation and planning to work out the best way forward Janet
