Topic: Dad is coming home

Hi all -

I haven't posted in a while.  Dad came out of the hospital after a 30+ day stay to go to rehab and get 'strong enough' for possible chemo.  He left the hospital with two percutaneous bile drains.  His diagnosis is bronchoalveolar carcinoma (rare type of lung cancer - and his is a rapidly progressing pneumonic form) and cholangiocarcinoma.  This is made worse by his sudden chronic renal insufficiency.  After 1.5 weeks in rehab, we went to the oncologist today and were told that there is nothing they can do for him.  Nothing.  No chance for chemo, radiation, experimental anything.  He has decided to come home with hospice and make the most of whatever time he has left.  We didn't ask how long he might have, and I'm glad they didn't offer any. 

The worst part is that he really thought he was going to be told he was ready for chemo.  He told me on Sat that he was expecting to hear that he is in remission.  Such a disconnect.  He was shocked, although he can barely even get out of bed and can only walk a few steps.  He has lost at least 50 lbs in the last few months.  And he was perfectly healthy as of July 4 of this year.  His onc has done much research and found only about 100 other cases of people like him.  No treatment was available in those cases either.

I don't know know what to say to him.  It's so hard.  At least he will be home after almost 2 months away. 

Michelle

Re: Dad is coming home

Michelle

So sorry to be reading what appears to be all round negative news about your dad.  But nobody knows how he will react when he gets home.  It may be that some of the intense pressure he must be under is lifted and this helps him, even a little.

The docs, particularly the GPs also have a hard time in the treatment of cc.   The introduction of one medication can suddenly start a problem with another area or organ.   For example, I have bad water retention and it is proving difficult to remove that.  At the same time I have a poor appetite so am being given appetite enhancers that create more fluids!  It becomes a balance.

I do hope that dad is able to pick himself up since that is one knock-on effect everyone would enjoy.

All the best

Ron

Re: Dad is coming home

Michelle,
I am sorry about your fathers news which I am sure was made all the moe difficult because he didnt expect it.

People here have nothing but wonderful things to say about hospice and I am sure your father will not be the exception. Enjoy the time with your father and know that we are here for you.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Dad is coming home

I'm so sorry to hear your dad's news, Michelle.  My sister was in hospital a long, long time, too & is currently waiting to see her Oncologist to talk about starting chemo.  I know what a terrible blow it would be if we were to be given the same news you have been - it must have knocked you all sideways.  Kris is so right - we are here for you.

I'm sending all good, loving & positive thoughts & wishes to you, your dad & your whole family.

Julia

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Dad is coming home

Michelle,

Sending you hugs and best wishes.  Take care of yourself that you might appreciate this time with your dad.  I know all too well how valuable these moments are.  You have the strength within you to endure whatever comes up.  Trust your instincts as to what to say, and when.  I'm sure your family has so many confusing thoughts that can run the whole spectrum of life.  This is the time to have the conversations that you will hold dear in your heart and revisit throughout your life.  I am so very thankful to have had  many opportunities to talk with my dad.  Our visits are my most cherished treasures.

And when you feel that you can't take much more, know that we are beside you, holding you up.

Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Dad is coming home

I am very sorry for this news.

Jan

Re: Dad is coming home

Michelle,

Just echoing Jolene's word. You are strong and will make the right decisions. Follow your instincts and do what feels right for you and your dad.

Bz

Re: Dad is coming home

Michelle,

I'm sorry to hear this news. My best wishes go to you and your dad.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.