gavin

Keeping my fingers crossed here as well for you Brigitte!!! And hoping too that the pain eases as well. Big GRRRR to pain!

Hugs,

Gavin

Hi Silentk,

Welcome to the site and my apologies for not replying to you up until now. Sorry to hear of your husbands diagnosis and also what you are going through also with everything. Having been my dads carer when he went through this and also having been my mums carer for 11 years now I can relate so much to what you are going through right now.

My dad experienced much of what your husband is going through right now and he also withdrew a lot from everyone for much of the time after his diganosis. This I would argue is quite common. Part of his treatment was in hospital in which he had to spend around a month or so in a room on his own and his doctor put him on Prozac during that time. He had light sensitivity due to the PDT so had to stay in the room for a month and no wonder the docs wanted to put him on Prozac. Is there anyone that could speak with your husband on a man to man basis I guess to try and get him to talk a bit about things and what this is doing to you?

Your social worker sounds like they are on the ball here so maybe they could do this? An AD for yourself also sounds right as you have a ton of stuff now to deal with. Please do not ever beat yourself up about what you are doing as you are doing everything that you can to help right now. No one has wrote a book about the right or proper way to do all of this and there is no manual as it were. You are doing great so do not waste energy worrying about that if you were.

As to future care. If you feel that you have reached or reach the point where you do not feel capable anymore of providing the care that your husband needs and deserves then please please get on the phone to the social worker or the hospice team and tell them immediately. Do NOT feel ashamed or bad about doing that as that is their job and what they are there to do. They are the professionals and we are not. We do our best and what we can but sometimes we need the help of the pro’s. No shame what so ever in that.

As to the ascites and the draining. The draining of the fluid from the abdomen will help your husband feel better once it has been drained but it will keep on coming back hence it will continue to need to be drained. But hopefully when it is drained he will feel a bit better after it. And the tiredness and wanting to sleep is also common and my dad went through that as well.

It does sound from what you say that you have a good team around you but remember not to be afraid to ask them for more help if need be. You should not go through this alone and fi it gets to the stage of in hospice care then they will be there to keep your husband as comfortable as possible. My dad went into hospice care and they took very very good care of him.

Now that you have joined us here you are definitely not alone in this, we are all here for you so please keep on coming back and we will help in what ever way we can. We don’t have all the answers but many of us have been or are going through what you are. And if you want to vent, shout or scream then feel free to do so as that often helps! Please keep us updated on everything.

Hugs,

Gavin

Thanks for posting that. And just for those who may not know, Prof Valle is the Vice Chair of our Medical Advisory Board.

http://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/advisory-boards/

He has also helped a number of our members or their loved ones here in the UK as well.

Gavin

Hi Catherine,

This is great news indeed, thanks loads for sharing it! Just made my night actually!! Fingers crossed for Tuesday now and let us know what the board say. The good life sounds good to me!!

Hugs,

Gavin

Hi Hopeseeker,

Sorry to hear about your MIL’s weight loss and unfortunately this is quite common. I have another link here that you both might find useful and hopefully get some ideas as to extra things she could try with regards to nutritional supplements and help.

http://www.macmillan.org.uk/information-and-support/coping/maintaining-a-healthy-lifestyle/preventing-weight-loss

There are quite a lot of ideas on this page and you can click on the links within the page for more info etc. Macmillan are one of the major cancer support organisations here in the UK so no need to worry about where the info is coming from, just in case you were!

I would also add that yes, as long as your mum is eating then that is a good thing and if need be then eat smaller amounts more often. Also, eating things that are more easily digestable and broken down would also help.

My best to you and your MIL,

Gavin

FDA Press announcement here –

https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm574058.htm

From BBC in the UK – http://www.bbc.co.uk/news/health-41094990.

Yes it is very interesting and exciting and lets hope that this will be a big success. Much is going on with regards to research and new treatments etc but the cost of this drug alone is a lot. Not sure how insurance companies in the US will react to the cost and I guess that for here in the UK, it will have to go through a ton of hurdles with NICE to have any chance of getting approved.

But my fingers are crossed for this and other immuno treatments though!

Thanks,

gavin