March 20, 2009 at 10:09 pm #26041
Hi all, just want to say thanks again for the really nice replies to my original post. I haven’t had much chance to come back to this forum so apologise for the delay in responding. My Dad is doing ‘ok’ ish… we’ve had a few blips where we’ve had to get to hospital quickly (rigors and fever). So far, antibiotics and pain killers seem to be keeping things together. Dad is weak and has not regained any weight so always looks fragile. He’s a tall man which also makes him look thinner. Dad was diagnosed 6 months ago and every month I worry that we’re closer to losing him. We still don’t talk about the diagnosis or prognosis (which he doesn’t know) and, although I think he does know he has cancer, he doesn’t want to acknowledge it or let it overtake his life. I’ve been reading a lot of posts tonight and send my best wishes to everyone on this site… HBxFebruary 3, 2009 at 7:20 am #26040tiapattyMember
I agree with Gavin that hospice is helpful not just for the medical care but because they usually have a social worker visit as well to counsel the patient and family. It is different than talking to the doctor about how much time he may have left, etc. Even if your father is not ready for this, you may want to contact them to see if they provide services for the family.
PattyFebruary 2, 2009 at 10:54 pm #26039gavinModerator
Welcome to the site. Like Darla says, I am glad that you found the site, although I am sorry that you have to be here. First of all, many thanks for sharing and I am sure that you will find the same support and encouragement that I have found from the people here. This really is an excellent site and the people here have given me great comfort and support.
Like you, I am in the UK, I live in Dundee and my dad was diagnosed with inoperable CC last summer. Because of the location of the tumour, there was no hope of any surgery at all. Like you, we had never heard of bile duct cancer and went through the same emotions as you have gone through and thought, how can this be, how can my Dad be so unlucky. He is only 64 and his general health is good. Also like you, my Mum isn’t that well either, in fact her general health is not good, she has COPD and I am their carer. I do all the chores, shopping, cooking etc and am there for them all the time.
As far as my Dads treatment went, he had a metal stent inserted and still has to this day. He was jaundiced pretty badly, itching really badly and the stent helped with that. Since no curative treatment was possible, he was offered Photo Dynamic Therapy and the hope here is that this and the stent combined will help slow down the progression of the tumour. I know this wont cure him, we were told this a few times by his docs, but slowing it’s progression down seems to me like the next best thing. I dont know if your dads docs talked to you about it’s treatment, it seems far more common in the UK than in the US, this was the first thing my Dad was offered.
I agree with what Jan says about getting a second opinion. Also, does your Dad have a Macmillian nurse? My Dad was asked about this and he said he would like the Macmillan nurse to come see him when he got home from the hospital, he was there for the best part of 7 weeks. She is great and comes to see him when he needed it, first it was every week once a week or more if he wanted. She was able to talk to him about everything in a different way than a doctor could, and in his home and in a relaxed manner. She was also able to get new prescriptions sorted out oretty quickly if needed, as my Dad did for some pain meds that needed to be upped. Another service my Dad had to use a few times was the district nurses, do you have the phone number at hand for them for the 24 hour service?
Like you, Im not sure what the next step will be or what the future holds. My dad had his first CT scan lask week since undergoing the PDT therapy a few months ago and now we are just waiting for the results.
Don’t give up hope and don’t stop fighting. If there is anything that you want to ask me, then please do so.
I wish you and your Mum and Dad the very best and I will keep all of you in my thoughts and prayers.
GavinFebruary 2, 2009 at 10:19 pm #26038marionsModerator
HeartbrokenFebruary 2, 2009 at 9:09 pm #26037tessMember
Dear Heartbroken, thanks for finding the strength to share. You’re not alone and you’re in our thoughts. My Dad was diagnosed in early Nov. Much like your father, he too refuses to hear of any diagnosis or cancer stages. I think it’s a coping mechanism, and I don’t know that he’d live life much different than he is now- even if he knew the stats. I’ve discovered that sometimes just being there, as you are with your daily visits, is all you can offer….. but it counts for a lot to our Dads.
This board is a great group of wonderful people, many of which are in the same positions of both you and your Dad. Feel free to post your thoughts and questions, you’ve found a good support system here.
Best to you at this difficult time.
TessFebruary 2, 2009 at 8:47 pm #26036
Darla and Jan. Thanks for your kind replies. I will certainly be reading and posting messages now I’ve found this site. Best wishes to you both..HBFebruary 2, 2009 at 5:51 pm #26035darlaParticipant
Welcome to the site. I am glad you found us, but sorry for the situation that has brought you here. I too think it would be helpful to get a few more opnions.
You will find a lot of useful information here. Everyone here is so knowledgable & supportive and there are several members from the UK that may be helpful to you. This disease is relatively rare and also unpredictable. It affects everyone differently. One thing I would suggest is to make sure that your Dad is comfortable and not if pain.
I am so sorry that you and your family are having to deal with this. I know what you are going through as I have been there too. Try to stay strong for your Dad & Mom. Keep us updated and come back as often as you need to to ask questions or just to vent your feelings.
You & your family will be in my thoughts & prayers.
DarlaFebruary 2, 2009 at 5:12 pm #26034walkMember
I think your “name” sums up what all of us feel from time to time. Many others on here are far more versed in this than I am. I would encourage a second opinion, though, I am sorry to say, it sounds like your father is in a difficult condition.
Most folks here contact hospice (not sure if that is its name in the UK or what similar in home support is called) to get involved early – maybe weekly- while increasing their presence in the home as needed. This will help your mother keep him at home if that is desired.
Sorry you had to find this website.
JanFebruary 2, 2009 at 4:27 pm #1975
Hi, I’ve just registered to this site as trying to find out as much as I can about cc. My dad was diagnosed in Sept 08 and is getting weaker and weaker. It’s so scary. He isn’t having any treatment – there is nothing they can do now. He had a stent put in and has had a few infections/chills and a few emergency hospital visits. He’s now on antibiotics all the time and some antacids as he gets a lot of reflux. I’d never heard of bile duct cancer before and it’s extremely rare in the UK. I can’t believe my lovely dad has been that unlucky. A big problem we have is that he doesn’t want to know the diagnosis and so (although he knows something is wrong and has his suspicions) he doesn’t want the consultant or doctors to go into any detail, so he doesn’t even know he has cancer and he’s on borrowed time. He spent a month in hospital last Sept and had every test including a failed ERCP (ended up with perforated bowel & in high dependency unit) and eventually had the bile stent put in through his skin via the liver. Although I’m working, I visit my parents every day and try to sort out whatever they need. It’s really distressing as I can see my dad getting weaker and a bit more confused now and constant stomach ache. I’m not sure what to expect and what the next steps will be. I just pray he won’t suffer and the doctors can keep any pain at bay. I’m guessing he may have to go into care at some stage as my Mum isn’t that well either and wouldn’t be able to cope if he needed a lot of personal care. I feel ill just typing this and I’m sure everyone on this site has felt the same or they wouldn’t be here. The hospital talked in ‘months’ rather than ‘years’ when we asked how long dad could expect to live and that was four and a half months ago, so I’m clinging on to every day in the hope that dad will stay a bit longer. Sorry I’m going on a bit here. Heartbroken.
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