andie
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Dear Anp,
My Dad also has no treatment options left and we were told 3-4 months in September. He is doing well considering, jaundice, weight loss and tiredness being the only physical symptoms at the moment. Is your Dad taking any supplement drinks? only my Dad was breathless a few weeks ago and since re starting these drinks he has been much better.
As for the holiday I would go now, you can always do something else special in April if your Dad is still well enough.
Best wishes
Andrea
Dear Lots,
Your step-moms tumor is in the same place as my Dad. He turned jaundice last February and was diagnosed in April with CC. He too has had no treatment as his bilirubin level has never been low enough for chemo BUT he is still with us. I know it’s hard but take each day at a time, some days will be bad but they only make the good days better.
I’d also advise getting second opinions, we got 2 more opinions and whilst they were both the same outcome atleast we know we have tried.
Luckily Dad is only jaundiced, no pain, still eating although a little more tired and thinner. He takes fortijuice drinks to help with nutriants lost, he also drinks alot which is important.
sending lots of best wishes your way
Andrea
Rick,
I’m sorry to hear your not feeling as well, and I’m hoping by the time you reply your pain has been sorted out and the positive vibes off everyone on here have travelled your way.
I must admit that the start to the New Year on this site has not been good, and I have found myself panicking more over Dad. My husband even told me to stop visiting this site and I must admit for a while I was only selectively reading posts, but everyone is different and CC doesn’t effect everyone the same, that’s what I keep telling myself. Dad is still painfree, still eating and although more tired he is doing well considering he should be in his last month according to the Doctors. We just have to take each day at a time but my Dad has been the same as you wanting to sort out everything at home, just incase. He started doing this in April when he was told he had 2 months to live then! No one knows our expiry dates, I know it must be very hard but please try and stay positive as i believe attitude helps enormously.
Take care Rick,
Best wishes
Andrea
Dear Sistercorb,
I’m sorry to hear your Dad has had an accident but like you say ‘everything happens for a reason’ and now his stents have been sorted, which will help your Dad so much.
Like your Dad, mine has been given 3-4 months but this was in September and he is still putting up a very good fight. His stents are blocked by his tumor so he has an external drain which helps. Last week we had a scare when Dad was very breathless and his drain leaked. Since then it has been flushed and his breathing and mood are 100% better.
I’m praying our Dads prove the doctors wrong in there time limits. Enjoy each day and remember miracle do happen.
Love and hugs
Andrea
My Dad is on constant antibiotics to help prevent infections, Ciprofloxin (sp), perhaps you could ask your Doctors about this. My Dad has 3 metal stents and an external drain. The stents being metal can’t be replaced, so I take it your Dad has plastic stents.
I know when Dads stents have become blocked his jaundice re appeared, therefore his bilirubin was raised. They also told us to look out for itching, dark urine and fever/chills.
Best wishes
Andrea
Julia,
It is so hard not to clock watch but I do keep remembering there is no expiry date stamped on us!! I hope you and your sister are both ok. xx
Jen,
Thanks for your advice and support on the ‘drain’ experience. Fingers crossed it will be problem free. What sort of high calorie food does your Mom do? perhaps I could pass some ideas on to my Mom. She could do with putting some weight on too!! Here’s to many more months with our Dads, xx
Thanks for your advice Marion, Mom has been given him larger portions and he has been eating them.
He has gone a bit fussy with his food so he seems to be having the same food all the while, but as long as he’s eating and it’s what he wants then to me that’s ok but Mom is getting a bit frustrated that he has gone off a lot of food. Slowly I think she is realising that as long as he’s eating it doesn’t matter. At the moment he wants buttered mash potato and gravy, so he is having that most days. He also likes soups for dinner and he is enjoying apples and lots of tinned peaches and ice cream. He also enjoys tomato on toast and today asked for kippers lol.
Dads drain is working again, he is feeling less breathless and his appetite is better. He said he feels better than he has for a while. He has started to take his fortijuice drinks again since Tuesday, so perhaps these along with the flush have helped.
He is now in his 4th month of being told he had 3-4 months and he said he really doesn’t feel any worse (now the drain is working) he has lost weight though.
For now the rollercoaster ride has slowed down, I hope it stays that way!!
Best wishes to you all
Andrea x
I know my Dads was in the 800s after his stent exchange. This was caused at the time by inflammation of the bile ducts. If the bilirubin is now lower perhaps infection and inflammation have caused the ALP to be raised. I would have thought a lower bilirubin was a good sign.
Best wishes to you and Dave
Andrea
Dads drain has been flushed! fingers crossed this solves the problem.
His GP gave permission in the end as the QE hospital weren’t willing to give permission until the flow had completely stopped. Like you say Jemima, good old NHS!!
The past few days have tipped both Mom and Dad over the edge and they have been snapping at each other alot. I feel like piggy in the middle. Mom is a worrier and doesn’t cope to well when things start to fall apart. She is convinced the flushing won’t work and it’s the tumor blocking the drain. When they flushed it Dad said lots of sludge came out but at the moment it’s saline mixed with bile flowing so I suppose we won’t know if it has worked until the next few days when he can compare bile colour and output.
Best wishes
Andrea
Jen,
I can’t get my head around it either when people are flushing their drains daily. They said it was due to infection, surely not flushing has more chance of causing infection. Perhaps the UK do things differently. I must admit Dads drain as been problem free for 3 months without the flushing. The District Nurses come weekly, daily if needed, so Dad is going to discuss the flushing with them once they have permission to do it.
I just feel so down at the moment as Dad is really fed up with the leak, it is effecting his sleep at night and he is just generally fed up, which is horrible to see. I really hope they sort it out and it becomes problem free again. I am happy though that his lungs, stomach are not showing signs of fluid though as I had convinced myself that his breathing problems was due to this. So at least through one problem another one is put to rest.
He enjoyed sausage, suede and potatoes tonight too which is always nice to hear.
Best wishes to you and your family
Andrea
Well, the QE Hospital won’t give permission to flush the drain until the bile stops draining completely, which doesn’t make sense to me. Surely the bile is building up and needs to be able to flow. It has dropped from 200 a day to 50.
Dads doctor came to see him today as Dads District Nurse was concerned about Dads breathing. He has agreed to give permission to flush the drain, so hopefully it will be done in the next 2 days.
The good news is Dads lungs are clear and no ascites, so his breathing problems are more than likely due to the lack of nutriants and a bit of anxiety. BP is perfect and no temp. Dad has started taking his fortijuice drinks again so hopefully we will see the difference in a few days.
Fingers crossed the tube gets flushed and the bile starts flowing again.
Best wishes
Andrea
Thanks Betsy,
The Nurse should be in touch with the hospital to get permission to flush dads drain tomorrow, it’s bank holiday today so everything comes to a stand still.
I don’t understand why he was never advised to flush it. The District Nurse did mention to dad last month about flushing it but dad said everything was flowing fine so to leave it. Looked like he spoke too soon. He is on constant antibiotics so hopefully these will help keep infections at bay.
I’m worried he won’t go in for a tube change, as he is very stubborn and already told the DN he won’t go back in. Suppose we will just have to cross that bridge if and when we come to it.
How often do you have your tube changed?
Thanks
Andrea
