andie
Forum Replies Created
-
Posts
-
Hi Val,
My Dad had high bilirubin once 600, and he didn’t have any other signs apart from the Jaundice, did the doctors ever mention why? My dads bilirubin is 260 and he still only has the jaundice. The doctors say he is amazing. Unfortunately there is nothing else they can do for my Dad as they can’t restent as the tumor as blocked the stent blocking all bile flow. He has an external drain but is only getting 200ml a day. My friends Dad had gallbladder problems and they fed his bile back in to him via a IV. If you don’t mind me asking which hospital have you been treated at?
Best wishes
AndreaHi Katja,
No Dad hasn’t got no itching yet and even when he had previous bilirubin of 600 he never really itched much, which has really puzzled the doctors.
We didn’t go to the apointment, which I am glad about. I would have supported my Dad with whatever he chose but I must admit I wasn’t looking forward to the Consultant telling us that Dad only had 3-4 months left again. The first time we were told was by the Macmillan Nurse and Dad just got dress and left the hospital once she’d told us.
The local District Nurses will see my dad now every Monday, and when the time is right the Macmillan Nurses will start coming too. At the moment Dad doesn’t feel the need for them. He has spent today re grouting the bathroom tiles, though he was a little breathless afterwards. Dad is always breathless after having stent procedures and he only had is external drain put in 2 weeks ago so whilst Mom and iIhave told him not to do too much we understand he feels the need to do something, so we have let him carry on.
I am so proud of him, he is the most kind hearted man you could ever meet. Everybody loves him. He is and always will be my hero.
How is your Dad doing? I hope he is still keeping well
Much love and best wishes
Dear Jen,
I know what you mean about the tears. It was my first day back at work today since we were told there was nothing else they could do for Dad. All the girls I work with are lovely but whilst I tried my best to be strong the tears flowed a few times.
I haven’t cried around Mom and Dad, though it’s hard. Dad has said all the tears and anger won’t change anything so what’s the point in wasting time with them. I suppose he’s true but the tears are still flowing, especially at night. I’ve started to hate bed times as that’s when my mind is most active.
My 9 year old son is looking forward to Christmas and is counting down the weeks but whilst I have to stay happy on the outside for him I am breaking on the inside as to me I am counting down Dads last days. I know I shouldn’t think like this but at the moment I can’t help it. We are due to go to Florida next May, something my Dad was looking forward to hearing about when we got back. I’m praying for a miracle that he is still here fighting to hear about it.
Thinking of you too.
Andrea
Dear Kevin,
I am so sorry to hear about Kristin. Although we never met in person she touched my heart with her kind words of advice whilst I have been searching for answers regarding my Dad. She truly was an inspirational person who will be greatly missed.
You and your families are in my thoughts.
Andrea
Dear Jen,
Sorry you didn’t receive the news you had hoped for. Your Dad sounds like mine, a fighter with a positive attitude. My Dad has now been told there is nothing else they can do for him. The courage he shows is amazing, the doctors have also said he is amazing. His high bilirubin levels should really be effecting him but they are not, apart from his orange tinge and eyes you wouldn’t know he was ill.
I’m sure your Dad will keep fighting, not only for you and your family but for his future Grandson.
As for chemo my Dad never got to have any due to his high bilirubin levels, but when we spoke to the oncologist they did say Dad would have a break after 6 cycles then another chemo combination could be tried, if that was the route he wanted to take.
The bench has brought a tear to my eye, how beautiful, a place that you and future generations can sit and be with your dad and his little peace of heaven.
Have a wonderful thanksgiving making more special memories with your wonderful family.
Best wishes
Andrea
Dear Pam,
Vent all you want. I understand your pain. My dad has been told no that there is nothing else they can do for him. I am an only child, I luckily have a great husband and family but Dad looks to me for all decisions and help. Dad too is very jaundiced, his bilirubin is 260. Luckily he is still feeling well, eating little but often, no weight loss or confusion, just the yellow skin and eyes give his illness away. The doctors said he’s ‘amazing’ because he should be feeling unwell. Because he is still getting out and about people are starting to stare at him due to his ‘glowing colour’ which makes me mad
and I hope it won’t stop dad going out whilst he feels well enough too.Our Dads will be experiencing all sorts of emotions and they often say that you always take it out on the ones your love.
Dad is still positive at the moment, we have been given 3 – 4 months max, so Christmas is hard to think about. My 9 year old is counting down the days but to me I’m counting down the days for a different reason.
My thoughts and prayers are with you and your Dad.
Andrea
So sorry to hear that your dad has passed away. My thoughts and prayers are with you and your family at this difficult time.
Much love
Andrea
Kate, Thank you so much for your kind words, they really do mean alot.
Lainy, Thank you for your advice on Cyberknife, Dads clinic nurse is in the process of referring Dads scans etc to the Centre in London. Dad said he only wants it if there is hope it will shrink his tumor enough to open his bile ducts for his bilirubin to lower. We will have to go private for this and at
Dear Michael,
I am so sorry for your loss. Hold on to all the memories you made together. Dads never leave us he will always be by your side, guiding and watching over you and your family.
My thoughts and prayers are with you and your family
Much Love
Andrea
Lainy,
We are in the process of referring Dads scans to the Cyberknife Centre. They said in April it was 1.8cm but it’s obviously grown as its covered the stents, but they didn’t pick it up on his last CT scan. I’m not sure how they will know what the size is. My other worry is if the bile ducts are blocked how will they put the seed markers in?
Dad is a real fighter. I will not cry in front of him, I refuse to. Last night when we walked in to visit Dad and the Macmillan Nurse was there, I could tell by Dads face that it was bad news. It breaks my heart because all he kept saying was “sorry”. The drive home from the hospital was the longest drive ever, trying to fight back the tears. As soon as I dropped them off the song “I could really use a wish right now’ (not sure of the title) came on. How true is that!
Today has been hard, the phone hasn’t stopped ringing and I keep having to re tell the news. I just want to go to bed and sleep and hope I wake up and it’s a bad bad dream. I’m hanging on to the fact that he still feels well and Mom said he hasn’t stopped eating today. They have told us it is his Liver that will be the cause of his death and not the cancer. He will sleep more and then fall into a coma. I just pray it does happen like this and he suffers no pain. That is my main worry, seeing him in pain.
My love and hugs to you and Teddy
Lainy, what a lovely thought. Your Teddy reminds me of my Dad at times and I’m sure they would have much in common to talk about.
I hope I can find it in myself to be as strong as you are the next few months
Love to you all
Thank you all.
I’m just in shock, last night I was numb, then angry and now the tears won’t stop falling.
We were so happy the other week when they said no change on CT scan, how naive was I? This sneeky little b%
Hi Jen,
Yes everyday is a blessing. Somedays it so hard to believe Dad has got CC, as he still feels well and does everything he did before he was diagnosed. Apart from these pesky stent problems we are counting ourselves lucky compared to what some people go through.
Did they ever say that your Dads drain was temporary? and does he wear it on his leg?
Hi Betsy,
Thanks for all your advice, specially re the blood loss after the procedure. I told Dad and it seems to have made him more at ease knowing this can happen.
Best wishes to you both
Thanks all,
Dad is feeling well, had a slight temp Friday night but didn’t last long. He’s eating well and said only slight discomfort around where they have inserted drain.
No doctors have been to see him yet, sign it’s the weekend! so he still doesn’t know fully what they have done. The Nurse who was with him whilst he had his pct said it’s only for a few weeks and it’s an internal/external drain?? Anyone had this sort of drain?
I presume because his other stents are working this drain is helping the kinked stent release the bile. They have mentioned rotating antibiotics too so his system doesn’t get used to them.
Was a bit concerned there was blood in his bag and also a clot but bile is coming through now. His bilirubin was 200 before the procedure and 201 now, but it has always gone up slightly after he’s had his stents fitted/cleaned, I’m guessing its all the backed up bile flowing around his system. He also seems more yellow, funny how it doesn’t take long to go yellow but ages to lose the colour!
More waiting but hopefully we will know more Monday.
Best wishes
