My worlds come crumbling down
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Andie
I am so sorry to hear this news about your Dad. I can only begin to imagine what a devastating blow it must have been. My thoughts and prayers go out to you and your Mum and Dad.
It sounds like you are not giving up though and certainly getting the Cyberknife referral and a second opinion from someone else is a step forward.
Is there no chemo that he can try, even with raised bilirubin levels ?
Thinking of you
JemimaAndie,
Your hope and courage has reached and encouraged many. I can understand your father not wanting to get his hopes up unless there
Hi Andie,
I have only just seen your post and want to pass on my thoughts to you. I am so sorry things have changed so much so quickly.
I think with cc it very often twists and turns in ways the Doctors and professionals don’t expect.
I read your post about your Dad aplogising for the fact that the tumour had blocked the stent and it took me back to wehn my Dad first got his diagnosis in May 2009, that was what he said to me…. I’m sorry….
I am sending your strength and peace, I do understand the feeling of despair and helplessness. It was so hard to see my strong, capaple Dad feeling vulnerable.
Your Mum will find be OK, I thought my Mum would never cope with what she did. She has you by her side which I am sure both your Mum and Dad are grateful for.
Fingers crossed the PDT is approved.
Katie
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
Hi Andie, I just saw your post. First of all if his tumor is under 7cm that is good. Next, to implant the seeds/rods they do not do it from the inside. It is like a Scan that guides them and its 4 tiny gold rods that are shot in. They give you a local anesthetic and you feel nothing. Its just sore for a day or two. The rods remain there forever, no harm to anything. Blocked bile ducts have nothing to do with it. BUT, they must be able to see the tumor clearly.
For ringing phones, I advised everyone that I would send out updates which I do. I am not a phone person to begin with and they are all respecting this plus the fact Teddy is sleeping so much.
I know what you mean about just sleeping it away. I have read so much and heard so much about all the things that can happen with CC towards the end but so far its just sleeping. I too am praying he just goes to sleep. He sleeps all day now except to eat a little something. But then he is up pretty much from about 5PM – 9PM. He is weaker and shakier and is shuffling his feet. Blood pressure now sits around 100/50 which I assume means the body is starting to wind down and is tired of the fight! This is so not Teddy, that I wish for him it was over. But we have to stay strong and have up attitudes especially around them. The biggest give away is in his eyes. There is no more sparkle and I am starting to miss the looks he always gave me. But we shall hang in there and laugh and make the best of these ‘Precious Times’. I even had an urge the other day to write a poem about him but can’t bring myself to share it just yet.
Hang in kid, we are in this thing together.Andie,
I’m so sorry to hear this news. My heart is breaking for you, especially your dad apologising.
I’m just really hoping against hope that there will be a radiation treatment that can help your dad, and that your mum can gain some strength from you. Keep trying to create those happy memories. Remember there are many people who exceed their prognoses and your dad feeling well is such a bonus for him.
Love to you and your dad
KateLainy,
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
Andie, we are so sorry to hear about your turn of events. Teddy had Cyberknife and I know the tumor has to be under 7cm and that there can be only one tumor
to deal with, its worth a try.
Your dad like Teddy does not want anyone to cry in front of him. Teddy steels his mind for what has to be and he is so afraid if we cry it will weaken that steel. I also feel he thinks he is failing me if I cry. Soooooo, I get in the car turn on the radio and let it go. Sad to say not very often but it does help. I had a good one last week. Got in the car to go to the store and turned the radio on and the first song I hear is our song. Got in the car to come home and the first song was the one we walked down the aisle to 16 years ago. Freaky!!!
Sending you love and many hugs!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%
Andie and Pam….My heart is with you and your family in this difficult time.
Here is a tidal wave of love coming your way,
MarionAndrea, you may not have to act on these medications now but in addition to the cipro to prevent infection, my dad has taken lactulose to bind bile and help him go to the bathroom plus hydroxyzine and cholestyramine for itching. Hope his helps.
Andrea,
I am so sorry to hear of this latest development for your dad. I wish that there was something that I could say that would help. I do know what that numb feeling feels like though, I felt that last year when my dad was told no to chemo.
I take it that your dads Macmillan nurse will be calling round to visit your dad now that he is back home? My dad had a Mac nurse from when he was diagnosed and she was a great help to us all. She came out to visit dad frequently when he was home and would come see him if dad phoned her in the morning, nothing was too much triuble for her.
Once again Andrea, I am sorry to hear this news and my thoughts are with you and your dad right now. We are all here for you.
Gavin
I’m so sorry to hear this news about your Dad. I know exactly where you are. My dad’s stent can not be changed either. The last one he had placed was July 2nd. It lasted until about two weeks ago and now he is completely jaundice. His eyes and skin are bright yellow. He has a lot of confusion, too. His oncologist kept him on ciprofloxacin 750mg twice a day. This has saved him from massive infection at this point. I fear, however, he will soon be in trouble as organs begin to fail. We are managing his pain with a patch and morphine for breakthrough pain. He has not been sick to his stomach.
It is so hard to hear those words that nothing else can be done. For our family,
he has only been diagnosed since May. The best advice I’ve been given on this board is to just love him. My dad has a dry humor, so that helps. He is also a charmer when he wants something. We also go through grouchy times. Friends also to take one day at a time. I try to do that so things don’t become too overwhelming.Again, sorry to hear about your bad news. Hope you get some rest.
I am in shock, all my hope has been thrown out the window. Dads external drain is not working and the tumor has grown over the stents so they can’t re stent. Basically no chemo will be given, can’t do PDT because stents not working, no other options available.
I have just brought Dad home from hospital as he wanted to come home. We went to visit him and in the room with him was the Macmillan nurse waiting to see us. They have said 3-4 months max.
I’m just numb.
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