andie
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I agrees with Patty, news like yours is very welcome.
My Dad has extrahepatic cc, he is very badly jaudiced and was given 3-4 months Sept after being told no further stents could be fitted. He is doing amazingly well considering and I pray everyday it continues. He too is pain free and is still eating, he doesn’t itch, hasn’t got pale stools, he isn’t ticking all the boxes he should. I like to think like Lainys Teddy, he is a miracle man. Also dad was told in Apri when diagnosedl he had 2 months max without treatment, Dad never had treatment due to high bilirubin and he’s still here. No one has an expiry date stamped on them, doctors aren’t God.
My friend died last Friday, out of the blue with a bleed on the brain, you really need to live a day at a time and not worry about the future. I know it’s hard but life really is too short to be worrying about the what ifs and whens.
Best wishes
Andrea
Hi Chelle,
They discussed my Dads case when he was in hospital so he didn’t wait long, think it was the next day BUT when he had bowel cancer and wasn’t in hospital like Jemima said, he was given an appointment to see the consultant a week later.
Glad your Mom isn’t in no pain and you’ve been able to spend time with her at home.
Good luck and best wishes
Andrea
Lainy,
I told Mom and Dad about your experience and Dad said “don’t you worry I’ll be in touch as soon as I get there” .
Mom said when her Dad passed she kept smelling his aftershave and also her bedroom light would dim when she was reading in bed. When my Uncle died a few months later my Aunties mobile rang and it came up with his mobile number. My Uncles mobile had been switched off before he died.
You posted a poem once called “letter from Heaven”. I love this and have decided I would like it read out at Dads funeral. Hopefully we have many months left together yet but I truly think it’s a wonderful poem.
Thank you so much for sharing your cherished memories with us. Teddy will always have a special place in our CC familys heart, as will you and you Mom.
The support they have given me throughout the past several months will never be forgotten, they are two very special people who we have all grown to love.
Take care
Love and hugs
Andrea x
Dearest Lainy,
Teddy will always be with you but last night was definately his way of saying he’d arrived at the next part of his journey ok. As we have mentioned before he will sitting in his Italian Restaurant will new friends and old, but with always an eye on you and your family.
Since Dad was diagnosed I have been reading books about the afterlife and I have found much comfort in them.
When my Grandad died my Nans TV kept switching on and off, he’d always liked his own way with the TV and we laugh and say this was his way of saying I’m still in control of the TV, I’m still with you.
Sending you lots of love and a big hug
Andrea x
Thank you all for your advice.
Sunshinecaregiver
The weather at the moment is too bad and cold to take Dad anywhere but if it does warm up them we will definately be taking him out.He has perked up the last few days, enjoying his food and wanting to do odd jobs around the house. He spoke to his old boss today and he is coming to visit Dad friday, he did ask Dad if it was ok and Dad said yes. Think it will do him good to have a chat with an old work friend.
Dad seems to be tired about 9.30am after hes’ been up a few hours, he will have half hour nap and then feels like his energy has been revived again. Visitors will have to come after dinner has this is when he’s at his best.
It’s his 63rd birthday saturday, something we didn’t think he’d see back in April. He hasn’t seem to have got much worse since we were told he had 3-4 months in September. He has lost a little weight and is more yellow but apart from that he is doing really well. The Macmillan Nurses have phoned today but he has refused their help at the moment but has taken their number incase he changes his mind. Last week he was going to allow them to come in but he has changed his mind again, said he doesn’t feel ill so they could be helping someone else.
Hopefully we will have a good Christmas together
Dearest Lainy,
My thoughts, love and prayers are with you and your family.
Teddy will always have a special place in our cc familys hearts. I’m sure he’s watching down on you all from the Italian Restaurant in the sky with a big smile on his face, he will be so proud of you, Robin and your family. You have been amazing throughout your journey, always offering words of comfort, support and advice to others.
Memories do certainly last forever, and you have many wonderful times to remember. I hope these bring comfort to you and your family along with knowing Teddy is now at peace.
Lainy, we love you too and we couldn’t be without you either.
Much love
Andrea x
Thank you everyone for your advice and kind words
Mom said Dad seems a bit brighter in mood today, I haven’t been to see him as my son is off school ill but I have spoken to him and he seemed in good spirits. It is his birthday Saturday so visitors will be going to see him but he says that’s ok. I think he has more of a problem with people who he hasn’t seen for years coming to visit, he seems ok with close family and friends. We are going to have to learn to take it a day at a time, which is hard for us all as we have always like to plan!
He doesn’t want the Christmas tree up at the moment, said it’s too much trouble to get up the loft for it and all the decorations. I think Mom would like it up and I have told her my husband will happily go up the loft and get it. Hopefully he will change his mind. We don’t want to push anything onto him at the moment as his emotions do seem to be up and down, which is to be expected.
Jen, How are your Dad and nephew? Thinking of you too x
Love to all
Andrea
Hi Chelle,
So glad your Mom was able to have a weekend pass, that must have been lovely for you all. I know from experience how tiring and depressing long hospital stays can be.
I’m not sure about the whipple surgery, but I’m sure someone else will be along to advise.
Chemo may only be an option if the biirubin level is down low enough. This is what stopped my Dad having chemo, his bilirubin never stabalised enough. Our oncologist would only give it if the bilirubin was 50 as it can do more harm than good as the liver can’t cope with the toxins.
I feel that I have to keep strong for my parents, luckily my husband is wondeful and he has to deal with the brunt of my emotions.
Hoping that you have some more answers soon.
Best wishes to you and your family
Andrea
Dearest Lainy,
I am so sorry to read your post. I pray that tomorrow is a much better day, that Teddys pain is under control and Mama Bear gets everthing sorted out.
Keep strong
Much love
Andrea x
Thank you both,
Michelle, I think it may be best for visitors to be kept to family and close friends who have shared our journey since april. Old friends, well perhaps a phone call may be better for dad, as you say it is morbid to think they are visiting only because time may be limited. Hopefully he will have many months yet, as tiredness is all he is feeling at the moment, no pain luckily.
Lainy, I think Mom may have to put time limits on visits, our family can talk for England and I know my Aunt stayed over 2 hours the other day, along with her sister and 4 year old son, Dad was exhausted after the visit. I think we will take it day by day, hopefully tomorrow will be better. I hope Teddy is settling into hospice, I bet all the nurses are loving him, he sounds such a special man. You take care too.
Best wishes
Andrea
slittle1127 wrote:Your loving Teddy will always be yours and right now someone else can take over the caregiving and you be his love, his wife, his life.Dear Lainy
Susan has taken the words out of my mouth and I’m 100% sure the nurses will love Teddy as much as we all do, he is such a special man.
Thinking of you
Hugs and Love
Andrea
Dear Chelle,
You will experience emotions you never knew you had. For me I can only explain it as a roolercoaster ride, ups and downs. Hopefully you will have more ups.
Looking back over the past months since Dad started having symptoms in February I really don’t know how I’ve coped but I have. I have learnt with the help of family, friends and the wonderful people on here that it is out of my control and to take things day by day. Yes some mornings i don’t want to get out of bed, scared what the day is going to bring, but I have a 9 year old who needs me, a family that need me, and whatever I’m going through Dad is going through much worse and he is still getting up on a morning.
Children handle it much better than adults. My Dad has been yellow now since February and the hospital visits have taken up most of our year but to my son this is now normal. When the time comes when Dad is in his final days then we will deal with telling our son but for the time being we feel he doesn’t need to know but that is our decision. He knows Grandad has a problem with his liver and that is making him yellow, he knows he won’t be having his special medicine (chemo) now because the doctors have said it won’t work but he also knows he’s still Grandad, still needs our love and still can play cards and make lego!
Sending you much love
Keep strong
Andrea
Hi Chelle,
So sorry the news wasn’t what we wanted to hear BUT you are in the best place for advice.
Your Mom will start to feel much better now the bile is draining, it’s a good sign that the stools are darker. The itching should stop too, as for the yellow in the skin and eyes, this can take weeks so don’t be alarmed when it doesn’t go over night.
The doctors should be taking blood and checking bilirubin levels everyday to check the stent is working. Once they are happy it is your Mom will be let home.
If your Mom is willing to I would contact another hospital more experienced with CC as they may be willing to operate. We tried Professor Lodge in Leeds and he was lovely and has an aggressive approach to CC, for us it was too late but it may be an option for your Mom.
For chemo to start your Moms bilirubin will need to be 50. You could ask if there are also any clinical trials your Mom could go on, again if your Mom is willing to. I know there was the ABC03 trial that should be starting the end of this year. Also radiation may be an option to.
Like Gavin said, we are here for you and whatever questions you have, ask away, we are here to help you.
Keep strong
Andrea
