andie
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Thanks Gavin.
Just been to see dad and he’s put on 3Ib since saturday!! He’s had his hair cut and apart from his yellowness he is looking alot brighter.
Yes it is a lady from the benefits office who will be coming down to help Dad sort his claim out. Dad hasn’t been offered the services of a macmillan nurse yet, perhaps that will change when he starts his chemo.
Take care
Hi Gavin
I think he will only be on the Ensure for a month or two. His appetite is as it has always been but because of my Dads previous history with Colon Cancer it takes him a while to put weight back on, so hopefully the extra calories in the drinks will help him.
We have a lady coming to visit him to sort out his benefits as he has decided to leave work. He keeps using the word ‘terminal’ which is upsetting to hear but he still has his fighting spirit.
Some days I feel like I can’t be strong anymore and just want to have a good cry. I think once his yellowness has gone it won’t be so bad. We have booked an hol to Florida next May and I keep having moments thinking should I cancel it incase I’m needed here, then I keep thinking will Dad still be here. My husband said we will worry about that nearer the time and if my Dad knew what I was thinking he’d go mad. Suppose we all have our bad days.
Oh well better get some house work done!
Best Wishes
Thank you both, I will speak to Dads Doctor first.
Gavin, my Dad has been prescribed Ensure Juce drinks. He had a walk down the paper shop yesterday, the first time since he came out of hospital Friday and I must say he looked better after having some fresh air on him. His appetite is still big, Mom said she will need an extra benefit just to feed him lol!
Thank you both for your advice.
Best wishes
After having a down day today I am so glad I found this post!!! I have printed it off to show my Dad.
Thank you for sharing your story and giving us hope.
Best wishes
Thanks for going into detail about what to expect stent and jaundice wise, i can pass the info on to Mom as she has been worried too. Lack of patience runs in the family!!
My Dad isn’t on any antibiotics, He had a temp the day after the stent was put in but after that he was fine. I might mention this to his doctor though.
Thanks again for the info.
Hope your Dad is still going to go on his trip to Hungary.
I know what you mean about losing OUR hair when they are on Chemo too!!
Take care
Hi Dianne, My Dad is 62. He came out of hospital Friday after having his metal stent fitted on the 19 April. He still looks yellow which is a worry, I keep thinking the stent is not working but the hospital checked his levels before he came out and apart from a blip on the one day where it went up it has been falling between 20 – 40 per day. I suppose I just need to be more patient! He has got to have a EUS and biopsy in a few weeks time when his levels are ok and then he can start Chemo.
Since coming out of hospital he has been catching up on 5 weeks worth of lost sleep. He is also eating and drinking alot too, which is nice to see.
We all have a rollercoast ride ahead of us but with all the love and support we will ride it out together. My Dad had Colon cancer 9 years ago and beat that, hopefully he will beat this too. If anyone is detemined to its my Dad.
Best wishes to you and your family
Hi Jemima, first of all welcome to this site, My Dad too has just been diagnosed with CC and like you said I have had to find out a lot of info about it on the internet, this site has been a blessing and given me much comfort when I have been feeling down.
What hospital is you Mom being treated at? My Dad went into RHH Dudley on 22 March with obstructive jaundice, no pain. After many CT scans, unsuccessful ERCP and PCT he was told he had inoperable CC and had months to live. A few days later he was transferred to QE Bham where he was told whilst they couldn’t operate they could help prolong his life with Chemo, he underwent a successful metal stent via PCT on 20 April, after a few blips with the stent he is now home. He has to have a EUS in a few weeks and then start Chemo as long as his Bilirubin level in 50 or below.
My Dads is extrahepatic and whilst small it is unoperable due to it’s position.They told us they couldn’t actual stage it until a biopsy was taken, my Dad will have this done when he has his EUS.
Has your Mom got a Clinical Nurse Specialist? My Dad has got a lady called Catherine Markham at the QE who we can ring anytime. She has been very helpful regarding Dads progress and treatment.
Is your Moms Bilirubin Level back to normal and is her Jaundice gone? Only from what i can make out they can’t do any treatment until this is sorted out.
I too feel useless and that things are not getting sorted out quick enough, i like to plan and are learning the hard way that my Dads condition is out of my hands and we are going to have to take each day a step at a time. Sometimes we seem to be going one step forward and two steps back.
Wishing you and your Mom all the best
Katja wrote:I’ve just remembered your earlier post about other surgeons/oncologists. We could not fault the treatment at St James in Leeds. Prof Lodge is (I believe) the head of the HPB (Hepatico-Pancreatic-Biliary or something…) team and mainly does liver transplants. Mr Menon and Mr Smith both come really highly recommended for bile duct/pancreatic surgery. Mr Menon’s whipple on my dad has been absolutely perfect so far.My Dads CC is extrahepatic and inoperable due to the position, I think the specialist mentioned artery/veins? So Chemo is his only option. 2 weeks ago we were told they couldn’t do any treatment by his first hospital but the QE Bham have said that they can offer Chemo, a few years compared to months is everything to us and hopefully other treatments may become available within those months.
Gavin, My Dad isn’t itching anymore so I take that as a good sign.
Best wishes and good luck to you both and your families
Thank you for all your comments, I have passed them onto my Mom and I think she feels a bit better now knowing other people out there have been jaundiced for a while too. I think she was expecting him to turn back white over night. Once his eyes return white I think she will be happier.
He is in no pain today from having his external drain out and he is eating and drinking lots.
Lainy, my Mom has said the same, yellow is not my Dads colour
Katja, I have read your other posts, congratulations on the birth of your son and I hope your Dad is still doing well with his Chemo. My son was born when my Dad had colon cancer 9 years ago, he kicked that cancer into touch and im sure it was down to having a new grandchild to see grow up, I’m sure both our dads are fighters and will kick this cancer too!
Dad is finally out after 5 weeks in hospital. He had a slight blip with his bile level which went from 276 to 277 the next day but then it fell to 258 and is now 218. My Mom is upset that he still looks very yellow and also his eyes are still yellow. I think that it has hit her that my dad is ill now that he is at home.
I’ve told my mom that it will probably take a few weks for his colour to go back to normal, can anyone tell me how long on average it takes for the eyes to return to white?
slester wrote:I recently had my first CT scan after chemo. Everything is stable. No new spread or mets but no shrinkage. I guess this is a victory of sorts. Still undergoing the clinical meds and gemzar.That’s great news. My dad has just been diagnosed with CC and will be starting Chemo once his bile level is at the correct level. The specialist told us that if the tumor stayed the same then that was great as the treatment was working, shrinkage was a bonus but the goal was for it to stay stable.
All the best for the future
Gavin wrote:I forgot to ask Andie, was your dad offered the services of a Macmillan nurse for when he gets home?Gavin
No my Dad hasn’t been offered the services of a Macmillan nurse. We had a leaflet on benefits in his discharge pack which was by the Macmillan nurses, a note to his GP describing his condition and treatment. He is due to have a EUS and biopsy in 3 weeks time. Perhaps then they may introduce a Macmillan nurse.
It’s lovely to have him home but for the first time he is pain. He said this is from where they have taken his external drain out today. I hope this doesn’t last long. Though he still ate 2 rounds of cheese on toast within seconds!
It seems to be one step forward, two steps back. Dad had his metal stent in Minday and whilst initially it was working and his bilirubin levels were falling, they have now stopped! He has got to have an x-ray tomorrow to find out why.
Feel so helpless as he really wants to get home and also start his Chemo, which until his level is 50 he can’t.
He is still feeling well, no pain, itching and still eating lots. Which I am counting as a blessing.
He has made a friend in hospital who also has CC so they have been sharing their progress together.
Thanks for listening
DianneH wrote:Regardless of tumour growth, since Dad has had the metal stent in, most of his natural colour has returned, and his appetite has gotten better, closer to normal (he’s eating everything on his plate). I know this could still be the honeymoon stage, but I know what I’m seeing!Dianne
How long did it take for your Dad to not be so jaundiced after his stent was fitted?
Our first doctor told us that my Dad had months to live as his tumor was inoperable, we have now been offered Gemcitabine and Cisplatin, which is considered to be the standard treatment for advanced cancer according to Cancer UK. Just need to get his bilirubin levels to 50 first.
Hope your Dad enjoys his visit to Hungary. Wishing you and your family all the best for the future.
DianneH wrote:Is the new stent metal? I don’t recall you mentioning if it’s plastic or metal.Dianne
My Dad has had a metal one fitted. His first one was metal too, so he now has two. He also had an external drain Monday after they fitted his stent but they have capped it off now. He is feeling fine in himself, no pain, no itching, a good appetitie which he has never lost. We need his levels to fall to 50 so Chemo can start. 3 weeks ago it was 600, Sunday it was in the 400s and on the Tuesday it was 276 but I think it has slowed down completely now. Hopefully the Xray will give us some answers tomorrow.
