andie
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Thank you all,
Marion,
Thank you for your kind words. Reading so many posts I do think perhaps this cancer was always going to get the better of Dad, whatever way we went. I can take some relief in that he didn’t have to go through a major operation for us to have been told it had not worked. Dad has battled colon cancer most his life and had enough major operations to last him a life time. He enjoyed the visit to Leeds, and managed the journey really well. So well in fact that he as said he would like to start going out and about as it made him feel better. He has also agreed to have the Macmillan Nurses in, so not all bad came out of the visit.Lainy,
I will tell my Dad to look out for the Italian Restaurant and the seat with his name on, it is a comfort to think he will no longer be suffering emotionally but will be in a better place with old friends and new.Gavin,
Dads DN will organise the Macmillan Nurses on Monday when they next visit. To be fair they have asked him every week if he wants to be referred but he has said no, mainly as he sees it has being final. Professor Lodge told him we need support and they are not just for pain relief. As Dad isn’t in any pain he didn’t think they would come, I had told him that they didn’t only come for pain relief, but hearing it from Professor Lodge changed his mind.Jemima,
I couldn’t praise Professor Lodge and his team any higher, they are amazing and really put our local NHS hospitals to shame. Professor lodge went out of his way in all aspects. Can you believe Dad had a consultation, CTscan and results in the same day. If you want the details to get in touch just email me. The hospital has accomodation for you to stay in if you have to travel. Dads room was free as he was a patient, so we only had to pay for mine which wasHi Jen,
Thinking of your today, hope you manage to get your Dads pain relief under control.
I too am so glad we have got each other, Lainy and the wonderful people on this site.
Sending love and hugs
Andrea x
My Dearest Lainy,
As always you and Teddy are both in my thoughts and prayers.
Mom and Dad have finally agreed to the Macmillan Nurses, mainly for support at the moment. When then time comes though they have agreed Dad will go into hospice care. I’m hoping my Mom will find the strength that you have found in caring for Teddy. The next few weeks are going to be hard but at the same time very special for all of us.
Hope Teddy has another peaceful night, and you too manage to get some sleep.
Take care of yourself,
Love and hugs
Andrea
Dear Jen,
So sorry to read this, I hope your Dad agrees to let the nurses come to visit, not only for your Dad but also your Mom. My Dad has finally agreed to let the Macmillan nurses come in, at the moment he’s in no pain but they need the emotional support.
I can’t imagine how heartbreaking it must be to see your Dad in pain, this is what is worrying me the most. Could you phone and get the appointment brought forward?
Stay strong, sending big hugs and love your way
Andrea x
Hi Robin,
Thank you for sharing your photos with us. They are wonderful, just like your parents. I loved Teddys jumper!
Best wishes
Andrea
Hi Chelle,
I can understand your frustration. The not knowing is the worst. I’m an only child, my Mom doesn’t drive so I had to do 5 weeks of hospital visits, not that I minded. The hardest part was trying to keep things normal for my 9 year old son, but we did, you do find the strength to keep going.
Our hospital was terrible, Dads procedures kept being cancelled, which meant he was often nil by mouth for procedures that never happened, and nothing got done at weekends or bank holidays. This effected everyones stress levels. Once he was diagnosed with CC things did move quickly. He was sent to the Liver hospital and his stent was fitted. He was home 5 days after his first stent procedure.
I’m not 100% sure about gallbladder removal, my friend was in a few days but it took a few months for her to recover. They did it with key hole surgery.
I’m sure if they suspect infection they will act fast with antibiotics. My Dad developed a bad infection after his second stent was added. He had a very high temp and was sweating alot, so much you could have rung his pjs out. They treated it first with normal antibiotics but when it wasn’t working they gave him IV antibiotics and they got the infection undercontrol. You will tell if your Mom has got infection, shivers and chills are another sign.
I’d write your questions down and next time you go ask the doctor to answer them.
Get your Mom to drink LOTS, this helps.
Hopefully your hospital is more on the ball.
Good luck
Hi Chelle,
With my Dad the CT scan took a few days to get the results. The ERCP results were instant though, and if they can feel your Mom needs a stent fitted they can sometimes do it via the ERCP procedure. They may be able to remove cysts too. They were unable to do my Dads via the ERCP but from this they could tell the blockage was suspicious ie a tumor. This was then confirmed by the CT scan. Then they inserted his stent with the PTC procedure which is done by going directly through the skin into the liver.
My Dad has handled both procedures well.
I don’t know if things are the same in your hospitals but we never seemed to get much information during weekends and CT scans weren’t done either. Hopefully this won’t be the case for your Mom.
On admission Dads bilirubin levels were in the 300s, and 600 before stent was fitted. He was in hospital 5 weeks having various u/s, CT scans, ERCP, PTC. During this time he had to be moved to our specialist Liver Hospital to have his stent fitted via PTC.
Have they started your Mom on any antibiotics? My Dad had IV antibiotics when he was admitted.
Good Luck
Hi
Your Mom is in the best place. The proper action can now be taken. Your Moms ducts will be inflammed because of the blockage. The bile isn’t flowing as it should, it is backing up into the liver, hence high bilirubin level. This puts pressure on the ducts in the liver (intrahepatic are ducts in the liver, extrahepatic are out the liver)
Hopefully a CT scan will be done asap, then from that they will be able to have a more clearer picture. You mentioned a cyst, I suspect they will operate and remove the cyst and gallbladder. Once this has been removed then the bile will flow again.
If they do think it’s CC, I think they will put a stent in and this will help the bile to flow.
I’m hoping it’s a cyst but just to be prepared I would start writing down questions you want to ask the Doctor. From experience minds can go blank when the men in white coats appear. With questions at the ready you can get your answers quicker. I’d also start finding names of Doctors with CC experience. If you type it in the CC search engine you will find a list.
Hope it all goes ok.
Thinking of you
Andrea
Dearest Lainy,
I’m sorry I can’t offer any help but I just want you to know I am thinking of both you and Teddy.
Sending lots of love and prayers your way.
Andrea
Hi Molly,
From experience with Dad the doctors should be taking blood each day to check the bilirubin levels. On each occasion Dads went up a few days after the procedure due to inflammation but once this had settled down it did fall quiet quickly. His jaundice though seemed to take forever to fade but his bilirubin was in the 400s. I’m sorry i can’t help with the itching as Dad never had any.
It did take Dad a while to recover from his first stent procedure but he had been in hospital 5 weeks, so I think that added to it.
Is your Mom eating? My Dad had to have ensure/fortijuice drinks after his stent procedures as it took a while for him to get his appetite back.
Has your Mom got a external drain in? My Dad had these in after his stents were put in. They were removed a few days later once they knew the bile was flowing. On one occasion when it wasn’t going down they took him back down to have a cholangiogram. This is were they put a dye through and check if the bile is flowing, as sometimes stents can migrate. When your Mom has her drain removed ask for painkillers before they take it out as it can be quiet sore afterwards.
Tell your Mom to drink alot. This helps flush the bile out of the body. dad drinks 2-3 litres a day and I do think this has helped. My Dad also has hot water and fresh lemon juice every morning and night. I’ve read it helps thin the bile.
If you have any more questions please ask, and if I can’t help you I’m sure someone else will be able to.
Best wishes
Andrea
Hi MollyB,
I can 100% understand how you are feeling right night, but finding the people on this site will be a great help to you.
My Dad never really itched much with his jaundice, still doesn’t, which is odd really considering most people do. Have you asked the Doctors for anything to help with it?
How high is your Moms bilirubin level? I know Dad needed to get to 50 before they would do chemo. Once the metal stent is in it should start dropping daily, but don’t be alarmed if it rises or stays the same for a day or two. This happened to my Dad each time he had his stent fitted (he’s got 3) and was caused by imflammation after the stent procedure.
I would get second opinions asap, my Dad was happy with the chemo route after being told he was inoperable but he was never able to have it due to his bilirubin levels never falling to 50. If I could go back in time I would have pushed him to seek more opinions. We have been told now that looking at my dads august scan another doctor may have assessed him for surgery, that’s where we are going on Monday.
Also try the http://www.AMMF.org.uk site, it is the UK cholangiocarcinoma site, and there are links and advice on who to contact on there too.
Keeping everything crossed for you and never give up.
Best wishes
Andrea
Hi Chelle,
Sorry I read your message wrong regarding scans. But I’m still sure they wouldn’t commit thereslves to saying it was a cyst. When I was researching Dads symptoms and scans, I’m sure tumors give off different rays on ultrasound scans. When my Dad had his u/s they just said they didn’t know and a CT scan was needed,
Hoping for a speedy scan.
Best wishes
Andrea
Hi Chelle,
That sounds promising, they wouldn’t commit to saying it’s a cyst if they wasn’t sure, and I’m sure they can tell the difference between a tumor and cyst on CT scan.
Have they scheduled your Mom for surgery? If the cyst is blocking the gallbladder sludge will continue to back up and this is what is probably making your Mom feel unwell. This was happening to my friend and they acted quick as there was a risk of infection spreading. My friends was caused by a stone in the duct though.
Have they put your Mom on antibiotics? My friend was admitted to hospital for IV antibiotics and then allowed to return home whilst waiting for a bed for the gallbladder operation. (good old NHS and bed shortages!)
Hope you get some answers soon.
Best wishes to you and your Mom,
Andrea
Thanks all.
I keep telling myself that there wasn’t any change between earlier scans, but I’m just so scared it’s going to be a “sorry we can’t do anything”. For the moment I’m holding on to the bit of hope we’ve got, as I’m sure Prof Lodge wouldn’t want to see Dad if there wasn’t a bit of hope.
As for the NHS and second opinions, I agree. Sometimes certain Doctors need to realise there may be other Doctors better. If it wasn’t for this site I would never have heard of Prof Lodge! and so far he seems in such a different league to most, when he couldn’t get the right scans he requested the CT scan himself! how kind. And only waiting a week to see him is also impressive.
Will keep you updated
Love to all
Hi Mamamia,
Welcome to our cc family and in no way are you intruding. I do really hope though that you don’t have to keep returning
I can understand what you are going through, the not knowing is one of the worst feelings in the world.
My Dad was diagnosed in April after 2 months of painless jaundice, this was his only symptom.
Where do you live? I am in the UK and the CT scan results were back quickly, but Dad was in hospital at the time has his jaundice was really bad. They were suprised he had no other symptoms.
Has your Doctor mentioned cc, or have you reached this opinion from internet search?
Please try and stay strong and positive. My friend had similar symptoms to your Mom and she had a stone in her duct, that wasn’t picked up on the ultrasound, she had to have her gallbladder removed.
Thinking of you and your Mom
Andrea
