andie
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Hi Jemima,
Sorry to hear that surgery is a no go at the moment but hopefully that may change once your Mom has had Chemo. At least now you are no longer in limbo and can focus on the Chemo starting.
Is your Mom having Gem/Cis? I’ve started my Dad on Omega 3 1000mg super strength from boots, as I’ve read that it can help with the Cisplatin. My Dad was also told to take Ciproflaxin(sp) antibiotic to help keep bile duct infections at bay whilst on Chemo. Hopefully my Dad will start Chemo soon, he had a rough time with his last stent change and ended up with a bad bacterial infection. We have an appointment to start Chemo w/c 2 August but I don’t think his bilirubin will be down enough now. In a way he needs to build himself back up in time for the chemo as being in hospital as resulted in weight loss again.
Have a lovely holiday in France, it will do you all good to have a break.
Best wishes
Thank you all, I have been in touch with the Doctor on the ward and she has explained it to me. Basically on examination they thought the ducts were going to the right stent were infact they were going to the left. My mind was working overtime again!!
Dad is coming home today! The antibiotics have kicked in, the bilirubin has started to drop and he’s not constipated anymore, so hopefully things are looking up.
He’s got to go back next Friday for a check up and to have his bloods done. They have capped his drain off but are not going to remove it until next friday depending on his blood results.
Best wishes to everyone
Dad is still in hospital. They started him on some stronger antibiotics which seem to have helped whatever infection he is fighting. They have sent his blood and bile to be cultured but they are hoping these strong antibiotics given direct in the vien will do the trick. His temp has been normal the last 24 hours and he doesn’t seem to be sweating as much. The only problem is they have made him very constipated and he is suffering from trapped wind, so much that he actually thought he was having a heart attack Saturday night and had to buzz the nurses, something my dad would only do if he was in extreme pain. They have given him some peppermint water and some tablets to try and help but it’s not doing the trick at the moment. My Dad has an illestomy bag through having colon cancer so I’m not sure if this is causing it to be worse.
The good news is that they sent him back down to theatre to put a dye through the stent and everything was working fine so hopefully when they cap the drain of today and take his blood for bilirubin it will have fallen,
He is getting very fed up and the 3 day max stay for his stent replacement is now looking at least another 4 days. This now means his chemo will have to be put back yet again. The other good news is that it hasn’t grown when they compared his xrays from his last scan taken when they put the stents in.
Thanks Marion, I just want to get off the rollercaoster now though!
Dad has had his external drain put back on. His bile levels haven’t changed so they are hoping putting the drain back on will help. They said it’s probably due to infection.
Has this happened to anyone else and if so did they managed to cap the drain off again?
They said Dads bile is very thick. Does anyone know of any way we could make it thinner?
They have also told Dad to eat salted food due to his thick bile, not sure why?
Our main concern is staring chemo, if this continues he will never be able to start it
I hate stents!!!!!
Dads temperature has gone back up and so has his bilirubin levels. When I visited him today he looked very clammy but said he felt ok. He phoned tonight to say that he has got an infection and they have given him a high dose antibiotic. His blood test showed his bilirubin had gone up but they are hoping it’s due to inflammation caused by the stenting and also once the antibiotics start to work they hope his bilirubin levels will fall. They are taking his blood again in the morning. If they haven’t come down Dad said they will open up his external drain again but if it shows it’s going down he may be able to come home. I’d rather he stay in until they know it is falling continously.
Nothing seems to be going to plan, his bilirubin is higher than ever and at this rate it won’t fall enough to start chemo at the ens of the month. i feel like crying.
Hi Andy,
Thanks for sharing your wonderful news. My Dad was diagnosed in April with inoperable CC due to location and is being treated at the QE in Birmingham, is this where you were treated? My Dad is under Dr Bramhall. He was due to start Gem/Cis last month but his metal stents decided to block making his bilirubin too high. He is currently in the QE after having his stents unblocked and extended. Your story sounds very much like my Dads in regard to tumour location and size. I really hope my dad responds to the treatment like you did. Reading your story as given me hope and I’m going to show it to my Mom and Dad.
Could you tell me what supplements you take and did you take them whilst on Chemo? My dad takes Omega 3 at the moment and has started drinking hot water and lemon as we read it was a natural bile thinner.
Look forward to hearing from you
Best wishes to you and your family
Thanks all,
Gavin, I understand what you are saying and that sounds just like what they have done. I was just a bit surprised as was expecting a plastic tube to have been inserted has I have never read of this being done.
Dad had a bit of a temp last night but it’s ok now. He seemed fine in himself just wants to get home.
Fingers crossed this stent behaves!
Thanks all.
Dad seems to be doing ok, haven’t seen him yet to talk to as when we went last night he was asleep so we didn’t wake him as he hadn’t had much sleep the night before. He text me this morning to say everything had gone well and doctors were pleased. They have capped the external drain off and as long as his bilirubin continues to fall he may be home tomorrow.
Just getting ready to go and visit him now.
Best wished
Hi All,
Just getting ready to take Dad to hospital. He phoned this morning at 11 and they said at the moment we don’t have one phone back later. After what has been a very long day they have now have one and it’s at the hospital he wanted. I’ve never known my dad so happy to be going to hospital.
My son (age 9) has been so good, I was supposed to go and look at his school work tonight but only my husband is going to go now. He said “Mom don’t worry, Grandad is much more important, I will keep up the good work so you can see it next time” He had a lovely school report and I’m so proud of him. I know how important these things are to kids and it’s the first one I’ve missed.
Fingers crossed the unblocking of the stent goes ok tomorrow.
Best wishes
Thanks Gavin
That has helped clear things up for my Mom. She had a bad day yesterday, bumped into a few people who where asking too many questions, some she couldn’t answer.
Best Wishes
Jtoro wrote:Kris,
I am seeing a counselor once a week and am on depression and anxiety medication. I know in my heart I did not cause this, but I am not able to stop looking back. I realize I need to fight this disease and go on with my life. Trying to get out each day and enjoy things. My daughter is teaching me to crochet today. Then we are off to a walk
at the beach when my husband gets home. My physcologist tells me to put what’s ahead out of my mind and each today. She said it’s always going to ge there, but push it out of your brain.We must have been posting at the same time. I am glad you have been spending time with your family today and also speaking to a counselor. It seems like your fighting spirit is starting to break through
Best wishes
Jtoro,
I agree with Kris, you really need to stop blaming yourself. I know I’m not going through this personally but my Dad is and it would tear me apart if he was blaming himself. I know it’s hard, the first thing my Dad said to me was “sorry”, to hear him say that tore my heart apart. We had a good long talk, where I told him he had nothing to be sorry about and we would fight this together, and that’s what we are doing. Our positive attitudes help.
My Dad was having yearly blood tests for his previous colon cancer, he had this the few days before he became jaundice and the results for these and his FBC were fine. All the time he went to the doctors they said it wasn’t cancer, 99% gallstones but because the stones weren’t showing on an ultrasound they were probably blocking the duct and to keep drinking lots. This carried on for 3 weeks until he was admitted as his bilirubin was getting higher. He had more Ultrasounds in hospital, then failed ERCP, when the ERCP was unsuccessful they said it was scar tissue he then had a PCT and this is when they thought something was wrong. Another CT scan showed up a 1.8cm shadow that they still thought was scar tissue, and were discussing what the next step would be, probably surgery. It took another hospital to diagnose CC, this goes to show this is not straight forward. We went through a period of blame, why didn’t they know, surely scar tissue looks different to cancer, if they had diagnosed it sooner he could be treated sooner, have more of a chance. But then we realised what’s done is done, we need to look to the future and start fighting this. This is when I found this wonderful site, and through the people on here I have become more stronger, and more determined to help my Dad get through this.
Have you got anyone you could talk to?, perhaps someone outside the family would be best, I often phone my Dads clinical nurse. I know Macmillan nurses offer help perhaps you could arrange to speak to one of them.
I have days when i just feel like crying, and i do, then i pull myself together and carry on. No one knows what the future holds and there’s no use thinking of the past, that’s gone and nothing can change it. You need to find your fighting spirit and turn all your negative thoughts into positive ones. This journey is a rollercoaster and at times you feel like you are going one step forward then two back but you have to deal with it, that’s life and at times it sucks.
I hope you manage to find your fighting spirit soon, not only for your sake but for your families.
Best wishes
My Dad was diagnosed in April and like your Mom it is inoperable due to location, artery/veins. My Dad was first told he’d got a few months to live but then another hospital said he could be treated with Chemo which will hopefully keep it at bay. They can’t say how long for as no one has an expiry date, so we take it a day at a time and each day my dad is a survivor.
We have had a rollercoaster of a ride the last few months. After being admitted into hospital for what they though was gallstones we found out he had CC. Jaundice was his only symptom. After failed attempts via ercp and pct for a working stent Dad was transferred to another hospital where they managed to fit a metal stent. After a few weeks his jaundice went and he regained the weight he lost whilst in hospital. We finally get a date for Chemo and his bilirubin decides to rise again and Chemo is cancelled. We are now waiting for Dad to have his stent unblocked next week.
Once your Mom gets her stent she will feel so much better.
We try to stay positive, they said his tumour was small and luckily decided to grow in a place so he became jaundice. For it’s size, if it had grown anywhere else he would not have had any symptoms and would have not been spotted so early.(just bad luck it grows by the artery!!) We were told it’s slow growing and my Dad through all this has felt well, still has a big appetite, and manages to do everything he did before he was diagnosed. So we focus on these, the positive things to help us get through it. Our family have always been close but now we are closer than ever. I am an only child but the support from aunties, cousins and friends has made me realise how lucky we are as a family to be close.
This site and the people on here have helped me get through the last few months. I stay positive for Dad and so far he is positive too, but when I have my off days or worries I can’t burden my parents with about CC then I know I can come on here and someone is there for me.
Sending hugs and best wishes, we will all fight and get through this together.
Hi Jtoro,
The first thing my Dad said to me and my Mom when he told us he had CC was “sorry”. This still upsets me that he said this and those words will haunt me forever. I immediately said “We will fight and get through this together” and that’s what we are doing.
As someone who’s parent is going through this I would never want my Dad to feel he is to blame, and I’m sure your children feel the same.
My Dad was told originally he’d got a few months and no treatment was available in April, well the few months have come and gone and treatment is going to be available and will hopefully start soon. Like Lainy said no one has an expiry date stamped on them. Please try and stay positive, I know it must be hard but I know it helps me when my Dad is positive, it rubs off on each other, and this will help your children too.
Best wishes to you and your family
