gavin
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Thanks for bringing this to our attention Michael. I too hope that your mum will get the pump and that everything goes well for her also. Please keep us updated on everything if you can.
My best wishes to you and your mum,
Gavin
Hi Mary,
Glad to be of help as always! Thanks for the explanation about resections and stuff, very useful for all of us and much appreciated! And yep, like you I too am in awe of surgeons who can do this operation!
Hugs,
Gavin
Hi Samuel,
Great to hear from you and see you on here as well!! I am good thanks and hope that you are the same as well. Thanks for signing the petition and yes, let’s hope that maybe next season it will happen! And lets hope as well that maybe, just maybe next season will be the year for the Bears too! You gotta hope don’t you!!
I think of Percy often and miss him a lot as well. He meant an awful lot to a lot of people your Dad did and he and what he did here for everyone will never ever be forgotten. I know that you will be real proud of your Dad Samuel and rightly so!
Hoping that you will stay in touch with us all here Samuel and you have my email address as well so feel free to get in touch anytime.
Blessings to you and your family as well,
Gavin
Our Melinda – https://www.facebook.com/cholangiocarcinoma/videos/10155201367216196/
You all rock!
Hugs and thanks to all of you!
Gavin
And another from our Lisa –
Awareness Month Interview: Lisa C.
February is #Cholangiocarcinoma Awareness Month. Lisa C. was kind enough to sit down with us at our recent Annual Conference and share some of her thoughts surrounding her journey with cc and advice for those who are newly diagnosed. #ccfawarenessmonth #bileductcancer #curecc
Posted by The Cholangiocarcinoma Foundation on Sunday, February 18, 2018
Go Lisa!
Hi Li,
Welcome to the site. Sorry that you had to find us all here and I am sorry also to hear about your dad. But I’m glad that you joined in with us all here as you will get a ton of support from everyone here. From what you say about your dad and his treatment, it sounds like he has been through a lot of treatment and it is great to hear that he was able to have the surgery as unfortunately many people are not candidates for that.
I know that you are confused about things, that is common and something that we all go through at times. No wonder I guess as none of us are doctors or anything are we! I wish that I could help in answer your question for you but I am not a doctor and can not give specific medical advice. I do have some links for you though and hopefully they will be of interest and use to you.
We have a list of major treatment centres in the USA and it can be found here –
https://cholangiocarcinoma.org/for-patients/major-cancer-centers/
We also have a list of treatment centres that was created by the members here on the site where either they or their loved ones have been treated and hopefully you will find some info there about facilities in Chicago. It can be found here –
And, the search forum function at the site of the page will help throw up any discussions and links here on the site as Mary has suggested to you. Just type in what you want to look for and it should throw up what is on the site. I did a quick search and it came up with this –
https://cholangiocarcinoma.org/db/search/chemoradiation+after+adjuvant/
But you can have a more detailed look if you want to. Off the top of my head, I think that a few people have went through these treatments and hopefully the search forum will throw up their experiences for you.
I hope that you will keep coming back here and please let us know how things go for your dad. We are here for you.
My best wishes to you and your dad,
Gavin
Hi Fay,
Thanks for the update on your mum and huge GRRRR to more bugs. And also a massive GRRRRR to hospital food as well! I know all about the bad hospital food from the amount of time my mum spends in hosp and like in Canada it is the same here in Scotland as well, not nice. And often, not hot enough either. Hopefully your mum will get home very soon indeed.
Glad though to hear that you say that your mum is doing better now that the drain is in and that her pain is better as well. Lets keep the fingers crossed that this continues for your mum and hopefully as well she will be able to get back to the chemo ASAP! Loads of positive wishes coming you and your mums way from over here too.
Hugs,
Gavin
Hi Fay,
No apologies what so ever are needed!!! Glad that Karen has messaged you and hopefully she will be able to offer more input than I could, thanks Karen!
My dad had a metal stent put in and that was permanent and he also had a drain at the time, but that was not permanent and was just in for a bit whilst he was in the hospital. Let us all know what happens with your mum with all of this if you can.
Hugs,
Gavin
Hi Fay,
Sorry to hear this news about your mum and you are asking the right questions here. I wish that I could help with sharing experiences from my dad here but he never had a drain so there is nothing on a personal note that I can share here. I hope that others can chime in with theirs or their loved ones experiences with drains and infections etc.
I’m not to sure about these drains having to be permanent but hopefully Karend will be able to answer that question better for you. Karen?
As to the drain affecting future treatments, again I can not really answer this but if the drain is permanent then perhaps so but not sure. The quality of life question is one that I think that someone who has experience of having a drain would really only be able to answer with their experiences, but I would think that having the drain in would have some impact on quality of life.
Have you done a search of the boards for drain issues Fay as I know that there are loads of postings on the site from people about drains etc? Sorry that I cant really be of more help Fay but wanted to at least have a stab at answering and helping if I could.
Hopefully others will be able to chime in with some thoughts as well and please let us know how things go with this for your mum.
Hugs,
Gavin
Hi Brigitte,
What brilliant news, thanks loads for sharing that with us all!! You so deserve the break and yes, time to relax a bit and celebrate!!
Big celebratory hug for you!
Gavin
Hi Pat,
I was just having a joke and pulling your leg with my stripping comment! Sometimes my sense of humour doesn’t come across too well sometimes so my apols to you all! I can so imagine you all comparing scars and wounds and yes, no doubt it was indeed a special moment for you all. It does sound like a varied collection of scars and from what you say, many like car emblems!
Every year I sooooo want to be there but the issue right now and every is my mum and her care. I would need to get her into a care home for me to come and that is quite tough to arrange but can be done so if a home can be found for her far enough in advance. But the other problem is that I have found out that due to my mum being on oxygen 24/7 care homes will not take her as they are not insured to cover people with oxygen needs. So that means that she would have to go into a nursing home for a respite break for me and that is hard to arrange for a respite break. There are not a lot of them here so places in them are very hard to get and even harder to get someone in short term so that a carer can get a break.
She does not need nursing care, but the oxygen 24/7 means she would have to be in a nursing home and not a care home which means me getting a break is a nightmare to sort out.
However, I will most definitely definitely get there when I can and fingers crossed it will be next year. Thanks for everything that you say Pat and I too am looking forward to actually meeting you and everyone else as well when I get over your way.
Some pics that went out on the FB page today can be seen here –
We have absolutely loved hosting so many wonderful patients, caregivers and medical professional at our conference in…
Posted by The Cholangiocarcinoma Foundation on Friday, February 2, 2018
I’m sure that more pics will emerge soon! 🙂
Thanks Pat!
Gavin
Hi Mary,
Yep, brain mets are quite rare as you say with CC thankfully but they do unfortunately happen sometimes as we know. I put brain mets in the header to this posting so that hopefully if someone is searching the boards for info on brain mets then this post will come up easily with having that info in the post header.
Thanks for the info that you posted and I so agree with all of what you say. Couldn’t agree more with you with what you say about people not worrying about being seen as a hypochondriac. If you are even remotely worried about this then go see your med team asap!
Thanks Mary!
Gavin