gavin
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Thanks for the update Elaine, and great news on the surgery going ahead!! I will be keeping everything crossed for you that it goes as planned and is a roaring success! And loads of positive thoughts will be heading your way as well.
Please let us know how it goes.
My best wishes to you,
Gavin
Hi Emma,
So glad that you are feeling a bit better now that you have talked with us. I know from my own experiences that coming here after my dad was diagnosed helped me so much, and I know as well that everyone will help you too and I am sure that you will feel better too in coming here so please keep coming back. I always found it better to be around people who knew what I was going through and we so know what you are going through right now.
It sounds like your mum is not really up to talking about things at the moment and I can understand that, that is so normal for many people. All I can suggest about that is to just keep being there for her. She will rely on you for much and I know that that will be tough for you. But you seem very strong to me and have reached out here looking for help and answers if possible so that tells me you are strong. Hoping that others will be able to chime in with suggestions as to how to handle things with your mum as well.
Your mums GP will be of great help as well right now. What I would do is try and get your mum to see her gp as soon as she can. The gp will be able to make the referral to Macmillan on your mums behalf so that you can get their services, you don’t have to do anything there just get the gp to do it. The gp will also be able to help with the burping that your mum is doing now. This could be down to a variety of reasons and I would speak with the gp about this as there are things that hopefully can be done for this.
I contacted helen at AMMF tonight on your behalf so let’s wait to see what she says about a referral to Edinburgh. I will get back to you on this as soon as I hear back from Helen. The gp can also make the referral to Edinburg on your mums behalf but we can deal with that later.
As to the meeting with the oncologist. This will be to discuss the option of doing chemotherapy for your mum and you will learn much more about the options of chemo at that meeting. Do not be afraid to ask questions of the onc and I would suggest that you take a pad and pen to the meeting and write down as much as possible about what is said there. Also, prepare any questions in advance for this meeting if you can.
Here is a link to the Macmillan nurses and how they can help –
http://www.macmillan.org.uk/information-and-support/coping/getting-support/macmillan-nurses
Here at the site we also have a psychologist Dr Giles who has helped many of our members deal with many things, such as how to handle the diagnosis, how to talk about things etc. You can post a question to him through this link here and he may be able to help you with regards to speaking to your mum about things. He can’t give medical advice related to the cancer but he will be able to help you deal with everything and maybe that is something that will be of use to you?
http://cholangiocarcinoma.org/for-patients/ask-dr-giles/
I know this is a lot to take in Emma but do not give up hope. Stay strong and keep coming back here.
My best wishes to you and your mum,
Gavin
Hi Lee,
My dad had a metal stent inserted and that worked wonders for him with clearing up the jaundice and getting that bile flowing again. But not only that, once it started working as it should he felt so much better very very quickly indeed. The relief he got from the dreaded itching too he said was amazing!
I hope that the stent that your husband has works just as well for him. Clogging is most certainly something to keep an eye on in case it happens and if it does there are things that can be done to unclog or change it.
My best wishes to you both,
Gavin
I forgot to ask Emma, what is your mums name? If you don’t want to post her name here then please could you send me it off board. Just click on my name then you can send me it off board if that is what you want. Just so I can pass it onto Helen at AMMF later.
Thanks,
Gavin
Hi Emma,
Welcome to the site. Sorry that you had to find us but glad that you have joined us as you are in the best place for support and help and will get a load of each from everyone here. Like Lainy has said to you, I am from Dundee and my dad was diagnosed and treated here at Ninewells back in 08 and 09. I too am an only child and I so know everything that you are experiencing right now.
First off let me say that the treatment that your mum has had with that nurse at the Victoria is shocking to say the least, that is no way to treat anyone. I would think that the Victoria being a smaller hospital in Kirkcaldy that they would not have much experience in dealing with patients with CC so I would suggest trying to seek an opinion elsewhere where they would know much more about CC. How do you think your mum would feel about travelling to Edinburgh? Reason I ask is that I would probably be looking to get your mum seen through there as I know the team in Edinburgh have much experience in dealing with CC. NInewells is another option but the team in Edinbugh are very good.
Speak to your mum about this and let us know how she feels about that. It may be the case of course that surgery is not an option and that was the case for my dad as well, and that has happened to many others also. But, that does not mean that there are not other options re treatments.
Does your mum have the services of a Macmillan nurse? If not then I would strongly recommend that she gets one asap as they are a godsend and will be of much help to both you and your mum. My dad was offered their services after his diagnosis and they helped us a lot. Your mum is now entitled to one after her diagnosis and the hospital should have mentioned this to you. If your mum wants one then her gp will be able to make the referal to Macmillan on her behalf. Once again, I strongly recommend that she get one.
I know that right now your head will be all over the place with everything that is happening, that is very common. But you are not alone in this now, we are here for you and will help as best as we can. You have so done the right thing in seeking further help, so please keep coming back here. Speak to your mum about Edinburgh and see what she says and let us know. I will contact Helen at AMMF tonight on your mums behalf as well. We are here for you.
My best wishes to you and your mum,
Gavin
Glad to hear that you guys are heading home Kris and so hope that things improve a lot and very quickly as well. And as far as vomitting the squid back up goes, you are so right in that did give me a laugh! Shouldn’t really be laughing at someone being sick, but you know what I mean. I can so picture the docs getting freaked out by that one and trying to figure it out. Bet they won’t have learned about that in med school!
Hugs,
Gavin
Amanda,
Thank you for your kind words. You are so right that time does indeed make things easier and for everyone the healing process will be different in many many ways. For some it may be quicker and for others it may take longer but none of us ever forgets do we? To have days and nights that are difficult is so normal and that is something that we all go through. When that happens to me I like to look back and think of the happier and fonder memories of my dad and I so hope that you can do that also with your mum.
Please know as well that we are all here for you always and we so know what you are going through.
Hugs,
Gavin
Hi Karen,
Welcome to the site. Sorry that you had to find us all here. Glad though that you’ve joined in with us here as you are so in the best place for support and help and can expect lots of each from everyone here! I can’t post much right now as am in a bit of arush at the moment but here are some links that I hope will be of use and interest to you –
Newly diagnosed:
http://cholangiocarcinoma.org/the-disea … diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foun … resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-e … tion-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professio … -registry/And no, you are most certainly not dead yet! I say that to you in my broadest Scottish accent! Kicking this crap right between the eyes sounds like a great plan to me and know you don’t have to do the kicking alone, we will gladly join in with the kicking and stamping too!
We are here for you and we care.
My best wishes to you,
Gavin
Sorry to hear this news Kris. Wish I could say something that would help right now but please know that I am thinking of you both lots and wishing good things for you both as well. You know that we are all here for you always.
Hugs,
Gavin
Hi Lee,
Welcome to the site. Sorry that you had to find us all here but glad that you have joined in with us here as you are so in the best place for support and help and will get loads of each from everyone here. Have you tried using the search forum function at the top of the page? You can type in what ever you want to and it will throw up posts containing what you are looking for if they are here on the site. The posts on the site are all by our members so you will be able to read others experiences with various treatments etc.
It will probably be a bit quiet around here for a few days with it being Easter but I know that you will get support and help from all of us here.
My best wishes to you and your husband,
Gavin
Brilliant news Darlene, majorly chuffed for you!!!
Good luck with the PET scan, hope you get the news that you want to hear and please let us know how it goes.
My best to you,
Gavin
Hi Dennis,
Welcome to the site. Sorry that you had to find us all here but glad that you have joined in with us as you are so in the best place for support and help and you will get loads of each from all of us here. Thanks for sharing what has been going on with you for the last year and that is so good to hear that you were able to have the successful surgery!
From everything that you say it so sounds like your recover has gone well and it certainly sounds like you are enjoying life once again, great stuff! Please keep coming back here and know that we are here for you.
My best wishes to you,
Gavin
