gavin
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Hi Kim and Mary,
Glad to be of help as always and I totally agree with everything that you both say. I came here back in 2008 right after my dad got his CC diagnosis that summer and having taken to the internet to find out all about CC I found this place and am glad that I joined straight away. Everyone here was so helpful to me in a ton of ways and it certainly felt like family. One of the things that helped me most was the fact that I wasn’t having to deal with everything on my own and I knew that a ton of people could relate to how I was feeling and what I was going through from the carers and family member of a patients perspective.
Personally I pretty much shared everything that was happening to me and my dad, what we were going through etc but yes Mary, I agree that not everyone is like that but it is just the way that I am.
I hear what you are saying Kim about Rich and I so hope that you can get him to come to the boards if he felt comfortable about that as I think it would be of help to him as well to be around others that are having to deal with what he is as well.
Hugs to you both,
Gavin
Many thanks for posting that Randi and yes, I am sure that it will be of interest to many around here.
Thanks again,
Gavin
Hi Pamela,
Thank you loads for your most generous donations from your store. It is much appreciated indeed! I know how proud your mum will be of you and like you as well I too hope that we will find the cure as soon as possible. Thank you!
Hugs,
Gavin
Hi Teresa,
Thanks for the update on Steve and please, no apologies are ever needed around here for the length of any posts! Go back over some of my earliest posts and some of them were like short stories here!
You guys sure have been through a lot and having to fight appeals as well to get the treatment, big grrrrr to having to do that but great news that you were successful and that Steve has been able to start the treatments now. My fingers are crossed for this to work as best as possible and please keep us updated on how things go. Real glad to hear that Steve is tolerating the treatment well and go kick some butt!
My best to you both,
Gavin
Hi Fay,
Thank you for that and we are all glad to have helped in what ever little way that we all could have. Having lost my dad to this cancer in 09 I so know exactly how you feel about everything and I felt and still do the exact same about everyone here now. And I guess that is why you will all never get rid of me either!!
Yes piecing yourself back together again is also what we all have to go through and please do not rush this period of your life. You take as long as you need Fay and then please know that when you do come back here again we will all be here for you. Thank you as well for your plans for advocacy and for supporting others as I know that that will be appreciated by so many many people. Thank you!
Hugs to you Fay, giant ones as well!
Gavin
Hi Rick,
The new board looks great to me, but maybe I am biased here!! I’ve used it on my phone for reading posts etc and it works fine for me here, but not posted anything through my phone. Agree with Brigitte that it is used less but not doubt there are still a ton of people who come to the boards to read, search for info etc but would rather post and communicate with others on FB. The power of FB I guess. I find the platform easy to use and search works for me too.
Can you do a search within a search Rick? Eg – do a search for something like Gem/Cis then do a further search within what the first search throws up. Maybe that would be of use to members looking for something very specific? Just thinking out loud here.
Thanks Rick!
Gavin
Hi Genevieve,
Thanks loads for sharing your news with us all here! What brilliant news indeed and I know that your husbands story will be of great interest to many people out there. My fingers are crossed for the great news to continue for you both as well!
Hugs,
Gavin
Hi Sar,
Sorry to hear what your dad is going through with this and yes, it is very important to try and deal with any appetite issues and the metal taste of food will not help with maintaining a good appetite,
I have some links from here in the UK and hopefully they will be of some help to you and your dad.
https://www.cancer.net/navigating-cancer-care/side-effects/taste-changes
I hope that some of these will be of use to you Sar and my best wishes to you and your dad.
Gavin
Hi Beatriz,
I am glad to be of help as always! Having too also been a carer for my dad during his battle with this cancer I often wondered as well about stuff like that that you mention. But I would argue that we can all only do what we did to help our loved ones through it all. Yes we all want to have better screening in many ways to detect CC as early as possible and I am confident that that will come with time. Just not fast enough as we would all like though! But technology being what it is and developing as fast as it is in many ways I do think much better screening will come in time.
That is great to hear about the breast cancer screening study and I keep my fingers crossed that the trial and study will lead to positive developments on that front. It does seem like so often in the general news now we hear of new trials and programs to do this that and the next thing with regards to many cancers etc so lets keep our fingers crossed!
Hugs,
Gavin
Dear Fay,
I too am so very very sorry indeed to hear of the passing of your dear mother. Please accept my sincere condolences. I know the pain that feel right now having lost my dad to this disease but please know that you did everything that you possibly could to help your mum with everything. I know that she would be very proud of you.
Yes it is a gruelling journey for patients and gut wrenching for us family members and carers etc as well as you say. Please take some time for yourself and know as well that we are here for you. My thoughts are with you and your family right now.
Hugs,
Gavin
Hi Kate,
With regards to medical terminology and all of that stuff, it is no wonder we all get confused sometimes with everything that is thrown at us to do with all of this! I know that I did loads with my dad as well. We have a link here on the site that could help with all of that under the “educational section” Here it is –
https://cholangiocarcinoma.org/the-disease/glossary-2/
Hope that this may help a bit and apologies if you have already seen that page.
My best to you and your husband,
Gavin
Hi Mjheintz,
Welcome to the site and sorry to hear of everything that you are going through right now. Let me just say, please do not feel weird or anything at all about asking ANY questions here on the boards. All questions are most welcome and if someone can help in any way at all I am sure that they will.
Not much that I can add to what Mary has already said to you but I have a few links from here in the UK that hopefully will be of use and interest to you.
https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/hair-loss
Both of the above links will have other pages and links in them that should hopefully have more info in them as well that could be of help and both of the these organisations are very highly respected and leaders here in the UK with regards to cancer and cancer care etc.
Hope that they will be of use to you and please keep on coming back and asking the questions if you have any at all!
My best to you,
Gavin
Hi Molly,
What great news indeed about this new procedure!! Thanks loads for sharing that with us all and I am sure that this will be of interest to loads of people out there. I hope that your recovery goes well and please keep us updated if you can on how things go. Great news once again!
Now you make sure to enjoy that eating when you are able to, enjoy!! 🙂
Hugs,
Gavin
Hi VTKB,
I am not sure, but will try and find out and if I hear anything back I will post on here what I can.
Best wishes,
Gavin