h-purdy
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That would be a great idea Scott, to try and met him.
I’m really surprised no one else has chimed in here, in being a Canuck. Maybe there isn’t that many on here.
I had a resection in December 2014 and then chemo until May 2015 so now I am Cancer free but as you know it’s a wait see now for recurrence. I went back to working full time in January 2016 to help keep my mind busy.
Take care and it has been great talking with you. I hope your snow isn’t getting to high, it appears you’ve just had another storm. We’ve had a very mild winter, but it’s not over yet.Been so long since I posted this introduction, thought I should update. I’m still doing great, going for my 15 month scan next month and I am NED. A few digestive issues and tiredness but I am not complaining. This is an ugly cancer though, in the time since diagnosis I have lost many cc friends and I have shed many tears. But God willing I am still fighting and won’t give up.
Scott my oncologist at the Princess Margaret in Toronto, Dr. J. Knox specializes in gastrointestinal, you can ask your oncologist to contact her also for help. Has your team looked into immunotherapy, it is becoming very popular. Just some suggestions. There is also a group on FB I talk with, Cholangiocarcinoma Warriors, it is a closed group so you have to ask to join. Please consider reaching out to it, they are a great group and very supportive also. I see some of the same members here also.
Actually there is a very nice guy by the name of Matt Reidy, he is also a member here and he is on a trial called Keytruda and getting good results, you might want to find his messages and tap into him he is immensely knowledgeable.I live an hour west of Toronto in Cambridge. But have lived most of my life in the out skirts of Toronto. I actually lived in NB from 89 till 03, in a small village along the St John river, Perth Andover.
I’m hoping we can connect with many other Canucks here and I’m trying to get the word out about the Foundations existence for that. I found a social page on FB which gave me great support when I was first diagnosed, I felt very alone. You must have experienced the same.
I go next month for my 15 month CTscan and plan on talking with others at the clinic as I was told most have cc there also.
I was surprised the PM didn’t have a group or literature on CC, but that’s okay, I want help and support as many as I can. When I was in SLC for the Foundations annual conference it was so emotional for us all to get together, there was about 50 of us patients and just as many caregivers, fantastic to talk, laugh and cry with them all. But I was the only Canuck, couldn’t believe it.
This cancer is so rare and little is known on how to even treat it. The conference brought all kinds of medical professionals together to talk about it and compare knowledge. We need this.
How did you learn about this group? When you go to Halifax for tests is there any literature at all available to you about CC? It’s great connecting with you, I love Canada!Good morning Scott, I’m a patient at Princess Margaret in Toronto, well I was. I’m not in any treatment right now as its a wait and see. Do you receive treatment in NS? My daughter in law is from Baddck.
How did you learn about the Foundation? Have you met any other CDN’s?Thank you everyone for the warm wishes. I am very happy to have been directed here and connect with you all. I still feel it’s a bad dream. I’m not sure about taking chemo, it was a decision I struggled with big time. It has bad reviews and so many say it’s what killed them. But the doc says it’s okay. What do you believe.
