Forum Replies Created
This is indeed a most wonderful site and I am so glad to have found it. I only joined the site very recently but the support and hope has been amazing and I am so grateful to everyone here for this. It really does mean a lot to me. I agree that the unknown can indeed be very frightening, but it helps to know that there are others who feel the same way. I wish both you and your mum all the very best for this fight. I hope you also keep posting.
Best to you both.
Many thanks for your welcome to this site and for your kind words. We are doing our best here to all stay strong and I am doing everything I can to be there for my mum and dad and to help them in any way that I can. They both mean the world to me and anything and everything I can do for them both I am doing and will do. I hope you stay strong also.
Best to you.
Many thanks for your welcome and for your kind words. I had read many of the posts on this site before I posted here myself and they have all helped me enormously. I hope that I can give something back to people here, as you have all given to me. It does feel better to know that there are others out there and that we are not alone in this.
Prayers to you and your family.
Many thanks for your post and sharing your experience with me. It’s always good to meet a fellow Scot, just a shame that it is in this manner.
I’m sorry to hear that the tumours have returned and can not be operated on. I do hope that the gemcitabine treatment works as best as possible and slows down the cancer as much as possible. I remember how I felt when my dad was told about CC and that it was inoperable, a massive shock to the system to say the least. My dad was told that any treatment would be to slow down the progression of the cancer, but would not eradicate it. This meeting was with a younger doc on the overall team, the 2nd meeting was with the specialist. Again, this time the specialist told my dad that any treatment would be to slow down the progression. The first treatment that was mentioned in both of these meetings was PDT, the specialist felt this was the best treatment at that time for my dad. We were also told that chemo was an option, but as I understood it, they couldnt do PDT once chemo had been tried. The doc felt it best to start with the PDT and if needed, then do the chemo after. We will just have to wait and see what the next stage of treatment is. My dad is 64 so I don’t know if this has anything to do with what treatment is suitable. I will keep you updated on how this treatment works for my dad. I don’t know why your surgeon dismissed this as a form of treatment for you. I’d never heard of it beofre my dad fell ill, but from having looked into it, I understand that it is relatively new. From what I’ve read about it now, it can be used as a treatment for other types of cancer.
As far as the treatment at Ninewells goes, I have been very happy with the way my dad has been treated. The specialist doctor and his team have been excellent and have treated us all very well. Very happy to answer any questions that we have had and have spend lots of time with us all. The specialist nurses there have also been excellent and helped my dad with getting a Macmillan nurse to come to see him. She came a few times to see him in hospital and help him sort out some stuff with what might be neeed once he got home. Now that dad is home, she came to see him on thursday for the first time and suggested what help he could get in trying to get to sleep at night. There is someone coming out from the Maggie’s Centre at Ninewells to do Reike type massage on him tohelp him relax and hopefully sleep better. Also, the Macmillan nurse will be coming to see him once a week at home to see how he is doing. The nurses at Ninewells were amazing, nothing was too much trouble for them and to be honest, I have nothing but praise for everyone involved in my dad’s treatment.
I don’t know what the view in Dundee is as to how people in America may or may not get this or that treament. No doubt cost of treatment would be an issue which I assume is related to the level and amount of isurance cover someone has.
Thanks very much for your post Ron. I hope all goes well for you with the CT scan on the 8th of Oct.
My best wishes to you.
Thanks for welcoming me to this excellent site. I found it very beneficial to me personally to write about what is happening just now. I didn’t know how I would feel before I posted on here for the first time yesterday, but it feels good to talk to other people about my experiences. If someone gains or learns anything at all from my posts, then I am extremely happy to have been able to help them, even if it is only a little bit.
Best to you.
Thanks for your post and for sharing with me. I’m glad that my post was useful to you regarding PDT and if there is anything else regarding PDT that I can tell you about then just ask and I will do my best to answer. My dad never felt the intense heat you talk of you having suffered with the itching. Even after seeing how the itching affected my dad, I can’t even begin to understand how it must have felt for you suffering with the itching and the intense heat.
The piriton tablets seemed to help my dad a bit, buit not enough. I totally agree with you regarding treating the jaundice and how if affects quality of life. When the doc told us that my dad had CC and that it was inoperable, one of the first things he talked of was getting the stent in first to clear the jaundice and that he would feel much better when the itching stopped. Then they would move on to the next stage of treatment.
Am really glad to have talked to you, just sorry that it has to be about stuff like this. I hope you managed to enjoy some of your time in our wee country, and perhaps enjoyed a plate or 2 of our national dish!!
My best wishes to you.
Thanks for sharing about Teddy and how the ice bags worked for a while, I wish we had thought of that at the time! Does Teddy still have his stent in? The doc never said to us how long my dad would have to keep his stent in for, but I am assuming that it will be in for good? He did say though that if my dad starts itching again then get in touch with his GP or specialist nurses immediately as this could be a sign of the stent getting blocked and the bile duct getting blocked again. I know they put a metal stent in which I believe has lots of tiny holes in it to release fluid.
Best to you and Teddy
Thanks for your kind words, support and for sharing your story with me. Am so sorry to hear about your dad and what you both went through. I’m glad that you shared these good talks together and I’m sure that they meant a lot to your dad as well.
I can fully relate to what you and your dad must have gone through with the itching having seen what my dad went through. He would sit there for hours on end itching and scratching away and it got to the point where he was finding it hard to sleep because of this. The worst part for him was the itching around his eyes and he was constantly taking off his glasses and rubbing his eyes. What was of a great worry to us at this point was that we did not know why he felt like this.
Thats pretty bad that your doc didn’t understand about your dad’s itching. When my dad went to see his GP about this, he hadn’t been diagnosed with actual CC, but was very jaundiced and waiting to go to the hospital. The GP prescribed Piriton which helped a bit, but did not stop the itching. In the hospital, my dad still took the Piriton and still had the itching. It was explained to him that the itch was a result of the jaundice and that the stent when it went in should help. Once the stent was in, my dad also had a billary drain draining the bile duct of blocked fluid into a bag that was attatched to him 24/7. The doc at the hospital described this as a “2 pronged attack”. My dad’s response was along the lines of attack it anyway you want!! After more than a few weeks of itching, he would have tried anything to get it to stop! Clearing the bile duct of the blockage was also necessary before the PDT treatment could be started and the docs wanted to get on with the treatment ASAP, as did my dad.
Peace be to you and your family and my thoughts are with you also.
I’m glad the info regarding PDT was helpful to you, hopefully the treatment will be helpful to my Dad! If there is anything specific you or anyone else wants to ask regarding my Dad’s treatment then ask away, I am more than happy to help if I can.
When Dad puts on the hat, gloves and glasses, he may think that he is Michael Jackson, however, he most definitely does not have the same moves! It was very funny to see him all dressed up like that shuffling his feet thinking he was cool! Certainly the nurses and us all had a great laugh as well and a few of them took some photos of him! Although he may have felt like a star, he can not however move like one! My Dad has a great sense of humour and took all of this very well. It’s great for us to see that no matter what is wrong with his body, he hasn’t lost his sense of humour.
Prayers of support to you coming back across the waves from this side of the pond.
All the best
Thank you very much for your kind comments. God be to you and your family also. I will keep in touch with you all. Hugs back across the ocean to you. I wish you all well.
Many many thanks to you all for the very warm welcome you have extended me. And thank you all so very much for the prayers to my family. I am very happy to have found this site and all of you.
Lainy, you are right, I do need you all and I hope that I can give you all back as much as you are all giving me.
Marions, I do not know who Ron Smith, but it is always good to see another Scotsman! Funnily enough, my Dads name is Ron, but the nurses in the hospital kept calling him Ronald, which seemed weird to me and my Mum!
Kel, thanks for your welcome.I hope this site is as much of a help to me as it has been to you.
Thank you all so very much once again, all of you will be in my prayers and I look forward to being side by side with you all
Love to you all
Hi Lainy and all,
My name is Gavin and my father was recently dignosed with CC. I sent you a letter to the email link under your name talking about my fathers story. I only registered with this excellent site yesterday, so I don’t know if my letter will be okay for you to use. Having only just joined the site, I didn’t know if it would be ok for me to write to you as a carer and a son regarding my fathers story, or if you only wanted letters from people suffering from CC. Anyway, I sent you the letter. Hopefully you will find it useful.
I will do an intro type post to all on myself over the next few days.
Love to all