gavin

Thanks Marion.

Thanks for that Marion. Do you want this put on the FB page as well?

Good link Marion, thanks for that.

Hi Chrissie,

In addition to the the link that Marion gave you, here is another that may be of use and interest to you

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/what-are-myeloproliferative-neoplasms

Please let us know how everything goes Chrissie, we are here for you.

My best to you and your dad,

Gavin

Hi Dave,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your wife as well. But glad that you’ve joined in with us here as you are in the best place for support and help, and I know that you will get a load of each from everyone here. Thanks for sharing what is happening right now with everything. Where in Florida was your wife diagnosed and where is she being treated right now? Reason I ask is that we have many members here who will be able to give you specific advice re hospitals etc especially so should you wish to seek further opinions about anything.

Please do not worry about being up on the terms of everything etc and we all know that this is such a steep learning curve that we all go through. And as for you being a mess right now, we’ve all been there too so please don’t worry about that. I can still remember how I felt after hearing my dad’s diagnosis, like I’d been hit in the head with a bat. We have a good book that can be downloaded as an e-book should you want to and I am sure that this will help you with everything. It can be found here –

http://cholangiocarcinoma.org/news/foundation-resources/

The e-book is free to download and I highly recommend it for reading.

I know that your head will be spinning right now with everything that is going on, but please know that you are not alone in this. We are here for you and we care. Please keep coming back and feel free to ask questions and we’ll do our best to help. I look forward to hearing from you more.

My best wishes to you and your wife,

Gavin

Dear Mary Beth,

You got it! Tons of positive thoughts are coming yours and Rob’s way. My fingers are crossed for you guys and this new treatment and I so hope that it goes well for Rob. Please know that we are all here for you and are in your corner with you both. Please let us know as well how things go.

Hugs,

Gavin

Hi Supermum,

Glad to see you posting here again and very glad to hear you say that you feel such calmness after making your first post here on the site! I so agree with what you say about anyone lurking around the boards. Please, if anyone is reading the boards and not posting, come join us lurkers, we don’t bite, honestly!!! When I first came here after my dad’s diagnosis it helped me enormously to be around people who know what I felt and what I was going through, and I think that that can be said for so many of us here. None of us have to go through this alone, we can all go through it together and I think that that makes it easier for us all no matter whether we are carers, patients, family or friends. We are in this together.

That’s good that your husband is well today and the agitation is something that many get. I do hope that the dexamethasone helps him here, how has his recovery from the whipples been? We have many members here who either they or their loved ones have gone through the whipples and I am sure that they will be happy to share some experiences or tips with you on that.My dad’s cc was deemed inoperable from diagnosis so he never had surgery of any type so I can’t share any personal experiences on that.

I would agree that your husband is in good hands and I too hope that the Gem/Cis does it’s magic. There is a very good chemo board here on the site and I know that you will find lots of posts there from the members on the site who either they or ther loved ones have went through that treatment. How is your husband dealing with that and any possible side affects? Fingers are crossed for the best possible results from the scan on the 7th and I hope to see you posting in the good news section of the site!

A fellow Scot, Yay!!!! And from Fife too! For our American friends here, the great Kingdom of Fife is a 5 minute car journey away just over the Tay Bridge from Dundee! Made that journey many times myself as I used to go out with a lass years ago from Krikcaldy, the Lang Toun!

Glad to hear that we’ve all helped Supermum, keep coming back and let us know how everything goes. We are here for you.

Hugs,

Gavin

Hi Nicole,

Yep, thats the word I was looking for, balaclava! Not just for criminals and bank robbers they are I guess! For sure though in your part of the world in winter people do have to take extra care from the temps when going through treatment. I guess the Parisian look with scarf and beret may not just be enough to deal with the cold winters! When my dad got his PDT treatment he had to protect his eyes and skin from direct light for about 8 weeks. He had to wear the darkest glasses possible, gloves and a wide brimmed hat when he left the hospital and went outside as the light would burn him. He thought he looked like Michael Jackson though!!

My best to you both,

Gavin