gavin
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Did you get my email I sent you a few days ago Emma? If these anti nausea meds are not working for your mum by now I would get her back to the gp as soon as you can to see if they can be changed for other ones. There are quite a variety of meds that can help here with this and your mum may need to try other ones.
My best to you and your mum,
Gavin
Real sorry to hear this latest news about Mark Kris. So wish I could say something that would help right now. I hear what you say about being at peace with everything but not liking it, my dad and I felt like that as well.
So hoping that you both get some better news soon and that the testing can be done. You know that we are here for you Kris.
Hugs,
Gavin
Hi Aiste,
Great post, thanks for that. All of the emotions that you feel right now I would say are quite normal and they are all things that we can relate to here. I know that it might not seem like it, but from what you say it does sound like your dad is making good progress from the surgery. It will take time for him to heal from this and it will also take time for the jaundice to recede. It takes time for it to build up and will take time for it to clear up as well.
Feeling sacred is okay I would argue, nothing wrong with that. And a good idea too to not take your son to the hospital right now if it upsets him too much. Maybe wait until your dad is doing much better in the hospital or when he gets home. But your son may surprise you still and want to go back to the hospital after a few days, who knows.
Hoping that your dads recovery continues and please keep us updated on his progress.
My best to you and your dad,
Gavin
” I imagine I will only be off the Board about 2 weeks.”
Hmmmm, no chance you staying away from here for 2 weeks!!!
Women and bags…… whoa, I am so NOT getting involved in that conversation!!!
You know that tons and tons of positive thoughts are coming over the pond to you and of course everything is crossed for you too!
And as for the ulterior motives, I agree…. I know all about you, your family and the gift shop at the hospital!!
Hope everything goes as planned and goodbye colitis. It was nice knowing you, NOT!!!
Love ya loads Momma!
Gavin
PS – Remember to do as you are told now……..Ha!!
Sorry to hear this news Mauricio. So hoping for the best for your dad and sending a ton of positive thoughts to him.
We are here for you and thinking of you and your dad.
Gavin
Hi Mauricio,
You got it, tons and tons of positive thoughts are heading yours and your dads way from over here. Please let us know how everything goes and know that we are here for you.
My best wishes to you and your dad,
Gavin
Hi Nikole,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your dad. But glad that you’ve joined in with us now as you are so in the best place for support and help and will get loads of both from us all. Real glad to hear that you are looking to get further opinions for your dad as to treatment options and I so hope that you have much success with this.
Please let us know how things go with this and know that we are here for you.
My best wishes to your dad,
Gavin
Hi Aiste,
That is great to hear that your dad is doing so well now after his op! The recovery will take time but it sounds like each day he is getting better and stronger and my fingers are crossed that this speed continues for him. Out of the IC is excellent news!
You are doing everything right for your dad Aiste. In addition to what Lainy has said to you about writing questions down to ask, you may want to also write down the answers that you get to your questions about your dad. It is easy to forget what is said in meetings like these, especially when there is a lot of technical talk about stuff that you most probably are not familiar with. I speak from personal experience on this with my dad and forgetting stuff and I guess that many of us here have done that as well!
You’re starting to sound a lot more positive and upbeat as well now, good stuff!
My best to you and your dad,
Gavin
Indeed it is important Marion and like you I hope it to be very successful as well. My thinking is that many doctors etc here in the UK would not be comfortable taking samples to send on because of rules and regs surrounding all of this even if a patient was to sign a consent form allowing them to do so. If the rules here change allowing this then to happen then think that attitudes would change pretty quickly as well from gp’s etc.
Hugs,
Gavin
Thanks for that Marion. Just thought I would mention this in case you didn’t know any of that. Hoping that things change soon so that any others from the UK will be able to partake in this.
Hugs,
Gavin
Marion,
I got in touch with Helen over this re people in the UK taking part in the study and Helen said that people in the UK will not be able to take part yet. She has written quite a bit about this in FB and AM and this is what she told me last week,
“I have posted about this several times and right now it’s not possible for UK patients to have their samples taken here and sent to the US because of the UK’s stringent Human Tissue Act (which came about because of the Alder Hey scandal, and caused the Human Tissue Authority also to be set up).
We are looking for ways round this and I’m in touch with Shahid Khan, John Bridgewater and a couple of others to see how we can participate and collaborate with the Mayo. Once we know how we can do this with ethical approval (might be that the samples have to be analysed here in the UK) then AMMF will certainly be sharing the details for everyone here who is interested in taking part.
Prof Valle will be subject to the Human Tissue Act too so, although he may well have expressed willingness to participate in the study, without jumping through endless hoops to obtain specific ethical approval, he cannot collect and send samples to the US.
So, hopefully soon we’ll have some definite news on Imperial, UCL (and maybe The Christie) being involved in helping patients to participate in this study, but at the moment patients in the UK cannot participate. “
Here is more on this from AMMF –
http://www.ammf.org.uk/2014/06/30/biosamples-cc-biobanks-the-international-cc-patient-registry/
Alder Hay is a hospital in the UK in LIverpool and there was a huge scandal there many years ago, here is more on it if you are interested –
http://en.wikipedia.org/wiki/Alder_Hey_organs_scandal
So hope that things will change in the future and that people from the UK will be able to take part in studies like this in the future.
Hugs,
Gavin
Hi Aiste,
Thanks for letting us know how your dads surgery went and from what you say it sounds like it went well, excellent news!! As Lainy says, the recovery will take time and I know that you will be at your dads side throughout this and I know that he will need that and appreciate you being there for him too.
As to these people around you who are being so negative about everything and making you mad, try not to let them get to you if you can! You have enough on your plate to deal with right now and don’t have energy to waste on them! Stay strong Aiste and keep letting us know how things go.
My best wishes to you and your dad,
Gavin
Hi Aiste,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your dad. But I am glad that you have joined in with us all here as you are in the best place for support and help and you will get loads of each from all of us.
Thanks for telling us about your dad. I know that right now your head will be all over the place with everything that is going on and that is so common, but please do not give up hope. It is great that your dad is able to have surgery as for far too many CC patients surgery is not an option after diagnosis. My fingers are crossed for your dad and for the operation to be a success. I can not share any personal experiences with surgery as my dad was not able to have it but I know that many will be along soon to share their experiences with you.
Like your dad’s doctor, I too hope for a good outcome to the surgery and please let us know how that goes. Keep coming back here Aiste, you are not alone in this now. We are all here for you and we care.
My best wishes to you and your dad,
Gavin