gavin
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Dear Duke,
As the others have said to you, you will always have a place here with us and here in all of or hearts for ever. Not only have you touched and helped all of us here but so many many others around the world who read your posts but do not post or have not joined as members. The effect you have had on so many people is huge and you will always be with us all.
You have fought all of this with strength, dignity, courage and of course humour as well. And yes, we most certainly will keep up the fight.
Thinking of you and all of your family right now.
Hugs to you,
Gavin
Carol,
Sorry to hear about the pneumonia and yes, I would say that moving your dad anywhere right now is most definitely on hold. My mum had pneumonia and she had it very very bad to say the least, it caused one of her heart attacks. So hope that the antibiotics start kicking in big time very soon and that he can move on from this. As if he and you all did not have enough to deal with already. Thinking of you, your mum and your dad right now.
Hugs,
Gavin
Great news for UK members wishing to partake in the GWAS study and thanks to AMMF for this piece today.
http://www.ammf.org.uk/2015/08/20/gwas-cholangiocarcinoma-study/
Gavin
Hi Steven,
No problems and thanks for understanding, I see what you are trying to do now. Yes we seem to have had some issues with people posting something and they hit submit and it does not post so I think they hit it again and it posts twice or more, hence our trying to delete the duplicate postings and just leave one of them if that makes sense! I am guilty as charged on that front too! But like Lainy says, no traffic tickets get issued here but maybe i should give myself a ticket!
And Lainy, ha, Eraser! I will need to hit the gym then to bulk up like Arnie! Just trying to help Rick out so that his workload is reduced a bit, and we all know how busy Rick gets with keeping everything running tip top!
A “cold snap” for you then Lainy…….. but 100, whoa……I would still be melting in that me thinks!
Heating on for you then Momma!
Thanks both,
Gavin
Hi Steven,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your mum. But I am so glad that you have joined in with us here as you are in the best place for support and help and will get loads of both from everyone here. You have so done the right thing in seeking further opinions about all of this for your mum and from what you say it so sounds like you are doing a fantastic job in taking care of your mum and I know how much that will mean to her as well.
Please let us know how everything goes with all of this and please know that we are here for you as well. And just wanted to say as well that if you are wondering where your 3 other posts that you made in the intro section of the site went I deleted them. It is so not that we don’t want to hear from you but we are trying to clean up any duplicate postings from members so that other members posts do not get lost in the traffic that we get on the site. I only deleted them as they were the same as this introduction post that you made here and the other posts did not have any replies to them yet. I hope that is okay with you!
Looking forward to hearing much more from you Steven.
My best wishes to you and your mum,
Gavin
Hi Carol,
Big grrrr to consultants not turning up for this meeting, not what you need right now. I have a personal question if I may, hope you are not offended by me asking this. Is your dad able to get out of bed at all right now, eg- for going to the toilet? Sorry to ask but things like that have to be taken into account right now as your dads comfort is of the utmost importance here and I know you will agree with that.
Was the issue of Macmillan nurses raised today and will one of their reps be at this meeting that is coming up? If not I strongly recommend that you mention this at the meeting as you are entitled to one and I know they will be of great help to your mum and dad.
I can so see why your dad feels comfortable where he is and wants to stay there, my dad was the same.
Hugs,
Gavin
I know that you are in bits right now Mizzey, we unfortunately all know what that feels like and can so feel your pain. Yes please try and stay as positive as you can and your sister will need you there with her throughout everything. And know as well that we will always be here for you too.
Hugs,
Gavin
Hi Mizzey,
I am very sorry indeed to hear the news you have about your sister. I know how hard this will have hit you both and I so wish that I could say something that would help right now. I am glad to hear that she has an appointment to see about a trial and I do believe as well that you have made the right decision in supporting your sister no matter what she decides to do about all of this.
I so hope that your sister will get some good news at this meeting and please let us know what is discussed if you can. And please know as well that we are all here for you.
Hugs,
Gavin
I forgot to ask as well Carol, does your dad have a Mac nurse as they should be able to help out with nursing tasks if the Marie Curie nurses can not. How did your meeting with the consultant go?
Hugs,
Gavin
Hi Kim,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your sister as well. But glad that you have joined in with us as you are in the best place for support and help and will get lots from everyone here. I know how much this diagnosis for your sister will have hit you all and I was that way as well when my dad was diagnosed with his inoperable CC.
If you could tell us some more info about your sister that would be great as the more info we have the better we will all be able to help you. And I hope that some of our other Australian members will pop in here to say hello to you as well.
My best wishes to you and your sister,
Gavin
Hi Duke and youngest son,
So great to read this post from you this morning!!! Have been thinking of you loads and hoping to read a post like this from you on here. Now you keep on getting better now Duke and I am so looking forward to hearing from you again when you are feeling stronger. Can’t wait to hear all that you have to say to us all!
Get strong!
Gavin
Hi Marion,
How it works here in Scotland and i assume the rest of the UK as well, the carers that I am talking about are carers that will help with personal care, washing, cooking etc and they are not allowed to administer medicines either. At least the ones that come to my mums are not. They will be able to get medicines ready for the patient to take, put them out etc but the patient has to take them themselves.
Macmillan nurses or Marie Curie nurses will be allowed to administer these drugs and would also be able to prescribe stuff as they are nurses and not carers. They can also evaluate patients, make decisions advise the GP etc but again, carers would not be able to do that..
Hope that makes sense. Also, the district nurse would probably come in to see someone a lot more if they were being cared for at home so that is something that should be kept in mind as well. As you know, my mum gets the services of the local COPD nurse and she is coming in once a week. But for someone who has cancer then that role would most probably be taken up by a specialist nurse who would be a Mac nurse.
Hugs,
Gavin
Hi Carol,
Thanks for letting us know how things are with your dad right now and sorry to hear what Marie Curie have said about everything. I would ask the consultant about any other hospice facilities that may be available that are not related to Marie Curie, that may be worth doing. I would certainly mention to the consultant that your mum can not cope with the caring duties and see if they will get involved with his hospice planning. Perhaps the cons can talk with Mare Curie on your behalf, stress what is happening not only to your dad but your mum as well.
I know that your dad would be eligible for carers coming to the house for 3 time a day or so each day but that would be for general personal care and not medical care and that would be funded by the local council. I know this as my mum gets that as well each day once a day.
Will have a think about this and get back to you with some more thoughts if I can come up with anything. And please let us know how everything goes.
Hugs,
Gavin
Hi Lourdes,
Many thanks for that idea of yours! I have passed this idea on to Donna and Marion and will see what they think of it.
I have never heard of Alex and Dani, maybe that is because I am in Scotland! Anyone else heard of them or got any thoughts on this? Sounds like a great idea to me Lourdes, thanks!!
Hugs,
Gavin
Hi John,
Welcome to the site. Real glad that you have joined in with us here but sorry that you had to find us. And real glad as well that you were able to have the surgery and that it went well for you. Thanks for sharing everything with us. Hope as well that your back surgery goes just as smoothly and that you are fully back on your feet as it were very very soon. Back pain is no laughing matter!
Please try and not focus too much on the past and the should have done this or thats as I would argue that that will not do you much good right now. You have so much to look forward to I would say!
I too am from the UK, Dundee in Scotland and my dad was diagnosed and treated up here back in 08. I’m guessing that you will have heard of AMMF in the UK, if not here is a link to their site –
Loads of UK specific info can be found there. Hope that you will keep on coming back here and post as much as you want to and I am looking forward to hearing more from you.
My best wishes to you,
Gavin