My Dad
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Hey, Irish! What FABULOUS news. WOW! I do think it is very smart of you to still delve further as you want to make absolutely sure that nothing is lurking in dark spaces. In the meantime I would say enjoy! Thanks for the compliments but I really and truly feel I get so much more out of this Board than I give, believe me it is truly selfish. I also always say that our family is so awesome, smart, kind and caring. We have members from all over the WORLD and if our members ran the world what a great place it would be! Please though continue to keep us in your loop about your Dad!
Today we got news. A letter was issued to my Dad on the 29th but still hadn’t arrived today with the holidays.
He got a call this evening telling him that the bile duct mass was not malignant. He forgot to ask about the gall bladder polyp but as it was not mentioned the assumption is that it was ok. They appeared to give the all clear on his liver saying it was normal and the fuctions were improving.
There is still something seriously wrong with him and many Cancer type symptoms that remain a worry. The next area of investigation will be his Pancreas and he will go to the Mater Hospital in Belfast for further investigation.
I have massive issues with the message delivered by the consultant on the 16th of December. She put my parents & us through hell.
But right today today’s news could not have been better and one thing I’ve learnt is take each day as it comes and be thankful if your loved ones are around ; who knows what tomorrow will bring for any of us.
I had never heard of CC prior to the 16th December and it has filled my every waking moment (and some sleeping ones too) since then. This ‘beast’ and the downright human decency & compassion I found here has left an indelible mark on me. I commit to remember all CC patients and caregivers past and present in my thoughts and prayers. I also commit to doing my small part to raise money for the Foundation and the excellent AMMF in the UK.
I came here to educate myself and prepare for the worst whilst hoping for the best. I did that in a very limited way and had prepared my brother to support my parents as I thought later in the week as well as having a ‘Plan B’ (SIRT).
I have to call out three people in particular – Marion , Lainy & Gavin. THANK YOU.
Gavin wrote:Mac,Helen at AMMF will be of great help to you in seeking any treatment options etc that are specifically in the UK. And without wanting to put words in her mouth or anything like that I am sure that she would be very keen to help you if she can.
Gavin
Gavin I mailed Helen via info@ammf.org.uk quite a few days ago but have heard nothing back yet. Of course the time of year might be a factor. Is this the best way to get her?
Update 3th Jan. Got a really helpful reply and the good news is that there’s a guy in Belfast Helen personally recommends. So pleased about that as I’m not sure Dad or Mum are up to cross water travel and all that that entails. Thanks again Gavin. Out of all this darkness it’s lovely to come across so many genuinely good and caring people across this world of our’s.
If only it was as easy as slaying a beat. I did mean beast.
Hoping and praying 2016 will bring my family some form of good news.
Thoughts also are with all those affected by CC as we approach a new year on this side of the world.Hi Mac,
That sounds like a good plan and I do like how you are being proactive in all of this. The more treatment options you can find the better for your dad. Helen will be a great help to you with recommendations should your dad wish to seek treatment here in the UK somewhere.
Slaying the beat, yep, right up for that plan! Please let us know how everything goes.
My best to you and your dad,
Gavin
Scott apologies for delayed response & thank you.
Gavin I am going to reach out to Helen this morning. Right now MY plan is to get the local diagnosis but get Dad to King’s College London. Seems to be his best bet and gives us the best chance to ‘slay the beat’ to steal Scott’s phrase.
Mac,
Helen at AMMF will be of great help to you in seeking any treatment options etc that are specifically in the UK. And without wanting to put words in her mouth or anything like that I am sure that she would be very keen to help you if she can.
Gavin
Marion I have already heard of you!!!
Thanks for the welcome and the useful information.
AMMF is already on my radar.
Sorry for the late welcome. Much is still to be confirmed by biopsy and yes, this is a difficult cancer however; many times patients respond well to treatment and might treat their cancer as that of a chronic disease.
Given the fact that it is a rare cancer, you must search out specialists treating a high volume of this type of cancer patients.
Helen, Founder of AMMF, provides the most accurate and up to date information for UK residents.
http://www.ammf.org.uk/Specialists with an interest in cholangiocarcinoma and where they work (UK)
http://www.ammf.org.uk/cholangiocarcinoma/specialists/Specialist Treatment Centres
http://www.ammf.org.uk/cholangiocarcinoma/specialist-treatment-centres/Becoming an educated advocate is of high importance. All of us on this board are here to help you get there. Additionally you would want to take a look at the below link:
http://cholangiocarcinoma.org/newly-dx/Most of all, stay hopeful.
Hugs,
MarionHi Mac, Great name!!! My 7 year old is Mac too. I think you have the right attitude towards slaying this beast. Having a positive attitude and outlook will put those close to you at ease, and everyone will be pulling on the same end of the rope in no time.
Me and my family and friends have chosen to only look to tomorrow, and to spend zero brain time worrying and stressing over yesterday and things we cannot control. Be it family, friends, co workers, doctors…anyone who crosses your path, Make your intentions known. We got this.
Gavin thank you for your kind words.
I’m one of five and we each have our own way of getting through. Mine is to educate myself and ‘fight’ until it’s done but never forgetting my Dad and Mum are the ones who will drive our approach. I am here thanks to my wonderful partner and am here because I personally need to be.
Hi Mac,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your dad and what you are all going through right now with all of this. I can so relate to your situation with everything as I was there where you are right now with your dad myself with my own dad back in 2008. Head spinning with having to take all of this bad news in and everything else. Yep, exactly where I was as well with my dad.
I am so glad that you have joined in with us here on the site as I know that you will get tons and tons of support from everyone here. We so know exactly what you are going through with all of this right now and you are not alone in this anymore, we are here for you. And as far as the whole being from a wee country goes, yep, got that too as I am from Scotland and my dad was diagnosed and treated up here as well. We may be wee as it were but us Irish and Scots can kick ass big time can we not!!!
My dad had just recently retired from his work as well when this CC showed up. Nearly 50 years he put in with the same employer as well, one job he had in his life. So the whole looking forward to life part after retirement I can get on board with as well.
You are right in that we are one family from all over fighting this and now you are part of this family. I sure wish that you didn’t need to join our family but you know what I mean about that. Please keep on coming bakc here and keep us updated on everything and if we can help we will do. Just ask and we will do what we can.
My best wishes to you and your dad,
Gavin
Mac, I know but we have had some members from Ireland. I think if you type Ireland in to our Search Engine above some posts will appear from those members. Perhaps you can find someone near you.
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