helenmorement
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Thank you for putting up this link, Marion.
We are working towards a countrywide list of specialists and centres – but it is slow going as we will only include details for those we have contacted, and that we are sure are experienced with cholangiocarcinoma.
Helen x
Thank you for your kind words, Malcolm.
And if there is anyone with whom the words “courage” and “vigour” should be associated, then you certainly fit the bill – as your fundraising climb up Pen y Ghent earlier this year as a celebration of life after cc surgery must surely testify:
http://www.ammf.org.uk/2011/04/19/malcolm-takes-ammf-to-new-heights
Helen x
Well, apparently certain areas in proteomic research are pointing in that direction – I thought I must have misheard, and asked at least twice for clarification – and that’s without doubt what he said!!
If I hear any more I will keep you posted …
Thank you for your kind words, Gavin, Lainy and Marion.
As you will know, the cc situation can be very different here in the UK compared to the US, especially with regard to treatment. We know that it is possible for more aggressive, more ‘boundary-pushing’ treatment in the US – and we watch the statistics carefully! The NHS can be a wonderful system, but funds are limited and use of them is strictly monitored – but then again, we don’t have the insurance difficulties that you guys experience!
Marion, like yourself, I will remain a ‘warrior for the cause’ and hope that one day in the not too distant future we will see the answers we all hope for – both sides of the Atlantic!!
Helen x
Thank you so much for your kind words, Gavin and Marion …
I have never thought of myself as a warrior, Marion, but I quite like the idea!! And I guess what we are all involved in is a bit like a war – many battles and skirmishes to be overcome before we achieve that victory.
Helen x
Hi Jules
I’m sorry to hear you have been so unwell, but I think you should be reassured that your doctor is being thorough – your symptoms could be caused by so many things and they need to rule some out to get to the actual cause.
Jim is right about the need to go to a centre of excellence and, even with the NHS, you have the right to ask to be referred to a named specialist of your choice …
If you think I can be of any help, please don’t hesitate to contact me via AMMF’s website.
With positive thoughts
Helen x
Hi Jukka
Just for your information and to follow up Marian’s kind mention, AMMF is the UK’s only cholangiocarcinoma charity, working to raise awareness, provide information and to support research where we can. Our website is:
and you can also visit our Facebook page.
Approximately 1,500 are diagnosed with cholangiocarcinoma each year here in the UK and, although there are a number of specialists who have experience with this disease, it can be very difficult for people to find them – something we are trying to change by setting up a list of these people, and centres of excellence for treatment, on AMMF’s website.
And it does seem that treatments offered in the UK do vary from those offered in the US and are often more conservative – for example, the Mayo Clinic seem to be achieving some excellent results using liver transplantation in suitable patients, whereas here in the UK this form of treatment is not considered at all for cc.
The discussion boards here on the Cholangiocarcinoma Foundation’s web site provide an excellent way to meet people from all over the world, including several from the UK, and I hope you will get some discussions going with them.
With kindest regards and positive thoughts
Helen
Thank you so much Kate and everyone who joined Malcolm’s climb up Pen-y-Ghent yesterday in the sunshine – what a symbolic journey it must have been!
All of us at AMMF are delighted at the awareness that has been raised and, of course, with the substantial donations that are coming AMMF’s way – all of which will be used to fund research into cholangiocarcinoma.
Helen xx
All of us at AMMF are thrilled to have Malcolm join our stalwart band of fundraisers!
It’s wonderful news that his one year scan is positive – and that he is so determined now to help others with his fundraising efforts.
Thank you Malcolm – and really looking forward to those photos!
Helen x
Dear Andrea
I am so sorry to hear of your father’s passing, but it is good to know that he wasn’t in pain and that both you and your Mum were with him.
I hope you take some comfort from the fact that you have always done all you could (and more) to support your Dad through this journey, right to the very end.
Sincere sympathy to you, your Mum and all your family on your loss, and sending positive thoughts for strength to see you through the next days …
Helen xx
Dear Andrea
Please know thoughts and prayers are with you, your mum and your dad, during this difficult time.
Helen xx
Dear Andrea
I can only agree with everyone else’s comments, and with Lainy’s comment re medication to calm him down. I think when someone is as ill as your Dad is, then the brain fires off all sorts of signals that lead to the sort of behaviour that you just don’t recognise as being them.
This is all just so hard …
Love and prayers coming your way.
Helen xx
Hi Marion
Congratulations to Sara and Rick on organising today’s webinar, and to everyone involved with the Cholangiocarcinoma Foundation – your work is inspirational, and it’s so heartening to see things moving forward.
Thank you for the opportunity to attend today.
With love and positive thoughts for everyone in our ‘cc family’ wherever in the world you may be!!
Helen xx
Sara – if it’s any use to you, AMMF has put together an A – Z list of fundraising ideas which our supporters can download from our website.
You can get this from the following page:
http://www.ammf.org.uk/get-involved/
Have a look – it might give you some ideas!
Helen x
