helenmorement
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“And, what better testimony is there than that coming from a patient.”
That is very true Marion, and has given me food for thought – maybe in time, we can start a sub section within AMMF’s website where people can leave their recommendations …
Helen x
Thank you Gavin and Marion.
As far as the specialist information on AMMF’s site is concerned, the details we are including have been as a result of direct contact with the hospital/team concerned – so it’s slow going, but we want to be as certain as we can be that the information we are providing is as accurate as possible. We will be adding to this information as new details come in or are confirmed …
Climbing that mountain, and looking for the miracle!!!
Helen
My dear Lainy
My heart really goes out to you, reading that your darling man, Teddy, has passed. But you were with him every step of the journey, to the very last – and I feel it has indeed been a privilege to share a little of that journey with you.
Do you know the piece entitled “The Ship”? I will do my best to paraphrase:
A ship sets sail from the harbour and those on the quayside wave farewell until it reaches the horizon, passes from view and seemingly is gone. But, as those watching and waving farewell lose sight of it, there are others beyond the horizon seeing it come into view, and they welcome the ship into harbour with great joy – safely home!
Teddy is indeed now safely home.
With love to you and all your family.
Helen xx
Hi Marion
This information is something that is so badly needed in the UK. AMMF (the UK’s cholangiocarcinoma charity) is working on providing a database of as many specialists and where they are based in the UK as we possibly can.
Our new website has just gone live, and the section on UK specialists is on there, and will be expanding as more information comes in.
For anyone wishing to access this information, please see http://www.ammf.org.uk.
Marion , thank you for the wonderful resource you provide to the cc family with the Cholangiocarcinoma Foundation website …
Helen
Dear Lainy –
This is just not how it should be, and my heart absolutely goes out to you … Teddy should be getting whatever he needs right now to keep him as pain free and comfortable as possible – and they should know all the signs etc and deal with things accordingly.
I hope you managed to get some rest and that your talk with the doctor has positive results.
With love and positive thoughts for you both.
Helen xx
Dear Lainy
Like everyone, I have been thinking of you and Teddy so much just recently. Teddy’s needing to tell you about the TV/movies just speaks volumes – his way of being so caring and loving, making sure you were OK with everything.
The love you so obviously share is just so precious and so special – and this will never, ever change …
I want to find the right magic words to make what you are going through now a little easier – but there just aren’t any, so I will just send love, prayers and positive thoughts for you both.
Helen xx
Hi Lainy
Just wanted to pass on good wishes and positive thoughts to you, along with all the others.
Fentanyl patches helped Alan so much (incredible how powerful they must be), so I hope it is the same for Teddy.
Your comment, “I still look at Teddy and think he is cute” is just wonderful and brought a tear to my eye. Lainy, you are one special lady!
I wish you love, strength and courage for the last part of this journey – and for Teddy, peace.
Helen xx
Dear Andrea
I don’t get on this site as often as I would like, so have only just seen the follow up from your visit to Professor Lodge.
I am so sorry that he wasn’t able to offer anything positive in the way of treatment, but you have done absolutely everything you could over the last while to try to help your father …
When Alan decided to stop his treatment he was able to accept the fact of what that meant far quicker than I did. But actually, within a fairly short space of time, we found we reached a sort of calm place after all the struggle to find treatments, the repeated hospital visits, the side effects of treatments and so on. For the three months that were left to us, because we had accepted that time was now limited, we were able to talk very openly about things and, like Lainy and her beloved Teddy (all Lainy’s words seem come straight from her heart!), we became closer than ever and I have been left with such treasured memories of that very special time.
Alan was not cured of cholangiocarcinoma, but he reached a place where he was definitely healed – and I hope with all my heart that your father reaches that calm place too.
Things will settle a little as the days go by and, yes, it will seem strange at first not to be searching around for the best things to do, but making the most of every day will be the priority now.
Andrea, if I can be of any help to you, please don’t hesitate to contact me – and you might like to have a look at the Penny Brohn site (see helpful links on AMMF’s website) – they have so much to offer in the way of wonderful holistic advice, and they do have a helpline …
With love and positive thoughts
Helen xx
Dear Lainy
The generosity of spirit you show in sharing yours and Teddy’s journey is inspirational. Your love for each other shines through your words and, by finding the good and the positive in every step of this journey, you truly help everyone …
Helen xx
Hi Gavin
I haven’t been on this site for a while, but it must be fate tonight!
Firstly, I hadn’t seen the info on Cetuximab, and that does make interesting reading, and secondly the first link on the Google page your link took me too is an article in a Bournemouth paper about Helen Smith, a young woman who died from cc a couple of weeks ago, and whose family is raising lots of support for AMMF. (Nick, Helen’s husband contacted us last week, but I doubt I would have seen the article without your link.)
How strange is all that!!
If you don’t mind, I’ll put a link on AMMF’s FB page to the Cetuximab info and mention that you ‘discovered’ it.
Helen x
Hi Lainy
I haven’t been on this site for a while – but was so pleased to see you here and still so incredibly positive. Sounds like your Thanksgiving is going to be wonderful! Love and positive thoughts for you and your Teddy.
Helen xx
I heartily second Gavin’s sentiments, and many thanks indeed to all concerned.
Dr Choti’s closing remark really made me smile, “… let’s try to lick this disease.”
Amen to that, Dr Choti!!
Love and positive thoughts for everyone.
Helen
