November 23, 2007 at 4:14 pm #17722
So sorry to hear about your son Alan – no one expects to see their child leave this world before them, and to such a cruel disease. Cholangiocarcinoma seems to be no respecter of person, no matter what their age is, how much they are loved, or how important they are to their family. My heart goes out to you.
I look forward to your contact through the AMMF site (http://www.ammf.org.uk). We are doing what we can to raise the awareness of cholangiocarcinoma here in the UK (the incidence of which is increasing), but it is difficult …
HelenNovember 23, 2007 at 1:15 am #17721teresaMember
Hya Helen I live in Birmingham.
My son also an Alan died on the 30th April 2006 in just 8 weeks. Our local doctor and our main hospital the Queen Elizabeth were absolutely hopeless with cc. Alan told the professor that it was barbaric. ( See in rememberance) A fantastically fit and healthy young man who was in his prime and in his own words so happy with life.
I will contact you through your site. I have been raising money and supporting our local hospice as they came out to us at any time i.e whenever we required their help. They were magnificant.
I too would like to help your charity as I have been so consumed with grief, anger and rage. He really was such a hardworking, helpful and resourceful young man. As you have commented so good in so many ways. love and light Teresa.November 12, 2007 at 2:14 pm #17720
How lovely that you managed to have that holiday to look back on! And you are right that Christmas will be especially hard for your children. My son is now 25 (just) and was 18 when Alan died. He had seen his father suffer so much (15 when Alan was diagnosed), which is just another aspect of this cruel disease. I sometimes wonder if I was any help to him at all with his grief, as I was just so overwhelmed with my own …
Sorry … beginning to ramble a bit.
Back to the present – We are just putting together the next AMMF newsletter, which will be printed in the next few weeks. As you are in the UK, if you would like to receive a copy, please contact me through the website, http://www.ammf.org.uk.
HelenNovember 8, 2007 at 5:05 pm #17719alisonParticipant
Hi Helen and Kris
we were lucky to have a holiday already booked for last year , 3 days after we got the diagnosis in March we were due to fly to Tobago for a friends wedding , there were about 20 of us going , we ummed and ahhed a bit , but after a discussion with our GP and some internet searchs we decided to go and I am SO glad we did , we all had a great time and that holiday will be talked about for many years .
Jon died on 4/12 so christmas as you say will always be hard , especially for my children16 and 18 now
And to you Kris glad to hear you are doing well
AlisonNovember 8, 2007 at 4:02 pm #17718
Thanks for that.
I see that you have had cc – I send you my very best wishes that you continue to be well.
HelenNovember 8, 2007 at 3:46 pm #17717devoncatParticipant
Not from England, but lived in Scotland for 7 years and had my surgery in Edinburgh with the Fab Professor Gardin. Good to know about your site. I know there are plenty of people in the UK who will find this wonderful.
KRisNovember 8, 2007 at 3:35 pm #17716
Good to hear from you – but so sorry to hear about Jon. Alan died on 21st December 2000, so I guess we are both always going to have a hard time at Christmas.
We were lucky enough to get three years after the diagnosis, with the chance to take a couple of holidays and store up some precious memories – not that the memories from the ‘normal’ good times aren’t important but, somehow, when you know the time is limited everything takes on a different perspective.
Setting up the charity and working to raise money has helped me to keep positive, and although it sometimes feels like throwing a glass of water at a volcano, I will keep on doing it!
HelenNovember 8, 2007 at 3:06 pm #17715alisonParticipant
I too live in England .
Alans story is very similar to my husband Jon who was 45 ,he also had a gastric bug and went to our GP who found his liver to be very enlarged , various tests and scans later he was diagnosed with CC , he had chemo with no effect . We too , were lucky to find a surgeon in Leeds ( advice from this site ) we live in the south of England , who could offer us no guarantees and very poor odds , but Jon decided to take the chance he unfortunately died 20 days post Op in Dec 06 ,9 months and 1 day after his diagnosis
I wanted to donate money from the funeral to a relevant organisation , and luckily there was one at the hospital in Leeds into research in liver surgery , but not specifically into research into CC
Well done for founding this charity
AlisonNovember 8, 2007 at 1:24 pm #852
I was browsing the internet today looking for new info on cholangiocarcinoma as it is so much in my mind because it is just coming up to 10 years ago since my husband was diagnosed with this disease … and I came across this site for the first time.
Alan was 49 and perfectly healthy until feeling he had some sort of gastric bug. Cutting a long story short, within a couple of weeks he had been diagnosed with cholangiocarcinoma and told there was nothing that could be done. Fortunately, within days we found a surgeon who gave us some hope and who was prepared to operate to remove the tumour but, unfortunately it was attached to the portal vein and he couldn’t get it all away. Alan then had chemotherapy and radiotherapy and it seemed all was well for a few months, and then it came back … Two more types of chemo were tried but in the end Alan felt he couldn’t take any more and stopped all treatment. He didn’t want to see the inside of a hospital ever again, so with great support from our doctor, family and friends, he was able to spend his last three months at home with me and our son, Tom who was 18 at the time.
During the three years Alan was ill we investigated every treatment imaginable, and found there was very little that offered any specific hope. We talked about finding ways of raising money to fund research to hep others who found themselves in our position, but because of the nature of the illness, life soon became too full of just trying to keep things together to do anything about it.
However, after Alan died I decided to do what I could and set up a registered charity here in England, AMMF (The Alan Morement Memorial Fund, registered charity no 1091915) to work towards raising money for research. The charity is small, but we are doing what we can – anyone interested can have a look at the website, http://www.ammf.org.uk. There are links to helpful sites as well as information on what we do to raise money, and where it goes.
After reading the various posts today, my heart goes out to absolutely everyone who is going through this horrible disease, or is trying to care for someone with it, or who has lost someone to it. Time and again the saying goes through my mind, “why do such bad things happen to good people?”
If there is anyone in the UK (or, of course anywhere else!) who would like to contact me, I can be reached through the website, http://www.ammf.org.uk.
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