alison

Jeff
i take your point that 2 national centres and 2 spcecialists would not be able treat everyone , The centres could be used as a resource for other hospitals for information and advice. If people wanted to and were able to attend one of the centres then great , but if not ,specialist help and advice could be given to the treating Dr . At the very least all cancer units should know how to acess the information
we live in London and Jon was treated by one of the best cancer hospitals in Europe and they had no usefull treatment options and were also not really interested in any of the research that we found on the Net
Jon was operated on by Prof Lodge after us finding out about him and asking for a referral.The Dr Jon was under had not heard of the Prof and his work.
I feel that national centres that are well known would help this process and speed up usefull treatment . It will be too late for Jon as he died in Dec06, but I really hope they help other people
I Know that in the UK treatment options are set by NICE guidelines and specialist centres will also help to develop and set the latest treatment options hopefully based on worldwide research
Alison

Prof L

You may remember my husband Jon , you operated in Nov 06 with unfortunately a bad outcome, but we were so pleased to find you after a lot of research by myself.

I think national centres would be a excellent idea , as you may recall we came up to Leeds from London after a referral from our local cancer hospital This was a world renowned cancer hospital , but they were unaware of you and your work in Leeds until we requested a referral ,and there was a very limited scope of treatment they could offer and all of it without any hope

I think that the distance involved was a minor issue for us , we went up to Leeds 3 times and had the outcome been good we would have travelled up for reviews post op as well.However saying that we were lucky to have some financial help from both our families to enable us to travel and stay in hotels .

Two centres 1 in the south of the country and 2 in the north may go a way to resolving some of this.I

I think that for a specialist service ,generally people would be prepared to travel a bit further

Another issue may be quicker acess to tests , Jon had abnormal blood liver tests, then had to wait 6 months for an ultra sound , then 2 weeks for a CT scan which then showed such a huge tumour that the person doing the scan was unable to hide his horror at what he could see on the screen ,not a pleasant experience for Jon.

Thank you for trying to set up these centres and and again thank you for your care of jon , mainly for giving him a glimmer of hope

Will these messages be forwarded to the DOH ? or do they need to be contacted directly?

Alison Moore

Hi Cherryle

My husband Jon died in Dec 06 from CC , it was our 21st wedding anniversary in April 07 .My daughters 16 and 18 bought me some flowers which was really nice . I had a quiet day nothing special , just remembered in my own way and have a bit of a cry. I would not have wanted my daughters to get a card from Jon for me to find ,that would have been about the only thing they could have done that would not have helped . I was glad the girls had rememebered the day ,
If there is a grave or stone you can visit that would be good take some flowers and have a chat , unfortunately we did not have that option ,I would have liked to do that with my girls

Hope this is of some help

Alison

Hi Helen
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
Alison

Dear Jules

SO sorry to read about your Dad, As I said before you and your Dad were so helpfull to Jon and I when we needed advice and I really admired your strengh and determination
My thoughts are with you and your family
Alison Jon’s wife

Hi All

We were told it was the enlarged liver pressing on one of the main nerves causing referred pain to the shoulder, I think it was the phrenic nerve A pet scan showed no evidence of any tumour anywhere but the liver.

Alison

Hi Geoff
I am so pleased to see that you are doing well on this treatment. I always look out for your posts.
Alison Jon’s wife

Geoff

i totally agree with all you say .

Jon was referred for a scan in July 05 and had in in Jan 06 ! Our GP did not think it was that serious I think and was horrified when he had to tell us the diagnosis in Mar 06. We were told the chemo would most likely have no effect at all ,that the tumour would not shrink to enable a resection to take place . I asked about the various drugs we had read about on this site, Avastin xeloda etc and we were informed he could not have them due to NICE guidelines .

We were lucky enough to find Prof Lodge on the NHs and as I said before despite the outcome it was the right move for us

I work in ther NHS I am a nurse and i agree with you, feel very let down . Jon was treated at one of the best UK cancer centres ,we never saw the same Dr twice no personal interaction at all
I do have to say that in Leeds everyone in the team from the tea lady to Prof Lodge was wonderful , such a difference attitude to us both

Rant over sorry

Alison