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Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: interview with patient having surgery for pancreatic cancer

Postby Juliana » Mon Feb 01, 2010 9:40 am

Hi,
There is also this gentleman on the site:

70yr old,had surgery and chemo and then decided to go down the alternative route (apricot seeds B17). You will only find his interviews if you type Pancreatic Cancer in the search bar.

http://www.healthtalkonline.org/Dying_a ... tic-cancer

Juliana
p.s. wish this site would provide an update on how these patients are doing, it's frustrating as we all know how things may change at any given time. I'm particularly interested in digestion changes, recurrence of cancer post treatment (especially time info) and of course how well the alternative treatment is going compared to orthodox (the above gent seems to have his under control).

SaschaSue
Posts: 4
Joined: Fri Jan 16, 2009 7:11 pm

Re: interview with patient having surgery for pancreatic cancer

Postby SaschaSue » Tue Feb 02, 2010 8:28 pm

Hi all,

I would just like to inform you that the following research group from Oxford University is adding pancreatic cancer to their list of health experiences on their website at http://www.healthtalkonline.org/

Healthtalkonline is the award-winning website of the DIPEx charity and replaces the website formerly at dipex.org. Healthtalkonline lets you share in other people's experiences of health and illness. You can watch or listen to videos of the interviews, read about people's experiences and find reliable information about conditions, treatment choices and support. The new pancreatic cancer section will be coming on-stream soon and has been partly funded by the actor Hugh Grant, and the founder of the DIPex charity Dr Ann McPherson, who has recurrent pancreatic cancer herself, is very keen to get this section going.


I have been helping them by providing them with a video interview about my experiences of pancreatic cancer (I was dx with PC in Aug 2007) so it can help others facing a similar situation but also it will be used by researchers who are conducting qualitative research into patient experiences - and naturally the more experiences we have then the better able they are to conduct this research.

The researcher I have met is extremely friendly and sensitive and she came to my home to video me - it took about 2 hours in total and I have had the full transcript back to approve before they go ahead and use the tape and any quotes from me.

I am now the patient representative on their advisory panel for pancreatic cancer and, along with clinical representatives, will ensure that the information that goes out to the public is correct and is a true reflection of patient experiences. We desperately need more people to come forward.
In order for the research to be representative of the UK population as a whole, experiences from all types of people from all backgrounds in all parts of the country are needed, so if you know anyone at all at any stage of pancreatic cancer who may be able to help, please, please ask them to get in touch.

Contact can be made directly to Dr. Alison Chappel at Healthtalkonline or myself, Ali Stunt - via PCUK (contact Salma for these contact details)

These patient experiences will be so valuable, not only to those of us who are patients, carers and friends & would like more information on PC, treatments etc, etc, but these stories will form the basis of research which may help others in the future. Please consider taking part.

Ali Stunt