Post your suggestions here.
Have a suggestion for The Stroud Foundation?
(6 posts) (3 voices)-
Posted 1 year ago #
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Tara,
I think that your website is great and easy to navigate around - as far as I know there is only one other website like this in the uk, and the moew information there is for people affected by CUP the better.
Perhaps you could work together and share resources/information and promote each others work and fundraisers and then the Stroud Foundation and your work can reach us in the UK too!
They are http://cupfoundjo.org
Love,
Natalie
Posted 1 year ago # -
Hi Natalie!
Thank you so much for your post. I hope that our website has been helpful to you. I have, in fact, been in contact with the director of Jo's Friends for the last several months. Before we started our foundation, I found him and was able to discuss a little bit about running a foundation, as well as specific CUP medical information. We do keep in touch and it is my goal one day to join together for a global initiative. I appreciate you taking the time to make sure I knew about them. I do believe as well that we are the only CUP foundations in existence.
Thanks again!
Tara
Posted 1 year ago # -
Hi Tara ,
Thank you for having such a site for CUP patients to share their experience and give each other support. Being a caregiver rather than a CUP patient I find it very comforting to know that there are other people out there willing to share their experiences which provides others with much valued information. As mentioned elsewhere on the site I am trying to establish how much awareness there is about CUP in my City and have so far spoke to professionals who think that CUP (and other cancer) patients do not want to know too much about their cancer and do not wish to receive literature
from clinics etc. I was quite surprised to hear this as when my wife was diagnosed with CUP I was desperate to find information as to me information is powerful to help cope with situations that we find ourselves in and to raise that all important awareness and not to hide away from things. I do believe however, that a minority of patients may be too afraid and not want to know too much. How do you and other members of the site feel about this? Do doctors and clinics in the U.S. promote awareness and provide cancer literature to patients freely and openly? There are of course many cancer charities who provide excellent advice and literature on most cancers, but is it reaching enough cancer patients? Many people do not have or know how to use a computer and therefore may not be aware of what advice is available and need to have this information available at the point of service. I appreciate that, like myself ,many people do not take in everything that a doctor tells you at consultations but you should then be able easily to obtain that information. Thank you for listening and I would love to hear members views on this.JimbePosted 1 year ago # -
Hi Jimbe!
Thank you so much for all of your posts to our site. I am so sorry to hear that your wife is dealing with such a terrible disease, but I am hopeful that one day we can end CUP around the globe. I am currently in the process of getting literature into oncology centers around the US, as I think it is vital to spread the word through the doctors to their patients if we are going to make an impact. In my experience, many people don't even know CUP exists until they or someone they know is diagnosed.
Our site is relatively new, and it is my hope to have this forum become extremely active to promote CUP and support those affected. Please continue to post updates about you and your wife. If your story helps just one other person, it's worth it... and likewise, I hope someone else's story helps you. Thank you and best wishes.
Tara
Posted 1 year ago # -
Hi Tara,
Thanks for your kind thoughts.Looks like an international problem regarding lack of knowledge of CUP.Hopefully we can all change that. Good luck with everything you are doing. JimbePosted 1 year ago #