friendship wrote:... I will surely get in touch with people who have had to deal with SRC...
One way to find people who have had to deal with SRC is to look at some of the past Signet Ring Cell threads on this forum and see who started each thread. Some of those members are still around and are active on this forum.
It would be good if you could make contact with a few of them and form a small discussion group.
Here is a link to some 200+ threads that have been started in the Signet Ring Cell area. Signet Ring Cell threads on this forum
The way to use this link is as follows: First, be sure that you are logged in when using the link above. You need to be logged in for the username links on each thread to be active. (If you access the above link as Guest, you will not be able to see the details or profiles of the users.) You can then access each thread, one by one, and look at the user who created that post. (This will be the highlighted name to the right of the screen, preceded by the word "by".) Once you have clicked on that username you will see the user's profile, including such information as date joined, date last active, etc. The profile may also show a Signature, in which case you can get additional information like DX, types of treatments received, etc. From this information you can then prepare a short list of members who have had to deal with SRC and who have been active on the board in the past few months. Then from this list you can decide which members you might want to contact.
I hope you are able to find a few who are willing to form a kind of mutual support group. There needs to be such a group in the SRC area. I think you will feel better once you have made contact with a few SRC patients or caregivers who can be a resource that you can turn to whenever you have questions.
Warning: One thing should be mentioned, though, about generating a high volume of PM messages. There is an absolute limit of 100 messages for your PM Inbox. If you exceed the maximum of 100, your whole PM system will lock up and you will not be able to send or receive anything anymore. You can read about that problem here:https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59694&p=474269#p474269