Pancreatic cancer discussion

[Jan]

Hi This is my first posting to this discussion. I'm Jan. I was diagnosed 9 years ago with a benign cancer of the pancreas. I was fortunate that my surgeon did a pioris (?) saving operation (stomach saving). At this stage I am not a diabetic nor do I have to take emzymes, but I do not know what the future will hold. It is so very necessary to be able to speak to others who have been through the same experience. I know they are out there I just want to find them! I know too the predictions are not very good for those who have been diagnosed with this type of cancer, but you do need to keep positive. I have been involved with the Whipples Warriors, a support group for those who have undergone surgery either due to pancreatic cancer and pancreatitis. It has been difficult "growing the group" and finding others in the same position. We have unfortunately lost members due to the nature of this disease. There is a group of Whipples people in New Zealand (NZ and Aust) meeting in November and you all are welcome to go too! We need support groups as there are so many people out there who feel so alone with PC. I usually describe it as being like breast cancer was 30 years ago. That is where we are at. I know that research is picking up and more is being done on the medical front. I would love to hear from others out there and their thoughts. I would especially like for us all to meet up if possible! Keep smiling Jan

[margro]

Jan,sometimes we just want to talk without going further and I really feel like you put too much pressure on

[Jan]

Sorry Margo, that is not my intent. There are unfortunately still very few options of places to go and talk. I really wish there was more choices and more knowledge that we could draw from. I know support groups are not for everyone, the term alone puts some off. Over the 9 years it has been difficult finding others to talk to, getting doctors support for this group and finally difficulties getting a hospital venue afterhours, this resulted in meeting at others homes. There is a great need by people diagnosed with pc for support given the severity of the condition, the frightening odds and I remember too well the devestating feeling of being alone facing this. Yes, we need to be able to talk to each other, and I want as many options for others as possible, phone, email or face to face. We all have different needs in this journey and in order to make good choices for ourselves and our families we need to know what is available. We are very fortunate at this point in time as we have a "greenfields" position and we can lay the groundwork for others yet to come. What do others want our support choices to look like?