ccactive123
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Hi Randi,
I am delighted how many positive responses I’m getting when I expected a rash of “You’re a punk; listen to your docs and do what they say and don’t be a wise-ass.”
3 cancers?? Wow, what a record (that no one wants). You must be very strong. Am I right that it comes back in 2 years 80% of the time, in the next 3 18% of the time and only 2% of the time thereafter? I am at month 4.5 and striving to get to month 24 for a sort of milestone.
Glad you too were frustrated by stories without resolutions. But this site is full of informed users and people will to share their stories as far as I can tell.
I refuse to wither and decline. I’m going out in a sudden drop or staying around just to be aggravating. My second dinner will be titled, “I’m still around, so f**k you cancer, it’s you who can drop dead as I’m not going away quite yet”. All these cases of the hopeful eroding away before my eyes were just heartbreaking to watch or be part of and whatever happens to me, that won’t be it.
Good luck with counseling as good ones are surely needed. Alive means it’s definitely not too late.
I haven’t run in 9 years after a punk doc wrecked my foot. Up to now, 95% of my complaints were about that. It’s very hard to stay in shape when you can’t even walk right. But you’re right about being in shape. All the docs in Boston said I was right to be in top shape going into the Whipple. Those in medium shape come out wrecked and those in bad shape die on the table or are refused. It’s a long road back from a Whipple.
Best, Jeff
Hi Julia,
My biggest regret is never having been to England, and now that I get such thoughtful and articulate replies from Brittons, I really have to work to get there. In fact, if my tests ever show that I’m going south, I will activite my Big Bucket List immediately, and London will be my first stop.
I love that you liked my 1, 2, 3 Theory of life, death, and the in between. For those of us who have watched loved ones languish in 2, it’s easy to wish to avoid it at all costs.
Having a grave disease or being the care-giver to someone who does are different yet related. I admire your caring for your sister and hope she does well.
By the way, who amoung you out there is T3 like me, and who is extra hepatic like me? Who is choosing not to undergo conventional treatment like me and why?
Again, I find this group the snappiest and bravest of any group I have ever found on the internet, and if I had to have a deadly disease, at least this is something good that has come from it.
Best wishes to you and your sister,
JeffHi Tiff1496,
I don’t have a facebook page, so it wasn’t me. Thanks for reaching and feel free to be in touch on here. Or, at my private email: jefunn@sbcglobal.net.
Best,
JeffHi Karen,
I feel very alone in that I have not found CC people, Whipple survivors, let alone hand stand performers with my advanced level of CC. Maybe I could start off by communicating with your dad or with you more about your dad as the one Whipple guy I spoke to was 8 weeks in hospital with lung blood clots, re-infections, re-openings of the incision, etc. I was only 8 days in hospital and psychotic to get out. I seek fellow Whippleers. Help me find them.
Best,
JeffHi Marion,
Thank you for your kind words. I am terribly impressed with the spryness and eloquence of responses on this CC site. I don’t know what shell Karen was hiding in, but I’m glad she’s been pried out.
Best to all,
JeffHi Katja,
I always admired the UK system and am sorry to hear that it might be changing. The four masses appeared two and a half months after the whipple and were diagnosed with great confidense as large metasteses by five top onco radiologists, academicians, and clinicians. It was only Dr. Carlos back in Boston, the smartest doctor involved in this whole thing, who knew the right answers, and he hadn’t even seen me in two and a half months. The lumps turned out to actually be the vestiges of the gallbladder mischief in October which had set up four seeds in the liver which then expanded as infections, and then as my body conquered them, remained as a combination of empty space and cirrhotic-type tissue. Future scans will probably show they don’t change at all. If they DO change, then something else, and dire, is afoot.
But this was yet another, and terribly significant, example of how top docs can agree and be totally wrong and lead one to false conclusions and to embark on actions that are ill-founded.
I’m delighted to hear about your dad and hope I emulate him at a two-year point I hope to reach. The money aspect of all this is at least as terrifying and disgusting as the physical aspect and in some ways more challenging to deal with.
Thanks so much for your uplifting response.
Best Wishes,
Jeff
