Unusual Cholangio Guy – Survivor Against the Odds
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Hi Jeff,
Welcome to the site. Sorry that you had to find us all but glad that you’ve joined in with us here as you have come to the best place for support and help out there for CC. And thank you so much for going into such detail and sharing your story with us all. I love your writing style and your sense of humour and please do not change that at all! And no, I do not think that you are coming across as glib at all.
A sense of humour is such a great thing, and is nothing to apologise for. My dad too had a good sense of humour and was a great teller of bad jokes. He found each and every one of them funny, even if we didn’t at the time! As for doing handstands, well I am 40 and tried doing that many years ago with disasterous results, so never again!!! So good on you for being able to do them and for putting me to shame on that one!
Looking forward to hearing more from you and reading your posts, and please know that we are all here for you. And if you do come to the UK, then you really have to come to Scotland!!
Best wishes,
Gavin
Karen…I have been accepted in the DIA Patient Advocate Fellowship Program and will arrive on June 23rd – leave again on June 28th. The schedule is tight however, I must and I will find the time to meet up with you. Let’s stay in touch. You have to tell me all about your yoga sessions and more.
Hugs
Marionjeff,
Welcome. I am also a cc and whipple survivor.
I do hold many of your attitudes toward life. I have had cancer 3 times and each time., up until this one, the treatment was not bad and I was able to move beyond it. This cancer is harder because of the bad stats, but I am a 2 year survivor and moving into the better stat side of things.
I had your same frustrations with unfinished stories…I even went so far as to google and facebook search people in the “faces of cc” to see where their story ended (or if it had). I stopped that after awhile.
I have never been able to do handstands but I have run a marathon and try to stay active. I have perfected the art of sitting on the couch and watching tv
but honestly I think being in shape when getting this disease is key to surviving with good quality of life intact.I am also getting a graduate degree in Counseling at the age of 56 and changing careers. it’s never too late to pursue a passion and change course.
Love your attitude, it can only be a positive thing in your cc journey.
-Randi-
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,
JeffOkay you guys! (Marion and Jeff) I don’t write much these days because I find it very hard to express my feelings, but I do read here everyday. I feel so connected and yet at loose ends…very hard to convey. Jeff you will probably be hearing from Lainy as her husband had a whipple. Rob (my husband) did not qualify and he opted for cyberknife. Marion – you betcha I will see you when you come to Philadelphia. When are you coming?? There is a wonderful event on the steps of the Art Museum (you know…Rocky!) on May 20th. We do yoga on the steps (outside) in honor of breast cancer survivors…it is very humbling. Last year there were 1,000 people – quite moving. I would love to share the experience with you.
In peace,
KarenHello, Jeff. I’ve never been able to do handstands, so I was already in awe, the minute I read that you can
Welcome to this amazing family, without which I would have gone totally loopy over the past 2.5 (nearly 3) years since my sister’s diagnosis.
I really love your attitude. I’ve had a very hard few days and your amazing approach to 1, 2 & 3 lifted my spirits immensely. I’m sorry you had to find us, but I’m glad you did. Please keep in touch.
Like Katja, I’m grieving the imminent loss of our National Health Service but it must be so hard to have to juggle a system like you describe.
My best to you
JuliaHi 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 Jeff! Glad you found us, sorry you had to.
Did you post on the CC facebook page a few days ago? If so, I sent you a friend request. I haven’t heard back from you!
Hi 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,
JeffKaren….nice to see you coming out of obscurity. How are you? BTW I will be in Philadelphia in May and hope to meet up with you.
For those that don’t know – Karen has donated two CCF banners which have travelled along to many conferences we attend. They are really holding up well, Karen. Thanks again.
Hugs,
MarionHi Jeff,
I love your attitude – wonderful. It makes me so sad that people in the US end up spending their life savings on being ill. In the UK we are losing our national health service which is also sad.
My dad had a whipple like you and has just had his two year clear scan today.
I find your four masses in your liver baffling – were these seen immediately after your surgery?
I look forward to reading more from you and hope that something gets resolved quickly re your liver…
Here’s to no 1: life as long and as happily as possible. You’ve certainly made me stop and think about valuing each day.
KateJeff….Nice to see you finding your way to our site. When cancer touches our lives, it forces us to take a good at what means most to us. You have done so. Please, stay with us. We care, we love to be inspired, and we are connected in a special way.
Hugs,
Marion
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