medi-go-round
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Thanks all for your support and knowledge. I now have a glimmer of hope that we might have a bit more life, rather than the current ‘state of play’. I do hang onto the idea that yesterday there was no light, and today there is.
Thanks Lainy and all the moderators for your efforts here. I for one am smiling because of you.
Thanks
Kearton
Hello Kearton
I wanted to join in welcoming you to this wonderful site. You’ll get loads of support here, so please come back often & tell us how your lovely lady is getting on.
With all best wishes to you both
JuliaHello Kearton and welcome to our little world. My husband is a 4 year Whipple survivor. A Whipple is the largest surgery there is to the human body. Not life threatening but huge. It takes a LONG time to recover. The biliary leaks go along with the territory. Teddy had developed a tiny hole at the resection and went in to rehab on nothing but an IV for a month…no food or water. The hole healed without further surgery. I might mention that his first Whipple was aborted and 3 weeks later he had the full monty. His was contained in the bile duct valve. 5 doctors (Oncologists, Radiologists, Surgeon) all agreed that chemo will not work in the bile duct area after a Whipple. He is now 77, golfing and looking for a part time job. The CC returned last year (where his duodenum used to be) and he had Cyber Knife and zapped it. It has returned again but is very small. He will get a PET Scan in December and will probably have Cyber Knife again. We know it will keep returning but as long as we can ZAP it we are good to go again. His regime is LAB work monthly and Oncologist every other month. I am repeating his story and continue to do so as I feel his is a story of hope even thought he went through hell. Funny, our surgeon too was so happy with his work and rightfully so.
Have you addressed the low iron and etc with the doctor. There are things they can do for that. Have they said what is causing the biliary leak?
Please stay strong as this recovery really takes a long time and just when you feel it’s not going to work, she will start improving. Please keep us posted.Hi Kearton,
I too am glad that you have found your way to this site and also sorry you have needed to. This is a great group of people, all of who know what you are going through. It sounds to me like you are doing a good job dealing with a very bad situation that no one every thinks they will be in or want’s to be. Come back often. Everyone here is so helpful & supportive. Take care. My heart goes out to both of you.
Darla
Hi Kearton,
Welcome to the site, although I am sorry that you have to be here. It is indeed hard watching and caring for someone you love go through all of this, and yes, it is also hard not to get frustrated about everything. My dad was diagnosed last year and I am his carer. I am sure that you are being supportive enough for your partner and that you will find the strength to be there through all of this.
I hope you will come back here as you will get a load of support from us all.
Best wishes
Gavin
Hi,
What a stressful time for you,it really is such a challenge,so so difficult but you are doing well seeking out this website and gathering some support JanetKearton,
I am sorry to hear you have found your way to our board but I hope we can provide you with comfort and company. I can hear the devastation in your voice, I know the speed with which this disease takes over the body makes it hard to wrap your head around everything, especially trying to learn about this complicated cancer and the treatment options. I know this is very hard but I was my mother’s caregiver and one thing I learned from this cancer is that I am more capable than I thought I was, and you are, too.
Patty
In two and a half months my partner, my soul mate, has gone from well to, well, to the dogs, so to speak. Two and a half months ago she started becoming jaundiced, and after a swift progression of scans ended up in Melbourne for a PTC, which turned into a ‘whipples’.
She is classified as T3,N1,Mx, and is slowly recovering from surgery, having been slowed by a biliary leak.
I have been progressing through the pathology report, as it seems to only stable information I have. The surgeon is happy with his work, but the oncologists are reticent to supply any real prognosis, proposing Gemzar chemo as the treatment.
She has two drainage tubes still inside her, has very low hemaglobin, iron and potassium levels. I suspect she is still bleeding internally, albeit slowly.
She wasn’t well enough to start chemo last week, and I don’t know when, or if, she will start it at all, as the idea of spending four months of the last six-twelve months of her life as nauseous and tired as she is now has little appeal.
I keep trying to think of how lucky we are to have the time to prepare, something that so many others who lose their loved one don’t get the opportunity to do. But it is hard watching and caring for someone that is fading before my eyes, hard not to get frustrated, hard to be strong enough, hard to be supportive enough.
Thanks to all those who have shared their stories here.
Kearton
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