devoncat
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I will be blunt, it is hard to find someone who has been cured who has not had a surgery to remove the tumor, but this board is FULL of survivors. Our Jeff survived 10 years with the disease before passing recently. I am at a year and a half since my reoccurance and trust me when I say I am not going anywhere anytime soon.
Try to get more opinions about having surgery.
We have had several people here had chemo which shrunk the tumor enough to have surgery later.
Kris
I doubt they have ever given radiation in Kalmar for cc. That said, the oncology department is only about 4 years old so they have the newest equipment. I trust the radiologist to know if he is capable or not. Kalmars department is small, so when my doctor was on vacation, the radiation oncologist filled in for her so we already have a relationship. In fact, he was the one in Dec who said that they needed to put their thinking caps on because they thought chemo wasnt working so well, but I was still very much “healthy”. He said, that means “we do more, not less”. He is quite aggressive.
I really dont want to go to Linkoping. When you dont know how long youve got, you dont want to spend 5 1/2 weeks in the hospital 3 hours away from home. Besides, the doctors there are not “my” doctors, nor are the nurses. There, I am a patient, in Kalmar I am silly, laughing, fighting, tough Kris. It makes a difference.
Kris
Rick,
I bet the yellow is scary. I know how I feel when my bowel movements hit the light side…complete panic. I sometimes even make Hans look at them to decide if they classify as white.Hope the antibiotics do the trick. They are amazing usually. It is so encouraging how much better you feel after only one day on them.
Kris
Most injections, blood tests, and chemo are done through mine. When I am really sick, they also give me the food bag through it. Most of the dyes for the different scans are also given through it.
There is only one drawback. In Sweden (perhaps everywhere) nurses and techs have to be specially trained to use them. Sometimes this means I wind up with a nurse who has not been trained and I have to do things through the arm.
I love mine though it got majorly infected when I first got it so I have a beautiful big scar from where it would not heal. I would do it again though.
KRis
Rick,
Lets not put the cart before the horse! I had similar pain and fever and it was an infection which was quickly cleared with antibiotics. We always think the worst but hope for the best as patients. Hang in there and let us know what the doctor says. Crossing my fingers and everything else for it not to be serious.KRis
I just talked to my oncologist on Thursday about me starting swimming again. She was VERY pleased that I was thinking about it. Before my surgery, I swam regularly…just a couple of laps, then hit the whirlpool and sauna. I did notice that I gradually could do more laps without tiring out. I also slept better.
Kris
Jeff, I am definately keeping my fingers crosssed for a good scan. I am so glad Marc is feeling better and doing well. Hans and I understand about the guests and family. We have been running the Jurgens hotel for awhile. IT can be tiring but it is so nice to have ones family around. I think I revert back to an 18 yr old when my sister is here since we have so much fun.
Kris
People heal differently from surgery, but the whipple is really hard on the body. You might want to prepare her for a longer recovery period.
Things that can help…
Offer to do laundry. Bending is really painful for a bit and heavy wet clothes are not fun.Take her shopping. Again groceries are heavy and right after surgery, just walking around the store is exhausting. Since my second surgery, Hans and I have mainly stuck to the “little” grocery store in our neighborhood. I dont have to walk so far to get milk and lets be honest, I dont need a choice of 30 kinds of beans.
Audio books. I had the worst time sleeping in the hospital and they helped.
Pillow to hold agaist incision when she needs to cough.
If she has dogs, offer to walk them. If she has cats, offer to change the litter. She doesnt need to risk an infection from cat poop.
When she is out of the hospital, make a point to visit.
Let her be afraid. I get frustrated when people around me are so positive that there is no room for me to voice my fears. They are real and need to be said.
Hope that helps.
kris
Jemima,
It is time to start making calls and literally becoming a pest to the doctors…but always in a nice way. You catch more flies with honey than vinegar. They should have told you by now if it is operable. PErhaps the best thing to do is ask for copies of your moms scans and records and have then sent for a second opinion. Prof. Lodge in Leeds comes up regularly and I can recommend Prof Garden at Edinburgh Royal. He is a very kind man. I have a couple of friends who are doctors and they have all said that playing on professional pride is one way to get better treatment. No doctor wants another doctor peeking over their shoulder.Hope that helps.
Kris
Staging is hard to do until the patient is opened up and the extent of the disease is known. Both my initial cancer and reoccurance never showed up on any scans. CC is like that so the true extent of the disease can only be seen once open.
Biopsies can be tricky. Some believe that taking a needle biopsy can spread the cancer.
Dear Mimi,
I am sorry for your loss of an extrordinary grandma. The time you had together was very special. We are here if you need us.Kris
Andie,
Hipp Hipp Hooray! After 5 weeks in the hospital, I bet your dad is gagging to get home (like that British slang there?). I know I was after 4. I am so much better now that I am home. It is much easier to feel better when you can choose what and when to eat and sleep. I know it will be the same for your dad.Counting down to step 2!
Kris
Welcome to the site. You are in the right place if you want information…we are also good for support and just a good venting! I am sorry you needed to find us, but now that you have you are one step closer to information. And information is the key to the fight.
If you have specific questions, please ask.
Kris
Thanks for the encouragement. I am not sure I am quite back to the old fighting Kris, I need to many naps! But that will come. I have been cleared to swim once I finish this course of antibiotics so I should star5t building up strength again soon.
Linda, xeloda gave me severe gastric distress which resulted in a couple of week long hospital stays for dehydration. Smaller problem was the peeling hands and feet…to the point I lost my fingerprints.
Kris
