frustration reigns
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Grrrrr – I’m so sorry to hear about the doctors’ “oversight”, Kris – you must be SO frustrated. Good Luck for a FAST turnaround, so your radiation therapy can start asap.
Julia
Kris,
Well then I hope Kalmar is able to do it. Sounds like you have a very good radiologist. That means alot. So does staying home. I hated being away from home and we drove back and forth about 3 times a week as it was only 2 hours away.
Even though it was a very difficult time for me, I would have never had my radiation here. Some of the doctors here seem to get bent out of shape when you tell them you you have been going to Mayo and will not even call Mayo for consultation. Happened to me when I was hospitalized here. I fortunately now have a general practitioner who calls Mayo anytime I see him just to make sure he “doesn’t miss anything.” I like the team effort.
Kris, just to reassure you, I had my radiation done here where I live, in a dinky town of 10,000 people in the Appalachian foothills. And as I’ve said many times, sweet motherly Dr. Patel and her staff gave me 3 years of wonderful joyful life.
It’s possible that, as in my case, you may have a big expert doctor from one of the universities to calculate the dose and design the shields that aim it at the target area. But beyond that, radiation is a matter of having up-to-the-minute equipment and techs who really care about you, and it sounds like that’s just what you’ve got in Kalmar. I had to go to the “big city” (Lexington) only twice– first for the treatment plan/ dose/ shields, and then at the end for a check up.
Hope this helps. Please feel free to email me any time!
Big hugs,
Kristin
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
Kris,
I hope you will be able to get your radiation in Kalmar only if they have the precise skills and equipment it requires. Has radiation for bile duct cancer ever been given in Kalmar?
Chemo is more of a recipe, but radiation is much more detailed. I had my radiation at the Mayo clinic which is a couple hours away, even though they do radiation around here. There is a Hope Lodge in Rochester were people can stay free while going through radiation. Is there something like that in the bigger city?
It was quite a procedure to get all the measurements needed, even of my breathing. They made a form that I would put my arms in during radiation so I would always be in the exact same position and took a picture of me in that position to compare every time. I have three little tattoos which convinced me more than ever to never get a tattoo (I hate pain – even a little prick).
It may all depend on where the tumor is located, but like everyone else I do want you to have the best possible treatment.
Kathy
Hi Kris,
How very frustrated and angry you must be feeling and rightly so….
Nothing more to add towhat everyone else has said but fingers crossed for you the radiation is able to happen in Kalmar and soon!
Katie
Hi Kris,
Sorry to hear this, frustrating to say the least and you sure do deserve to catch a break, lots of breaks in fact!! I like Lainy’s suggestion though and I guess if you did that then it hammer home the message to your doctors that they screwed up twice! I really hope that you can start your radiation very soon.
Best wishes,
Gavin
Kris,
Sorry to hear about this frustrating turn of events. I’d be fairly ticked off as well. But – good for you regarding sticking to your guns on the no needle biopsy part. Hopefully that CT Scan will be over and done before you know it and that radiation will be underway very soon. Maybe not in 2 weeks, but still SOON.
Keep on hanging in there!
Rick
Kris – I am so upset for you. I haven’t got a clue about what goes on during surgery but it seems like common sense to get a tissue sample of a tumor. How can someone “forget” something like that? C’mon doctors – get it together!
Betsy
p.s. YES, you deserve a break…you’ve been through so much.
Kris, So sorry about this latest turn of events. Yes, I think it is time for you to catch a break. I think you may want to think about Lainy’s suggestion. I guess we just can’t count on these doctors knowing what needs to be done, so we need to remind them!
Lainy, I too love your marvelous sense of humor.
Darla
Lainy,
Again I have to say thanks for your sense of humor! It is a pleasure to read your posts. Also something I would consider given the amount of times we read that doctors forget things or attempt to do something that was not supposed to be done (like procedures on the wrong person).
Kris, sorry about the mixup once again. Something has to come your way soon.
I’ll be thinking of you.
Linda Z.
So sorry Kris but I have an idea. Each time before you have anything done, take some removable ink and write on your chest what needs to be done! I am sure the “girls” won’t mind a little printing! Decorate them with flowers too, draw attention to yourself so the doctors can see what they have to do. Gee, its not like you have nothing to contend with!!! We hope for better news next time.
I got a call from my oncologist. I need ANOTHER CT scan before they can chart my tumor to see if I can have my radiation in Kalmar. I just had one a little over 2 weeks ago, but it didnt get an image of what they all need.
My tissue sample to see if I can get Erbitux…well, the surgeons kind of forgot to get a tissue sample of the tumor, just the surrounding lymph nodes. So this is the SECOND time I have had surgery since January of last year and BOTH times the surgeons have screwed up the tissue sample part. My oncologist wants me to have a needle biospy, but I am declining since they can cause spread of the tumor. One study found 50% chance of spread, so no thank you. So Erbitux is no longer on option. Thanks surgeons. I appreciate your help in the matter.
The 2 to 3 weeks given a week ago to start radiation is way over optimistic now. Can I not catch a break?
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