I have ants in my pants
Comments
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We all can relate
Arndog,
We all can understand how you feel, the waiting, mind wandering, thoughts that fade in and out and a bunch of " What If's ". Can anyone really know if all the cancer has been removed? The Surgeons work their magic. The Radiation and Chemo Oncologists seek any stray cells in hopes of stomping them out. We in turn must try to live life as if it was all a bad dream.
You and your husband will be looking over your shoulders for some time to come, but time can be spend either worrying or moving on. Many on the board here question themselves each day with this thought. Am I holding myself back by being on this board each day? Am I truly moving on or holding myself back by answering questions and reliving my darkest hours? Or am I helping those that have recently joined the board and hopefully we can show the new patients that we are here, living and moving on by just words of encouragement and speaking of trips and happy days ahead. Hopefully we fall into that group which is helpful and calm many of the unknowns of the new patients.
Be patient, I know it is hard, the Scans are the best source of the information you seek. But they can't rush the Scans in fear of false readings. My opinion is that a Pet Scan shouldn't be done until at least 6 months past the final treatment in hopes of a true reading on the Scan. It gives the body time to rid itself of the RAD's and Chemicals.
My Best to Both of You and Everyone Here0 -
Don't shoot the messenger.
I am a caretaker like you. During the treatment phase there is a lot for us to do. There is radiation every day, chemo on a regular basis, visits with the doctors. When treatment ends, I do not recall any doctor going out on a limb and saying "got it all". What a I do remember is an anxiety of not having anything to do, or the worry that there was nothing "active" going on to kill the cancer. You may have read on other posts about the "cooking" stage, where the radiation and the chemo are still doing their thing fighting the cancer.
I remember it being a tremendous emotional swing, from active (I have something to do that is helpful) to waiting. Waiting for healing to begin. Wondering if all the cancer is dead. Then you realize how much the activity of treatment helped you manage your feelings. When that activity is gone...wham, there you both are, holding on, hoping for the best, waiting for each day to be better than the one before, measuring progress in weekly increments, because that is the only way you can really see the difference.
Mark and I had to navigate some relational shifts too. He was very independent before diagnosis, became more dependent on me during treatment, and then strived again for independence, leaving me without the new role I assumed: caretaker. It was a bit of a relational roller coaster for a while.
This may not be your path...but if it is don't let it get the best of you. Things move forward and improve. One day at time. Time does move forward, even when it feels like slow motion.
Hang in.
Kim0 -
"Full response to treatment"Kimba1505 said:Don't shoot the messenger.
I am a caretaker like you. During the treatment phase there is a lot for us to do. There is radiation every day, chemo on a regular basis, visits with the doctors. When treatment ends, I do not recall any doctor going out on a limb and saying "got it all". What a I do remember is an anxiety of not having anything to do, or the worry that there was nothing "active" going on to kill the cancer. You may have read on other posts about the "cooking" stage, where the radiation and the chemo are still doing their thing fighting the cancer.
I remember it being a tremendous emotional swing, from active (I have something to do that is helpful) to waiting. Waiting for healing to begin. Wondering if all the cancer is dead. Then you realize how much the activity of treatment helped you manage your feelings. When that activity is gone...wham, there you both are, holding on, hoping for the best, waiting for each day to be better than the one before, measuring progress in weekly increments, because that is the only way you can really see the difference.
Mark and I had to navigate some relational shifts too. He was very independent before diagnosis, became more dependent on me during treatment, and then strived again for independence, leaving me without the new role I assumed: caretaker. It was a bit of a relational roller coaster for a while.
This may not be your path...but if it is don't let it get the best of you. Things move forward and improve. One day at time. Time does move forward, even when it feels like slow motion.
Hang in.
Kim
or something to that effect is all you are going to get. No one is going to guarantee anything or engage in speculation. Your next scan is your next milestone, benchmark, baseline, point of new beginning. These are well earned days and sleepless nights to come. The journey truely begins. Immerse yourself with us and pass some time in conversation as only time will tell. Stay the course and stay strong and steady OH wonderful caretaker that you are.0 -
Correct
All the above are so correct as to what will happen in your many months to come. You will get so much support and knowledge here that will help some but the waiting for news will be slow to happen. Like has been said do not shoot the messenger. Here is approx. what I would think might happen. 6-7 weeks cooking time(i like that discription) for the radiation. Approx. around then they will do some type of scan hopefully a pet scan. They will review options depending on results. My guess is they will wait another 3 months and do another scan. At which time you will be given more options. For many 1 year is great, for some it's 2 years for me it was 7 years... when it comes down to it, the statement was "we can't find anything, so keep having fun.
It's a long ride and I am sad to hear your worn out. I have said and continue to say the #1 caregiver has it harder than the patient. Please stay positive all the time especially with your husband. Reach out to your friends her is you need to share and vent. That is what we are here for the help in anyway we can to get anyone thru this ugly crap.
Prayers going out for Wisdom and Strength.
John0 -
Ants
I know the feeling of being "plum wore out." In the weeks following the end of treatment, Buzz focused on healing. That is about all we thought about. Then we focused on his eating again, starting with liquids and slowly weaning off the tube feeding. That first scan is a milestone but can be misleading. Buzz's scan was done a bit too soon and it gave us a false positive which the Radiation Oncologist thought was inflammation. Buzz has had two scopes (tube down the nose to view the throat) which showed inflammation but no tumor. Buzz asked the RO what he thought about his being cured. And the RO thought he had an 85% chance of cure based on his response to the treatment. But that is just a shot in the dark. We never know if we are cured and just have to live life to the fullest even if there is that spector of cancer lurking in the background. My best to you during this difficult time. You can look forward to healing and a return to a mostly normal life. Karen0 -
You're Gonna Be Waiting...
Sorry, like mentioned, it'll be more than two months more than likely before you even get any scans...
First year of clean scans is a milestone, two years is even better...
Main thing, just realize it's a very, very slow process concerning healing. That needs to be your main focus, stay hydrated, eat what you can, get rest when you need it...the rest will come in time...
Enjoy being alive, and deal with what you need to at the time...
Best,
John0 -
Sequential good newsSkiffin16 said:You're Gonna Be Waiting...
Sorry, like mentioned, it'll be more than two months more than likely before you even get any scans...
First year of clean scans is a milestone, two years is even better...
Main thing, just realize it's a very, very slow process concerning healing. That needs to be your main focus, stay hydrated, eat what you can, get rest when you need it...the rest will come in time...
Enjoy being alive, and deal with what you need to at the time...
Best,
John
We were pretty reassured in the final weeks or treatment as the docs were just very positive sounding and confident. They couldn't report much concrete besides some reduction in the tumor size but they smiled and said they were very pleased with how it was going.
It was nearly two months after I finished my tanning sessions that they did a PET Scan. As everyone says, I hadn't finished cooking for a while. The scans were negative which was very good news.
But that only set up the neck dissection a couple of weeks later. It was only a week or so after that when back to the hospital for stitch removal that the surgeon was looking at my record and said "Hey, your results are back. All 26 lymph nodes either clear or dead (the ex-tumor." That was when I finally felt like it was all over.
Yes, I will have to do a 6-month and 1-year etc. but I now have real results where before I only had confidence. So, feel good and don't worry. You'd know it if the docs seemed unsure. Doug0 -
Ants in your pants.
Waiting two months? I just celebrated being out of rads two years the other day, and I've never heard those words.
I'm just happy I haven't heard the words 'recurrence' or something equally nasty.
You are antsy because you are in attack mode constantly. That fight or flight adrenaline that has you keyed up and hopped up on your toes waiting to run in any direction necessary.
When he is done, just enjoy that fact that he is no longer being zapped. Take that all in and try to shift into healing mode. I am betting that is hard to do for you caretaker types. ;-) Glad he has you with him to help him through this. Don't forget about yourself and try to take time for you too.0 -
AgreeSkiffin16 said:You're Gonna Be Waiting...
Sorry, like mentioned, it'll be more than two months more than likely before you even get any scans...
First year of clean scans is a milestone, two years is even better...
Main thing, just realize it's a very, very slow process concerning healing. That needs to be your main focus, stay hydrated, eat what you can, get rest when you need it...the rest will come in time...
Enjoy being alive, and deal with what you need to at the time...
Best,
John
Don’t get too antsy expecting your doc to say yep we got it, it will take time now for his body to heal and then comes the PET scans and check-ups.
Take care
Hondo0
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