It has been awhile...
Ron49
Member Posts: 91
Hi All,
I am so sorry for not posting for so long. I do come and read the posts and stay tuned in. I am not sure when the last post was but I do know it was a very dark and difficult time mostly for Ron but also for me and there was a point we did not want to only post negative comments.
So here is the update...Ron will be 6 months post treatment on October 1st and so far all is clear and he is fantastic for which we feel extremely blessed. I feel like the fog that we have been in is finally clearing and we are getting used to our new perspective on everything. Ron has had monthly appointments with the H&N doc with a scope exam each time. No scan or ct scheduled for anytime in the future. He had the PEG removed June 18th and he has been gradually getting back to eating since then. He has not really gained much weight back but feels good where his weight is (162). Not sure if it is permanent but he has had some hearing loss which started after the 2nd chemo treatment. The doc has scheduled another visit to audiology in Oct. Aside from that and somewhat of a drymouth he is fantastic and again we feel extremly blessed. All of his hair has grown back with the exception of his left neck where tumor was excised and heaviest rads were. We just celebrated his 50th birthday with a 10 day road trip on the California coast. This was our first real outing away from home and we both commented that this was the first time we have felt somewhat normal since everything started in Dec 2010.
I feel a deep sense of gratitude that is impossible to convey to all of you. This was the only place where I was able to get real info, answers and true compassion and support during our darkest hours. I have seen it written so many times but I feel it deep in my heart to say you all are amazing and we felt so supported during the most difficult of times.
Again sorry for not posting for so long and Ron and I send nothing but positive thoughts and health to you all.
Ron and Robyn
I am so sorry for not posting for so long. I do come and read the posts and stay tuned in. I am not sure when the last post was but I do know it was a very dark and difficult time mostly for Ron but also for me and there was a point we did not want to only post negative comments.
So here is the update...Ron will be 6 months post treatment on October 1st and so far all is clear and he is fantastic for which we feel extremely blessed. I feel like the fog that we have been in is finally clearing and we are getting used to our new perspective on everything. Ron has had monthly appointments with the H&N doc with a scope exam each time. No scan or ct scheduled for anytime in the future. He had the PEG removed June 18th and he has been gradually getting back to eating since then. He has not really gained much weight back but feels good where his weight is (162). Not sure if it is permanent but he has had some hearing loss which started after the 2nd chemo treatment. The doc has scheduled another visit to audiology in Oct. Aside from that and somewhat of a drymouth he is fantastic and again we feel extremly blessed. All of his hair has grown back with the exception of his left neck where tumor was excised and heaviest rads were. We just celebrated his 50th birthday with a 10 day road trip on the California coast. This was our first real outing away from home and we both commented that this was the first time we have felt somewhat normal since everything started in Dec 2010.
I feel a deep sense of gratitude that is impossible to convey to all of you. This was the only place where I was able to get real info, answers and true compassion and support during our darkest hours. I have seen it written so many times but I feel it deep in my heart to say you all are amazing and we felt so supported during the most difficult of times.
Again sorry for not posting for so long and Ron and I send nothing but positive thoughts and health to you all.
Ron and Robyn
0
Comments
-
Excellent!
Robyn and Ron,
Such great news to hear, I know exactly how you feel. And it sure does feel good. Hope the hearing loss is just a temporary thing. I am about Ron's age (+ a few years) and weight. It took me a while to put on a few pounds also. I am back up to about 170 now which is fine with me, though my wife doesn't necessarily agree. So I fib a little and tell her I'm up over 175 and she's happy.
Hope its green grass and high tides for you guys from here on out. Cheers.
Jimbo0 -
Hello Ron & Robyn, I have
Hello Ron & Robyn, I have wondered sometimes how ya'll were doing. We were happy to hear you are both doing well. Connie is also doing great and their is life after treatment. Sorry to hear about Ron's hearing loss but like Jimbo said hopefully it is temporary. We are still getting use to the new normal but "life is good" and we really appreciate the little things a lot more. Connie still has her peg but we ate at Red Lobster yesterday and she liked the crab so much we went back today. It was the first time we ate at a restaurant besides a buffet. Well tell Ron we said "Hello" and to keep up the progress, Your Friends, Homer & Connie0 -
GLAD TO SEE YOU BACK
Glad to not only see you both back, but awesome news regarding how well Ron and you are doing. I am approaching one year post treatment, and hang in there with the weight thing. I dropped from 243 to 170 and am back up to 198 and feel great. My goal weight on the high side is 205 and no more. My metabolism has returned to where it was pre C and I really have to watch what I eat and drink as the weight will pile on.
Keep us in the loop as to how you both are doing and most importantly, get out there and pick up where you both left off.
Best!!
Mike0 -
Ron & RobynSkiffin16 said:No Apology Needed
Great to hear that you both are doing well....more than likely the hearing and saliva will improve.
Sharing your news is more than enough to make me have a great day....
Take care of yourselves and enjoy.
Best,
John
So glad to hear that all is coming together for your two...Sharing your good news is uplifting, please keep coming back once in a while.
Give Ron some more time and he'll see a huge change. It takes a year or more to really feel like you are done....
good luck
Steve0 -
Great to see you againSkiffin16 said:No Apology Needed
Great to hear that you both are doing well....more than likely the hearing and saliva will improve.
Sharing your news is more than enough to make me have a great day....
Take care of yourselves and enjoy.
Best,
John
Hi Robyn
So good to see you posting again and see that Ron is doing so well. You need to ask his doctor about his first PET scan which is normally done about 6 months after last treatment. If the doctor is scoping him and all looks good he may wait till he is a years out before doing a PET.
Keep well and strong and drop us a line every now and then
Hondo0 -
Thanks Everyone!
So good to hear from you all again, you are all fantastic and hearing that it will get even better is music to our ears. We will be back and hopefully able to provide support to others as you have to us.
Hondo thank you, we have been wondering if we should ask about a PET or CT as we approach the 6 month mark. Honestly we have had anxiety about asking for a test. We want to know but on the other hand the thought of the process is difficult to consider and seems easier to just put out of your mind. We wonder is one test better than the other? Ron's original PET showed nothing (after excision and tonsillectomy). We will ask at his next monthly visit if any test can be done.
Take Care!0 -
PETRon49 said:Thanks Everyone!
So good to hear from you all again, you are all fantastic and hearing that it will get even better is music to our ears. We will be back and hopefully able to provide support to others as you have to us.
Hondo thank you, we have been wondering if we should ask about a PET or CT as we approach the 6 month mark. Honestly we have had anxiety about asking for a test. We want to know but on the other hand the thought of the process is difficult to consider and seems easier to just put out of your mind. We wonder is one test better than the other? Ron's original PET showed nothing (after excision and tonsillectomy). We will ask at his next monthly visit if any test can be done.
Take Care!
Great please let us know when you will be going for the PET as I believe strongly in the power of prayer, its what kept me here for an extra 6 years now.
:+)
Hondo0 -
Robyn
Great to get this report on Ron and how he's doing- really great to hear. As Hondo asked- please let us know when you get the PS/CT results- so we can all celebrate. You and Ron are family, here, girl, so don't hesitate to drop in and update us all. Does us all a world of good to be reminded of another H&N success story, as you and Ron are.
kcass0 -
Photo
BTW, new photo looks great also.....
As for the PET or anything else....don't hesitate to ask the MD's anything. That's what they do and most do it very well....(take care of you).
After all, you have to take care of yourself first and foremost.
Best,
John0
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