Hi Guys:
Sorry, it's been awhile since Dave and I have posted and we want to reassure all of you that everything is indeed okay.
As some of you new members may need history to place us-my fiance Dave had a neck dissection in September followed by 7 weeks of radiation for SCC of the tonsil and one lymph node.
It's good to report happy news once in awhile and that is that Dave had his good friend PEG removed last week and is eating like a horse and gaining weight and feeling more like himself again.It is really a joy to watch someone who couldn't eat soup chowing on everything including a new fettish for ice cream.It's a truly simple pleasure to be able to go out for a meal again and have him actually enjoy food.
I'm posting this under "currently in treatment" in the hope that this message will offer a post-radiation bright spot for those who are still feeling the hellish effects of radiation sickness. So far, Dave has escaped with only mild neck tenderness and loss of feeling and a constant dry mouth with slow chewing. All in all, no complaints from our end and his neck scars look stellar.The radiation doc says his throat has no swelling and nothing looks suspicious (I would have preferred-"everything looks great" but they are docs after all). Next step is a neck CT in April.
As for our emotional state-I'll be up front and say we both needed a short hiatus from the message board as we struggle to change our mindset from thinking about cancer every minute to reclaiming our lives while embracing the fear of this "watchful waiting" post-treatment time. Now, could someone shed some light on how to stay calm during check-ups? Dave is great-I'm the one who is a basket case!
That's the scoop here,
Kim
Kim,
Thanks for the update. I've been wondering about Dave. Glad things are going well for him. I'm glad he had a relatively easy and quick recovery. I'm sure it is very reassuring for the new people to know that the recovery road isn't always a hard one to travel. I can't help with your question on check-ups. We're not to that stage yet, but hopefully soon.
Rosie
Welcome back Kim & Dave,
Very glad to hear everything is going well (from one ice cream obsessed person to another) Sounds as though many of the side effects are fading - believe it or not some will fade even further a year out.
How to handle checkups? That's a good question, at first I didn't realize how irritable I would become a day or two before each checkup. It kinda' slipped up on me. The best I could do for myself and Mike was be aware of the mood change and try to manage it. Couldn't make it go away, but I could make myself not take it out on other people.
Anyway, "That's my story and I'm sticking to it"
You guys take care and it's good to hear from you.
Dinah
Glad to hear of the great progress and a return to a relatively normal life. And you are right; it is great to hear good news on the boards for a change. These message boards are frequently weighted to the troubled and sad side of things, they are one of the crutches available when people need it, so the posts tend to be dark many times. They are used when people are at their lowest, or most scared, and are reaching out for help. I can certainly understand your need for space from it all. There is an enormous amount of "psychic debris" that comes from helping others who have cancer, and reading the topics on a board like this. Many people who visited here a year ago, and who are now in remission, do not come back. But it is completely understandable. It's a scary place to be, and hearing about someone else
Yes indeed, Kim, it is good to hear positive news! Thank you. I am so pleased to hear everything is going well for you and Dave. As far as checkups go, I have the attitude that I am going to get more proof that I am as okay as I feel. But maybe I am just not smart enough to be worried (grin). I am into self-fulfilling prophesies big time, and refuse to project any bad ideas to the doc. Whatever works!
Joanna
Okay Joanna,
I have to admit you are much better than me...I always (almost) believe the "glass in half full." By golly, I think you believe it's "3/4 quarters full". What a wonderful way to be!!!
You just keep on being the way you are, what a joy to read your posts. They either (somewhere in the post) make me smile or just give me warm and fuzzies.
Take care,
Dinah
Dear All,
It's been a while but am back on-line and feeling the need to be back in the loop!( I have right tonsil SCC and left&right lymph node mets)
Congratulations Dave, way to go - so glad all is looking good for you.
I hope I'm not jumping the gun when I say that SO FAR, my 5 weeks of treatment have not been too grim! The original egg-sized lumps ar almost gone!!
The wisdom tooth removal/PEG tube insertion was probably the worst part! Oncologist has postponed chemo (Carboplatin & 5 FU's) 'till mouth has healed a little - he's not concerned about missing the middle dose, as long as I get the last in. I seem to have a choice as to when I receive this - does anyone have any experience with this - better to get it over with or nearer the end of RAD (7 weeks)?
The neck is getting tender but the nurses have begun daily dressings - prophylactically - and assure me of healed skin by the end of treatment!
Am not looking forward to the more drstic effects of the next few weeks but the end is in sight already and all in all it has passed quickly and better than expected.
Good luck to everyone out there with thier treatments and future prognoses,
best wishes,
Frances.
Kim and Dave,
I am so happy that things are going so well for Dave. Kim, you have been a simply amazing parnter and supporter for Dave. He is lucky to have a gal like you!
Danny G.
Kim and Dave .... Thanks for the update. You're right, good news is always fun to hear, but I can also understand your need to take a break from the boards for a while too. Cancer takes up so much time; some negative, some positive, but still a lot of time that we don't always have. At any rate, it's good to see you back.
Now, about those pesky quarterly check-ups. I used to fret and stew with the best of them beginning about three weeks prior to the check up. I'd have the quarterly CT scan and then it would be sometimes another whole week before I'd hear results. So as you can see, I spent a lot of time either waiting for the quarterly scan and then wondering about the results. And just after I'd hear that everything was A-OK, I'd have to start worrying about the next CT scan that seemed to be right around the corner. I was driving myself NUTS! But still, I couldn't help it ... or at least I wasn't ready to at that point. Time was on my side though and the further out I got, the less stressful the tests became. I wish I could say that it happened quickly, but it didn't. I spent way too much time worrying about something that was totally out of my control anyway. I would encourage you to take it one day at a time and live life to the fullest ......cancer is something you had ... now it is gone. I know, easier said than done sometimes but that is what I had to begin telling myself over and over again. I had to keep the power and not let cancer take it away from me. And with a little work and time on your side, those quarterly tests do get easier and easier and easier. The worry never goes completely away, but I sure handle it a lot better than I used to.
Thanks for the Dave and Kim update. Don't stay away so long next time, OK? BTW, when is the big day? Have you two set a date yet or did I miss something?
Sincerely,
Donna
Kim and Dave,
So glad to hear from you and that you are doing so well. Restaurant food was the one thing I had trouble adjusting to. Everything had some spice that my scorched tongue couldn't handle.
Hey Guys,
After having my PEG replaced last week, I think I will be getting rid of it soon. I ate a real lunch to day in a cafeteria..baked fish, sweet potatoes and mashed potatoes and tonight at the Rodeo was able to eat a baked potato stuffed with chopped beef barbecue with no problem. I can see light at the end of this long tunnel!
Danny G.