What I can still do!

While my experience has not been as extensive as others, I did return to work today! Granted, it was for only half time for the next three weeks but I made it through day 1. I noticed my "Englisp" (love that term) but everyone else thought I looked and sounded wonderful. Ok, one friend did ask when I get the bolts for my neck.

Good for you, Lisa, and thanks for posting. That is a major milestone and one to be proud of. I love your use of the term "Englisp" -- one I have not heard before. From that I will guess your sense of humor is intact, which in my opinion is absolutely necessary on this strange journey. Hang in there!
Joanna

P.S. What I can now do, in 80 degree weather, is wear tops with lower necklines than my usual turtlenecks. I seriously don't believe anyone noticed my strange looking neck, and even better, I don't care if they did. Not caring what others think is SO very liberating!

Hi Joanna,
You and I are so much alike concerning the way we are dressed. I remember when I completed treatment, I bought several turtlenecks to hide the ugly burn marks on my neck. Every time I went out, I asked my sons if they noticed anything strange around my neck. Now a year later, I put on tops with low necklines and never care about what others think of me. In fact, I think not many people are interested in our own appearance except ourselves. I have never worn the turtlenecks I bought since they make my neck very uncomfortable and they are all undersized.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Once I was embarrassed because my teeth were not straight, now that is not a problem..I don't have any real ones left. I would get ill at the wind if it moved my hair out of place, now that is less of a problem. Then I got some really important stuff to think about. Life changes us.
I have realized that the enter person (that must drag around this old body) is the real person where meanness or beauty lies. God bottles tears(Psalm) and I am sure people will here their mean words again. I can eat fresh cornbread and taste my coffee.

Gotta agree with Karen and Joanna AGAIN! Out with the turtle necks in with those sexy low cut tops....not really, but you know what I mean. I swear I wore tuttle necks for what seemed like forever until FINALLY it was just too hot....or was it that I just didn't care about the scars anymore....or was it I had other things to worry about and my neck wasn't a priority. I'm guessing all of the above and a certain level of maturity. Now that I don't notice my scars it's doubtful anyone else does either, and if they do, so what. I fought the battle, won the war and that is all I really care about anymore.

I like the term Enlisp too. Pretty much sums it up for me in terms of the way I speak sometimes; and then again, on a GOOD day, I think I sound almost normal....but not quite. Just the fact that I can speak is a blessing to me. I have very little to complain about. Six years ago the only thing I wanted was to see my son graduate high school. I've accomplished that, now we're on to the college graduation and then his marriage, my grandkids.......and living a full life in between. Some where along the with surgery, treatment and suffering, I learned some valuable life long lessons that I hope some how I passed on to my son....that he'll pass along to his son...and the beat goes on!

Good things do come out of bad situations. It might on seem that way right now to those of you newly diagnosed or going through treatment, but there is a light at the end of the tunnel and its all good! SIncerely, Donna

I am new to this however i am a caregiver and we have been in radiation for 3 weeks and the pain my mate is having is so bad. i am a recovering addict for almost 15 years and she has been recovering for almost 4. i am the keeper of the pain meds so i am the bad guy in our house. she was a downer user in her addiction and i am afraid she will start using again before her 4 th anniversary on 5/31. i am so tired of this. she had surgery on 3/4/03 for cancer in the upper left soft palet. how long does the anger at your help last. how long will she be in pain from the burns on her tounge? i need some support and help i am ready to leave because it is so hurtful for me. help please.

Gretchen

The pain issue needs to be discussed with her Dr.
Is the Dr aware of her addictions? Why are you the keeper of pills? I don't think that's fair to you. If you have been free for 15 yrs perhaps this is too much for you because right now her pain is the issue. I really think you need to get her treatment team on board. The anger is a different issue. Length of time noone can tell. Counseling may help. I know a combination of anti-depressin and anxiety helped my husband but now he choses not to take them he is 3 weeks post radiation and using xylocaine viscus only for pain his choice. Unfortunately my advise is to remember she has choices and this is her illness.
How she choses tom deal with this is also up to her. How much you chose to deal with is also up to you. Take the time to look at your feelings and make a decision. I wish you both the best .
Diane

Gretchen.........I agree with DQKCK, your partners Doctor needs to be aware of her previous addiction to pills. Only then will they be able to address your partners addiction and stragities to prevent a relapse. The sooner this is brought to the attention of her medical team, the better.

Being a caretaker, helper and partner is a difficult place to be in. Watching someone suffer is not an easy thing to do and so much is left up to the healthy person in terms of keeping things afloat on the homefront...taking care of kids, paying the bills, cooking and cleaning all falls on the healthy caretaker/partner. Cancer is tough stuff and it is a disease that affects everyone in the family unit, not just the person diagnosed and being treated.

I hear your pain and frustration in all of this and believe me I understand where you're coming from. The good news in all of this is the fact that you do not have to do this alone. You mentioned that you are in therapy but have you thought about joining a cancer support group? The folks in the support groups know and understand what you are going through and may be able to give you ideas and insight into some coping stragities. Treatment is tough and the recovery long and hard but very very very doable. Joining a cancer support group will help give you, the caretaker/partner a voice in all of this. It is a safe place to vent and a wonderful place for an exchange of ideas. The American Cancer Society is a great place to start when looking for a support group or perhaps your therapist could help you locate a support group in your area. What ever you do, don't stop posting....and vent all you want to. We're all here to help. Hang tight, there is a light at the end of the tunnel. Sincerely, Donna

Hi Gretchen, I think what both Diane and Donna said was good advice. The doctor definitely should be made aware of her addiction - so this can be monitored properly. All I can really say is that I'm a caregiver like you....and it's safe to say that you are not alone in your frustrations over this disease, and what it does physically and emotionally to all involved. As Donna mentioned, cancer is "tough stuff"...but as a caregiver, you're going to have to be one tougher. It's not easy, but you have come to a great place where you will find caring people who will do their best to answer your questions. It's also a great outlet to vent...so feel free to let loose if need be! Good luck to both of you and keep us posted on how things are going.

Thank all of you for all of the support and suggestions. i have now told the doctor and he gave her a pain patch. thank god. well it is the weekend and i have to find something for myself to do for me.