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Unread 10-21-2003, 07:37 AM
For Georgene

Hi, Georgene--

I was sorry to hear that you're experiencing anxiety and cancerhead over your upcoming CT scan results. The post-treatment testing process is such a mixed blessing! We are, of course, happy that our doctors are watching us closely, but the constant surveillance is so anxiety-producing. I always asked the testing center to send me a copy of the results directly so that I didn't have to make the call to the doctor's office, and I was able to get the results a lot quicker than waiting for my gyn-onc to receive and review the report. I have also obtained the pap test results directly from the lab, because I did not want to wait the extra time it took for the doctor's office to have the results available. For me, doing that cut down the anxiety-producing waiting time considerably.

I wanted to say that the one thing I really became aware of when I was going through my post-treatment period of anxiety, sleeplessness, and inability to concentrate, is that there are many available resources out there to help!! Although I would not have been considered a "joiner" before cancer, I began to explore a variety of resources.

I attended support groups, both general and gyn cancer, went for counseling, attended relaxation seminars, formed a "cancer club" with two women who were diagnosed around the same time I was. We would talk regularly and call each other when we were particularly anxious about tests or other cancer-related issues. Every couple of months we would schedule a "cancer club outing," getting together to do something fun.

After treatment ended, I also began to realize that I no longer was the same person I was before diagnosis. I could not go back to the same life, the same activities, the same way of relating to the world. The things people were talking about around me no longer interested me. In some ways, I no longer felt like I was part of the same world they were in, but yet I didn't know where I really belonged. While I felt I was in some sense being pushed out of the cancer world by my oncologists when treatment ended, I did not feel ready to go back to the world as I knew it before cancer. I had to begin to build a new life one brick at a time. For me it was a slow process of deciding what to keep from my "before cancer" life and what to discard. I had to try different things to figure out what was working well and what was not.

I'm glad to hear you'll be speaking to your doctor about how you're feeling. Please keep us posted on how you're doing and don't forget about our upcoming lunch date in Philly!

Best regards.

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Unread 10-21-2003, 11:55 AM

Thank you so much for responding. Today is a good day and yesterday - by posting and reading the responses helped so much. I am beginning to understand about the new life. I think that is one of the things bothering me - just not knowing where I belong right now. I didn't know I could ask to have the results sent to me - I will ask that of them when I go. Although the dr. said it would only be 2-3 days.

I am considering looking for support groups around here and also finding some other things to get me going. My husband & I are going away on 11/1 - to Myrtle Beach (we were supposed to go in March) so when I get back, I will start getting involved.

And of course we have our lunch date! I will keep you posted - thank you so much.
Unread 10-22-2003, 04:22 AM

Hiya Jan

I know that i have suffered from a severe dose of cancerhead! but i just wanted to let you know that it really will get better and you must remember you are only 4 weeks postop and still recovering. I am now 9months post op (endo cancer..had two operations in a 2 week time frame) and i hope that i am pretty much free of cancerhead. 3 months ago though i was pretty bad but i gave myself a good talking to and got myself a part-time job to take my mind off things. I havent worked in 22 years!! I think once we are in recovery time, and everybody else's lives have gone back to normal, we tend to dwell on things, get depressed and one thing leads to another. I had trouble with a tooth and i ended up with a root canal (no big deal really) but i was convinced i had cancer of the jaw (is there such a thing?!) and drove myself crazy with worry. Family and people close to you, i find, dont understand at all. The normal response is 'what are you worrying about youre cured now' BUT the only people who understand what you went through are your sisters on this board. So keep posting when cancerhead hits! and i wish everyone well who is dealing with this problem.

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Unread 10-22-2003, 08:39 PM

Wild Rose is right. We all go through the grief in diffent ways. Knowing we have cancer is a major life change. I did not chemo, but radiation, pills, HRt, kidney damage and heart damage due to surgery.

There is really 7 stages to grief.
1 shock- you and your body have a major change to handle
2 denial- I just could not believe this happened to me , I had no symptoms then one day they said i had cancer
3 anger- I was mad at the world, and at God for letting it happen
4 depression- still comes and goes
5 baranning- never works, evern though I tried it too
6 forgiveness- you have to forgive yourself and everone who does not really understand because they have not experienced it. You have to forgive kyour higher power or God for letting it happen
7 accepance-I am not real sure I am there yet

It has been a long hard road. 2 years and sometimes it seems lilke it was just like yesterday. You are not alone
Unread 10-23-2003, 12:13 AM

My CA125 is holding steady at less than 6.3, which is great. I'm still doing weekly chemo, which gives me a safety buffer. I'm back to work. And everyone says I look great.

But I have lingering pain on my lower right side, and my masseuse says my "energy" is "sluggish" in that area, so I've been freaking out quite a bit. I know I'm healthy. But that twingy pain makes me freak out. My mom and my surgeon and the OTHER two doctors who just BOTH did pelvic/rectal exams two weeks ago haven't felt anything but scar tissue under the appendectomy area. But I'm still freaking out.

Maybe I'm in that "three months after" period that someone else in this thread was talking about.

I am eating so healthfully, but I break down and have a few bites of chocolate, or some soy ice cream, and then I get mad at myself, which I know doesn't help. Or I don't exercise for a few days, and I get even more mad at myself. And then I worrry even more. I think I worry less when I'm actively doing all I can AND trying to help people. If I slack off one whit, I get sad.

Anyway, I'm just rambling. Just wanted to chime in here to say what's already been said: You're not alone.

I think I'm going to go listen to a Deena Metzger tape from the "Cancer as a Turning Point" series right now. Someone gave the set to me five months ago, and I've never gotten around to listening to it. But my mom has been bugging me to listen . . . so maybe it will help me get back to a peaceful place.

I hope this disjointed fear thing is just a temporary phase.

Unread 10-23-2003, 04:09 AM
For SirenSong

I'm convinced that those little pains are what drives cancer survivors almost over the edge! At least they did for me; since treatment I was worried that I might have recurrences in my back, mouth, under my arm, eye, and probably a half a dozen other places depending on where the pain, bump or lesion of the day happened to be. I think cancer has a way of turning many of us into hypochondriacs since I never worried about aches and pains and the like before cancer. My doctors have been very accommodating and understanding about cancerhead and will check out anything I'm worrying about.

I must say that after four years, I have become more able to allow what are in all likelihood unrelated conditions run their course rather than immediately calling or running to the doctor to be checked out. Initially after diagnosis, we lose all sense of trust in and control over our body. It takes time to reestablish that sense of trust and control.

It is also very hard to maintain a perfect diet and perfect exercise regimen and to avoid stress or worry all the time. After all, we are imperfect humans and life would be awfully dull and boring following such a constant rigid regimen. Time also provides a sense of moderation and perspective on how best to ensure good health without feeling guilty about enjoying some of life's many pleasures.

Hang in there and take care!

Unread 10-23-2003, 10:44 AM
To MoeKay

MoeKay -- thanks so much for the encouragement!

You're right: Those little pains do make me feel like I'm going over the edge! I just started HRT, which probably accounts for some of the bodily weirdness I've been feeling. I should give myself a few weeks to settle down, then make peace with that tugging/pulling feeling left over from the appendectomy.

What I have to remind myself is . . . cancer itself didn't hurt at all. So when I have this weird tugging on my right side, it's really scar tissue and my intestines bunching up a bit.

As for my guilt, I hope it is something that will subside. I think I am going through a phase of some sort. I really do have to have that dark chocolate sometimes. I just have to. I didn't feel all that sparkly yesterday, but I had some chocolate and instantly felt fine. And then I instantly had a green drink to counter-act the sugar. I do that all the time. Chocolate. Then green drink. How lame am I?

Otherwise, my diet has been incredibly boring. I allow myself decaf coffee and dark chocolate, and some soy ice cream sometimes, but other than that, it's been fruits, vegetables, tabouli, salmon, baked potatoes, salads, vegetable juice, Indian food, Japanese macrobiotic food, etc. Oh. And let's not forget the organic corn chips, which I snack on every so often . . . but technically probably shouldn't have.

I know I'm doing one million percent better than my pre-dx diet (which included lots of heavy restaurant food, wine, cheese, ice cream, candy, etc.). So you're right: I need to stop freaking out at every little thing. I can't stop living, and I need to remember that if I have a nice dessert or some bread with butter at a restaurant, that's OK because it's not an everyday thing. It's hard, though.

I'm also trying to cut out plastic water bottles, and thus am always on a mad rush to find glass. That alone can drive anyone insane, since about two places sell glass, and I get thirsty all the time. Sigh.

I have an appointment with Dr. Jeanne Wallace (the person who spoke at the OCNA conference) on November 4th. I will be looking forward to receiving her recommendations in report form prior to that, and to the opportunity to ask her questions. I will definitely do a brain dump once I've spoken with her.

Thanks for your kind note and encouragement! I appreciate it!
Unread 10-23-2003, 01:42 PM
SirenSong & MoeKay,

it was great to read your posts. Siren, I am amazed at all the RIGHT and wonderful things you are doing. Yet you are still so hard on yourself. I hadn't seen posts from you in awhile and figured you were in the "I am back at work, have my energy, all healed" place - yet still cancerhead lurks! Since posting and reading the posts I have felt so much better. Plus I have gotten myself out and doing some things, other than worrying about me. And that helps. But you are right about every twinge...I have had this earache...and asked my dh if he ever heard of cancer of the ear. Crazy!! In my case, my cancer did hurt, it hurt like hell, but I don't know if that is cause for any peace. I think it just comes in time, as MoeKay said - and others.
Yesterday my friend was telling me about a neighbor of hers who has ALS - and has now lost the ability to speak. It gave me something to think about. And I stopped focusing on me for awhile - for me it helped me understand that you just need to have faith, and keep going.
I think I am rambling. I wish everyone peace!
Unread 10-23-2003, 03:03 PM

Following this thread has touched many emotions for me. I hope no one id offended if I talk too much about the spiritual. I don't know how to honestly express myself any other way.
I think once the shock stage of diagnosis wore off, I went into acceptance and depression stage at once and I'm still there, but the denial stage comes and goes. I have never felt angry, but i heard that depression is anger turned inwards. I never bargained either.
I suffer from cancer head when the aches and pains hit, and a bit of survivors guilt too. I don't tell people about the problems of the instant meno pause or even the pain, I am in, because I am lucky to be alive, have no right to complain, and yet because of the damage done to me during surgery, the bowel problems, my husband and I still can't have sex. I feel like dead wood in my family. It hurts when I come back from leading the teen retreat and he says " It was so nice around here with you gone. I am willing to embrace my cross, but don't want to be the cross, others must carry. I want to be like Mother Teresa and serve, not be one of those she served. I guess it is the sin of pride. I need the humility to be the cross that others carry to heaven, if it's the way God wills them to get there. While Jesus was hanging on the cross, He was no longer healing, working miracles, or preaching. He was just hanging there and yet that was when He accomplished the greatest work of all, our redemption. I think many of us have "dead wood" times in our lives where we feel like we are just hanging around, not accomplishing much, but these may be the times we please God the most. Sometimes i feel like a hypocrite. I love to share my faith with people and truly believe from my heart what I share, but worry that if people knew my struggle, and darkness, it would be stumbling block to them. I want to go to the place where believing turns to knowing and there's no turning back
I have been doing all the things I really like to do, hiking , walking the dog, working with teens, adults, and little kids at my parish., trying to give what I can, not crying ver what I can no longer give. I miss the days when I never thought about my body until something broke or was bleeding. Someone asked me something that has helped me. He asked "
What makes you really smile even when you are alone, made you smile even when things were at their worst? This is what you must give people! People say I smile a lot, and in fact i am smiling right now, even though i am alone, except forthe dog, two cats, three birds, God, the unseen angels saints, devil and bad spirits too. What makes me smile has nothing to do with possessions. What makes me smile is an inner knowing that I am created to love and be loved, and the created world of sunrise, stars, trees, animals, the eyes and smiles of other people are constant reminders. We do not smile for some vague and obscure faith. We smile because of a love that knows we are the beloved, that God, that Heaven awaits us with the greatest possible joy,that no eye has seen nor ear heard,but that he has prepared for those who are faithful to his love.
Cancer has taught me that Life is not just a journey it is a battle, but we are more than conquerors
Unread 10-23-2003, 04:04 PM
Don't stress

SirenSong and everyone, Don't stress over going off the healthy diet a little or missing a day or two or three of exercise. Stressing about it in whatever way will probably be more negative than the actual eating of the chocolate or taking a break from exercise.

I am a big believer that stress is toxic.

Mary D.

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