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The waiting is really hard

evsmom
Posts: 11
Joined: Jun 2009

I'm waiting to meet with an oncologic surgeon on 6/22 to discuss next steps about having my tumor removed. He'll likely be removing it completely to biopsy but it is now starting to cause some pain in my arm. I don't have a definitive diagnosis.

I have also been experiencing pain under my arms and now that is worrisome. I just turned 35, have a 22 month old and a wonderful husband. I go through waves of disbelief (although I don't know what is going on) and the possibility of what could be ahead. I consider myself to be extremely positive and always look on the bright side of things but how do you NOT think the worst?

Facing a cancer diagnosis scares me but what terrifies me even more are the thoughts i'm sure every parent has - watching my son grow up, etc.

Just wondering what those of you waiting for a dx or those that had to wait did to help w/ your fears? Did you talk with survivors with cancer similar to yours?

I have questions and thoughts but really don't feel like sharing them w/ family although they are very supportive.

ambientbeats's picture
ambientbeats
Posts: 15
Joined: Jun 2009

I hear you. It's just that feeling of helplessness that is sometimes debilitating and then you start spiraling down into thinking the worst. I understand. And I also understand not wanting to share with your family. Somehow, you probably think you need to be strong for them so they don't freak out too (I know, I'm a mom).

But what helped me when I was waiting for my diagonosis was to not think about it. I know it's easier said than done. Keep yourself busy. Focus more on your baby and you hubby. Watch movies, read books. Do anything that will keep you mind off it. IF you can't sleep at night, ask your doctor for something that will help you sleep. Lack of sleep can play tricks on your mind. Try to be outward instead of inward. Again, easier said than done. But when I was waiting, I was almost in denial about it.

Otherwise, I you still need to keep talking about this, I'm here to listen.

Take care,
cece

Pnktopaz10
Posts: 56
Joined: Oct 2008

I found that talking with others about cancer while waiting for the"official" diagnosis was helpful. Don't be afraid to speak your mind and get the support that you need. Cancer is a new journey for everyone and no one (family/friends) really knows what to do or say. You can get a lot of support from this board. The people here are just wonderful and understanding. They have been there and understand what you are going through. Share your fears, concerns and ask your questions. We are here for you. Hugs, Pnktopaz10

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

Waiting and patience were not my strong points. When I had my tumor removed, the two weeks after really didnt bother me, I just assumed it was like the one they removed 6 months prior, benign. 11 days after my surgery, my diagnosis came via a voice mail messge in which my ENT left me at 3:30 in the afternoon on a Friday. he then left for Europe for 3 weeks. The longest 3 weeks of my life, I literally drove myself nuts with worry, read to much on the internet, trying to self-diagnose... I never thought about finding a cancer support group or getting help any other way. I was angry with my dr, and his decision to leave me a voice mail and then not leave any other doctor in his office a copy of my pathology report so they could explain it to me. I was "blind and dumb" for 3 weeks. The anger ate me up inside when I finally did speak to him I exploded...... let out whatever you are feeling, when you feel it. Its ok to be scared, to cry, to worry and wonder what if, just deal with it at that moment, dont suppress. Strenght comes with knowledge, fear comes from the unknown.

My suggestion to you is talk, talk to your doctor, family, friends anyone who will truly listen. Find your local american cancer society and go get any info you need on your possible type of cancer or go to their website, or a repitable medicle website. Dont read articles or stories on the internet. Take a day and pamper yourself.

Hopefully you will get clean results. Keep us posted.

evsmom
Posts: 11
Joined: Jun 2009

Thanks to those who responded - I truly appreciate the well wishes and prayers. Siranaf, I can't imagine the wait you had to deal with while your doctor was on vacation - I too would have expoloded. I was very irritated to get the results of my MRI via email, and have to wait 5 days to meet with her for an explanation.

Ironically, I WORK for the American Cancer Society and have been utilizing the information at my fingertips. I don't know if a support group is really appropriate at this point since I don't have a diagnosis either way although I think having people to talk to (like this board) in similar situations is helpful to me. I have found that the waiting and worry hits me at any given time...today my husband and I took our almost 2 year old to the zoo - and as I watched him enjoy his first ride ever on a merry-go-round with my husband by his side - I couldn't do much else but start to cry, it was bittersweet - he loves life and I just worry about the what if's and down the road and praying I'll be around for the next 50 years to watch him grow into an amazing adult. That's the hardest part about all of this. It's scary not knowing what will happen to me but more so than anything my heart truly aches to think there may be a long road ahead of health challenges, etc. I just hope that all will be okay..

Folks24
Posts: 104
Joined: Feb 2007

I can understand your frustration. My own gp didn't like my blood#s and swollen lymph nodes and sent me to "specialists' to find out the reason. I had two years of what I call "emotional H" - seeing a dr, being told I didn't have to come back & thinking ok cured, gp telling me no and sending me to another one, etc etc. I was told they were sure it was some kind of cancer but didn't know what kind. With all the ups and downs those 2 years and doctors driving me nuts I finally decided "nuts to this". I was letting the unknown take over and there is a lot of that out there! My diagnosis now is Indolent Lymphoma and Sjogrens.

My advice would be to deal with "dr stuff, tests, etc." when you have to. Kind of like a big old gorilla in your house. He's very bothersome and not going away BUT you don't have to have him in your face all the time - stick him in the closet when you can and enjoy your life. When he comes out, then deal with him.

None of us know what tomorrow may bring but with anyone with cancer or anykind of similar illness it becomes more apparent to us. We truly learn to appreciate things more. So deal with tomorrow tomorrow and enjoy that wonderful family you have.

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