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my adventures with 'cancer head ' my adventures with 'cancer head '

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Unread 04-05-2002, 02:46 PM
my adventures with 'cancer head '

Hi there girls, I wasnt going to post this but I need to just get it all out and sometimes it helps to see it down in writing.

This past week have have been experiencing what dear kaatie calls ' cancer head '. Oh I know that the oncologist has said that there isnt cancer but now my mind is over active and the what ifs have started again you know what I mean...what if its still there, what if it comes back ,what if, what if .......

I have been on the phone to the Cancer Council talking and getting it all out but they just say ' most cancer sufferers feel exactly like this when treatment has finished, its normal ' Well thats great to know that I am 'normal' but it sure doesnt take the fear and thoughts out of my over active mind. I feel like the baby bird who has been kicked out of the nest and has to fly on my own.

I am not 100% happy with my oncologist and am currently trying to find a new one but not sure if I can.... its like they have done all the surgery and treatment and now see ya later. Oh what to do.

I dont know why it has started , maybe something someone said has triggered it off, who knows

My heart aches with fear. Does this ever end ?

To all the new girls..... this fear raises its ugly head :devil: every now and then , so dont get scared If it ever happens to you , please come here and let us support you.

Thanks to all of you and love you all lots xx
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Unread 04-05-2002, 03:34 PM
my adventures with 'cancer head '

Dear, Sweet Robyn

It breaks my heart to think of your heart aching with fear.
I am sure this cancer head syndrome is temporary.
I believe you just celebrated your first year anniversary of learning that you had cancer. I think women have a way of rising to a crisis. Doing exactly what needs to be done. And continuing with all the other things in life that need our attention. So, here you are a year later. Healthy and well. Perhaps your poor brain is just starting to breathe again. Realizing all that you have been through and how scary it was. Now that your body is physically able, your brain needs time to recover as well.
I am confident you will be your old self again soon. And then I'll probably be where you are now. We all lean on each other.
I'm glad you posted. You are such an to this forum.
We love being able to support you in your time of need.

s karenann
Unread 04-05-2002, 04:08 PM
my adventures with 'cancer head '


Oh, my friend, I am so sorry you are going through this right now. I went through it a few weeks back. Who knows what triggers it? And my condition was only precancerous. But I still worry that it could come back to haunt me.

On the bright side, you already know about this and are aware of the risks. And I know you are taking superb care of yourself--eating well, sleeping well, praying, taking your herbs, thinking positive thoughts. With all that in your favor, your body is going to take care of you!

This too shall pass.

If you aren't happy with your oncologist, absolutely look for another one. We all need someone that we know is on our side and that we get along well with. Good luck in you search.

Many 's coming your way. And thanks for always being there for the rest of us when we are going through this, too.
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Unread 04-05-2002, 04:37 PM
Robyn, This is Common!

I just had my first anniversary 3/28--in fact, as I drove past the hospital today I realized that it was this date a year ago I came home. The doctor walked in, asked what the "big concern" was I had to discuss I'd told the nurse, and I screamed, "WHAT'S THE CA125?" at him! I think by the end of the appointment he probably went back to the first oncologist and begged him, on hands and knees, to take me back! I've heard from survivors farther out than I am that it can take a while for this fear to lessen and that around anniversaries and appointment times it is common to become nervous, afraid, etc. We're all individual--I think for some it eases sooner, and for some, it's later. At first there was the shock and then the push into treatment when we were watched over and at least doing something, rotten as chemo (or radiation) was. Then, done, pushed out the door, and not so much watching, but that waiting... I have two things to say: change doctors if you are not satisfied/happy with this one. I had to. It was a hard decision but my first one and I were the worst possible mismatch for one another and I came to fear him.
Honestly! I was afraid to talk to him! Second, I can recommend a couple of books that hopefully you can get--these are books by survivors who know what this time is like. The first is "After Cancer" by Wendy Schlessel Harpham, MD, and the other is "Dancing in Limbo--Making Sense of Life After Cancer" by Glenna Halvorson-Boyd and Lisa Hunter. If my mind serves me right, you're in Australia so you may have to hunt around or go by Internet--but they were VERY helpful. Rest assured--what you're feeling is normal! It's a terrible feeling--but normal!
Unread 04-05-2002, 07:40 PM

Oh Sweetie~ we all know this comes in spurts, but we always think it's the last one...then we get another 'cancer head' week and wonder when these nightmare times will end. You know what I think it is sometimes....I think it's your brain and heart catching up with all the things we have been through. A delayed post traumatic stress disorder.

About 6 months after my surgery I had a flashback. It was the scariest thing. I was driving home from work and all of a sudden there I was on the gurney again. I could see myself being wheeled into the OR, the ceiling flying by as I lay on the gurney. I could hear the sounds of that day...smell the smells I remembered. It was so was happening again! I don't even remember the rest of the drive home. I 'came to' sitting in my driveway, shaking and sweating. I have no idea how much time had passed.

I think sometimes the mind just does not accept what it finds too horrific to deal with at the time. We are so busy trying to be strong and just endure it, get through it with some dignity left, that our minds block it somehow. And then...when we are feeling a bit stronger, our hearts relaxed strikes us again. Our psyche has to deal with it and put it in a small pieces we can cope with this time. I am just guessing and trying to make sense of why it keeps happening. And I think the what-if fears are part of this. Our minds were not prepared the first time and they are trying to prepare themselves back in time somehow.

Ahhh...the human brain. What a complex thing, huh? I love puzzles and am always trying to figure stuff out. This is one that keeps eluding me, no matter how much sense I try to make of it. Noone knows this fear if they have not lived it. They don't understand the stark terror of lying in bed with silent tears streaming down our cheeks imagining ...what next...when we get our diagnosis. Those are days none of us will ever forget. The heart remembers, too, and the sadness is with us even in our celebrations. That tiny little dark part of whatever it is that makes us who we is still crying and asking...why? Why does anyone ever have to go through this?

We are here for you, Robyn, sending hugs and love. Just talking about it and getting it out helps. I hope by the time you are reading this you are feeling alot better and brighter. You have a world out there waiting for you. Go get it, sweetie~

{{{{{{{{{{{{{hugs and love}}}}}}}}}}}}}

Unread 04-05-2002, 07:51 PM
my adventures with 'cancer head '


I wish there was a way that none of us had this creep up on us from time to time. While I don't particularly care for this fear that comes along, I may be odd in this, but I also feel it helps in some strange way keep me grounded in reality. Not meaning to say that I want to be paranoid of it coming back but more of a little nudge of a reminder to make sure I take good care of myself and keep a close eye out "in case".

On the positive side, it also helps remind me how precious life is and how thankful that I am to have beat this and how I plan to keep fighting for good health in the future.

I'm so glad you spoke to someone when it started getting to you, that was a very smart move on your part. I hope you'll be able to find another Dr if that's what you decide. It certainly does help to have someone that you not only trust but also feel comfortable with.

In the meantime, we're always here for you, ready with lots of 's.

Love ya gal!


Unread 04-05-2002, 08:55 PM
my adventures with 'cancer head '

My heart goes out to you and I pray that the replies you've received have helped. I haven't had this experience with 'cancer head' yet, maybe I'm in denial and it hasn't sunk in yet, I don't know. I am just so grateful for the support you give us all and just had to let you know that you are in my prayers.
Unread 04-05-2002, 09:05 PM
my adventures with 'cancer head '

You know, Robyn, I certainly know how you feel. While reading the posts from the other sisters I can relate to each experience. As you know a year has passed since my surgery; and I began my treatments in April. At this time I feel I get very nervous as well. I think about where I was at this time last year. I think it is finally starting to set into my mind what happened to me....and I freak. All I can say is that I keep very, very busy. If my mind lies idle for too long I am just asking for trouble.
You just remember we are all here for you.....and YOU WILL BE FINE!!!!! I feel it. I know it.
Love and HUGS
Unread 04-05-2002, 10:54 PM
my adventures with 'cancer head '


As I was reading these posts from the other ladies, tears and tears started streaming down my face! I wish I could come and hug each and every one of you - especially you Robyn! I had no idea that others felt and thought the same things I did too! Robyn you are such a wonderful person and a wonderful asset, and although we don't know why or how these things happen (that is what I am trying to do now), I keep telling myself and now you that God has a plan and these things will also pass. Just know that you are much more than you know! Even if the friends are people you have never met face to face, the lives you and other hyster sisters have touched are so innumberable! Please start feeling better soon, and I hope your thoughts settle as prayers reach out to you. You are a very strong person, both in soul and heart, but sometimes we all and it helps us out! I am still waiting for mine! and keep !!!
Unread 04-06-2002, 05:08 AM
my adventures with 'cancer head '

Sending a few more hugs to ya (((((Robyn)))))!!
I can't add anything to what our wonderful friends have already said here. I hope and am sure these feelings willl pass soon for you.

Hugs and Kisses my friend!!
M. xoxo

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