Ok guys, I need yet more advice.

I know this sounds stupid but I have had a sudden realization (actually Harry and I both had it at the same time) that I have been looking at this wrong and it has led to a difficult emotional situation.

We have been so busy just getting through the treatments that we were acting as if once this was done we were through.

Then I asked the doc what comes next and suddenly I felt overwhelmed. I new that they would have to do the scans and the x-rays but it just dawned on me that they could come back showing that he still has the cancer. We both talked about this the other day and we are both struggling with the want to know, don't want to know thing.

We are feeling a lot of anxiety and stress. I brought Harry home from the hospital finally today. He has that damn C-diff infection again which is why they kept him at the hospital an extra 3 days. Because I have become such a good nurse they agreed to let him come home. Otherwise they would have kept him to Thursday.

But we are now in fear of the tests coming at the first of June. And then 3 months after that and 3 months after that and so on for the next 5 years. All this time doing the treatments it just never occured to us that this wouldn't be over when the treatments were done.

I guess that on some level I always knew, but I just didn't think about it until that last bag of 5FU finished its last drop and now we are just waiting. He completed his last treatment Saturday night.

He was doing so well before I took him in for the last treatment. Today when I brought him home he said that he thought he was dying. It was an anxiety attack so I gave him xanax. But it made me think about a lot of other things.

I guess what I am wondering is how do you get through the anxiety that surely comes every 3 months with the check ups and especially the first time?

This is soooo damn hard!

Thanks,
Cindy

Yes -in the beginning the tests and the wait are scary as hell. I can only tell you that this WILL get better over time. I went through an entire jar of Zanax myself. My wife forwent the drugs but had a nervous breakdown late in my post Tx phase. Plus there's an emotional letdown at the end of treatment that you're not doing anything more to fight it. This is also the time that depression commonly sets in. There is nothing clean cut about this disease, but if you understand the dynamics of what is happening, you can make it more bearable. The feelings you are having is pretty much what all of us had to go through.

Cindy-
I am 2 1/2 years out from treatment and the anxiety does tend to dim with time. Somewhat, but never completely. I didn't understand why I was feeling depression this far from treatment until I read the book "Dancing in Limbo". There is a normal two year grief period after surviving the treatment for the big "C". It can be quite an emotional dance, but this book was excellent in explaining the process to rise above and adapt to life after cancer. I highly recommend it. - Kris

Dear Cindy,

It is totally normal for both you and Harry to be feeling this way! My husband Ron is now 5 1/2 months post tx and he goes to see his doctors every 2 months. The first checkup was so scary because you're right, you just don't know if the cancer is gone or not!

For us, we are now able to "sort of" forget about the cancer and move on with our new life, until the day of next doctors appt. On that day we are both very nervous and anxious. I don't think you would be human if you didn't feel that way. Knock on wood...so far so good for us! I will pray for the same good news for you and Harry.

Take care,

Shelley

Cindy,
No the doctor appointments never go away unless you want them to. I'm 8 years out on my first occurrence and still get scoped every 3 or 4 months.

You can look at these appointments one of two ways. 1) Living in fear of them every 3 months and worrying that the dr is going to tell you the cancer returned OR 2) you can look forward to it as the day the doctor is going to tell you that you're still healthy and there are no problems. I much prefer the later approach. I also prefer to be seen every 3 months because that way, I feel if anything is going wrong, my doctor will catch it early enough to treat it.

My doctors were certain I was cancer free at the end of my radiation so I really had no reason to think otherwise. I decided there was no use worrying about it, I'd get on with my life. Unless your doctor thinks there is some reason to worry, I'd suggest you take the positive approach.

Take care,
Eileen

Hi Cindy; My first experience with cancer was 12 years ago, and I remember so well the anxiety that would start about a week before my check-up. I took a little valium those weeks and gradually after about 5 years the appt's were not much of a stress.
I tried to remember that experience this time around. Time just has to get laid down like brick, and gradually you will have a foundation of confidence. One thing that comforts me is that I know the ckeck-up is my ally in this war aginst SCC, so rather than dreading the appt I actually look forward to it. It is a good time to get all those pesky mind niggling questions answered. My recurrance came hard on the heels of the end of the rads. The docs hardly believed that anything could survive those rays...so it is definitely in my favour to keep on getting checked.
I'm not very confident yet, but I know that it will come.
All the best to the two of you making this incredible journey together.
Fran