Now What?

When I first found out that I needed radiation for my SCC all I focused on was dealing with it. Finding out what I needed to do to get through it. Focused totally on the radiation part, not thinking why I was getting radiation.

Now I have 3 radiation treatments left and the "C" word is tatooed on my brain. I hadn't really thought about it, but now that I'm practically done, all I think about is cancer. I'll be done w/ treatments on Febrauary 25th, yet don't get the ct-scan until April 2nd to find out if my cancer is gone. I understand waiting a month is normal.

So, how the heck did (do) you people deal w/ the down time? The time in between treatment ending and getting your test results a month later? Then waiting for the next check-up, etc.

Thanks,

Rick

I had to wait three months. They told me that if I was tested too soon there could be false positives.

The longer you go, the less you'll think about it. You'll still think about it everyday, but not every minute.  Think of a clean test as not having to worry about it so much for six more months.

Rick--great news that your almost done, hope you tolerated treatment well. I was the same as you---I did not even think about cancer at the time of my diagnosis. Like you, I only focused on doing what needed to be done at the time. After treatment I had my father's terminal illness to deal with, so that was foremost in my thoughts for a couple months. It wasn't until about 4 months out of treatment that the fact that I actually had had cancer hit me.

I don't have any advice for you, because I am still having difficulty with it. Every ache and pain scares me now, and the fact that I was initially misdiagnosed doesn't add to my comfort level. I guess I wanted to say---you are not alone!

I need a hobby, I guess, one that doesn't include worrying!

I'll be waiting with baited breath for two things - one to hear you are done and two to hear your thoughts.  My husband has already begun the 'what happens' next thoughts and he isn't finished.  Focusing on tomorrow is the best thing any of us, patients or caregivers, can do. 

But, I said to my husband "one day at a time right now....PLEASE!" 

Thanks everyone for your thoughts. I guess the bottom line is. There is no real answer on how to mentally deal with the waiting game. The best advice I've heard is, try to live in the moment (day to day), keep busy, and try to stay positive. Which isn't easy when you've been a glass is 1/2 empty kinda guy.

I will tell you all one thing that has helped me all along from day one. I go do daily Dahn Yoga. And for you tough guys that think Yoga is girlish. I was right there w/ you. I'm an ex-professional race car driver, an off-raod jeep and dirt bike rider, skeet shooter. Have raced races like the Detroit Gran Prix and the Long Beach Gran Prix. Deep water SCUBA diver.A tough guy business owner.

Yoga was for, well. Girly men. But it has really helped my mind to become more positive about life in general and the ability for the body to help with the cure. Plus it gets me out of the house every morning before radiation. I would highly recommend it.

But I guess for us. From here on, every toe ache will make us think the worst. Monday will be my last radiation. I am told that I am a very rare case. The pain and the suffering has been minimal in comparison to the stories I hear and I thank God for that. Plus knowledge is king. I have done it all. I think maybe I'll post some things to try that worked for me.

God bless you all.

Rick

Hi Rick,

This is a tough period for patients, the in between period. In between sickness and a return to health. When you first get diagnosed the world revolves around you. Everyone you come in contact with is concerned about how you feel, how you are eating, your bathroom habits, everything. When you finish treatment you are on your own. The regular weekly checkups stop and you are left to try to figure out which of your little aches and pains warrant a call to the doctor and which ones are just normal. Then there is the ever present realization that you actually had (or have) cancer. Like you said, when you are going through treatment, the treatment not the disease is where your focus lies. I am two years out of treatment and still have the fears and concerns that you speak of. With every scan or checkup comes a nervous wait for results. There are times of surfing the web endlessly looking for reassurance that my cancer won't come back even though I know that such reassurance is certainly not available on the web. I don't know if any of this ever goes away but I do know that I have learned to deal with it better now. What fills the void is normal, mundane, day-to-day life. Thank heavens for that! What's unimportant to you right now (like that 3 putt) will mercifully become important again. I'm sure that, although you will always be concerned about test results and doctor visits, like me the sting will become less painful as time passes and your life gets back to some sort of normalcy.

Good Luck

Joe

PS: Doesn't that light at the end of the tunnel look good? One good way to help with your recovery is to help others.

Very well said Joe. I think the most important thing that comes out of most of these posts is realizing we aren't alone in our experiences. Everything we feel or worry about as individuals is being shared by thousands of others and while I wish nobody had this dreadful disease it is comforting to know I have others just like me to lean on, and they can lean on me.

Rick

Interesting posts! I wanted to add my 2 cents here: I wondered if I were alone in the fact that for months I was the center of all my loved ones attention-as well as all the Dr's and nurses, etc-and after all the hoopla of that, I felt abandoned! It was like my life WAS my cancer and then-not anymore. I didn't know what to do with myself or my time. It was so consuming. Then normal life started to dribble back and I found myself bored and unremembering what normal life was all about. I live (and do business) in a small town, and had strangers as well as friends sending cards, flowers, gifts, praying for me, etc etc. And the local hospital/clinic personnel were attentive and super. I was "special". And then, not so much anymore. All because of cancer!!!!!!!!!! So it's been an interesting transistion back to normal Gayle, wothour being defined by illness.

 The other point is the trying to not worry---days were/are OK, but it's the nights when I can't fall asleep and the "What If's" start! Doesn't matter what anyone tells you, they can't stop your mind; and sometimes neither can you. So I think, and relive the whole ordeal, and wonder what I'll do IF it recurs. I'm at the mercy of my own overactive brain-try as I might not to be. I think that's normal and will get better with time. As everything else has!!!!!!!!!!    Gayle, SCC, unknown primary, Stage IV, 10 mos out of treatments (cisplatin, IMRT, dissection)

Hi All,

 I'm a 4+ year survivior of Stage IVa SCC in my
neck.  I made it through a radical neck dissection, 9 weeks of
chemo concurrent with 10 weeks of radiation.  I remember when I
was first diagnosed, sitting in my chair and worrying about what the
future held for me and how it would affect my family.  About an
hour later I realized that nothing had changed, I still had cancer, had
a rough road ahead of me and that I had wasted an hour of my life
worrying about something that was beyond my control.  Since then I
have adopted the attitude that I will dictate the terms of my
illness.  I still do all of the things I did before cancer -
travel, boating, fishing, yard work, hiking, camping or anything else I
choose to do and when I choose to do them.  The only change I did
make was to stop putting things off that I hoped to do someday and do
them when the opportunities arise.  In my mind, cancer cannot
defeat me unless I allow it to do so.  I wear my scars as a badge
of honor and take comfort in the knowledge that I am kicking cancer's
ass.  While my cancer is always in the back of my mind, I don't
allow it to control any aspect of my life.  I believe attitude is
the most important weapon we have to beat this disease and as long as
we're positive good things will happen.  Stay strong.

Glenn