CancerCompass message board discussion started by rick51 on 2/20/2008 http://www.cancercompass.com/message-board/message/all,21146,0.htm Fri, 05 Dec 2008 00:00:00 GMT Fri, 05 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 rick51 Wed, 20 Feb 2008 00:00:00 GMT 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. ThreePutt Wed, 20 Feb 2008 00:00:00 GMT Thanks-Kinda makes those 3 putts not quite as important as they used to be, and I'm the king of 3 putts! rick51 Wed, 20 Feb 2008 00:00:00 GMT 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! Girlcat36 Wed, 20 Feb 2008 00:00:00 GMT 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!"  Mediator Wed, 20 Feb 2008 00:00:00 GMT 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 rick51 Thu, 21 Feb 2008 00:00:00 GMT 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 LuckJoePS: Doesn't that light at the end of the tunnel look good? One good way to help with your recovery is to help others. Defjoeb Thu, 21 Feb 2008 00:00:00 GMT 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 rick51 Thu, 21 Feb 2008 00:00:00 GMT 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)  gayleann Thu, 21 Feb 2008 00:00:00 GMT Hi All, I'm a 4+ year survivior of Stage IVa SCC in myneck.  I made it through a radical neck dissection, 9 weeks ofchemo concurrent with 10 weeks of radiation.  I remember when Iwas first diagnosed, sitting in my chair and worrying about what thefuture held for me and how it would affect my family.  About anhour later I realized that nothing had changed, I still had cancer, hada rough road ahead of me and that I had wasted an hour of my lifeworrying about something that was beyond my control.  Since then Ihave adopted the attitude that I will dictate the terms of myillness.  I still do all of the things I did before cancer -travel, boating, fishing, yard work, hiking, camping or anything else Ichoose to do and when I choose to do them.  The only change I didmake was to stop putting things off that I hoped to do someday and dothem when the opportunities arise.  In my mind, cancer cannotdefeat me unless I allow it to do so.  I wear my scars as a badgeof honor and take comfort in the knowledge that I am kicking cancer'sass.  While my cancer is always in the back of my mind, I don'tallow it to control any aspect of my life.  I believe attitude isthe most important weapon we have to beat this disease and as long aswe're positive good things will happen.  Stay strong.Glenn  Surveyor Thu, 21 Feb 2008 00:00:00 GMT Glenn,You're a stud!! Good for you man.Rick rick51 Thu, 21 Feb 2008 00:00:00 GMT Hey Rick ----when you first came to the message boards I had a feeling you were going to be 'a rare case' and do well through treatments! Good for you for doing Yoga, it has also helped me alot. Best of luck during your recovery period!    Teresa Girlcat36 Fri, 22 Feb 2008 00:00:00 GMT Thanks Teresa.With one radiation left, I have to say that I've managed to do pretty well.Prayers/family/attitude/ and yoga go along ways to getting through it.Rick rick51 Fri, 22 Feb 2008 00:00:00 GMT  ThreePutt:We are all different. I always believed I would get well. As I had such a deadly case of end stage Multiple Myeloma, I did not have any options. The treatment I chose worked exceedingly well and I was diagnosed in October 2004 . I said to myself "When the daffodils bloom in the spring I will be well" I meditated on that every day plus I saw my body healthy and killing off the cancer. When the daffodils came my bone marrow showed no cancer.  I still had it in my spine but kept saying by this time next year I will be healed.  I was..Not everyone has this ability but you are what you believe you are.  Big part of being well. Picture yourself in 5 years on a wonderful holiday on the beach , feet in the sand and being completely healthy.  Always view yourself as well and healed. I used to be an RN and we did this with patients with cancer and pain. Never knew I would have to do it for myself.  Take care and be well. MMS On 2/20/2008 ThreePutt wrote: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.   mmsurvivor Fri, 22 Feb 2008 00:00:00 GMT  Gayleann: I also found a form of depression once I was well, and life was not exciting  or how it was before Cancer.  I found out through help this is normal. We go through such horrendous pain, suffering and looking death in the face, it takes a lot to get back to normal.  My "adivsor" told me that if I had not stated that they would have worried about me.I went out and purchased 2 Budgies (You call them parakeets here in the US) Their song and beauty were a great thing for me to heal myself of the  "blues" it is not easy. Sometimes we feel guilty we survive and other around us did not. So you are perfectly normal and thanks for talking about this as it is not mentioned often.....Many can relate!!!   MMS  On 2/21/2008 gayleann wrote: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)   mmsurvivor Fri, 22 Feb 2008 00:00:00 GMT