New to this community-How to cope with what if's

MAliceR

Hello everyone. I am new here. My story began almost 4 years ago. I was diognosed with stage 3 colorectal cancer. I had the usual major surgery and my surgeon was very pleased with the outcome. He felt strongly he had gotten all of the tumor. I then underwent nearly 8 months of chemo. During chemo I worked. I am not sure why I was so crazy to work, even my oncologist strongly suggested I take a leave of absence and just deal with my treatment, but truth is, they weren't that bad. I got sick the day of the infusion a bit, but mostly tired. I didn't lost my hair, I felt OK most of the time. Just very tired. I got a lot of neuropathy in my hands and from my feet nearly to my knees. I did Acupuncture every week and within 6 month out of chemo, other then a little numbness in the balls of my feet and the ends of my toes, I was good to go.  I was feeling strong, confident and ready to take on the life I had been blessed to have. I decided I needed balance in my life and so decided to retire. I was 57 but had my time in and a decent pension, so I took the leap. Let me tell you it was the best thing I ever did. My daughter lives in England I was able to go visit often. My husband was still working, but he went with me when he had vacation time. When he didn't I traveled on my own. Then life changed again. I went in for my usual 3 months CT scan and they found a small tumor. It was only about  a 1/2 inch and luckily hadn't moved anywhere else in my body, it was just hanging out in my adbomonal wall. So, back I went for another major surgery and 6 more months of chemo. I went into it, having no clue what I was getting into. My last chemo wasn't that bad and I was retired this time, how hard could it be? Well let me tell you, it kicked my rear. There were days I couldn't get out of bed, I have never been so sick in my life, I lost my haor and there were days I wondered if it was worth it. But I got through it. I should say WE got through it, once again my husband was there every step of the way. He retired so he could be with me on my hardest days. He never failed in doing everything I needed when I needed it.

So this novel, brings me to where I sit today. I finished that last chemo in July. Since then I have been healthy and physically feel strong, my haor is back, we are traveling again, and about a month ago I climbed Diamond Head, I looked out from the top and finally felt like a survivor. For about an hour. That woudl be when I got the phone call reminding me to scheule my next CT scan, and cancer came exploding back into my life and took me down at the knees.  That is also when I decided I needed a counselor and she in turn suggested I find a good support blog so I can relate to others who are dealing with the same issues and recognize that I am not broken, I am jsut struggling.

I am terrified. Just writing those words causes me to want to sob. The first time I guess I had my rose colored glasses on and when my surgeon and oncologist said I had very good odds of never having a recurrence due to the successful surgery and the agressive chemo, I believed them. I thought I had beat the devil. Then the recurrence hit. Now I am terrified every time I have to have blood work or CT scans or even get a cold that something is wrong and it is back. I live in fear, afraid to plan more then a month out, for fear the next tests will show it has returned. I find that as I get closer to the next tests, I start looking at someone or being in a situation and thinking what if I never see this person again or what if I never get to do this again?  

My next CT scans are Monday. I am not scheduled to see my Dr for 2 weeks after that to get the results. 

I know I am not alone here. Please don't get me wrong, I am so grateful for the life I have been blessed to have since my first diognisis. I have so many people who love and care for me, but unless you have walked in the same shoes, you can sympathize but not empathyze. I guess my question is, how do you all deal with the constant ups and downs? The fear of the unknown and the waiting for test results and bracing for all the what if's? Or is this pretty much the new normal?

Thanks for letting me share. 

Mary

 

Trubrit

No, you're not alone...

but that doesn't mean you don't deserve to feel devestated.  You've been served a 'bum' deal, and its not fair. 

As you will find out, there are many, too many here, who have and are travelling the same road, and this is a wonderful forum to be a part of, because we can help you travel that road. We've either been there and can help, or are there and can understand. 

My heart always aches for those who think that they are cured, because for some, its short lived and hits and hurts when we have to get back on the band wagon of surgery & treatment. But we do it, because the will to live is strong.

Oh dear, I am late for date. I had better close. 

I just want to say welcome, and visit us often (well, I want to say more, but I better get outta here). We are here for you.

Sue - Trubrit

NewHere

Welcome

I am new here, so have not had quite as many ups and downs as others here (diagnosed Stage III C Colon cancer maybe 5 weeks ago, had surgery, starting chemo in about 10 days or so)

But even now the ups and downs and waiting are things I am starting to see being something that will continue.  Right now I am going with the advice that others here have said, one day at a time.  Not that I totally have that down yet  Before my diagnosis if you told me I was going to have a big section of my insides removed then go to chemo, I would have said no way and there is no way I could ever go that.  Now it just is.  I try not to think about the stats and the rest, if I do I would probably get down.  Even with chemo I have probably a 25-30% chance of it coming back.  Right now I am just trying to beat it this first (and hopefully last round).  

When I get down I try to shake it off, and depending on what it is, it can be quick.  Depending on my physical state, find something to do.  A walk, listen to music, watch some tv and even come here just to "speak" with people.  As you said, the diagnosis totally changes the level of empathy (which I thought I had before this, and probably was just sympathy, though I like to think I had empathy.)

Anyway, welcome again, though the reason, as always for people coming here, is not great.  I am sure there will be more people tuning in with more advice and thoughts.  You came to a good place to hang out.  Lots of caring people to help here.  And yes, there are even times when we joke and laugh

 

TheLadySkye

I guess the one thing I do to

I guess the one thing I do to minimize the amount of TIME for scanziety is schedule the scan and insist on seeing the doctor the next day.  It's one day of waiting instead of two weeks.  However, even THAT seems like an eternity.  I used to call the office later the day of the scan to see if I could get ANYBODY to give me the results or tell me I would be okay.  As you can imagine, they did not and I was stuck waiting til the next day.  Still, my sanity thanks me that I've insisted on getting results the next day instead of waiting.  It's my way of managing that one "what if..."

Annabelle41415

Welcome

Welcome to a board you never wanted to join.  We are a great bunch of people that can help you get through this and we have been where you were.  You aren't alone in your thinking and never alone here.  I'm glad that you have been able to enjoy your life after diagnosis and seem to continue up until the "call."  Mine was always a mental note of when my next appointment was and never did they have to remind me so I'd agonize for months which is terrible.  Scans are terrible along with blood tests and they always bring on undue stress.  I'm hopeful that your scan and/or tests come out great so you can continue your desired journey.  It's normal to wonder and this disease brings out the fears big time.  Let us know how you are doing.

Kim

John212

Welcome!

Welcome, glad you joined the crew here. I made the mistake of not even looking for such discussion boards as this one during treatment, and while I came out the other end ok, now I think I'd have had an even easier time with this bunch at my side.

I'm trying to imagine the view from the top of Diamond Head. What's it like?

 

Helen321

Same scenario, different

Same scenario, different timeline, different age group but same "fear".  I think it is a matter of realizing we're not as immortal as we thought when we were healthy people.  The first time I cried, I did surgery, I moved on.  The second time was a wakeup call, sadly I'm not Wonder Woman after all.  Darn.  I relax in between the scan periods and live.  Then when scan time comes, I accept the scanxiety, hang in there until it's over, get the good news, breathe, rinse and repeat.  No point in worrying in between scans, there's living to do. 

Helen321

What if . . . . you are the

What if . . . . you are the one who will beat cancer and grow old and gray.  Do you really want to look back and say "wow I spent all of those years worrying for nothing".  My answer to that is no. 

Easyflip

Hello Mary

and welcome to the group. I too have been told I'm NED only to have it return...twice! There is no easy way to handle the rollercoaster we're on. Luckily I'm NED now and I don't want to ruin this time by dwelling on something that hasn't happened yet and may never happen. One cancer lesson I took to heart was to live in the moment and appreciate the people around me today, the life I'm given today and how lucky I am and have been. I don't want to look back and think I wasted the time I was disease free by worrying about the disease coming back! To me that would be letting cancer win and not just being a part of my life but letting it take over my life.  And believe me, it's taken plenty from me already, I'm not going to let it take anymore then I have to! So I'm busy living, I'm going to follow your lead and retire early and see what's out there. I'm excited about my future no matter what happens. Good luck to you and know I'm pulling for you in every way possible, best wishes!

 

Easyflip/Richard

MAliceR

John212 said:

Welcome!

Welcome, glad you joined the crew here. I made the mistake of not even looking for such discussion boards as this one during treatment, and while I came out the other end ok, now I think I'd have had an even easier time with this bunch at my side.

I'm trying to imagine the view from the top of Diamond Head. What's it like?

 

Diamond Head View

The view from Diamond Head on Oahu is AMAZING! From the top you can see most of the Island as well as on a clear day some of the other islands. It is so high the buildings look like doll house furniture. It is worth every step! I wish I could share a picture!

The day I stood at the top I felt like a survivor. I made the climb, I DID IT! Today I got the scan results from my recent tests. I am blessed they are all clear with no sigh of cancer. I get 6 more months to embrace life as the blessing it is for 6 more months until the next tests.  

I am going to continue seeing my counselor, I have a lot of emotional work to do after nearly 4 years and a recurrence. But today, I am just very grateful for the gift of Diamond Head and clear tests this time. 

 

MAliceR

Easyflip said:

Hello Mary

and welcome to the group. I too have been told I'm NED only to have it return...twice! There is no easy way to handle the rollercoaster we're on. Luckily I'm NED now and I don't want to ruin this time by dwelling on something that hasn't happened yet and may never happen. One cancer lesson I took to heart was to live in the moment and appreciate the people around me today, the life I'm given today and how lucky I am and have been. I don't want to look back and think I wasted the time I was disease free by worrying about the disease coming back! To me that would be letting cancer win and not just being a part of my life but letting it take over my life.  And believe me, it's taken plenty from me already, I'm not going to let it take anymore then I have to! So I'm busy living, I'm going to follow your lead and retire early and see what's out there. I'm excited about my future no matter what happens. Good luck to you and know I'm pulling for you in every way possible, best wishes!

 

Easyflip/Richard

Easyflip, you are so right! I

Easyflip, you are so right! I am working with my counselor on focusing on the life I have while I am cancer free and not stressing to the point I miss the opportunity to live. Congratulations on deciding to retire early. Honestly it was one of the best things I have ever done. I have so enjoyed being free of the work stress and schedule and having a chance to travel and enjoy my family and friends while I can. Hearing today that my scans were clear, means I get 6 more months before the next tests to LIVE! It is a blessing. 

Blessings...

Mary