will I ever be able to think of anything else?

[debzak]

Hi guys

So I was diagnoses 11 months ago, stage III rectal cancer. My lymph nodes were clean, but there was cancer found outside of the rectum in the soft tissue. I did 8 rounds of oxi and 5-FU, 5 1/2 weeks of chemo radiation, then an LAR with temporary ileostomy (to be reversed over the summer) and I am now doing 4 rounds (14 days on 7 days off) of Xeloda as a precaution. Tecnically I am NED (I guess) following surgery. I should be relieved, right? All I do is think about it coming back, or them finding it some place else. My kids are 15 and 11. I want to be around in 7 years to see my youngest daughter graduate from high school. I find I spend most of my quiet time thinking about this horrible disease. Will I be able to think less about it as time goes by? Is there really a such thing as NED? or is the cancer just hidding somewhere waiting for me to relax and then it will come back?

I found out about my illness 1 week before my 44th b-day last year...I considered it the best birthday gift I ever got...life...(I even drank barium with my birthday cupcakes!) If I didn't find it then, who know where I would be now. My birthday is approaching again...I am happy to be alive, but sometimes I can't help but wonder (as I am sure you all do) why me? I am tired of being strong, going through the treatments, test and scans. Putting on a happy face and pretending everything if fine. Everything is not fine, I am terrified of dying while my children still need me (I know, they will always "need" me).

How do you put it out of your mind? Or maybe I shouldn't put it out of my mind? I should always be aware and on the look out.
Thanks for the support.

Debbi

[bellavida]

You are reading my mind. I just got my diagnosis in October. I did the 5.5 weeks of chemoradiation and will have my resection in 22 days. I have 5 kids but only 2 under 18. They are 8 and 9. All I think about is them and my husband. I am not scared for me, I am scared for them. I even think my older children still need me, even though they don't think so. I think about the grandkids I'll never meet and who may take my place with my husband. Will she love my babies like I do? Will she be nice to them?

I also feel the same way about recurrence. I have read so many posts on here of recurrences and have read that 50 percent of colorectal cancers recur. That is devastating to me. I keep hearing to think positive, but it's so hard to do. This stupid cancer has put a shadow over the rest of my life...It will always be right behind me, waiting. Things will never be normal for me again. I hope there will come a day when I don't think about it every single hour. I do have faith and I know that I am a strong person who can handle this, but no one has been able to teach me to stop thinking about it.

Sorry I can't answer your question...but I just wanted you to know that you are not alone in feeling that way.

[SammyJ]

I have had so so so many days of feeling exactly the same way. Like i just cant get it out of my head and feel so anxious about all the things that could go wrong from here. So frustrated with myself when i feel like i "should" be feeling grateful and positive. Its not that i didnt try or like i wanted a pity party, I just couldnt grab hold of that sense of joy and run with it like so many others on this board seem able to do. All i know is that it wasnt a choice to feel the way i did.

I also felt quite confused about which way to jump - abandon good sense and previous life plans and do whatever the hell i wanted to in case in came back, so i would have no regrets? Or live life as if i was going to be fine ie go back to work, keep saving for the kids education instead of rushing off to paris etc. In the words of John Lennon "life is what happens to you when you're busy making other plans...". So true.

Over the last few weeks i have got to sit in the sun and swim in the surf and hang out with my boys (just turned 9 and 11 last week) and its been good for my soul. The fog has slowly lifted and i am feeling better. Less thinking about what could go wrong. More thinking about the old plan. There is nothing i have done in particular to get to this place, i guess it is like a form of grieving for your old life and aspirations and you just have to go through it and give it time. Or perhaps i was suffering from depression or anxiety - both perfectly understandable given the circumstances and medications. I think starting to resume a more normal life, free from all the medical appointments, and re-engaging with work, going out with friends to movies etc has certainly helped. I am not overanalysing so much as i have other things occupying my mind.

So, not sure about advice for you. I think it just takes time and distractions and re-entering back into your old life before you can get comfortable. And i still cant even think about the maybes for my kids if was ever to not be around. Puts me rocking in the corner every time.

[dianetavegia]

I don't think it EVER stops. I had gotten to the point of not thinking of it everyday when my 'final' CT scan showed a spot on my liver. Now it's every day and every hour....... My signature gives the details.

[weisssoccermom]

I can only give you my perspective. In the beginning, like you, I obsessed about everything....every little ache and pain, every time I did or didn't poop. I scrutinized the size and shape of my bowel movements and every little gas pain was met with some doom and gloom scenario. Slowly but surely it did get better....I stopped worrying whether or not I had a BM everyday and/or if it was at the same time. I stopped living my life tied to the clock - worrying that if I went to the store I might need to go to the bathroom. Ok, there are potties at stores too! I came to realize that I am a person too....one who can eat a bad piece of food and get diarrhea and it doesn't mean that cancer has come back to haunt me. It was hard though, everytime a scan rolled around (this is the first year without one - yeah!) and those old fears resurfaced. My scope is in two weeks and while I'd like to say it doesn't scare me, I'd be lying to you. Overall, yes, it does get better but it does take time. I used to tell Terry to only try to go a day at a time and try to spend just 20 minutes that first day thinking about something else - gardening, DWTS, whatever it is that picques your interest. Slowly but surely, start increasing the time and even an hour a day that you're not thinking/obsessing about cancer is a godsend.

Your life has changed and you can't go back. You're going to have to accept that you have a new 'normal', both in the way you physically function and in the way you think about things. It doesn't mean it's wrong....just that it is. But yeah, you will get to the point when you won't let cancer rule your life....there's too many other things in this world to be enjoying!

Jaynee

[bellavida]

Sammie, Diane, Jaynee...all great responses. I don't know if they helped you Debbi, but I loved hearing what they had to say. It looks like it doesn't ever really go away, but we can look forward to days when we don't think about it and cry over it all the time. I can't wait.

Vida

[elise]

It took me about a year but once chemo was over, I started having hours of not thinking. Then half a day. Then most of a day. One day, I'll forget all about it for a day. I'm only 3 months out of chemo and I'm getting there.

I hope you get there too

Elise

[debzak]

Thanks guys. I know that things are different. I am a different person now than I was 11 months ago. (and I do worry just as much about where the bathroom is, as I do about my kids ).The first thing I said to my GI doc when I got diagnosed was that I had been checking the wrong body part for 10 years! I have been having mamograms for over 10 years, as my maternal grandmother had breast cancer in the 70'S and my mom had it a few years ago. Who knew that at age 35 I should have had a colonoscopy.

I don't think I will ever feel at ease or want to go more than 6 months without a scope or scan. If it comes back I want to catch it ASAP. I most likely had this damn thing growing in me for close to 10 years and I didn't know it until some weird symptoms presented (which at first I attributed to age and ignored them).

I actually sent an angry email to that Activa yogurt company telling them to stop telling everyone they can become "regular" by eating yogurt! You might have cancer! Then sent me some stupid thank you response saying that the would look into it HAHAHA.

I try to live each day as it comes... but sometimes even the guilt of doing this to my family makes me crazy! We didn't take a vacation this summer, nor will we be taking one the summer coming up (if I have my reversal in july). All of the little things we didn't do because of my treatment/surgery...all of the worry I put every one through.

I ramble....15 years ago today I was watchng Seinfield, standing in my living room, 1 day past my due date to deliver my first child (doc said walking/standing would induce labor). Her birthday is tomorrow. Now I sit here at my computer, crying, trying not to think of her life without me in it to guide her (and her sister).

To birthdays... may we all have and witness many more. (too bad I can't drink while I am on Xeloda)

Thanks again for listening and understanding

Debbi

[tammylayne]

At one of my last oncologist appointments I ask my doc HOW do I go and live my life...and at what point will I stop thinking about cancer??? He told me never...but that I would one day think about it less often. So...I just wait for that day to come. And little by little, I see that he was right.

I have been playing this game for 7 years. I am now 2 years NED, and until a test tells me otherwise, that is how I view myself. I don't think about the things I will not do, the grandchildren I will never meet, because I don't know any of that to be true. Anything could happen. I could live to be 101 and die from being struck by lightening. And think of all the good times I will miss out on if I spend all that time worrying about what could happen,,,what might go wrong...Nope...can't afford to waste those minute.

I would rather plan on being here for a long time...and not be, versus worrying that I was going to die soon, live my life with that fear...and be here another 50 years...but not lived for those 50 years...

Live your life,,,kiss who you love...hug your babies...travel...dance...be silly....sing...get a tatoo....do whatever makes you happy, whether it be for a moment, a year, a decade...it only counts if you do it.

Wishing you peace as you find your way....gentle hugs...

[Bev G]

Hello all,

I have had type 1 diabetes since I was 11. It's a disease there is NO getting away from, because it requires some decision making many, many times a day. Sometimes hour by hour. Since I've had it for so long, and since my professional career has been, for more than 30 years, as a diabetes educator, there has really been no getting away from it. For so many years, I was controlled in many ways by anxiety of what complication of diabetes would arise first (loss of my vision, loss of my kidney function, etc, etc) Every single time I would check my urine for protein (a sign of diabetes-related kidney disease) I would have a full on panic attack. I finally realized I was doing everything (pretty much) that I could to prevent these things from happening,and one day I just decided to try to stop worrying constantly about it. Over time, I did. Just about the time I was diagnosed with stage IV cancer, I had reconciled myself to stop panicking about diabetes complications. Ironic, sort of? So now, I've had diabetes since 1966---47 years, I think, but I'm terrible at math---but it's what I always "celebrate" at New Years, because that's when I was diagnosed. My diabetes "education" as an 11 year old consisted of being told "If you ever eat a piece of candy again, you'll die", and yes, even that many years ago people knew that type 1 diabetes was not caused by eating candy!! So, by about Valentine's day, I went without eating a piece of candy, then, on Valentine's day, I did...and I didn't die! Over the years, I learned a lot about it, how to manage it, how to live with it. My first job was as a counselor at a camp for little kids with diabetes, and I was teaching the 3 and 4 years how to give themselves insulin. Then in college,I learned first hand (sort of) how to deal with a diabetes-complicated pregnancy, as I had one and delivered my son 3 days after graduation.Then I spent my professional career learning more and more about it. Learning more and more ----> ------> feeling more and more in control. Not being immodest here, but I published the very first paper in the peer-reviewed literature about home glucose monitoring during pregnancy, and had, at that time, the clinical support of virtually no one (not the OBs, not even the endocrinologists)---well, look at home glucose monitoring now! LOL!

My point (eventually I get to it---some would be saying "yawn" at this point, I know) is that what Fletch says in his motto "Who can add a moment to his life by worrying" (or something like that) is just so true. We can't! it doesn't matter that it's not fair, or we have kids, or we had great life plans, or whatever. WE CAN'T CHANGE WHAT WE CAN''T CHANGE. We can only work on changing how we feel about it. We can search to find doctors we can trust, so we can transfer some of the worry to them. We can try to be present in the moment we are undergoing something painful or scary, then try to let it go as soon as it's over. We can try to remember that whatever will be found out on a scan is already true, and the scan is really just providing us with information we need and can then act upon. We can try, as best we can, to enjoy each moment, knowing we may have many, many of them, many years of them, or not so many of them, but it is ours to make of them what we will. We can try to remember, every time we get scared, that THE cure may be just around any corner. It WILL happen, and it may happen someday soon, when we're not even really expecting it. It may happen in time for 100s of thousands of us. There are thousands of very determined people working on it! I never expected to survive this long with stage IV CRC, but I am, and, this is true, I rarely spend time worrying about it anymore. I am quite aware that I am statistically likely to have a recurrence, and if and when it happens, I'll deal with it as well as I'm able.

Best wishes to you all. I hope you can find ways to avoid wasting all the time worrying I did on stuff that never happened to me due to my diabetes...47 years and NO diabetes-related complications. 3+ years and no cancer recurrences yet. Not saying it won't happen, just saying I'm like Scarlet O'Hara---I'll worry about it tomorrow

Bev

[Rob in PA]

Hi Debbie,
In regards to your NED question... yes, there is such a thing, and yes, until you have your next scan you are NED. As stage III, if your surgeon was confident that he/she removed all of the KNOWN cancer, then yes, you are NED until someone tells you otherwise.

Do you ever not think about cancer everyday? No. Sorry. But it does get less and less of a detractor. I've thought about my cancer everyday for the past 1,913 days. Some days it is merely a passing thought, some days it is more noticeably annoying.

My kids were 6 and 9 when I was diagnosed and now they are 12 and 15.......and that is what I focus on nowadays Oh, almost forgot, I was married 13 years when I was diagnosed and now have been married 19 wonderful years to my best friend and caregiver

Hang in there, enjoy the NED status and let the bad memories fade away with time.

Rob

[Kekeg]

I have many of same issues. During treatment focused on chemo and trying to keep working. Now I am so anxious, I should feel grateful and positive but I do not feel that. I worry about cancer spreading and about wasting all my time working and that If cancer returns will regret not spending my time on other things. I am tired all the time. Started on antidepressants in Nov and see Dr to follow up on the meds this weeks. May be helping a little. I just don't feel like myself yet and keep waiting to be normal again. You are definitely not alone. Thanks for staring this post it helped to learn others feel this way.

[Jachut]

I'm to and a bit years past diagnosis and it's still a pretty big part of my everyday thoughts - I don't worry at all about dying or a recurrence but I m pissed off and unaccepting of my new normal, I cannot imagine living the rest of my life like this and I m still saving health issues from the treatment. I've made progress towards moving on but have a loooong way to go yet.

[Jen]

I still think about it daily. When it creeps up it is usually a motivator..but sometimes it can still tap me on the shoulder and make me think. It has inspired me to seek out a spriritual path because I was so ill equipped to deal with pain, suffering, and loss. I have learned so much more compassion for how greatly others suffer. I am aware of living in the present moment - and have entirely different aspirations because of my cancer experience. Just booked a trip to the lower Florida Keys for Easter because why wait – we vacation differently – I savor more, observe more, I am so motivated to keep going and exploring because a lifetime can be so short – so nothing is delayed. I was on the edge of life for a time, and those were some serious lessons. I had had hardships before but had never known despair. Now I know my world can be torn asunder so I take care of the things that matter most to me. I now can see the stages of grief clearly. I didn’t get to celebrate the milestones without reservation (there was a lung spot, or rising CEA) always a reminder of how things can change.

[michelle c]

It will get better....

I can totally relate to what you're going through and I just wanted to let you know that it will get better. There will come a time when cancer won't consume your every thought, trust me. I can still remember that constant feeling of dread and anxiety. The worry won't go away completely but it will get better and you will start to feel normal again. Be patient and be kind to yourself.

Love and hugs,

Michelle xox