WARNING: Long 8 month vent release.

Did this all really happen? Tell my brain to turn it off.

I just need to put this out in the universe. I had a very quick, fortunate experience with cancer. I am struggling with the whole did this all really happen. Within one month I was diagnosed with cancer, had surgery, and then I was free of cancer. Friends have forgotten that this even happened, but it is always on my brain.

I feel that I am blowing it out of proportion, I didn't have chemo or radiation, but does that make it less real? I live in fear everyday that it is coming back. I sometimes feel that the doctors must have gotten it wrong because it makes NO SENSE that I got tongue cancer.

I also feel that I don't have the right to worry since it was such an "insignificant" event and so many others have it so much worse than me. Who am I to complain? I am so fortunate. I found, they fixed, all done, end of story. I have cried maybe twice from this whole ordeal. But yet, is it the end of the story?

I have been cancer free for 8 months and during those 8 months I have had 3 biopsies, 3 ultrasounds of my neck and a CT, plus monthly doctor appointments. Everything keeps coming back negative(YAY), but it keeps this at the front of by brain! And every ache in my mouth and sore is just like reliving it all over again.

Every time I talk, every time I eat, every time I sing (i love to sing one of my favorite things to do) and do other random tasks I am reminded. That I am the same and yet somehow I am different.

As a Christian, these fears weigh heavily me. Feeling that I am not fully relying on God and that I should be more grateful. Which I am extremely grateful, I just don't know how to give up these fears and anxieties. I keep my self occupied because I work full-time, I have a 2 year-old son, and a wonderful husband. But I feel there are reminders everywhere. DOES IT EVER FULLY GO AWAY? How do I turn off my brain?

Thanks friends. I don't know who to talk about it, or who would understand. Just caught in an awkward place, and wondering if this is my new normal.

First off, NOT insignificant. Cancer is cancer. There is an enormous spectrum of possibilities post-Tx. I am so happy that yours went the way it did.

Second, as a Christian you know that this life isn't all there is. The Lord and He alone knows the number of our days. It is a finite number and I have tried to reduce or eliminate the number of them spent worrying about anything. I stumble frequently but the goal is always to recognize I'm worrying, hand it back to Him and get on with what's left. Take the energy spent worrying and tell the people you love how much you love them, go see a play, do stuff you used to say you didn't have enough time to do. Make the time to do them! I believe stress played a large part in "switching on" my cancer 2 years ago. For the life of me I can't remember even one job I was working on that was so stinking important then.

I'm sure the rest of my life a sore throat will make my mind wander. My job is to allow it 10-15 seconds and move on.

Lori,
this is part of the "new normal" thing mentioned often around here. Living in fear and anxiety is part of what cancer does to your mind for quite a while and you will never totally escape it, but like a bad relationship, you will eventually give it less thought time. It's like Pauls thorn, to put it in a Christian perspective. (II Cor. 12-7).

Do keep all of your appointments, recommended scans and tests. If you are cancer free after 2 years than things should start to get better, emotionally, for you.

Tongue cancer in non smokers/drinkers is rare but it does happen and with HPV becoming so prevalent it is becoming all too common. Today, if you were born before 1965 then there was an 80% probability that alcohol/tobacco products were involved. If you were born after 1965, there is an 80% probability that HPV is involved. It is estimated that 80% of the population has HPV today but not all of these will develop cancer. (if I was wrong about the year please correct me)

Lori,

As the old saying goes, time heals all wounds. Trust me what you feel and fear today will diminish over time even though you will never forget. All of us experienced the "why me" and "what now" concerns post Tx and the majority just accepts it over time and we move forward. Some of us need professional intervention which is always an option. Perhaps give it some more time and try not to dwell on the past and if you need help then seek out these professionals who are licensed and trained to help you.

Fear does diminish over time. I too had no precursors for this disease. Hopefully they got it all and yes with most oral cancers the treatment thankfully isn't the long drawn out treatment of many other cancers but it can be just as life changing.

What I am about to say is just a heads up.

I tested cancer free in the nodes on my CT as well. Also on an MRI. My surgeon not only removed my tongue tumor but also removed 40 lymphnodes - just to be on the safe side. And sure enough I had cancer in one of them. This cancer can seed to the nodes and NOT be picked up on a CT when it is at the microscopic stage.

That said - keep a close eye on your neck and get to know what is normal for your mouth.

Usually the highest incidence of recurrence is in the first 18mos - after that it's 3 years... and then 5 that are milestones.

As each of these dates pass things will slowly get easier. I am approaching the 3 year mark for my surgery in 3 weeks.

As with anything in life... there are no guarantees. Live your life and enjoy it.

hugs.

Lori, in time you will begin to feel differently about everything. Im so sorry you are bothered so much by your situation. Many cancer patients will seek out therapists or counselors who are experienced with helping them to move past their illness. That is no small feat. The horror of what you have just been thru are still so fresh in your mind it makes it harder to get past everything you have been thru. In time it will get easier.

Personally, I have always been a very independent and strong person my whole life which helped me deal with my illness. I am a single parent who raised her children without anyones help. In my life, I choose to avoid worrying and the "what if's". Instead of going there, I focus on helping others which also helps me to feel productive. When I was growing up I learned how to look at the whole situation (no matter what it was) and look towards the solution. I also learned that worrying will never change a thing and only makes you upset which impairs a persons ability to think clearly. This isnt easy to always follow but it can be learned with lots of practice.

Feel free to come here often and let us help you. By being part of our group, you are not alone with this. We understand where you are coming from and how difficult it is to move past the illness and horrendous treatments we all have gone thru.

Hi Lori,
Hear! hear! to all that was said above. It's is your new normal for today, but as time passes it will change. You mentioned you feel like you are not fully trusting G-d, probably true. However do any of us!? I say maybe for a moment, then we slide back to the fears. Guess the silver lining of that is we run back to G-d and lean on him more often, all day, every day. many blessings to you and your family.

Sorry to hear about the anxiety but it is pretty common. Rather than wait, how about contacting a local support group like http://www.cancersupportcommunity.org/. Also, seek professional counseling now rather than put it off.

Why suffer and wait. It is not much different than suffering physical pain and saying just wait, time will heal. What about now? Get some relief, why on Earth wait?

Good luck
Don

Lori, I also was on the lucky side with no chemo/rads. The thought of recurrence always lurks, but I try to shove it to the back of mind, as to be frank, there is nothing I can do other than follow the doc's directions. It does get better over time, but a sore mouth/throat will definitely throw everything into question.

I was surprised to see you had so many biopsies/ultrasounds post surgery. I expect that contributes to the issue. I go every 3 months for a scope/checkup, and always get stressed a couple of days before, so if you have so many appointments, your brain doesn't get a chance to chill out. Is there a way to structure it so you're not constantly going? Has your doc told you that at a certain point the appointment frequency will reduce?

Thank you for your support. I think for me this is the first time I have had the opportunity to process it. I know that sounds weird, but with how quickly things moved from diagnosis, to surgery, to "all done", I have yet to grasp the concept. During these 8 months I have also had several other major life events: moved to a new city (and all that goes with it new doctors, new friends, new church, new stores,etc), started 2 new jobs, and became a landlord.

I have had to be brave, and only allowing myself to view cancer from that standpoint, BRAVE. And now that I have a moment to reflect I am caught on the how, and what next. I am definitely looking into volunteerism and gaining that perspective back.

Regarding all the appointments, biopsies and scans. I feel every time I go to the doc there is a new thing they are unsure about. So we watch it, then it doesn't change, so we biopsy it or scan it. I am going to the doc every two months and I have no watch and wait things right now (the first time since surgery).

I am beyond thankful for the amazing care I am receiving, and grateful for everyday I get with my beautiful family. Appreciating life even more now than ever before. I do think I am going to find some kind of support group to get involved with!

Much love to all of you! You all are amazing.

Glad to hear you are getting some space in between in between appointments. It really is impossible not to get jacked up before appointments. Mine have gone well, but I still feel vaguely nauseous when I go.

It's amazing that we just focus on doing what we need to do to get through it, then it hits you like a ton of bricks when it's all done and you really get a chance to think about everything that happened.

I went back and looked at my posts and I really struggled with coping around the same time frame, and felt very sorry for myself. I came here for a kick in the ass, and it worked, so I'm sure a support group will be lots of help!

Do not diminish your experience with something so scary. And, get rid of that word "SHOULD" from your language.

You feel the way you feel. You need to process that. Your fear is normal and expected and God knows that you will go through all of this.

Try to relax. Try some guided meditations - 20 minutes spent lying down with your headphones on can give you a whole day or two of more positive outlook.

In time, your experience will fade as different experiences crowd out this fear. Your two year old will get into the terrible two's, then the NO phase and next will be preschool and activities and there will come a point when something will bring you up short and all of the memories will come flooding back.

Consider the fear you feel now as a gift from God as you will be so much more aware and so much more understanding of how others feel when you hear the words "you have cancer". No one wants that diagnosis attached to THEIR name. You will know how that felt and you will be a better friend because of it.

For yourself - Remain vigilant, but not paranoid. That is a balancing act for sure!

Hugs, and go give that two year old a hug.

Donna

I totally understand what you're saying.

The amount of treatment is irrelevant. the fact that we are survivors is what is in the forefront of our minds. I am constantly reminded of the changes both physically and mentally. It's an every day challenge.

As we go through the appointments and "scanxiety", the challenges of reaching the "new normal", the fact we have been stricken by this awful disease remains. It's part of who we are and will be that way for the remainder of our lives.

I'm a musician and singer. The effects of cancer have impacted me greatly. As I've been practicing, I am again reminded of the last year and what this disease has done to me. I'm grateful to God for his mercy and grace. My faith has carried me when I had nothing else to carry me. Yet, like you, I have the same doubts and "scanxieties". It's only natural.

don't beat yourself up. I don't think it ever really goes away. How could it? I'm learning to embrace it as a part of who I am now. Just like my heart attacks and surgeries, it reminds me of the frailty of life and makes me appreciate the simple things.

Positive thoughts

"T"

Lori,

Not to diminish a bit what the others have said, the entire thread is full of wisdom, buuuuuuuut;

If I was you, I would print the two messages above mine and read them every day.

Good Luck,

Bart

Lori,

It's never insignificant when something like this happens. I heard a joke once that went "what's the difference between major and minor surgery? Major is when it happens to you." Friends and family may move on and think of it as a distant memory, but it in no way diminishes what you have gone through. It seems like everyone has already given you great advice. This is a process for sure and all of what you are experiencing is normal. I do hope that it gets easier as you have more time to process everything that you have been through.

Good luck with everything!

I just read this entire thread;) thank you! I just found out on Monday, was told that he seriously doubted it was anything to worry about, I went home thinking. It will be ok! He is a top dr in fairfax va, where I received my first biopsy.
I been on a roller coaster. I pray everyday, and I am doings best to have faith.