Hi Friends,

I know I have been doing my videos as of late, but several times I wanted to cry today and figured it would be easier to cry it out here while I type. I am bitterly sad at this point, I feel as though I am running out of crucial minutes and am having terrible nightmares. I feel left behind from the rest of society and even when I am positive and trying my best to make something of this I feel pulled 2 steps back. My favorite sirius radio show found out about my disease and did a really emotional segment about me on tuesday and it made me almost feel as if everyone knows something I dont.

I am running into, and seeing all of these people I never thought I would ever see again and I feel as if it is all a sign that I need to prepare for the worst. I already have a small small sore that has not healed in the last 7 or so days that they dont seem worried about but I am. I almost feel the docs dont wanna tell me that they did not get it all,or are too egotistical. I am just so sad right now and cant even explain the emotions I am having, first it was the last cig I threw down the toilet,felt better for a while and just woke up today angry with the world and it wont go away.

I am starting fights with people, I am at times hoping I just dont wake up because there is a better place than this or just overwhelmed with my own thoughts to the point of walking out of this house and just staying straight and seeing how far I can go. Even in the mornings I find myself just walking around the shopping center looking at people laughing, shopping, picking out pumpkins and there I amm, just staring, blank and confused asking where I went wrong. My fiancee' has escaped from all this mentally now and just goes through the motions, I just feel so alone again.

I mean, I have cancer right? I see more and more of the negative of all of this than the positive as of late. It may be the damn pills doing this to me since I started taking them again for my head and ear ache. Im sorry guys, please forgive me, I will try and do the videos more but today I really felt the whole " why am I doing this, this is stupid." " Nobody really cares but my mom and a few others, then when its over the show will go on and I will be that other person that well you know." I almost feel silly doing all of this, and literally stuck between a rock and a hard place. I almost feel like I have made it easy,or safe for people to ignore me and be even more distant. I think if I actually do pull this off and beat this I want to go really far away and start all over under a new alias. This shit takes your soul and burns it, I will stop now.

Sincerely,
Nathan

Oh Nathan I just wanna give you a BIG hug!! Wish you were here then I could do it!! How you feel now is what I went thru 3 weeks ago. I used to look at my friends and felt so alone and envious that they could just get on with their life and be so carefree. I think all cancer sufferers go go very similar emotions at some stage. I found it so hard to get through the day. So the way I got through it was "I just worry about getting thru today, and I'll worry about tomorrow when it comes". And when even that became hard - I just said to myself "one hour at a time - just get thru this hour". It's only been 2-3 weeks since then but I do feel so much better this week, so hang in there buddy. You WILL get thru this and you WILL feel better.

Minh

Nathan - you are going through exactly what my son went through during his treatment! I worried a lot about how down he was feeling and I had read about the effects of some of his medications and sure enough when I told Paul he checked his prescription bottle and it said "may cause suicidal thoughts". He called his doctor and felt better after that because he knew it was just the meds causing this. So maybe you could check with your doctor and tell him exactly how you are feeling in case he wants to change your meds. Paul had lots of sores, too in his mouth which were just part of the treatment. You can get thru this, Nathan! You have LOTS of people that care -sometimes, they just don't know how to react but the people here on this forum know what you are going through and it's good you came here to express your feelings. Crying helps, too - it kind of releases some of the pent up feelings so that you can move on to some better thoughts and feelings. It takes very small steps - sometimes even minute to minute but you will get there. You mentioned that when this is over, "the show will go on" and you will be that other person we know. Nathan, you will be an even better person because you will have survived this! More hugs coming your way!

Time to talk to your social worker Nathan. They will refer you to a counsellor who can help you talk you through your issues.

I understand every single one of your thoughts, Alex had them too.

Remember too that your immune system is down which will make you feel down, you have more stress than you can reasonably manage without feeling down and you are on serious drugs that can cause the sort of hopelessness you are feeling.

Listen to Anne Marie - it may be something simple like a side effect or even too much of a good thing that can be fixed by changing or adjusting your medications. For this reason you need to speak to your doctor about how you are feeling and what you are experiencing (ie nightmares, feelings of paranoia, being deserted by friends etc).

About the small sore. Nothing heals during radiation - you will have to wait till it is over before you see anything improve and even then it will be slower than normal. My Alex still has a small ulcer on his tongue which appeared during the first week of radiation and is still there, though smaller and less painful, 8 weeks after radiation finished.

Nathan,

I say your name and smile...my brother and best friend's name is Nathan. It's a good name.

Nathan, right now, your body is going through so very much. All of the medications the mental and emotional stress etc...it's going to take a toll. If you weren't feeling this way, you wouldn't be human.

The good thing is, you have people on these boards that can help and relate to you, we've been in a similar situation. I struggle everyday with the feelings you have. The key to getting through it is support, knowing you can't do it alone and knowing that you are not alone...because you are not, we are here with you.

I've put on my brave face and pounded my chest, determined to be strong enough to pull myself through this, however realized that I had the cards stacked against me. The treatment we undergo and the medications we have to take make it an unfair fight if you go it alone. The smart decision is to rally the troops and use any and all means possible to keep mentally and emotionally strong. This would include support groups (like OCF), counseling and medication.

Get into a counselor, a local support group or church. Ask your medical professionals about medications to help battle the chemical imbalances the treatments, medications and stresses cause...and don't stop reaching out. Use these boards to get it all out, when you do you're not only helping yourself, but others who aren't strong enough to voice it themselves.

Keep in the fight my friend, let's keep at this thing we call life while we can.

Your friend,

Eric

Keep positive Nate!!! Sores are normal like they said, and with radiation, not to scare you but you may get more. RINSE your mouth like they say with the salt and baking soda solution it does help!! Follow all dr's instructions! Keep you head up, get out with friends and loved ones keep as busy as you can DO NOT sit alone and think, it only will make you more depressed. Keep your mind busy, read, watch mindless TV :)play video games or board games or card games. Keep busy! If you have a pet, play with it just stay busy. You will make it thru this, but there will be unbearable days. Sleep. Rest your body. And for sure is eat! If you can't please drink something like Ensure or Boost. Your body needs nutrition to help with the healing. And keep talking to us here and I love watching your videos, I missed it. I also wish I could give you a big hug, CYH(consider yourself hugged! :))

:)Hi Nate. We are all here for you! I'm responding to your post from a "Caregivers" point of view. I think it's great that you are able to express yourself to everyone here. When John was going through treatments I used to drive back and forth to work and just cry in my car out of frustration, fear, watching someone I love more than anyone in the world suffer and just the "unfairness" of it all. I remember being out shopping, working etc. and thinking to myself "how can everyone just go about their normal life when my husband is suffering so much and has cancer". It was an almost surreal feeling. Keep posting and let your feelings out. I don't know what meds you are on but they can affect your moods and the feelings you are having. Just take this journey one day at a time! Hugs.

Nate, sorry it is hitting you so bad right now. You may be suffering from depression as well as side effects of drugs you are on, etc. Be sure to tell Dr. or get help with a group of survivors locally. You are SO close to getting started, and with each treatment down, there is one less to do so start the countdown instead of the counting up!

I have my simulation today - should be interesting to see how it all works. I am looking into buying the honey as noted in the link I sent you. Amazon has it...someone mentioned buying things through there with a special link gives money back to oral cancer...I can't find the link...

My son is named Nathan as well...:o) Hang in there...you have a couple of rough months, then it should start to look up. Remember, we are in this together. I start Monday as well with radiation.

Michele in IL

The Amazon link is right on the Forum list page (main list of subjects). It is a box right under the tabs like forum list, My Stuff, User list etc. Yes, OCF gets a small kickback when you use the Amazon link on the forum page.

Nathan: My brother went thru many of the same emotions & anger that you are experiencing. When his wife told me about some of it, I called him and we talked. I was his big sister (by 15 months) and he would tell me things that he was reluctant to tell others. He also listened to me. My advice to him was get some anti-anxiety meds. He was against such 'crutches' but his emotions were running rampant and with good cause. Having tongue cancer (or any cancer) is terrifying. He liked to be in control and anti-anxiety meds were for sissies. Well, he was dealing w/something he had never, ever, dealt with and he obviously needed some help calming the emotional overload. Basically, anti-anxiety drugs work by "soaking up" the excess chemicals (dopamine? I cannot remember) in the brain, so than one can calmly face what is happening. Anxiety and hysteria are can be caused by terrifying situations, like the one you are in right now. You brain produces too much of some neurotransmiter (brain chemical) & you are an emotional wreck. The over-the-top feelings that you expressed so well are a result of the chemical overload. I know this is a simplification but I think it is an accurate one. It isn't your fault you feel like this, Cancer is terrifying.

Anti-anxiety drugs will not make you a zombie. They are far more sophisticated now and they simply help anxious people cope. Think of them as anxiety sponges! Counseling may help also,but to get quick help, ask your doctors about something to calm you down, tell them you are anxious.

Sorry for the longish post but in some ways you remind me of my brother & his very 'guy-like' method of trying to be in control of something over which he had no control. He listened to his 'big-sister' and took the anti-anxiety meds & it really helped him cope with his recovery and eventually, with his reoccurrence. He had two very good years before the reoccurrence.

Nate, so sorry you are having a rough spot. Depression and anxiety are TOTALLY normal... you have been through physical and emotional hell. My aunt's depression is just starting to lift. Also, please don't think that the doctors lied to you... your treatment is exactly what is to be expected with the diagnosis.

Most people have no clue how to deal with a loved one or friend who has cancer. They don't know what to say (and often say the wrong/stupid things). You have a finace and family who loves you and many here who love you too! I'd say that is about what most of us have.

Radiation treatments suck but you will come through it and you will improve over time.

I could be wrong but I strongly suspect that most all cancer patients facing treatment begin to question their beliefs about life, purpose, mortality and priorities. Maybe some others can address that here.

Anyway, you are always in my heart and prayer.

Dodie

Nathan, it might be a good idea to keep track of all your medications, especially if they get changed or modified. My son had so many different meds he was taking, it got to the point where I was really worried about whether he was taking the right dose or taking them too soon. He had bad headaches and he was also taking way too many ibuprofen which I found out can be very damaging to the kidneys. I finally made up a spread sheet with the different meds listed and which doctor had prescribed them and how often they should be taken. I gave him one copy and kept the other. I posted his on the refrigerator and he would then check off when he took something. I checked with the doctor about how much ibuprofen was safe and made sure he wasn't going over that limit as well. On the spreadsheet, I included phone numbers of people I talked to at the different doctors' offices. Maybe you could make up some kind of spreadsheet or your Mom or Fianc�e could. When people close to you are worried about you, it helps them have something to do to keep busy. Caregivers can get depressed and anxious, too and keeping busy is one thing that helps. Keep up the fight, Nathan. And keep us posted.

Heres the deal, I am a bit better today and apologize for being such a complaining whimp. A few may have missed this, I have not started RADS treatment yet and have the sore that popped up about a week ago maybe week and a half. I did not have any pain what so ever til about the same time ago, And the sore bleeds usually after I brush my teeth or do my flouride trays. I feel they have waited too long and my cancer is already coming back into play so I feel I am about to go through all this for nothing. So this has my emotions falling apart thinking I am trying so hard for nothing, keeping my mouth extra clean , quitting smoking and drinking , eating healthy , walking every morning and staying focused. It only hits me when I look in the mirror or when I spit out the toothpaste or flouride and see red.

And that really is the story of my life and past week or so, seeing red. What I mean by the docs, do you think they see the sore and know it is possibly still cancer but believe the chemo and radiation will take care of it? My thing is, why did they say I was a stage II right at surgery then after I get the death sentence number of IV? I really feel I wasted my life and I am not ready to die yet, there really is good inside of me, I swear I have a good heart but my previous selfishness and addiction took that away. I am only on vicodin right now and my perodex mouthwash, so I know it cant be that messing with my mind. I really need someone to be blunt as hell with me right now!

I go in monday for all my bloodwork and chemo on tuesday, I am prepared for all of that. I am not prepared for this crap to be back already, that is the true kicker. I do not like the unknown, I would actually feel more comfortable is they just said I have no friggin chance and to go live it up. I just hear the same ol' thing, I am young and stand a great chance at beating this etc etc. But if the good percentage of survivors are of those who caught it early and went to super badass hospitals then my future is looking dim. I am a product of the county who take their time with everything, and got staged the highest after surgery. I have changed my lifestyle, and never plan on looking back, I just want to catch a break, just one. Thank you all for listening, I have been good through most of this, it is just the sight of this little small pimple on my tongue screwing with me. My fiancee says not to worry because the docs would have said something, and also says even if it is that she believes the radiation and chemo should destroy it. Boy I hope she is right, as Joey Ramone once said " I just wanna live, Ive got to live my life. "

Sincerely,
Nathan ( the young pain in the ass frack )

Nathan:
What you're dealing with is understandable. The smallest thing right now can take you over the edge. What you're seeing and/or feeling is the reason for the new treatments you are about to dive into. You will attack this and you will win. DON'T YOU EVEN THINK OF LETTING ANYTHING PERSUADE YOU OTHERWISE. I felt almost doomed after the surgery and then learning it was back for another fight 5 months later. 4 years after treatment and I have a darned good life and a new outlook. Once in a while (Like everyone else) I can get some self pity going (When I can't eat a steak, open my mouth wide to shove a burger in it, run out of energy, or taste anything, I feel my speech is slurring, or my neck looks weird, etc). I am HERE, breathing, and loving the folks that I wanted to be here for. If it all started over again tomorrow I'll be right there in the fight again! Remember the big picture! I love your vids, they show tenacity and drive, and give all of us here a little bit of insight into ourselves and our journeys, and a reason to help one another, especially new members to the "Club." Don't ever give up!
Steve

Nathan,

If you are that worried about the pimple then INSIST on seeing your ENT or oncologist and gave them check it out and confirm/deny whatever it is. I had cancer reoccurrence whilst waiting fir a resection on margins that was clear but not wide enough- in two new spots!!! Every specialist said it wasn't cancer but I was going crazy with worry so the day before my second surgery was scheduled I rang up mu ENT and said I really really need him to check them out again. Well he did and as soon as he touched them, he confirm my worst fear but like you I'd rather know. I was at stage 1 originally but I have not asked what stage I'm now at yet. Insist to have someone look at the pimple so you have peace if mind.

Thinking of you.


Minh

Nate,

I had surgery and no radiation or chemo. About a month after surgery a small white pimple showed up on my tongue where the tumor was taken out. I waited a week, watched it, but it didn't go away. The more I played with it with my tongue or teeth it started to bleed. I thought the cancer is back, they didn't get it all, my mind raced, I drove my family and friends nuts. I called Moffitt within 2 days I was in to see the surgeon. He told me it's scar tissue from the surgery I thought Hmmmm sure it is. About 2 weeks later it disappear it hasn't been back since and I stopped playing around with it.

I also have scar tissure where they took out the lymph nodes on my neck I massage it daily it feels much better. I didn't know anything about scar tissue, it might be scar tissue your dealing with, just a thought.

I hope this helps. Hang in there...

I agree...get your ENT or who ever you need to go to - check the sore and confirm/deny it is cancer, then you know what you are dealing with. Until then you are spinning your wheels and not getting any where.

Keep your head up...otherwise you will step on your nose! ;o)

Michele in IL

Nate,

Many of us here had a Stage IV diagnosis from the beginning and with us, surgery would have been a last dash effort (aka "salvage") because the tumor was so large and had invaded a lot of tissue. Also, you have to know that even without a positive node biopsy, micro mets can occur without being detectable, hence the need for chemo and radiation.

I say all this to say that so far (three years out), even with no surgery, the chemo and radiation seem to have conquered Bill's cancer. If you have good ROs, they will know how to hit all the areas that might have mets...that is why the treatment is so brutal...it hits such a wide range of important body parts.

I am not diminishing the mental aspect of this but please understand that the most "Cancer Killing" aspect of your treatment regimen is coming up. Some of the sweetest words came from our RO at the end of Bill's treatment. "We got it," he said, with a lot of confidence. Of course, he can't know this for sure but, so far, so good.

Your last video, by the way, and this is coming from a Mom who notices stuff, was very upbeat and your speech was so much improved even from a week ago. I was thrilled for you. This is a roller coaster ride for sure and you will have good and bad days. We will all be here for you.

Hugs, Deb

Hi, Nate,
I have been following your posts and videos. You are getting great advice here and you are not alone. When my husband had just finished radiation, he was at his lowest point and very emotional. Lots of tears released almost uncontrollably at the oddest times. I learned from his surgeon and the nurses that his reaction was not unusual given everything he was bombarded with during treatment. Fear of the unknown is a big one, too. I encourage you to ask your health care team about anything and everything that concerns you. You are NOT a whiner nor a pain in the ass. It is the job and the goal of the Drs. and nurses to help you get well. And they do that best with your assistance. They won't know your concerns unless you tell them what they are.

Keep posting and unloading here. We are here to help.

Big (((((((hugs)))))))
Anita

Well friends, I am going to drag myself out of this house and go to a friends house and watch them make fools of themselves. I figure I should make the best of the weekend and not be such a debbie downer. Monday I go in for all blood work and will have my new team the Oncologists take a second look at this sore on my tongue. I am trying to stay optimistic and assume that the chemo and radiation will take care of it if it is you know what. Happy Halloween everyone, I will make my video tomorrow, I skipped today because well, I just wasnt up to it. Thanks for your support guys, you make me feel I can really do this. Lets see what this week brings me, until then I dont give a shit. Let the good times roll!

Your Friend,
Nathan

Nate,
Why are you using Peridex?
I'm somewhat guessing of course, but:

Peridex is an anti-gingivitis treatment and gums infected with gingivitis get sores and bleed.

Do you have periodontal issues (receding gums, excessive plaque, etc...). From here on you will need to get your teeth checked and cleaned every three to four months.

I'm surprised you are on Peridex, I thought it was alcohol based and alcohol based mouthwash isn't normally recommended for OC patients / survivors. So, there must be a medically necessity.

Consider getting a water-pic. Now that you have quit smoking the Water pic should clear up your gums and keep them healthy. Use it a couple times a day with warm water and a quarter teaspoon of 50/50 Salt & Baking Soda. 'BUT' during radiation you will want to keep the pressure real low.

I have never heard of OC-SCC growing as fast as you are imagining. Since your tumor was removed, the oral radiation will be going after microscopic cancer cells that would need many months to multiply into visible a tumor.

I don't know why your stage was up'd to stage IV, but lots of us were staged at IV and it doesn't mean a lot regarding being cured. A stage IV OC-SCC isn't necessarily the same as other stage IV cancers. It is combination of adverse TNM and invasive characteristic that really matter.

Knowledge is power. Study and Print out the TNM Staging info at http://www.oralcancerfoundation.org/facts/stages_cancer.htm and discuss it with your ENT or RO - they can explain exactly what was found that led to their change in staging and the implications.

Remember, "Tomorrow is the first day of the rest of your life" and you will only get to live it once, so always try and make the best of it.

OK, I know in a few weeks there will be some days that living once will be more than enough, but even those are a unique journey of a life time, so let the quest begin - stand up to cancer and live!

Tomorrow I have a 20 mile bike ride around beautiful Sail Bay and Mission Beach on my vintage Austro-Daimler Vent Noir - can life really get any better? I'll be around to let you know

So they had me stop peridex today and said to start using non-alcoholic scope from now on. Should I take one of my zofran pills tonight before chemo in the morning?

I don't know the normal Zofran protocol with Cisplatin. But do ask tomorrow at your CCC's infusion center.

I took it the last week or so of Radiation treatments and it worked real well, but they had to use anti-nausea suppositories (no fun experience that I couldn't even imagine) to first get me under-control because I would just barf up the Zofran.

Mine was a liquid Zofran (Ondansetron Hydrochloride) 10ML's down the PEG tube three times a day.

You want to really stay on top of nausea because if you can't keep anything down it will led to dehydration in just a matter of a few days and then you have to get saline IV's. Dehydration is a real mess - weak, disorientation ... no fun, so save it for the end, or not at all, if you can.

Hi Nate

Alex is a world expert on cisplatin after 3 months of chemo alone and then 2 months of chemradiation. We only finished radiation at the end of August and already I cannot remember what we did with anti-nausea pills. I don't think Alex took any anti-nausea pills the night before "chemo day" during the chemo-rad phase but he definitely did for a few days after. I think he was given Zofran in pill form as soon as he arrived at the ward and then was also given some IV anti-nausea meds as well as fluids and magnesium before the cisplatin was administered. They will make you pee before they let you go, so keep drinking through the chemo process - it will speed things up for you. We used to take about 5-6 hours with chemo and then spend an hour in radiation immediately after. The actual radiation (probably 15 minutes) was very quick - it's all the set up and positioning that takes the time.

PS Alex definitely took prednisolone which has anti nausea properties the night before chemo alone, but it may have been to avoid a hypersensitivity reaction from either cisplatin or one of the other chemo drugs he had. I am sure we didn't do this during chemorad

Nate, the nasuea should not hit you for several days. Check this with your chemo doc or even with the oncology nurses. Some people have very mild side effects from the first dose. I had cisplatin 3 doses but only was given 2. It hit me about a week later. Once it hits, do not stop taking the anti nasuea meds or it will get ahead of you and it will be impossible to keep things down. Drink tons of water to help your body flush it out. What Im telling you is what happened to me, doesnt mean it will effect you as much. Use the peg tube to help with your meds. Dissolve them in a tiny bit of warm water. Make sure you check with the doc or pharmacist about this so you dont dissolve any time release meds. The zofran works very well. I just picked up a prescription of zofran dissolvable tablets and the pharmacist told me they would have cost $2500 without insurance. If I were you I would start taking the zofran on a regular basis about day #5 after chemo.

Best of luck to you with everything.

Nate, just wanted to say Hi and let ya know I'm thinking of you today. Hope your first treatments are non-eventful.

Big Ole Hug!

D

Nate- The first year I constantly had anxiety about every little lump or bump. I thought for sure I felt something under my cheek bone and then on my collarbone. I was a freakin' basket case! Before every scan I was a mess. but over time I've just relaxed about it - mostly because the odds of a reoccurance for me now are very low.

What you are feeling is completely normal. I wish there was something that could help you to feel less anxious I take Ativan at night sometimes when I get anxious and have insomnia because I stay up thinking about bad stuff. Its really easy to spiral into a negative thought pattern.

The best thing is to just take one day at a time. Your body has gone through major assault so be patient with the healing. You still have more treatment to go through so just be good to yourself. Distract yourself as much as possible with the things that make you happy and excited about this precious life we have. You've been given the gift of knowledge that life IS so precious... even the bad days, the sad days and the rainy no good bad days. Every day is a gift.

Hang in there- and yes do tr some anti-anxiety meds if you think they might help.

Sending you healing vibes
XO Kate