I'm so angry and sad and scared. Im scared that how shitty I feel now will be how I feel forever. I feel like I'm traped in my own body because I can't speak until the mucositus clears. Im angry that I went thru radiation. I feel betrayed that I wasn't given the full picture of what could happen. The way I feel now is a million times worse than my actual operation.
I feel like I've been robbed. Robbed of a lot of things that made life good.

Hi John,

While not having gone through the physical journey myself, I did accompany my mother through the incredibly unkind process of surgery, radiation, and chemo. We had no idea either what radiation was going to be like, no matter who warned us (including a friend who had gone through it himself). We thought surgery was going to be the worst part too. We were so wrong. Nothing can prepare you for head/neck radiation I don't think. I remember my moms surgeons saying to her "if we told you how bad it was going to be, you wouldn't have done it." And there is a lot of truth to that. She had gone through surgery, chemo and radiation for breast cancer years ago and radiation was the easiest part of the process, so I think it took her by surprise how incredibly different the affects are when treating oral cancer.

You are probably at the lowest, most angry, saddest point you are going to be at throughout this process. I'm glad you have come here to vocalize your feelings and reach out for the support and kinship others here can give you. Nothing we say or do is going to change what you are going through, or how you are going to feel physically, but knowing there are people here who have been right where you are now has to help a little bit, to know you're not alone, and to know that IT WILL GET BETTER. That is something we can all promise you. It seemed like a day was a year when my mom was going through treatments, and even had to take a few breaks due to the mucositis and other damage treatment had done to her, so the process took even longer than we expected... but it does end. You will get there. You won't feel like this forever and while it may take a while to start to feel like yourself again, so many people here will help you get there.

Hang in there, we are all sending you healing thoughts and positive vibes.

John,

Give your body time to begin the healing process. It's not like you are getting over a cold. You and your body have been through a horrible ordeal and for a great majority of us the few weeks post Tx are our worst and our receovery can take all of 2 years to complete so please don't add unneeded stress to your equation. It is also during this time that many get some form of depression dealing with exactly your issues requiring some to seek professional help dealing with it. Look at all of us that are multi year survivors. Our lives are different for sure but most all of us have reached our new normal and have adjusted accordingly but it does take time and patience. Please allow yourself both.

John

Well you were robbed of a healthy youth. You are trapped in your own body. Who would not be angry sad and scared at any age, let alone yours? Bitch away. It's not like we are going to be shocked here at OCF.
I often comment to people that the spiritual effects of Cancer are highly overrated IMO. Perhaps you can amuse yourself by reading a great cartoon book: Cancer made me a shallower person. The author had breast cancer and she died after it became a hit.
Here is a thread from three years ago you may find interesting
Why me

John, as others have said, you are at the absolutely WORST PART of this entire surgery/treatment phase. You are on the ground now, but you will be able to stand up again soon. You have been thru a war, your body needs to heal itself... and it will. I am living proof that it can be done. I lost 75% of my tongue, had a neck dissection, forearm freeflap and 6 wks of radiation. I would do it all again in a heartbeat because it saved my life.

as others state above, you will get thru it. Find something to keep yourself distracted. take the meds as prescribed, get plenty of sleep and take in plenty of water.

soon this will all be just a bad memory.

John - My heart goes out to you! My son was exactly where you are now and feeling the same feelings. The doctor also gave him a couple of breaks to be able to get thru the worst of it all, as well as depression and pain meds. Be sure and let your doctor know exactly how you are feeling. You have had such good suggestions above. Stay with us, do what you have to, to help your body heal, and vent away whenever you have to. You CAN do this!

John, I really understand what you are feeling. Three years ago I was just beginning the journey that you have completed. My doctors did try to prepare me, but nothing could have possibly prepared me for what I went through. My neck got so badly burned by the radiation that they had to stop for a week. To top it all off, because I also had the three strong doses of Cisplatin, I became extremely malnourished and had to be hospitalized a week after I had completed my treatments. Today, while I still have eating and fatigue issues, I am doing quite well. My ENT and my oncologists have reduced my visits to every six months, and damn it, I am going to make it. You will, too! Feel free to come here and vent any time. We are all here for you, and it WILL get better!

Im sorry you are struggling John! This is the low points we have been cautioning you about. Its an emotional roller coaster at the end and first 2 or 3 weeks post rads. Most of us felt horrible and at the worst point abandoned by our medical team since we dont go to tx anymore. How you feel right now is exactly why I was surprised your doc told you that you should bounce right back due to your age. Take it day by day and very soon you will begin to see some progress. Its a slow go right now but you really will get there. Try your best to set very small goals for yourself. It will help you to notice your improvements which will be encouraging.

All you can control is resting, hydration and nutrition. These things are what will get you thru this dark period. Not sure if you have talked to anyone about your anxiety but many patients and also their caregivers have used anxiety meds and counseling. Accepting the new you can be a difficult thing to get thru. Nobody understands this better than Eric and I do. We woke up from our surgeries forever disfigured without the hope of ever looking normal again. What happened to us is very unusual, most OC patients like yourself will go thru heck and a few weeks later be almost back to how they were prior to having cancer. The most important thing to get out of this is that the whole thing really, really stinks but you are alive and will get better so you will go on to live a good full life.

Hope today is a better day!!!!

John, Sorry you are feeling so bad. Me telling you it will get better unfortunately isn't going to make you feel better. Be patient with yourself and you will get through this. My husband didn't want to know anything that was going to happen during treatments and asked me questions on a "need to know" basis. He also thought once treatments were done he would just wake up and feel better. The first few weeks after treatment John just camped out on the sofa hooked up to his pump for nutrition and hydration and watched every episode of Three and A Half Men out there. Hang in there! Hugs.

John,

I understand your frustration and anger, too. The part of recovery you are in now is very difficult and does seem to last forever. It is so hard to see any light at the end of the tunnel especially when you have mouth sores, excess mucous and are generally feeling crappy. But it WILL get better in time. You are among many who have been where you are now. Do your best to get your rest, proper nutrition and hydration. I used to rub my husband's back whenever he got to feeling low. Human touch is a healing thing. Do you have someone who can pamper you? In the meantime, I send you cyber hugs and hang in there. Come back here often and vent.