Hi OV and welcome to the forum.

When my husband was diagnosed I couldn't make sense of any of this, it just seemed unfair. It's like being swept overboard into a strong current that keeps carrying you along and you can't get out of.

There's a long, hard road ahead for both of you but people do recover from this cancer. No it won't be the same as before but you find ways to adjust when your life is on the line. Your love and support for each other will be critical. In the beginning it's too much to take in all at once and you need to concentrate on just the immediate next step. The response to treatment is highly individual and you have to see how he does over time. No one can really tell you at this point. Speech therapy will help with both speech and swallowing problems so that's something to ask about.

Asking about his looks is normal and reassure him that everyone looks like crap after surgery. He will see himself in a mirror at some point and probably get upset. There's swelling, irritation, incision lines etc. and it takes several months for the tissue to calm down and get back to a new normal state. I remember thinking that Jack looked like Fankenstein with all the staples and swelling, but what he needed to hear from me was that I didn't care about that because I loved him and we were going to do this together.

Right now your boy friend needs to get his strength back from the surgery, and learn to use the feeding tube. It's really important to maintain his hydration and nutrition as that will help decrease the side effects of the radiation and chemotherapy that will follow. Also it's a good time to organize your friends and family on helping you with transportation to and from treatments, shopping etc. People will want to do something but won't know exactly what so you need to assign them to things that will be useful to you.

Many patients and caregivers experience depression and anxiety and PLEASE don't be afraid to ask for medication and counseling if you need it. This is a lot to adjust to at any age. Have you seen the site map on the home page yet? It has great information and links to other resources.

My best wishes for you both and keep posting. It helps to know you are not alone.

Regards JoAnne

Many survivors have told me that cancer often times brings out the very best in people. Joanne your words speaks volumes of how true this is.We are all dealt such terrible sad stories. The true challenge is not necessarily beating cancer but how we make these sad stories into happy endings regardless of our outcomes. Joanne your love in your last message is so much stronger than my cancer.Thank-You for helping to send me into today with a better outlook than I would have otherwise.By reaching out to help OV you also help so many more in need.
Thanks,
Mark D.

has anyone had 90% of there tounge removed and still be able to eat because i can taste things a little but i can't swallow yet and is there such thing as a tounge transplant just like other organs in the body? please if you have info i'd like to know please and i wish everyone the best of luck and now i'm going through the samething i just came out of surgery 2 weeks ago and its so hard seeing all the food i used to eat and all the new stuff and just the smell alone is killing me. makes me wanna kill myself sometimes. i think i got this cancer from chewing gum and smoking i know people told me not to but there was a time i was so depressed i just didn't care if i died or not so i did things like that and smoked drink do crazy stuff and now look at me my life feels like its done. i guess being mad at people you love makes you do crazy things but if i could teach people not to make the mistake i did i would do that in a heart beat. thanks for all your tips and i'll be in going to radiation and chemotherapy soon so i hope it goes ok and i'll keep you posted. god bless you all

OV_BM,

Your life is not over...it's actually just beginning. You already have a much more positive outlook and caring tone than you did before. So let me be the first to welcome you to your new life!!

I didn't have surgery but I did loose my ability to eat solid foods, we all do. I'm sure you have a PEG, if not, I'm guessing you will get one. The smells of food we took for granted will drive you crazy for some time to come. I assume you have lost your taste, if not, the Rad will see to that. You will also develope dry mouth so just think of "eating" now to maintain your health, and not for pleasure.

Make sure that you get all the water and "food" in your body each and every day. It's very important and it will make things go easier.

There will be many more questions you will have as your Tx begins and don't hesitate to ask. That's one of the benefits of this great site.

Hang in there.

By the way, how do you and your girlfriend want to be named in the posts?

Hello everyone, I'm back from one week of staying in the hospital to care for my boyfriend. I haven't had a chance yet to post until today - so I have much to tell.

For anyone reading the last post, it was by my boyfriend. OV is who he is, and I am BM - which stands for Bhavna Mistry. After he returned from the hospital, I showed him this site, I was hoping that he could find some answers for himself, and he did.

He got released early from the hospital, he had a whole group of nurses who really liked him, and they took such good care of him. He was really positive and strong in the hospital, he surprised all of us. He ended up spending his 25th birthday there, and so he begged to go home early. The medical staff had to make sure that he knew how to take care of his feeding tube and trache before he was released. He is such an amazing person, and he was able to learn everything so quickly, plus he showed so much improvement that he got released the day after his birthday.

As soon as we got home, he was so happy, but within a couple hours I guess everything started to sink in. He has become depressed since, and all he keeps thinking about is eating. Of course I am not in his shoes, but I can understand how something like this can make you feel so depressed. With 90% of his tongue removed, his chances of eating through his mouth aren't good, and speaking is difficult for him as well.

He takes food, puts it in his mouth and tries hard to taste it and swallow it. It is like torture for him, and me being there and seeing this, makes me feel so helpless. All I want is for him to get better, and focus on that, but his focus and attention is all on the fact that he can't eat and taste. He thinks he has made a mistake going through with the operation, and that he should have lived it out. I don't know what to tell him, because of course I want him to be happy and alive, but I never wanted him to suffer.

Next week he starts radiation, which from what I have read is tough and irritates the skin. Can radiation have worse affects on a person besides the skin?

Anyway, for now I just keep praying for a miracle, and I pray for all of you as well to get through your struggles. I never knew what cancer meant or how difficult it can be on a persons system. Now I know, and although it can eventually make you a strong person, it also alter your outlook and appreciation for life. I have that now, and I hope my boyfriend will too.

BM,

Stay strong, better days will come for OV. His body will heal. He is very young and so they have been very aggressive with the approach for cure. So his prognosis should be better. Although I didn't have any of my tongue removed, I can relate to not tasting and not swallowing. One day at a time is still the key. Radiation is tough, I was exhausted by the end of my treatment. Actually I didn't start healing until 2 weeks past treatment. There is a lot of good advice to be had here, but the best is to stay fed and hydrated, it really does help.

I will continue to keep you both in my prayers.

BM, I feel so badly for the both of you. You are so young to have to deal with this life changing experience. I guess the bottom line is that it will make you decide how tough you both really are and what being alive means to you. With any infirmity or disability must come an attitude that can learn to cope in order to survive. Hopefully OV will dig deep and find the attitude he needs. This will probably take some time and you both need to know that the radiation tx. will not be easy. Keep reading and researching OCF to learn what you need to know and keep posting- there are alot of people pulling for you both. Amy

I think this is a hard situation for both of you to deal with, and yes there are additional side effects from the radiation ahead for him. It is understandable that he would get depressed when the reality hit him but he should also talk to someone about it and consider medication for that before it gets worse. He needs to keep some perspective to get through the next phase of his treatments.

Have they discussed rehabilitation with him at all? It may give him something positive to focus on for the future. I had heard at the University of PA about a case of a young woman patient who had a tongue prosthesis after her treatments that worked well but I don't know anything about it. Did they do reconstructive surgery using a flap?

Are they recommending he try swallowing or that he use the PEG tube? Jack was kept totally on the tube feeding for the first month after surgery to allow the incisions to heal at the base of the tongue.

There is no way to deal with this except to deal with it, but that does not mean either of you should tough it out alone. Medication, counseling, meeting other young cancer patients that have survived this and can help encourage him all play a part. It sounds like the medical team was very involved in his care, are they aware of this change in his mood? Talk to them about what is going on with him to see if they have recommendations. If they don't know about it they won't be able to help.

We're thinking of you both.
Regards JoAnne

Thank you all so much for your kind words and prayers. I just got back from the hospital tonight, my boyfriend had to come back because of the stiches on his neck that had come undone, and now there may be some infection there. He hasn't caught a break yet, it just seems like issue after issue, and I just want to get him to relax. He seemed upset today when they said they wanted to keep him in the hospital for another week, and even though I wish he was home, I just want them to help him to get everything in good order. Ever since they put the feeding tube in his stomach, he has been in a lot of pain. Not to mention the bed sores, and his inability to fall asleep.

Any suggestions as to what has helped any of you to feel at your best through trying times? Sometimes I can make him laugh with some stupid jokes I tell him, or I give him a massage. I try to get him to write down what he is thinking, because he tends to keep everything to himself. I was thinking of getting a good bord game, anything to get him to relax and smile.

I don't know too much about the radiation process, but I have read some things on this site. I want to prepare myself so everything doesn't come to a surprise later on. Plus, knowledge about what to expect, I think will help him and that is what I am here to do. I know if my boyfriend just takes care of himself, stayes positive and has faith, anything is possible. But I think it will take some time for him to feel that way because of the depression he is feeling right now.

For anyone who has felt like my boyfriend, I hope you got the support you needed to lift your spirits - my good wishes are with all of you. Depression can distract a person from what is really important, and that is the journey to getting better. I hope that if anyone out there reading this is going through their own depression, talk to someone and find ways to make yourself feel better, you all deserve to be happy and healthy, and i pray you all get that.

BM,

The key for me when my mind drifts to dark negative places is my faith in God and his grace. I still struggle with sleepness nights and the negative what ifs but prayers and faith certainly help me through those times.

I'm not one to normally preach, but you asked.

I'm sure your boyfriend is getting the right care in the hospital and is where he needs to be right now. Use this time to take a little break for your self. I know this disease is very hard on the care givers too. Stay Strong!