Hello everyone! I am new to this site, I found it while surfing the net for topics relating to Oral Cancer. I thought this would be a great place to read what others are going through and how they are coping with their cancer.

I am here as a supporter for my boyfriend who I have been dating for eight years, and just recently he has been diagnosed with Oral cancer. Unfortunetly, it started on his tongue and spread down to his lymph nodes very quickly. I never knew anyone with cancer before, so I am just feeling afraid for him, I wish I could take his pain away.

October 31, 2006 is the day when he underwent surgery to remove the cancer on his tongue, lymph nodes and under his chin. 98% of his tongue was removed, and tissue from his thigh and wrist were used to reconstruct his tongue. After meeting with the surgeon, his concern was that my boyfriend may not be able to swallow again, and that using a tube to feed him would be what he might have to do for the rest of his life.

The next step is recovery, radiation and chemotheraphy. I just want to hear one thing positive, with him being 24 years old, everything has been going so quickly, and everyting feels so scary. If anyone out there has been through this, please tell me what I can do to help or if you know anything positive, please share with me.

His birthday is next week, he will be turing 25 - we are all hoping for something good to happen.

Thanks for reading this, hope to hear from someone soon.

Welcome,

Sorry that this has happened but you have found a good place for help and support.

My cancer started on tongue in 2004, went in for surgery took 1/4 off. Everything was fine. I could to talk, eat as before.
Then one year later found lump at base of neck. This time had surgery to remove lymph glad, part of neck muscle, and jugular vain. Because it had spread, had to have Radiation & Chemo.
The feeding tube is a good thing. It will help him as he goes through treatment. He will need all the nourishment he can get.

I am not going to lie it was not a fun trip. I am now 9 months from last treatment. I am slowly recovering. I have had ALL CT scans come back clear at this time. I do run into problems now and then. I just take one at a time and one day at a time.

I know all of this is over whelming. Take one step at a time and ask Dr. all the questions you want.

Take care,
Diane

Thank you so much Diane for your response, I really appreciate it. Asking questions has been the only thing that has helped me to get a better understanding of what he is going through.

1/4 of your tongue and you are able to talk and eat, wow - you are amazing. Did they use tissue to reconstruct your tongue as well? I am glad that you did respond - your message gives me some hope.

Was there anything in particular that helped you feel better? Anything at all, I just want to do what I can for him.

Thanks again Diane, may God bless you and help you through everything, I pray that you stay happy and healthy.

OV,

No I did not have reconstruction done. I know that there are others who have. Maybe some of them will find your post & explain.

All I can say is be there for support. That is all you can do. Find information that will help him with the anxiety of it all. This web site helped me the most.

Like I said one day & step at time. Learn as much as you can. Also you as a care taker must take care of self as well. Try not to let this over whelm you as well. Be sure and read the care takers page. I am sure you will learn a lot there.

Take care,
Diane

Dear OV, what a tough thing to face at age 24\25. I hope you are strong enough to help him through this because he has quite alot to deal with over the next few months. This will be a one step at a time process and if you will ask questions during each step, someone here will give you answers as best we can. My suggestion to you now is to just concentrate on the immediate future-try to learn and understand what happens during radiation and chemo [there is lots of good info here if you the search button] And lots of people to talk to. Try not to panic because that won't help anyone. Amy

OV

I know it looks pretty bad right now and overwhelming to say the least. At 25 he has age on his side. The first order of business is to get him through the surgery recovery. Don't think about anything else. Take things one day at a time. He will not be very positive about anything right now and it will only get worse before it gets better. YOU can help him a lot by trying always to present a positive and strong outlook. My wife, who I could never have made it through without, was always strong, firm and at times nagging me to do what I was suppossed to do. She would often cry when she wasn't around me. This is something she just told me after reading your post. I never knew that and I guess looking back I'm glad I didn't see her cry.

When he is ready for rad and chemo, we are here as well but it always helps us if you give us as many details as possible. Don't ever think you are being to wordy. We all know or can imagine what you and he will be going through and we can definitely help both of you.

You must make sure he gets his daily recommended water and liquid food. Don't let him slide one meal, one day or he will get into trouble real fast. If he thinks the feeding tube is taking to much time consider Carnation Instant Breakfast VHC. It has 560 cals in 8 ozs. It helped me a lot.

Remind him that his goal is to survive and live until he's a 100. He has a lot more years to live than most of us. To survive he must be positive, determined and strong to get through what will be thrown at him over the next several months. Both of you will travel through a very dark and uncaring tunnel but you will see the end and it will get better if you both remain committed to rid his body of this uninvited desease.

We hope to hear lots from you and or him for a long time to come.

OV,

I must echo what David says. I too couldn't have done this without my wife's care. It was the most important thing in my treatment and recovery.

There is a lot of good advice above so I can't really addd to it. I really just wanted to say welcome and restate your boyfriend has a long road ahead, the only way to get it done is one day/step at a time.

I'll keep you both in my hopes and prayers

To Diane, John, Daivd and Tim, thank you all for your support and for responding to my message. Wow, just one day of putting up a posting and all of your messages have really impacted my emotional state. I felt a lot better this morning when I read all of your messages. All of your advice was great, and good luck to all of you in your journey through this.

I finally got to see my boyfriend yesterday, it was the first time after surgery. I was afraid of how he would be, or how I would react when I saw him. I didn't know if he would be awake or if I would just fall a part when I saw him. To my surprise none of the above. He looked great, he was awake and kicking!!! He wasn't allowed to speak, due to the sugery on his tongue, but when I arrived, the first thing he did was hand me a letter that he wrote while he was waiting for me to come. He had stiches starting from his bottom lip, all the way down to his neck. He was swollen on the one side where the large tumor was, but he still looked great.

He has a lot of tubes in him, but even so - he is working hard on getting better. The nurses told us that the next day they would already start to get him out of bed to help with the blood circulation and the swelling. He held my face and touched my hands, and used hand signs to tell me he loves me. I have never seen anyone so strong and brave. As I am sure all that have been in the same shoes, your partners must think the same of you.

As David said about his wife crying away from him, I do the same. I know it helps me to release my frustrations and sadness, but it doesn't help him to get stronger. But seeing him yesterday made all the difference in the world to me, just to see him is the best feeling. He has always been my strength through troubled times, and now I am here to do the same for him.

The next step for him is recovery from the hospital, and for him and everyone around him to take it one day at a time. If anything was difficult to watch, was him gasping for air everytime the oxygyen tube moved, or when he would write on paper to the nurse "I have trouble breathing".

He did ask me questions like "do I look different?", or "do you have a mirror?", in which anyone in his place would be concerned in the changes that take place after surgery. But I think when you love someone, you go through the good and the bad together, no matter what happens - if the love is real, you can get through it together.

For all of you out there that have already been through it, I admire you and I am happy that you have made it through the tough times that you did. You are all an inspiration for me to be the stregth my boyfriend needs, and my good wishes are with all of you.

Ov,

Great post...and it seems to me the love is real for you two!

There were several good things that came out of this for me. One was I and two others in my family quit smoking back in June when I was Dx. The other is I have never felt so close to my wife as I do now. It's easy to say things like I love you and your my best friend when things are good, but when the going is tough is when you prove the love is real (as you say.

Still thinking good thoughts and prayers for you both

Ov,

I'm so impressed with your maturity and commitment to your beloved. Got tears in my eyes reading your post.

Keep us posted on how the healing progresses.

Loretta

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!

Dear OV,

Jack and I were talking about you and Bhavna and feel so badly about everything you are dealing with. Our son just turned 25 last month and it's just not fair. To answer your question we tried to deal with this by focusing our energy on the immediate problems we had to solve to keep from being overwhelmed by all the details. It's just too much to take in at once. You take it one minute at a time, and then one hour, and then build up to one day and realize that having a bad one is not a failure, it's a normal reaction to a stressful situation.

Right now he's in the hospital where they can assess his depression and come up with some recommendations. Sleeping problems will complicate depression so maybe they can start by giving him medication to sleep and something like Ativan to help him relax. What are they doing for the infection? He shouldn't be having so much pain from the stomach tube, have they checked him for acid reflux? It's very common with feeding tubes but Prevacid or prescription antacids helps take care of that.

Don't underestimate the power of stupid jokes and those massages. I used to do that with Jack and it turns out that's the stuff he remembers from that time. You may not get a reaction right away but I would keep letting him know that you love him and are standing by him. You are right that knowledge is powerful and helpful to know what to expect. It's also a great idea to have him write down his thoughts, I still do that - someday it will be a great book. There's something therapeutic about going from your mind to the paper to help you get rid of it.

What are you doing for yourself? Are you able to talk to someone about your feelings? Hang in there.

Regards JoAnne

Bhavna, it's going to be important to keep OV well fed. There are plenty of good sites (OCF among the best) to get recipes for high protein shakes that will go through a feeding tube. Keeping him well hydrated and well fed will help fight the infections, will help him heal the bed sores (Keep him off those, even when he is sitting up in a chair, there are cushions what will keep those places from getting pressure to them). I guess the nurses have told you that he needs to change positions every two hours or so to keep the bedsores from spreading, to keep new ones from forming. This is very important! These are not just aggravations, they are potential sources of infection!
You two are facing a strong adversary in this fight with cancer. Be strong, too!
Best wishes.

Bhavna and OV,

Apologize for coming in late on this. I haven't checked for a while. My situation is similar to OV';s except I was 67 when I had my first occurrence in 2003. I am so sorry you had to have this ordeal so young. Had a recurrence in February 2004 when they took nearly all my tongue and also had cancer under my chin. I had a feeding tube which I still have. I won't go into mu history but hopefully I can pass along some helpful tips.

1. Regarding radiation, see if you can tolerate amifostine (ethyol). This helps keep your salivary glands. I couldn't tolerate it myself.
2. Get your teeth checked before you start radiation. Once your H & N areas are radiated it is very dangerous to fill or pull teeth. I use an electric tooth brush and Biotene mouthwash 2 to 3 times a day to massage gums and keep teeth relatively healthy.
3. Watch out for infection after radiation. I got cellulitis in my neck and had to go on antibiotics. Ditto for the place where your feeding tube goes into your stomach.
4. During and after radiation, keep stretching your neck and jaw. Therapists can give exercises. There are exercises to help you swallow. I do these every day.
5. My therapist had me use a syringe once I could swallow. This helps because with no natural, moving tongue it is hard to get food to the back of the mouth to swallow and the syringe gets it to the back of the mouth. My taste is still OK and I use the syringe more and more and hope to give up the tube. I read about a person who had her ENTIRE tongue removed and was eating after 8 and 1/2 months when she had her feeding tube removed.
6. Get to a speech and swallowing therapist as soon as your ENT will permit you. Eventually you may need to see a gastrointestinal doctor to have your esophagus. This really helped me to swallow. This is key.
7. I saw a maxillofacial prosthodontist who fitted me with a palatal drop mouth prosthesis. I aids in speech and swallowing although I still use a while board a lot to communicate. You should inquire into this.
8. Don't be afraid to ask for pain meds. My skin still tightens up especially at night due to radiation and I use a small amount at bedtime to help me relax.
9. You have to take each day one at a time. It is a hard road but it can be done. You are wise to have found this site as there are a lot of helpful people who have had your condition.
10. Finally, don't be so hard on yourself. I too smoked for 25 years (quit in 1979) so I thought I was out of the woods for having cancer problems. I have already influenced a person to give up tobacco.
11. Stay close to the people you love. I found that going out among people is the best therapy.

Regarding tongue transplants, I did read about an Austrian man who had a successul tongue transplant in Vienna in July 2003 but can't find anything on the net or through Google about how he's doing now. You are young enough that with advances in medicine, it may be commonplace in the not so distant future. It should be available now in the US and Canada but I think tongue cancer is so relatively rare it doesn't get the attention other cancers do, therefore progress is slower. Also insurance issues may play a role but thatis just my personal thinking.

Right now is the most diffucult time for you. It eventually gets better. I hope I haven't rambled on too long but wanted to pass along some of my experiences. I wish you all the best in your recovery and don't hesitate to ask anything that you may have a question about.

Jim Haucke
------------------------------------------------ SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies

Hello everyone, I finally got a chance to write another posting. Well for my boyfriend, everyday has been difficult. As a caretaker, watching him in pain and suffering has really caused me to get more depressed. Even though my attitude around him always seems great, there are days when I just can't pretend - and neither can he.

After his surgery, he came home feeling depressed. That was one issue that I thought we could work on together, but then one morning at 2:00 a.m., he woke me up to tell me that his stiches got undone when he coughed. This was a major setback, because if this didn't heal quickly, he couldn't start his radiation and chemo. We had the homecare nurses coming in and helping with that. It is amazing how much you can learn just from watching, and I am glad that I could learn things just incase he needed help with something. After a couple of weeks of healing, my boyfriend was scheduled to start his radiation and chemo on December 11, 2006 (that was a big delay) - but this would mean that his wound would have to heal first. Well in preparation for chemo and radiaition, he had to get his wisdome teeth removed, so this had to heal as well before treatment. There is a lot of healing to be done, and because of this he didn't start his treatment earlier. That worried me a lot, and now, a couple days before starting treatment, he found a new lump along his jaw bone. Oh God only knows how much I cried that day when he showed me. Through this whole process I was strong, but when he showed me, I just felt like "why". I don't even know what it is, but after everything, now you just have to be cautious and careful to check out everything.

I know you have all had your struggles, but at this point I just wonder if it is at all possible if he could survive this. He is my best friend, and I have known him since we were 6, to see him change over a short period of time, is so sad. I just keep praying for a miracle, I do believe in God and in miracles, I keep hoping that he can survive this and live his life happy and healthy.

I was staying at his house to help take care of him, I could be there everyday for him because I had time off of work. But I found with being around him all the time, he would take out all his frustration and anger on me. I was really understanding to this, trying to not take it personally, but sometimes it did hurt to hear him get so angry. Also, he would have mood swings and tantrums - anyone have this? He doesn't get a lot of sleep, which is why I can understand him being cranky. But the tantrums were so difficult to bear, he would throw things and make so much noise. I would barely get sleep, and so I had to come back to my parents house to ensure that I got plenty of rest when I got back to work. Like there were times that I would sleeping, and he would be so angry from his sleep, that he would wake up and bang on things or throw things and he would blame it on me. But then the next day I would ask him, and he would just tell me that it wasn't my fault, that he for some reason feels very irritated. Anyone experience this?

His dietition put him on 4 cans of his feed, but he himself increased it to 8 because he is so hungry and he wants to gain his weight back. He has lost 50 pounds, we weigh about the same now.

I know this isn't going to help him, but I am so scared, worried and nervous for him. Sometimes I wish this was all a bad dream, and we could be happy together. I pray and pray everyday, I don't want him to suffer anymore. I can't even keep my concentration on anything, all I pray is for his pain to go away. I never knew anyone with cancer, who knew that the closest person to me would have to go through it.

I hope all of you are doing well, thanks for all your advice. My good wishes are with you all, God bless!

Bhavna,

I was the patient not the CG so I can only imagine what you are going thru. Other CG's will address that side.

From OV's perspective, we have all felt angry and it's easier, not correct, to take it out on someone we think will tolerate it. Have his docs been informed about these "fits". They may want to recommend he speak to someone to get a handle on his depression before Tx starts because it doesn't get easier for a long time to come.

You have both been through a lot and unfortunately you have a lot left to go through. I think he would benefit greatly by posting a few things himself but usually only one of the affected people do the postings. It was all I could do to get my wife to read some postings and I made sure I thought she would really relate to what I wanted her to read before I printed them.

As far as the weight loss...50 pounds sounds like a lot for surgery but I don't know where he started. Four cans doesn't sound like much but that depends on the calories in each can. I was told to consume 2000 cals and 48 ozs water per day which was tough. He needs to keep his docs informed and in my opinion, add whatever pounds he can before Tx starts.

Hang in there and do as much as you can but remember you both are not perfect so don't expect that you will act like one.

Bhavna,

I'm sorry to hear of the new found lump. I will continue to pray for you both. Have the Docs seen the new lump?

As a cancer patient I can tell you I that we all get depressed. And we all show it differently. I'm sorry that you have been the brunt of OV's tantrums and anger. Deep in his heart he knows it's not your fault, but as David says OV knows you will tolerate it. Definately not right though.

Hang in there and ask the Lord to give you the grace to deal.

Tim

Bhavna, This is a really tough situation you all are in. Both of you are going to have to muster all of your strenght to get through it together. OV's role is to do everything he can to get well [and learn to deal with this] and your role is to figure out how to deal with all the pressure and flak that comes with the territory and learn as much as you can about how to help. This may not be a role you want to accept-that's up to you- but he is stuck with his. All the caregivers have experienced the things you are dealing with now, in one form or another, and wish we could do more to help you through it. It's going to take all of your strenght, love and patience to get to the end of this together. We are pulling for you. Amy

Hi Bhavna,

It's normal for you to feel scared and worried given everything you and OV have been dealing with. It is also very important for you to take care of yourself so that you can continue to help him. That includes things like recognizing when you need to pull back, getting rest, and seeking the advice and support of others.

The anger that you are describing from OV is also normal. Years ago Elizabeth Kubla Ross wrote an amazing book on death and dying where she described the 5 stages of grief. Anger is right up there, as well as shock, denial, bargaining (if this cancer goes away then I promise to...)before we can reach a state of acceptance.

It's perfectly normal for him to feel the way he does, but it does need to be addressed with his medical team. Also he is still having difficulty speaking then his actions are how he is exressing his feelings and pain at this point. I'm not saying it's a good thing, but it's normal under the circumstances. People often take out their frustration on the person they feel closest too and it sounds like you are getting the brunt of it. My advice is that you not take anything personally but that you also not become an emotional punching bag for his anger. It's a very fine line but it's behavior that needs to be called or it will get worse.

You mentioned your parents, does OV have family that can help you both? Is he on any medication that would help level off those mood swings? Most important - does the medical team know how badly he is feeling? They have seen all of this before but they cannot help OV if they don't know what is really going on. Is the home care nurse still coming and can you call her to discuss these issues?

The reason I am concerned about what the medical team knows is because he will actually feel worse during chemo and radiation. Build a good foundation of communication with them from the beginning. It is the best thing you can do for OV. If he doesn't want the doctors to know then you call them privately and tell them the truth. Sometimes in home care we arrange "family meetings" where everyone gets in the same room and talks about what is going on. It's another way of getting feelings expressed with neutral parties facilitating the conversation.

I agree with David that it would be good for OV to get on the forum as a way of expressing his feelings. People here have dealt with all kinds of issues and it might give him a connection to others who have gone through this. That's good advice about reading selected posts to OV to see if he relates to it. Maybe he could also explore the links on the home page of the website, there's tons of information and resources there.

Of course you can't pretend every day, that's only a temporary fix at best. We all go through a period in the beginning where we try to be all things to our partner. I think it's a way of coping with the shock of getting the diagnosis. We want to be the shield that protects them and makes it all beter. After awhile you realize that you can't do all that - it's exhausting and unrealistic.

There are also some things that we just can't fix without the help of others and the anger cycle that OV is having is one of those. Please discuss these issues with his medical team and see what they recommend.

I'm concerned about the new lump on his jaw line, has the doctor taken a look at that and done any testing to see what it is? Anything like that needs to be checked out immediately. Don't panic about it, there are other things that can cause lumps but you need to have a doctor diagnose it. Did OV start the radiation and chemo today? How about speech therapy to deal with the swallowing and speech issues?

No one ever expects to be dealing with cancer at any age, let alone at 25. You obviously love OV very much and you have been a big part of each other's lives since you were children. Use that connection to let him know that you still love him and support him, and that you want him to work with you - and the medical team - to help himself. You are entering a period of treatment where it will get worse. Please don't try to do this alone. Use your family, friends, doctors, nurses and anyone who looks remotely interested to help both of you get through this. If OV is not able to express what he is feeling right now then you talk to a counselor about your feelings. Do whatever you need to do to stay within the best perspective you can maintain.

Jack and I wish you and OV luck and please call someone on the medical team to let them know what is going on. Let us know how you make out.

Regards JoAnne

Since my last post, I got a lot of good advice from all of you. In regards to my boyfriends anger problems, I have contacted his surgeon and made him aware of it, and asked for him to speak with a councellor. I know that isn't something my boyfriend wants to do, but I am looking at him from the outside and seeing that he does need someone other then myself to talk to. His tantrums have calmed down, and thanks to the chemo he is finally getting some sleep.

The new bump on his jaw bone was something I was worried about, we had to wait for the biopsy results and the MRI to come back. So they stopped the radiation treatment temporarily because they wanted to do a CT scan. In the meantime, his radiologist had informed him that he has three new tumors: one on his jaw, one behind his nose, and one in his throat. That is such upsetting news before Christmas, he is a fighter and keeps pushing hard. They also informed him that they have to increase the dosage of radiation, and that would mean that speaking and eating would probably not be possible in the future.

Even though I was so upset by this news, I didn't cry - I just felt angry. Why him, why now - I just don't understand how all of this works. Especially since he just proposed to me and it just seems like after a little high, we have to come back down to a low.

I just keep praying, and wondering within myself if it is possible for him to survive this. Only a miracle is what I am hoping for, he is such a wonderful person, I don't want him to go thorugh this anymore.

Sorry everyone, not really happy today - just wanted to vent. I would ask him to come online and do the same, but he says that he doesn't feel like doing anything. I hope you all have a merry christmas, and enjoy your holidays. God bless you all.

God bless you too. You both continue to be in my prayers. We don't know why things play out the way they do, best we can do is deal with them. You are doing just that. You have shown great courage and strength in the face of this beast and I'm sure you will continue to be strong. Don't ever think about giving up and encourage your fiance to do the same. I'm sorry that this is your Christams 06. I pray you find some joy together this holiday season.

Tim Stoj

Hi Bhavna,

It's good to hear from you again but I am so sorry that you have this news to deal with. You didn't tell us if you said yes to the proposal but I am guessing that you did.

I am glad that OV is speaking to a counselor and I would strongly urge you to do the same. I know I waited too long to do that thinking what was there to say. When I finally went I couldn't shut up and I was still venting as I was being ushered out of the office. There's so many thoughts that go through your mind at times like this and speaking to an objective professional helps to clarify your thinking.

None of us understands how any of this works or why it is happening to us. It's not fair, but that's part of life. We live with hopes, joys, fears, anger, and with cancer -uncertainty. I think you are doing a wonderful job in supporting OV and being an advocate for his care. You are pushing him when he needs it and communicating with the medical team on what is really going on.

In spite of everything, you are still wishing all of us a Merry Christmas, which tells me you have the capacity to look beyond yourself and care about others. Hang on to that connection to get you through the coming months. I sincerely hope that the treatments will work for OV, despite the side effects that it will bring. It sounds like the doctors are trying to be very realistic and honest with you - and that is a good thing.

My thoughts and hopes are with you both and here's wishing for a better year ahead in 2007.

Regards JoAnne

Dear Bhavna, JoAnna pretty much summed it up- just remember that you both have many people pulling for you to deal with this the best you can. Amy

Thank you to all of you and for your support and advice. Sorry about the venting, it was just difficult to deal with the news at first, but I have pulled myself together and I am learning how to cope with it better. I am going for counselling this Sunday, and yes I did say yes to my boyfriend's proposal. Through this journey, no matter where it takes us, I will never give up on the most beautiful person I have ever met. Forever and always I will be there for him to support and love him, and hopefully he can fight this and be here because there are so many things left that he would like to do.

As for all of you, you have been my strength through all of this, all your support, advice, and prayers just help me to get through. You are all so wonderful, even though I haven't met you all personally, I really appreicate the time that you take to help both me and OV through this. Merry Christmas, happy new year and may you all be healthy, happy and with loved ones always. I hope that my boyfriend and all of you do get through all of this and god bless you all.

Take care!!

Hello everyone, it has been a while since my last post. I hope all of you are keeping well, and having a good new year.

Tuesday, January 30, 2007 is the last day of my fiance's treatment. Which feels good to know that he won't have to go back and forth so much to the hospital, and he can finally rest. But even though it feels like a relief that he will be done, all of me feels worried about what the doctors will say about his condition.

Last night we were chatting and he said to me that the last time the doctors spoke with him about the three new tumors that they found, they said that they didn't think he was going to make it, but that they would increase his dosages and do what they can. Has anyone else had this said to them and beat the odds? I can't lie, I am terrified, and after our conversation, I can't help but feel really down and worried about how much time we have left together. I love him so much, cancer has really taken a toll on him but it doesn't change me or how I feel for him. 9 years together this year and I want to continue growing together, I just keep wondering if we will get the chance. I look at him and I ask him what he thinks or how he feels, and he is positive that he can beat this, and that just gives me strength to keep on fighting with him.

The tumors he has have shrunk, one by his jaw bone, one by his adams apple, and one beside his nasal passage. The two I can see is the one on his jaw bone and the one by his adams apple. They have shrunk a lot, but I still see a little lump there. I am just wondering if within two days it is possible to get rid of these tumors. All I do is keep praying for a miracle. I want the best for him, and if I could be a little selfish, I just want to be around him as much as possible.

When I talk to others around me who haven't been through anything like this, they say that everyone has to go sometime and that I should prepare myself if necessary. It hurts to hear that, even if it is true I just can't bear that thought. I know this can happen to anyone, and learning how to deal with it is a part of life. But it just feels so unfair, we just kept saving our money and waiting for the right moment to be together, not knowing that this would change everything. We never got a chance to do half of the things we wanted to do together, and I only want to do those things with him.

He is not much for forums, but I know that through this whole battle, all of you have been a part of that strength I needed to get by and I thank you for all your kind words of encouragement, your prayers and support. My fiance and I just want to say thank you and god bless you all. I hope you all beat the odds and enjoy your life with your loved ones.

I'm terrified and just continously hoping and praying for that one miracle that can save his life. I hope for that same miracle for all of you. God bless, take care.

Dear Bhavna, What you are going thru is lousy. Advice, suggestions, whether you agree or not does not change how you both feel. How does one PREPARE for the worst.We are all different emotionally, my hope for both of you is to respect each others emotions as at times they can be different.I can't offer anything that will make you feel better but my biggest mistake when my wife passed was that she was always holding out for hope while I was the realist. The true miracle is how you GROW Together from here. Take some time and take that trip you always wanted, and deal with all this crap later.People have lived a long time with what DR's describe as incurable cancer. My heart reaches out to you both hoping you find some comfort thru this very difficult time.

you have one of the most eloquent ways of writing on this forum. What an amazing woman you are. I cannot even try to understand what you are going through right now with that kind of news, I do know what a toll the caretaking process can be, and you have to, I MEAN HAVE TO take care of yourself too. It is a wonderful attribute to be so giving and loving, but our bodies were not meant to be deprived in the process. Make sure your eating well, stopping to take a bath with candles, even having a sip of wine, because you are fighting for HIS life right now. Whatever good that does come from this illness will be up to you (and allowing God to be a part of)to make happen. There are too many things that I took for granted prior to this disease, especially my relationship with my husband. I dont think that I ever have loved my husband like I love him now. (After 16 years) I also had to look at some really hard aspects of my life, and realize how small they were in comparison to this disease. I dont know you personally, but you are amazing in your wisdom and you bless me with your heartfelt postings.
Love and Prayers
Jennie

I wish I had something to say to make you feel better. Just know that you are both in my prayers, everyday.

God Bless.

Amy

Bhavna,

My heart aches for you two. There are miracles that happen everyday. There are folks walking around today that were told they wouldn't be.

I know it hurts when folks say things like everyone has to go sometime. No one can possibly begin to feel what you are going through.

Hold your fiance' everyday that you can. That may be a couple of months of many years, only the lord knows how long that will be, but hold him.

Bhavna,

The rad will continue to work in his body for weeks past the last Tx so lets hope that it kills whatever cancer is remaining.

Please do not give up now. Remain as strong as you can as long as you can.

Hello everyone, thank you for all your kind words of encouragement. Last Tuesday, I went with my fiance to see two of his doctors - one for his chemotheraphy, and the other was for radiotheraphy. Tuesday was the last day for both, and according to the doctor who does chemotheraphy for my fiance, she thought it was best to discontinue the last two treatments because she thought that his condition and the amount of the dosages would make no difference. At first I was thinking if she was right, but I looked over at my fiance and saw how tired, weak and just sick he was, and I knew that she was saying the right thing. Nevertheless - I can't give up hope just yet. Then we went to his last session of radiation, and we were both excited for this part to be done. In fact, I told him that when he is completely done, I would take a day off from work and we would just celebrate the entire day together, and I did just that. But after the radiation session was over, we had to go and see his radiologist. I never expect to hear anything positive or negative, no expectations - just the truth, because from there it is easier to know what to do next. The radiologist made it clear that the tumors inside my fiance would definately come back and kill him, and that they have no way of saving his life. No more suregery because they have already done enough extensive surgery on him, no more radiation or chemo because both has done a lot of damage, including damaging his new tongue and his ability to speak.

I was so upset when they told us this, I mean it was the truth, but sometimes the truth just hurts. So like always, I am here trying to be this tough girl by his side, and I couldn't help it but just cry. But after that day, I thought about everything - everything me and my fiance have shared up to this point and everything everyone has said to me, including all the advice and words of encouragement from you all. I went back and forth with thoughts of is this really it? I mean can I really sit here and accept that? Sometimes we all have to face things in life that we never expect to face, and sometimes even when we have to face it, we find a way to conqure it. Me and my fiance have had a lot of ups and downs, not with each other - with trying to make it through this life together - and if I tried to explain that story it would take forever. But no matter what the struggle has been, we make the most out of what we have and we find a way to get happiness from it.

Well the next day, I was off from work and happy that I was going to be able to spend time with him. At his house, I was looking around at everything and thinking to myself that I have to do something, I can't give up hope - I won't give up hope that he is going to be ok. I have had people tell me to learn how to accept the circumstances and that one day I will move on, but call me crazy or anything else, I refuse to beleive that this is the way it is going to be. For 8 years he has been my strength when I was down, my joy and my best friend. So that day off together, I gave him a massage, drew him a bath, made sure he ate and took his meds, and made him laugh and relax for the entire day. And you know what, he said that was one of the best days he had - and that just pushed me even harder to help him fight this.

I know how I feel inside right now, and some people might read this and feel sorry for me that I am not getting the message or something. But no matter what anyone thinks or says, I love my fiance and I can't give up on him, I won't. In six weeks the doctors said they would do an MRI to see where the existing tumors are, and give us a prognosis from there. But you know what, things aren't physically in my hands - the only thing I can do for him is be his strength, joy and best friend and I can also pray, pray really hard for a miracle to happen.

So I guess this post is all about letting you all know not to ever give up, and to stay strong. May God bless all of you, you are all in my prayers and thank you all again for everything.

I don't know all of you personally, nor have I ever seen you, but for the time I have been posting on this site, you all have given me a lot of hope. For anyone who reads this, I just have a request - if you could just say one prayer for him - his name is Oudom Vong - surgery done on October 31, 2006 - prognosis in six weeks. If you have a moment, if you could just say a prayer for a miracle to save his life. People say two heads are better than one, I also believe that the many hands that join together in prayer can help to make a difference. For those of you who do read this, thank you for taking the time.

Dear Bhavna,

What a beautiful testimony to your love for each other....and to hope.....and to the belief in the power of prayer. You can be assured of my prayers for Oudom. I do believe in miracles.

I read a series of books a few years ago...the Mitford series, and in those books, the husband and wife spoke often of "the prayer that never fails." It is this: "Thy will be done."

I will pray that it is God's will to heal Oudom...and that He give you both strength to deal with whatever lies ahead for you.

Pray hard...never lose hope....and love each other more every day.

Bhavna,

I often think what my reaction would be if I were told that my cancer had returned and there was nothing they could do. I know that I would find some doc out there that would try something "out of the box". I wouldn't give up until I had turned over every stone. I hear what they say about no more rad but if I'm facing sure death not treating cancer, please tell me what have I got to loose testing their science? I hope to God I don't have to deal with that scenario but if I do I'm not going out without a major fight and I know my wife would be right by my side just like you.

We all pray that you both continue to have the strenght you have shown to continue to fight this ugly attack on his body.

Bhavna,

I will continue to pray for you both. Thanks for sharing your thoughts with us. I too believe in the power of prayer and can testify to that power many times in my life. I pray that you will stay strong remain hopeful when other tell you to give up.

Tim

Bhavna and Oudom -
Let me add our best wishes and most fervent prayers for Oudom. We are not giving up on him either, and a prayer for you both has already been sent special delivery. Blessings and Peace...
JaneP

I also deeply belief in the power of prayer. Everyone on this board is in my prayers each day. A special prayer will definetly be said for your fiance and also you. You sound like you have such a good spirit in you. I pray that you keep that, and the many miracles we read about happen to your fiance. I never would of gotten this far without the power of prayer. May peace and strength be with you. Take care.

Sending my prayers your way Bhavna & Oudom. You will both be in my prayers.


Hugs,
Dani

Hello everyone, hope you are doing well. Thank you all for your kind words and prayers, they have been much appreciated.

As of now, my fiance has gone back for a follow-up appointment with his radiologist, who has informed him that the tumors in his neck area are all connected, and soon they will grow larger and soon brething will become difficult to the point where he will completely stop breathing. Well, it's nothing new, we keep coming back to hear them remind us of how they can't do anything. I accept that they are being honest, but I still have to beleive that there is something out there that can help, I'm not giving up.

I read a lot about natural medicine, and I read about something called "Natural Defense Zeolite", has anyone encountered this or had experience or knowledge with this? Apprently it helps with detoxifying the body and helps with clearing the cancer cells - I'm not sure if that is true, but I bought a box and we are going to find out more information through his natruopathic doctor. Got to do something right - can't just sit around and wait, because soon he will have his CT and MRI done and they will tell us how long is left, and for what they are saying - it is a matter of months.

So if anyone has information, I have been doing my research online, but I would like to hear it from a direct source, anything would be appreicated. Thank you all, and God bless you.

Dear Bhavna, Oudom and you certainly have a difficult time ahead. I will keep you BOTH in my prayers by name. He is lucky to have you.

Dear Bhavna - My thoughts and prayers are with you and Oudom in the difficult journey that you both have. You have shown such tremendous courage and love for Oudom - my hope is that you both continue to have the strength and peace you need in the days ahead and that you will feel God's love surrounding you and holding you in His care.

Bhavna,

I agree with you 100%. I would try anything if I were left without medical help. I mean what have you got to loose? I had many friends that tried to get me to try all sorts of "home remedies". I chose to put my full faith in my medical team but if they were giving up, I would definitely consider alternative Txs. Lets hope you find one that helps him.

Thank you to everyone who did pray for my fiance. At this point, he has started taking the Zeolite that we purchased, no signs of anything happening yet - but we are still hoping.

The tumors on his colar bone have now started pussing. Either the tumor inside will grow over his air passage and stop his breathing, or the tumors on the outside will start to bleed and when that happens, they won't be able to stop the bleeding.

Everyday I am on edge just wondering if it is our last days together, I am so afraid. He is still a trouper, working hard to stay strong and fight this, I am so proud of him. But seeing him today, he looks pale, tired and not like his usual self. The tumors are causing him to feel pressure in his chest, and as the doctors keep saying that there is nothing they can do, I feel so bad watching him in that condition. He doesn't want to take the pain meds, he says it isn't that bad, but from the expressions on his face, it looks pretty bad. Since his surgery, he has been in the kitchen cooking me different things that he wants me to try because he wants to know if it tastes good. Although I do appreicate the cooking, and I know it makes him happy - I really want him to just rest, but he refuses - it is like his way of always trying to take care of me. Part of me enjoys it, the other part of me misses him eating with me, and if something happens to him - it will just make me miss him even more.

The doctors say he only has months, still seems hard to beleive - so we aren't believing it. But every once and again, I start to feel afraid.

Not sure if anyone has had this type of chest pressure, or knew anyone who had tumors pussing on the outside, any suggestions would be greatly apprecaited.

Hope all of you are doing well, thanks again for being our support.

Bhavna......What a distressing situation that you and your fiance are experiencing. Life can really be tough. It sounds to me like you are being an angel to him....a true blessing. Miracles DO occur, but if you aren't fortunate enough to receive one, you will always know that you were loyal and loving. I, myself, am moved by your devotion.

Bhavna- I am so sorry you both are going through this. I am praying for both of you, and will hope for that miracle as well. You are handling this with grace and love, and thank god he has you by his side....It must be a great comfort to him.

Hello everyone, I'm back to writing to you after so long. Well unfortunetly things didn't go the way I had hoped, my fiance died on May 5. Since then it has been so hard to get through the days and nights without him, nothing is the same anymore. I miss him terribly, and after seeing what he went through, I can't even imagine what you are all going through. For all the caregivers out there, be strong and don't give up no matter what. Your loved one will appreicate every moment you spend with them.

But I came online again just to say thank you so much to everyone for their kind words, advice and prayers, we both appreciated it so much. I hope all of you are doing well, god bless you.

Bhavna,

I'm so very sorry to hear of your loss. I have prayed and thought of you two often.

Tim

Bhavna, Wishing you much strength and fortitude. You were a good caregiver when he needed it the most. Amy in the Ozarks

I'm so sorry to hear about your fiance. I've thought of you often, you both fought so hard. Please take care of yourself and let others help you get get thru this. In the midst of so many things that were terrible and unfair, at least he could see how much you loved him and that's a gift that I hope brings you comfort down the road. Regards JoAnne

Bhavna,

I am sooo sorry to hear of your loss, the love you two shared was an ispiration , your strength and determination as well. I only hope now you will take the time you need to heal, and find comfort in the memories of the love you shared. My heart and thoughts are with you


Sharlee

Bhavna,

I, like the others, have thought of you often. I am so sorry for your loss. You were an amazing caregiver, and you should be very proud of that. I can only imagine how terribly hard the days are for you now. I will continue to keep you in my thoughts and prayers.

God Bless.

Amy

I cant believe one so young has had to endure so much
God Bless

Liz in the UK

Bhavna,

I am sorry for your loss but the focus is on you now and the rest of your life. I hope you find happiness, you deserve it.

Bhavna,
I am so sorry for your loss. May your memories of your time together help heal your grief.

Take care,
Eileen

Bhavna, I am sorry to read of your fiancee's passing.....I am thinking of you during this difficult time.....Love, Carol

Bhavna

Until God do us part, to have loved is to have lived.


I too, am wishing you the happiness you so richly deserve.

Bhavna....You will never be the same, of course, but you have experienced the sharing of love on a level that many people never have the opportunity to experience. That will change who you are and how you go forward in life. I wish you comfort in the knowledge that you stood by your love and helped him to step from this life into the next one, and that he is no longer suffering.

Thank you all so much for your kind words and support. I took some time off of work, and I am now back to working. It's true, life isn't the same, but I am working hard to keep going, and striving in life, for myself and for Oudom, because I know he wouldn't want it any other way. I have now seen what this disease can do to a person, and I just pray for the best for everyone. Thank you for your prayers and kind words, you are all in my prayers as well, and don't give up the fight no matter what!

Good luck to all, love Bhavna.

Hello everyone, I know it has been a while since I have been on this site, hope you are all well. I was wondering, in Toronto, they don't have a walk for oral cancer, I know they have other types of charities, but would anyone know how to set it up? I didn't even know what oral cancer was until my fiance got it, I want to find a way to spread the word, so people are more aware. I seen that in the states there is a walk for Oral cancer, and I would hope to do the same in Toronto, I just don't know how to go about it.

I would like to do it in honour of him and all of the people going through this, but at the same time, I would hope to raise awareness and help to raise funds to help with the research.

If anyone has any advice on this, please let me know. Thank you.

That's a lovely thought Bhavna and I am sure someone on here will be be able to help you with this.
It's nice that you want to do something so positive after your experience, and it will be appreciated by so many--awareness and funds are everything.

Well done, Brenda

Bhavna

how are you ? I am sure Brian could give you an idea on where to start as well as a few others on here. It is nice to hear from you again !

Shar