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