Rhonda,

I know exactly what you are talking about. As the treatments got harder Harry would try and try not to go. I had friends take him because he would not refuse to go once they showed up at the house. I think he was more afraid of inconveniencing them or something. Our friends new about his attitude and were gracious and helpful. There were times when I would have to invite someone else to come and talk to him to remind him of why he was going through all of this.

Towards the very end of radiation I had to get really nasty with him. I had to threaten to get one of our son-in-laws to come and force him in the car. He never let it go that far but he certainly bitched the whole way. It was the hardest thing he has ever endured but he made it and other than the weight loss if you look at him now you would never know what he went through.

Get the tube. Make the appointment and just tell him he is going. Enlist your friends if necessary. Harry fought the tube for too long and when he became bedridden and couldn't hardly move at all he regretted that decision. He was so weak from the treatments already and the lack of nutrition and weightloss really made things worse.

As he recovered he started using the tube by himself and eventually I had to have it removed because he had gone to the opposite extreme and became dependant on it.

Today, while his food doesn't always taste grand, he has found some foods that he really likes and he eats what he can. He also drinks protein shakes to supplement. It is hard to imagine that 6 months ago life was so much harder but as time has passed our lives have sort of returned to normal and he is getting stronger by the day.

Hang in there but as a caregiver do not be afraid to be forceful, tricky, or whatever it takes to get him to the finish line. Funny most of that Harry doesn't even remember now so for him it never happened. That is ok with me. What made the stuff I had to do to get him through this more bareable was that the alternative was not an option.

Do what you can and drop in anytime you need a little lift.

Best to you both!

Cindy

Yes that is one of the major sucky parts of chemo & radiation is the loss of taste buds but it is usually only temporary. Mine started returning only after a few months post Tx and are fully recovered now. I didn't use a PEG - I forced mayself to eat all of that cardboard tasting, and worse, crap for months - but I sure enjoy dining experiences now. Because of IMRT I had a full recovery of my taste buds and major recovery of salivary function.

ALL of us had the same taste issues, it'll pass. One must be patient and FIGHT -this is not the time to wimp out..

Tell him to get a grip - risking death for not being able to taste food is a pretty lame excuse and legacy to leave behind. He will get beat up from the treatment - everyone here does.

Tell him also to buckle up his seat belt because the treatment side effects are going to get even worse before its over.

Never thought of myself as upbeat during treatment ~ I was just soooo BORED! Bored of the tube, bored of the day after day treatment, bored of being tired/sick/chemo-pukation, oh so bored of the everything & anything having 2 do w/cancer. bleh! A cancer patient is the lousiest of jobs to have. I mostly disctracted myself w/video games. Cool that he's gotta a driver. I took my sorry butt there every freakin' day (expect 2 when post chemo made me massively ill every hour on the boring hour).

I'm a 2.5 year survivor & I can taste & I've got the salvia 2 do it w/o the amifostine treatments & no IMRT either. Maybe he needs to speak w/a counselor 2 help him find that grit 2 hang-on & come out fighting.

Rhonda,

I have to agree with Gary on this one.

Quitting treatment is a death sentence.

If he needs to talk to someone have him give me a call. He cant quit. We wont let him.

Ethyol is an optional thing. I never had it. Wasnt even discussed with IMRT.

Get him off that fast and back on the road.

I am almost 2 years post treatment (4 weeks to go). I can taste everything but Chocolate and I cant eat hot sauce anymore.

Saliva, It has come back to the point where I dont need a water bottle at night. I can LIVE with that.

My number is 847-456-4119. If he wants to talk I am always avalible night,day, whatever.
Robert

Rhonda,

I was never upbeat during my treatments. I was determined to beat this thing. I was determined to do anything I could to win this battle. And that is what radiation is. It's a battle. Each day, each treatment. Win enough battles and you win the war. If going through radiation is what it took, I was going to do it. I was not going to let cancer dictate who I was or take control of my life. I knew that the radiation would give me the best chance at living. And isn't that what it's all about? The pain and discomfort was a small price to pay.

Let him know that many before him have gone through the same ordeal. Remember that it's always darkest before the dawn.

John

John

Rhonda,
I hope things are better by now. Your post really hit me, as I recall the darkest day of Tom's treatment. He was soooo sick - - and he had already spent a week in the hospital because of a blood clot that had formed at the kidneys, so he was sooo tired of the hospital. I did, literally, have to beg him to continue the treatments - - both radiation and chemo. I used every argument I could and (shamefully?) used the "I can't live without you" argument. Thank goodness for strong and caring nurses, because I think they were the ones, in quiet voices, that coaxed him into submission. It was not pretty, but he is here with me today, and I am happy and he is happy and getting better (but no heavier ) every day.
We are pulling for him - and you.
Nicki

Hi Rhonda -
I totally understand where you are right now. My husband, Kenny, started out very positive about the treatments - surgery, chemo & radiation. But after 2 weeks of radiation and 1 round of chemo he ended up in the hospital for 3 weeks with one complication after another. That is when he gave up. I begged, cried, got mad - you name it. But what it all came down to was Kenny choosing to live.

At the beginning of this journey, I told Kenny that I would support him in all of his decisions - and I had to live up to that promise. He stopped radiation treatments while he was in the hospital and once we got him home, he was set on quitting. A phone call from his RO put it all into prospective - he gave Kenny 1 final week to change his mind. After that, the RO would not take him back as a patient.

I honestly think that line drawn in the sand made Kenny face the reality of death. So, after two more days of wondering if I was going to be a wife or a widow, Kenny asked me to take him to treatment and he finished everything. It has been the hardest thing to do in my entire life - to watch him struggle with this horrific disease and treatment - but he made it.

Is Leon on anti-depressants? I believe they saved Kenny's life. Once Kenny decided to return to treatments, his depression worsened (quickly and dramatically). It was our family doctor (and dear friend) that finally convinced Kenny to give anti-depressants a try. If Leon is not getting counseling or thearpy for depression, please seek it out immediately (and for yourself). Depression is nothing to be ashamed of - it is a disease as well. But more importantly, it is a disease that can be treated.

Kenny is now 5 months out from his last treatment. He is still on the feeding tube during the night, but he is eating more and more every day. He has a very long road ahead of him to regain his stamina and strength - but we are both working on it every day.

Take things one day at a time - literally. What can you do today - just today - to help Leon? Don't worry about the world coming to an end tomorrow -- it's already tomorrow in Australia!

Rhonda, you are not alone. Chat any time.
Carol

Rhonda,

As I am reading all the posts, the vivid memories come flooding through my mind. I had such a horrible time with the Ethyol and ultimately stopped but I just couldn't imagine stopping. Each day I looked into the eyes of my wonderful wife and two boys, I knew I had so much to live for and I would perservere. One day in radiation, my neck red and oozing goo and blood, I was running for the bathroom, not sure which end was going to spew first. When I came out I met a young man, half my age. He had been battling lymphoma for so long and he was sitting there in the waiting room with my wife, both of them sobbing. He looked at me and reached out to my hands. Our trip that morning was less than enjoyable and I was at the "hump" of treatment wondering why I was doing this to myself. This young man then told me of all the surgeries, showed me dozens of scars, showed me his horrible teeth and said all this was from cancer and treatment. He said he knew he didn't have much longer but he was going to give it everything until his last breath...for his kids. He then said if I couldn't do it for myself, think of my wife and kids. I am strong in my faith and I knew exactly who put me in the path with this young man and I also knew at that moment nothing would stop me until I breathed my last breath.

I don't know what Leon has decided but I would gladly speak with him too (972-422-2724). We all went through this, on one side of the equation or the other. It can be done although it is no walk in the park. I, too, live for cooking and I knew no matter how bad it tasted, it would be good again someday. Unfortunately, I didn't hang out in this neighborhood until a couple of months after treatment.

Hang in there, it will get better for both of you.

Ed

I don't contribute much as far as writing goes, but I'm still reading almost three years after my Aunt Rosemary was diagnosed with stage 3/4 base of the tongue, floor of mouth, saliva gland with mets to her lymph nodes. I have always shared the same fervent belief as all of you good people do and that's fight, fight, fight BUT after her first surgery, when they wanted to do radiation and she wouldn't hear of it, I learned quite a new and shocking lesson from my Uncle Bobby. The lesson was quite simply this- it's her life and it's her decision. I kept asking her if she understood the possible consequences of this decision and she said yes. To be truthful, it took me probably six months to be able to adjust to this new point of view. I thought that as long as they followed her religiously, as long as she went for her scans etc., we'd know what was going on. Now we're into an even more serious aspect of her decisions. As of six months ago, she won't go for any more tests, any more CTs, PETs etc. She told me she's had it. She's been uncomfortable with her new tongue since day 1. She can't stand the abundance of saliva, the changes that have happened as a result of scar tissue, the fact that she can't eat most of the time and sometimes can't talk. She'll be going for her thrid reconstructive surgery next Monday. The only thing she wants, is to be kept comfortable. Hopefully they'll free the adhesions from the flap that was added to the original flap and she'll be able to talk again without a lot of pain.

I live with her decision every day. Trust me, it's hard because we all know that eventually, this is going to do her in with no post-surgical treatment and no follow-up, but, I have to respect her decision. I follow my Uncle's lead. He stands behind her all the way as far as her choices go. It kills me to not say anything to her, but I have to respect her feelings. This is truly one of the hardest things I've ever had to do.........

The only thing I can say, is love him. Love him with all your heart.

Lisa