To all,
As you can tell from my previous post my husband, Andy, is still struggling with post treatment symptoms. He still has terrible neck cramps, trouble swallowing(his water bottle is his life) and no saliva glands. We've been to several doctors, dentists, naturalists, etc. but things either don't work or only work for a short time.
We did find that Aquaphor worked really well for his skin during and after radiation.
Any suggestions for his swallowing trouble, and the cramps??
Thank you for all you are doing here. I certainly feel very isolated at times with this. We live in a small town and I haven't met anyone here who has gone through this.Much less supported someone with this.

hopeful,
Robin

In my own case and I believe in many others, my future (and likely your husband's) is a matter of personal adaptation, work-arounds, and mostly acceptance. My xerostomia has not improved since the first 6 months after radiation. My water bottle is now as much a part of who I am as anything else in my life. It is like my wedding band, wristwatch, etc, always there with me. I hardly notice it anymore though it is always in my hand. I put water in dishes at retraunts with it, (to make pasta sauces wetter, to make mashed potatoes wetter, etc.) I I have learned to ignore the looks from those who do not know what is going on... even the looks I get carrying a water bottle while dressed in a tux at a formal event, which to many seems out of place, it just is what it is, and who I am. I do not think you are going to find your solutions in doctors, naturalists etc. it is in adaptation and acceptance of and to the new situation.

As to the cramps I can only state that mine have gotten worse as the years have gone by, and while they are aggrivating, the radiation damage has done its work and they are not going away. While an occasional massage feels great, what has helped the most is upper body exercise to take the load off of my neck, and strengthen supporting muscle groups, as the muscle spams seem to be worse when my neck is fatigued. I also have 3 herniated discs in my neck from a crash that also broke my collar bone, which exascerbate all this, and between NASID's and tolerance I try to find middle ground. Given what others have been through, and knowledge of how much worse it could have been, I have learned acceptance. To someone like myself who feels that I must always do better, be better, etc. this was a difficult journey. But at some point you have to realize that this is the best it is going to get, and live within the new parameters that exist. Life will never be the same, but it is sweet just to be here.

Robin-
I am so happy to hear about your Hannah. At 26, I was quite devistation to hear that we might not be able to have chilren and sperm freezing was too expensive. That is wonderful!!!
Does he take anything- maybe like a muscle relaxer or maybe a deep tissue massage once a week? As for dry mouth- I remember his doctor telling me that it takes a long time to get better and it might not 100%.
I will ask the nurses when we go for treatment today- and I will pray for him.

Delia

Brian
I think we are starting to accept the fact that it won't get any better. Long ago we realized it will never ever be the same. My husband is such a proud, independent person. This, as with you, has been very hard for him to accept. No longer is he invincible, shock of all shocks-- he is human. I smile when you write of your water bottle. It as much a part of me as it is him. I keep extras in my car for him in case he forgets(yeah right). I also grab it up and check more often to see if we have that than my purse! I just hate to see him still suffering (with the cramps). You are right though-- it seems he has them more often and more intensely when he is tired, or sick. Thank you for your support.

Robin

Delia-

Andy and I both are praying for you and Charlie. The doctors told us the same thing for Andy but still no improvement. He has tried everything, evocax, salagen, throat coat, you name it. The water bottle is still the most helpful. He has tried muscle relaxers and the massage but the relief is only temporary. But you know we never give up hope. He has too much to live for.

We arethinking of you today for your visit.
hugs and prayers,
Robin

Delia -
You are among good company here. The thick mucous is horrible - but fairly common with the treatment. For several weeks, Kenny could not eat or drink much of anything (even water 'burned'). Don't wait for the doctor appointments to get different medications. The medical oncology staff is the very best to take quick action for calling in Rx. For Kenny, the nausea was very advanced and never ending. A combination of anti-nausea drugs finally worked. For the mucous - check out the information in "currently in treatment" - I believe there are some good ideas listed there. While nothing is guaranteed to work - sometimes just 'trying something' helps everyone's spirits. I think there is a suggestion for soda water (tonic water) to use as a gargle.

Regarding pain, again it took a combination of drugs to help ease Kenny's pain. He has a very high pain tolerance and it took a lot of medication to make a dent in the pain level for him. Kenny ended up with an extremely high dose of Hydrocodine (a cousin of Oxycodin) plus Morphine. Many of the medications for pain & nausea come in liquid form - ask your doctor to be sure to write the Rx for liquid. The liquids can be easily administered through the Peg Tube. Also - you can crush the tablets and mix with water to take them through the PEG tube. This was the only way Kenny could take many of his meds when the mucous was at it's worse.

I don't mean to ramble on -- just wanted to send along a few suggestions.

I'm sending positive thoughts and prayers for strength --
Carol

Thank you so much for your suggestions. I appreciate the help! Charlie is miserable with mucous and vomit! He only has 4 more days of treatment left. Did anyone else feel such anxiety and fear at the end? I feel like I should be happy that its over and yet I am scared and upset. There are so many "what if's".
I hope that everyone is doing great and prayers to all!

I'd say that he fits the profile perfectly! This is the hardest time in treatment for many reasons and in addition to anxiety, depression can also set in. Remember also thst it will continue to get even worse for a least a couple of weeks post Tx. Be sure you keep the MO informed. He may need additonal meds. This is also when the immune system crashes and you have to constantly be vigilant for thrush and other infections.

Delia,

Charlie is definitely traveling the same road as most if not all of us. Just about the time it feels like it can't be any worse, the next day is a crap shoot. Be cautious that immediately after treatment when all the hectic and frantic pace of the doctor visits, radiation, blood tests, etc., it will get very calm and when Charlie has the time to think of all he has been through and how different his life is and all, he will most likely reach an emotional low. I think we all hit that point.

I saw some walkers this past weekend with a little velcro strap around their wrist that was attached to a water bottle. I could almost envision the OCF logo across the wrist strap...a nice Lance Armstrong yellow color...with the feature of adding your favorite low-cost water bottle replacement as you need to...hmmmm.

The toughest thing for me right now is to hold out until the post-Katrina water prices come back down to eart...oh and the $1.50 gasoline while I'm at it.

Hang in there, the journey is tough, but the road well-traveled.

Ed

Ed, there is a water purifier that fits under your kitchen sink and attatches to the cold water line.[we sell it at our shop] It's called Ever Pure and kills 99 % of all the awful things in most water supplies. It also makes water taste good. With this system, you fill your water bottle right out of the kitchen faucet- it will pay for itself in a year or less- after that it is just a matter of replacing filters. The company that makes this filter supplies Coca Cola plants, resturants, etc. etc. world wide.If sounds interesting to you, e-mail me and I will give you a web site to puruse. Amy