End of week 6...miserable
Comments
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I sure didn’t. That’s why i’m having a lot easier time of it. I don’t want to seem like I am bragging here, I’m not. I was told the day I left a did absolutely tremendous about they chucked it up to my positive attitude. They also told me that out of all the H&N patients there, I was the only one that wasn’t on a feeding tube. All the others were. I did forget to mention to them it may have been because I didn’t have to go through the chemo! I had quite a few friends that sure helped me! Even hearing from you cheered me up, Swim!
-Steph
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Good for you Stephie! I was told chemotherapy does a ton of damage to the taste buds and the mouth etc... No doubt. But after 33 treatments my throat is so dry and devoid of moisture I'm begging God to work with me on getting the fried glands that produce saliva to return. I know chemo destroys taste buds as well so we're all dealing with the same thing. When I wake up in the morning my sunburned throat is stuck to my tongue. It's one of the most excruciating things in the world. I stagger out of bed to get to my sink where I gargle with lidocaine to keep me from grabbing my .45 ACP and blowing my brains out. I've never had pain like that. I'm a little better off if I can breathe through my nose but I only have 1.1 of my two nostrils working these days with my feeding tube installed. It was better in the hospital as they had purer air. At home with a dog and dust it's far worse so the main nostril this morning was completely blocked and my mouth was wide open. Thus I experienced, again, the same horrific dry throat. I have to be completely conscious of it to breathe through my nose. I cannot understand how my friend skipped the tube, lost 25 lbs and still managed to survive the ordeal. He's almost at a month now since finishing and he's miraculously improving. He's still 20lbs underweight though, and looks a bit like he escaped Auschwitz according to his wife.
Keep the positive vibes flowing here as we all need it. I guess I didn't take the diagnosis so seriously because I was ready for death after one year of a disastrous presidency. I'm serious. At 50 I said "**** this, I don't want to stick around to watch this disaster unfold." Well I got a little spiritual help that reminded me this is one great big freaking illusion. Just breathe and be kind to those in your sphere of influence. My veins in both my arms are hard and painful thanks to Cisplatin. Holy **** are they painful so be glad you won't have that problem. I'm sorry I'm complaining but y'all are the only folks who have had the same experiences. No one else I know in my sphere knows anything about the pain and discomfort of throat cancer. Here's to a nice nights sleep.
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Swim can you sign a first name at the end it would be more personal and for us to call you something besides swim. Your choice.
Mr. Swim if you have a recliner it may be more productive to live in it and sleep there for a while. As the healing takes effect after rads your saliva gets very thick and laying down seems to gather near your throat I know I woke up several times with my air cut off and it was quite a gagging feat to get cleared out and breathing again. It's going to be a very tough time for a while as you well know by now, but many of us have gone through it. You can and will too. As I said before slow process so it's gonna be a bit till you start feeling better. But it is said that when rads are done you are still cookin so to speak. To me, that means rads are accumulative, sort of building up and following behind so when they stop the treatment it is still building and working a bit. The estimate for this is up to 2 weeks but I say once they stop the intensity of the effect starts dropping off. Sorry for your situation but strengthen yourself and just sleep as much as possible and get enough food and hydration in. Get it in your mind and prepare to get through anything you encounter even if you have to concentrate to get through the next hour or the next 15 minutes or the next minute just get to the next one you are getting closer to recovery. Pain, stay ahead of it if you have constant pain then for now take a regularly scheduled pain medicine. Every 4 hours or whatever it takes but be on a schedule. Rinse as you have been doing as much as it takes as often as it takes. Forget about what's going on out in the world right now and concentrate on your situation and getting through this. All the politics and everything else has been corrupt since they were invented that won't change just concentrate on your life and family and friends. Besides that, I don't care who is president or who is in Washington because I know who's on the throne in heaven and that's all that counts. if you can talk pick up a phone and call a relative or a friend. They would probably be glad to hear from you that you are alright and hangin in there. And many times people are afraid to call the cancer patient because they don't know what to say or are afraid they will say the wrong thing id you call first you may put them at ease.
Pray a lot, read the Bible and take comfort in the words.
Here are a couple of links to Bible verses for cancer situations--
Hope--
Healing--
Peace--
Wishing You The Best
Take Care-God Bless-Russ
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Veery good Graham, I certainly hope they are a blessing and a help to you. I also wanted to mention when I said about sleeping in a recliner or for that matter whatever you can do to find comfort and rest you may experience spotty sleep, disrupted sleep, and you may sleep for longer periods as you heal so rest when you can. Also besides sleep, This brutal treatment I think has to have quite an effect on much of our body so anything that is out of whack for now just bear with it and as you heal things will get back in order again.
Take care-God Bless-Russ
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Thanks Russ. I tape my feeding tube to my face on the side they found cancer on so I lay on my other side elevated and my throat actually hurts less on that side while swallowing. The lazy boy offer was made by some friends from Louisiana but my wife said "no house should ever have a lazy boy". Lol. I also get better drainage and I have a humidifier next to my side of the bed that fills the air with moisture. Very cool. I also get on average 8 to 10 hours of sleep every night
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One more thing… I’ve read everywhere to sleep on your left side whenever you sleep.
here’s a great link on it.
If there isn’t anything on the Superthread about this, I may look i to adding it and more things about sleeping. Beagledad had some videos and he has mentioned actually taping his mouth shut so he wouldn’t have such a dry mouth in the morning..
Here is a link to Beagledad’s Youtube: https://m.youtube.com/channel/UC5_hfOHVR5u-CVaI8tvyM2w/videos
He had the same cancer as you did, and I stress DID.
-Steph
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I got some Afrin nasal spray for the dry nostrils. I don't have acid reflux so I sleep on my right side since the left is where the cancer was. I sleep pretty darn good on 4mg of Dilaudid every night. 2mg of Dilaudid every 4 hours throughout the day. 900mg of gabapentin 3 times a day. I'm going to try taping my mouth tonight now that they nostrils are clear. Adding this later- of course I sleep elevated
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Hello Swim,
I am a bit late to the conversation as my treatment ended 17 years ago. Many good points have been suggested to you. As mentioned by others, your recovery time will vary depending on what you went thru, age and health at the start of all this. Measure recovery in weeks, not days. Set in your mind that you went thru nearly 7 weeks of Radiation, that it may take that long to recover. It may happen sooner and hopefully it does. Stay positive, you have just been through a battle and got banged up.
Mouth sores- I was told to use the Baking Soda and Salt Solution. I mixed up a quart of it daily and had it at room temperature. I carried a water bottle with the BS & S in it as well as water bottle. I used the solution as often as every 20-30 minutes to take the edge off of my discomfort. My Oncologist was surprised that I hadn't started taking any pain med's at the 5th week mark and I had quarter sized ulcers in my mouth and throat. He suggested I start and I am glad I did get ahead of the discomfort.
Mucus- as mentioned, and you appear to be on top of this already. Sleeping in an inclined position helps with it, but it also helps with the possibility of Lymphedema, swelling of the neck and face. We have gravity on our side so when we walk around, the buildup of fluids slowly drain down to the reservoir located near our waist line.
My Best to You and Everyone Here
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Wow, highest I've got was 15mg Oxycodone! Actually I don't want anything stronger, that means I'd be in more pain right? No thanks! :)
I get a prescription nasal spray and I rarely use it. I need to go grab a bottle to find the name of it. It's a steroidal spray which they starting giving me 15 years ago when I starting having issues with me left ear's Eustachian tube.
Have you thought about trying Vicks, Mucinex? I wish I could help more!
-Steph
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It's now 2 weeks after treatment. Today is exactly 2 weeks after my last radiation and 3 weeks after my last chemo. Wondering when the pain will subside. I'm off the narcos. I couldn't do it anymore along with managing constipation. No freaking way. I'm now just on the gabapentin and extra strength Tylenol. I have a nasal feeding tube now so 6 boxes of 500cal Kale Farms keeps my weight solidly on line. I've tried sipping a couple cups of tea and drank some pho broth last night. I've put a cup of prune juice in my feeding bag when needed to push things along when I abandoned the narcos. Injected a liter of water last night before bed. Thought I'd be up all night peeing, nope, the body has needed that water. I'm doing the same again today. Speaking a little at a time now. Baby steps.
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Sounds like you are right on track. you are getting enough nourishment and hydration. You are sipping liquids and starting the flow that way and are starting to speak. But you have some pain yet and when will it go away. Well everybody is different and their cancer location and treatment are different so there is no definitive time for it to stop. But as you can see this recovery is a slow process measured in weeks and months so just be patient and do as you are it seems to me you are doing well managing your situation. You will get better and after a while the pain will be gone. If you feel there is anything unusual no matter what it is or feel your pain should be gone by now, by all means, contact your treatment team they are there for you. You are doing an impressive job with your recovery congrats.
Take Care-God Bless-Russ
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Also, Swim let me say that as far as feeling better and the pain going away it seems that you get in the regular rhythm of recovery, taking your pain meds and doing what you do each day to maintain your weight and health, and sanity. And you are just going along from day to day and one day you will notice your pain is a little less or maybe you took your pain med and it seemed to dash it away much quicker and it keeps getting better and less pain from thereon out. Also, I remember feeling pretty bad for a long time and tired and with no energy and just how you feel from the effects of Heavy-duty cancer treatment. And one day I go up and got going and I just felt a noticeable difference, like you know what I feel pretty good today and that is the start of it. You will finally hit a good time in your recovery. Also, I sort of remember feeling good then crappy again and a sort of up and down a bit but eventually you level out and will feel like you are top dog again before you know it. it's all just the passage of time + Healing. Wishing You The Best-Take Care-God Bless-Russ
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Thanks so much Russ. Yes sir. I went and I walked about 2 mi today at Memorial Park here in Houston. It is an incredible weather day so I had to take advantage. I walked with my wife and our beautiful dog and I just thought about the creative energy of the earth all around me helping me to repair my damage throat so I could go on to help millions of cancer sufferers like all of us. I'm working with a company right now that is developed a groundbreaking device that will change the lives of all of those people that are in the hospital in the future. I have a lot more work to do before I leave this earth.
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