Half way done: week four is almost over.
I am half way done, although the hard part as most of you veterans know is just starting. My RADONC said it best yesterday "the honeymoon is over, it gets tough from here on". He is right. My throat is very painful, swallowing is tough and talking above a raspy whisper takes effort.
Feeding tube is coming, the nausea is the biggest reason. I have tried everything from zofran to emend and the chemo nausea is just debilitating. I get infusions every Monday, the delayed reaction from the Cisplatin usually starts kicking my arse on Tuesday night/Wednesday morning and I am in bed through Saturday around noon. I am down to 164 from 189 pre-tonsillectomy. I have been able eat with no or almost no pain until now, just the nausea is so tough.
I suppose that everyone reacts differently chemo and radiation and the various side effects. The alcholics do much better with chemo that "healthy" people due to their histimine receptors being conditioned from the booze, according to my CEMOONC. I am just trying to muscle my way through it now, call it pure will-power I suppose.
I just wanted to check in with everyone since it has been a few weeks. I am hanging in there and will get through it.
Please keep Elsa and I in your prayers,
Mike
Comments
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Half way done.
Yes, it does get harder from here on out, but you are half way finished for getting zapped! Keep checking off the days, and please get that peg tubs if you need it.
Mike, I will be keeping you and Elsa in my prayers.0 -
Hump Day
I recall this time of my treatment along time ago. I had been counting down days and knowing when the half way point was I called it hump day. When that day came a close friend brought me a stuffed humped back camel.
Prayers going out for you and your wife Elsa for strength and to continue to fight in the fight.
John0 -
A small suggestion
Mike,
I would like to make a small suggestion as you head into the last few weeks of your treatments. Have you tried the Baking Soda and Salt solution to rinse and gargle with as needed to take the edge off of the discomfort caused by the sores.
I used this solution during my treatments and it really helped me. It is 1 teaspoon of Baking Soda, 1 teaspoon of Salt, mixed with 1 Quart of room temperature of water. I would use this as often as every 20-30 minutes if needed. I would rinse/gargle and spit most of it out, then I would swallow the little bit left. At about the point you are at now, I increased the amounts to 1 Tablespoon of each in the quart of water. This is not for everyone, as some people have stated that the Solution burned their mouth. It didn't do that to me, kind of semi-numbed my mouth.
Yes, your voice will be a whisper for a spell, maybe a few months after treatment ends, but it should return to normal. Recovery returns not measured in Days, but by Weeks, Months for many, there are of course those that bounce back much faster, hopefully you are one of those that bounce back quickly.
My Best to Both of You and Everyone Here0 -
Hard Charger
You know it...when times get tough, the tough get going.....being in the military as long as you have, you know you are best when times are the worst...hooorah!!!.
You're doing great, and you'll figure out what works best for you to gett hrough this battle.
Similar to Marine, I used a similar mixture/solution of hydrogen peroxide/baking soda for a rinse.
Me not having the PEG, I used the numbing solutions liquid hydrocodone/oxicotin or lydocaine solutions to numb the throat, drink a few ensure plus, eat a few soft canned sliced peaches, drink a glass or so of water, followed by a ground up percocet in a little water to knock the edge off the pain.
But then I wasn't having the nausea issues as you are either.
Keep going trooper, you're doing great...
Winston Churchill Quotes - "If you're going through hell, keep going..."
Best,
John0 -
Hang in there!
The halfway point is a big accomplishment, but as you said, the hardest part is yet to come. Just hang in there and get through it, as it will be worth it in the end.
Along the lines of Skiffin's quote - our cancer fight song was "If you're going through hell" by Rodney Atkins.
If you're going through hell, keep on going, don't look back, if you're scared don't show it, you might get out before the devil even knows you're there.
If you're going through hell, keep on moving, face that fire, walk right through it, you might get out before the devil even knows you're there.
Here is to going through hell and getting out the other side!
Good luck.
Myka0 -
Keep the spirit up Jeepmanluv2cut1 said:Hang in there!
The halfway point is a big accomplishment, but as you said, the hardest part is yet to come. Just hang in there and get through it, as it will be worth it in the end.
Along the lines of Skiffin's quote - our cancer fight song was "If you're going through hell" by Rodney Atkins.
If you're going through hell, keep on going, don't look back, if you're scared don't show it, you might get out before the devil even knows you're there.
If you're going through hell, keep on moving, face that fire, walk right through it, you might get out before the devil even knows you're there.
Here is to going through hell and getting out the other side!
Good luck.
Myka
Jeepman
I remember getting close the the end. I counted the days down with a calendar by XXX out the days one at a time. The final couple weeks are when the rads really begin to work and kill off all this nasty disease. Keep telling yourself when you are under the mask, I am getting better, I will win, never going to see this cancer again!!!
Keep plugging and get hydrated as well. Your on the road home bud, coming into the 4th turn and you can see the finish line. FINISH STRONG!!!
All the best,
Steve0 -
Half done, half won!
Great to hear. It's wierd how ocns differ. My rad/ocn said she would not start treatment until I got my port and peg. She did not want the extra strain on my system in case I needed one later. Thank God she insisted. I was on the tube at the halfway point of rad treatments.
Throat was so sore I could't bear the pain.
A foaf had the exact SCC base of tongue that I had and the same treatment. However, she never had a tube installed! I told her about a woman I met at the rec center that never had a sore throat during the same illness and treatment.
She told me that through-out her treatment, she gargled with soi sauce. My foaf tried this and it worked for her. Not a recomendation, just a suggestion.
Has anyone heard of this?
I worked right up until my second chemo, but I was never bed-ridden. I had five days of chemo and went home each Friday with a pump for the weekend.
It has to get worse for you to get better. My neck was covered in 2nd degree burns, so bad that after the 6th week my rad/ocn said "We're gonna give you a week off." I sailed through the last 2 weeks.
And this may sound strange, but I kinda got depressed after the treatments were over because I really missed seeing those familiar faces that I saw daily.
One day at a time. It won't be a walk in the park, but it's not unbearable. You will do it!0 -
Huh.mls351w said:Half done, half won!
Great to hear. It's wierd how ocns differ. My rad/ocn said she would not start treatment until I got my port and peg. She did not want the extra strain on my system in case I needed one later. Thank God she insisted. I was on the tube at the halfway point of rad treatments.
Throat was so sore I could't bear the pain.
A foaf had the exact SCC base of tongue that I had and the same treatment. However, she never had a tube installed! I told her about a woman I met at the rec center that never had a sore throat during the same illness and treatment.
She told me that through-out her treatment, she gargled with soi sauce. My foaf tried this and it worked for her. Not a recomendation, just a suggestion.
Has anyone heard of this?
I worked right up until my second chemo, but I was never bed-ridden. I had five days of chemo and went home each Friday with a pump for the weekend.
It has to get worse for you to get better. My neck was covered in 2nd degree burns, so bad that after the 6th week my rad/ocn said "We're gonna give you a week off." I sailed through the last 2 weeks.
And this may sound strange, but I kinda got depressed after the treatments were over because I really missed seeing those familiar faces that I saw daily.
One day at a time. It won't be a walk in the park, but it's not unbearable. You will do it!
Soy sauce? That burns me now and is salty. I cannot imagine that during rads. Or is soi something else, I was thinking it was a typo or spelling error. That would really surprise me.0 -
Soy Sauce - Kikkomansweetblood22 said:Huh.
Soy sauce? That burns me now and is salty. I cannot imagine that during rads. Or is soi something else, I was thinking it was a typo or spelling error. That would really surprise me.
Wellll.....
I do like it on sushi, and my throat was pretty raw...hmmmm guess I missed a perfect opportunity, LOL..... But sure I couldn't have dealt with the Wasabi and Ginger Root....
JG0 -
Welcome mis351wmls351w said:Half done, half won!
Great to hear. It's wierd how ocns differ. My rad/ocn said she would not start treatment until I got my port and peg. She did not want the extra strain on my system in case I needed one later. Thank God she insisted. I was on the tube at the halfway point of rad treatments.
Throat was so sore I could't bear the pain.
A foaf had the exact SCC base of tongue that I had and the same treatment. However, she never had a tube installed! I told her about a woman I met at the rec center that never had a sore throat during the same illness and treatment.
She told me that through-out her treatment, she gargled with soi sauce. My foaf tried this and it worked for her. Not a recomendation, just a suggestion.
Has anyone heard of this?
I worked right up until my second chemo, but I was never bed-ridden. I had five days of chemo and went home each Friday with a pump for the weekend.
It has to get worse for you to get better. My neck was covered in 2nd degree burns, so bad that after the 6th week my rad/ocn said "We're gonna give you a week off." I sailed through the last 2 weeks.
And this may sound strange, but I kinda got depressed after the treatments were over because I really missed seeing those familiar faces that I saw daily.
One day at a time. It won't be a walk in the park, but it's not unbearable. You will do it!
Welcome to the forum mis351w.....
Awesome people here, tons of history and experience....
I agree it is kinda of anti-climatic when you first finish treatment, as you have been the center of attraction and main focus of everyone daily for several months....
Anyways sounds like you are finished and doing well....
Also, please excuse my humor...sometimes I'm my own biggest fan.... I think it's because sometimes I'm the only one that gets my humor...or at least the only one that laughs at it...dohhhh....
Best,
John0 -
Good job Mike
Sounds like you're doing great. PEG would be a good call now. Hadn't heard the alky theory before. I'll keep you both in my prayers. Keep on keeping on.
AB0 -
sweetblood22 huh
Sweetblood22, you are an asset to this site and offer some very astute comments and I have read many of them.
I knew something didn't look right when I spelled soi. It IS soy sauce.
The lady whom swore by it got the suggestion from a rad nurse. My foaf started the soy before treatment and was able to use it through-out her entire treatment and never had a trace of sore throat. My rad/ocn recommended that I start using salt water during treatment. I didn't and I was relying entirely on the tube by week 5 of rad.
Maybe I'm old-school, have you never gargled with salt water? My grandmothers and mother always had me gargle with salt water for a sore throat.
Soy or salt, they're the same to me, but maybe there is an added ingredient in the soy that helps. Anyway, I'm not saying a person should use it, but there is at least two people who swear by it.0 -
skiffin16 humorSkiffin16 said:Welcome mis351w
Welcome to the forum mis351w.....
Awesome people here, tons of history and experience....
I agree it is kinda of anti-climatic when you first finish treatment, as you have been the center of attraction and main focus of everyone daily for several months....
Anyways sounds like you are finished and doing well....
Also, please excuse my humor...sometimes I'm my own biggest fan.... I think it's because sometimes I'm the only one that gets my humor...or at least the only one that laughs at it...dohhhh....
Best,
John
Your humor is ok with me. My humor is dry and sarcastic, a deadly combo.
Some people get it, but they've known me for 30 or 40 years.
My daughter and her boyfriend think I'm funny.
Yes, cancer free for 5 years this November, with no side effects.
My rad/ocn calls me the poster child for scc base of tongue.
Thanks for the welcome buddy!0 -
****-tute and ****-etmls351w said:sweetblood22 huh
Sweetblood22, you are an asset to this site and offer some very astute comments and I have read many of them.
I knew something didn't look right when I spelled soi. It IS soy sauce.
The lady whom swore by it got the suggestion from a rad nurse. My foaf started the soy before treatment and was able to use it through-out her entire treatment and never had a trace of sore throat. My rad/ocn recommended that I start using salt water during treatment. I didn't and I was relying entirely on the tube by week 5 of rad.
Maybe I'm old-school, have you never gargled with salt water? My grandmothers and mother always had me gargle with salt water for a sore throat.
Soy or salt, they're the same to me, but maybe there is an added ingredient in the soy that helps. Anyway, I'm not saying a person should use it, but there is at least two people who swear by it.
Yep, that's me. Yeah. I crack myself up too. I made like five jokes at the doctors office today, he didn't crack a smile at one of them. There are only a select few that find me quite funny.
I did gargle with the baking soda, salt solution, but towards the end, my mouth was so bad, I couldn't do it. (even plain water burned) I had a lip lock on my magic swizzle bottle and was on 75mcgs of fentanyl and I couldn't stand the pain in my mouth and tongue. It was horrendous. Months later, when I could finally drink and try to eat, and drink that wasn't sweet, but savory, tasted like pure salt. Even now, I cannot really do salt two years later. Burns like heck. I don't eat packaged foods, and if I do use a canned stock, I use the low salt, and use it 1:1 with water.0 -
****-tute and ****-et and cutesweetblood22 said:****-tute and ****-et
Yep, that's me. Yeah. I crack myself up too. I made like five jokes at the doctors office today, he didn't crack a smile at one of them. There are only a select few that find me quite funny.
I did gargle with the baking soda, salt solution, but towards the end, my mouth was so bad, I couldn't do it. (even plain water burned) I had a lip lock on my magic swizzle bottle and was on 75mcgs of fentanyl and I couldn't stand the pain in my mouth and tongue. It was horrendous. Months later, when I could finally drink and try to eat, and drink that wasn't sweet, but savory, tasted like pure salt. Even now, I cannot really do salt two years later. Burns like heck. I don't eat packaged foods, and if I do use a canned stock, I use the low salt, and use it 1:1 with water.
Well, I like your sense of humor.
I tried to crack jokes to my ocn/surgeon and finally gave up. I think with all the grim issues that they deal with, they are not accustomed to patients having a sense of humor.
Hope you're feeling better ear-wise. It's all in your head....lol0 -
Maybe it won't get any worseHondo said:Hi Mike
Sounds like you are doing well, not too much more to go to get to the finish line my friend. Keep positive and keep strong.
All the best to you
Hondo
Jeep, you have gone through about the worst of it already including just the fact that you now know what all of this is. It was never really impossible for me to eat, just to keep anything down. I had a similar nausea problem that had me vomiting for weeks. It was caused partly by the chemo but also by reactions to each of the pain-reducing drugs they tried for pain I was not yet having. They wanted to try to head this all off and know what to do once the pain got really bad but it never did. While unfortunate and crippling to me, I don't blame them as that is what is indicated for most people.
I did end up losing more weight than you have (so far) but we never got a tube because it would only have been supplying more ammo for the upchuck until we could solve the real problem. We did use magic mouthwash for the burning right after vomiting as well as for before eating but actually, not taking drugs was, for me, the solution. Once we did, the last few weeks were no problem (not fun at all, mind you) but once I could keep things down, between what I could eat and the Boost+ we knew we could beat this thing and slowly work back up to 1000-1500-2000-3000 calories. We tracked every calorie on charts and I remember being so proud to tell that nurse that I had hit 3000 the day before. I felt like I was cramming but I did it. I regained 15 the first month after treatment and have now regained 30.
So, PEG or not, you just might have turned the corner anyway. Keep the faith. You should now be fully confident that you are going to beat this thing. Doug0 -
Rinse and Spitmls351w said:sweetblood22 huh
Sweetblood22, you are an asset to this site and offer some very astute comments and I have read many of them.
I knew something didn't look right when I spelled soi. It IS soy sauce.
The lady whom swore by it got the suggestion from a rad nurse. My foaf started the soy before treatment and was able to use it through-out her entire treatment and never had a trace of sore throat. My rad/ocn recommended that I start using salt water during treatment. I didn't and I was relying entirely on the tube by week 5 of rad.
Maybe I'm old-school, have you never gargled with salt water? My grandmothers and mother always had me gargle with salt water for a sore throat.
Soy or salt, they're the same to me, but maybe there is an added ingredient in the soy that helps. Anyway, I'm not saying a person should use it, but there is at least two people who swear by it.
I used Hydrogen Peroxide and Baking Soda....
Some on here use salt, baking soda and other variations....
I could see where the soy might be used just for the salt alone...kinda weird though....definitely sushi breath, LOL....
JG0 -
It's all in your head...mls351w said:****-tute and ****-et and cute
Well, I like your sense of humor.
I tried to crack jokes to my ocn/surgeon and finally gave up. I think with all the grim issues that they deal with, they are not accustomed to patients having a sense of humor.
Hope you're feeling better ear-wise. It's all in your head....lol
Budump, bump. 0
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