HELP TREATMENTS START APRIL 30

Charmit

I new to this site and this cancer site. I was told I have head and neck cancer stemming from the HPV virus. Been a long few month had a cyst removed on March 1 and the pathology came back there were 2 out of 3 nodes were affected with cancer. My ENT suspected the source being in my left tonsil. Removal of that was the March 16th. Small section in the base of tonsil is where the cancer was hiding. Was referred to an oncologist and radiologsit who agreed 7 weeks of chemo and radiation but first I need a PET scan....great that showed another node affect and the right tonsil lite up. So surgery again to remove the right tonsil and that was on April 13. Finally good news tonsil came back neagative so only need treatment on the left side, and that starts April 30. AND I AM TERRIFIE!!!! Had the mask made what literally thought my heart would beat out of my chest how am I going to get through the weeks ahead of me. Only to learn the chemo may cause hearing loss and both are going to make me sick!! How does one go through this with a clear head when being scared out of my mind. I have googled things and that has scared me more, I am hoping to get help here of people who been through this and won and how they did it when it seems so hard. And talk to people who are walking this path right now...

By the way I’m 48 years old never smoke don’t drink much and was tested HPV positive reason I have this. I have a beautiful 18 year old girl who I need to be here for who graduates the week after my treatments stop and I heard that’s the worst week. Please help me understand all this and how I can muster up all I have to get me through these treatments and that awful mask??!!!!

caregiver wife

Help to get through treatment

Charmit, Yes - most here have been through treatment, are in treatment, or are a caregiver.  Best advice, one day at a time.  The experience is different for everyone as the cancers are different, location, size, etc.  Treatment can be rough, but it is doable.  As you have questions along the way, come here.  Someone has already done it.  As for the mask, husband took lorazapam thirty minutes before.  Googling will always give you worst possible scenario.  No one experiences the worst of everything.  Elderly husband, in poor health, stayed mostly active throughout.

Many will be here for you,  Wishing you and your daughter the very best.  Crystal

Billie67

Charmit,

Charmit,

first off welcome to the club that nobody wants to joint but where you will find a wealth of caring information! So from here on out, NO MORE googling please, it will only scare you and make you crazy! You can find any answers on google that you want to find, if you get my drift.

I am currently 5 years NED (no evidence of disease) and I have no doubt you will be here too! 

First the mask, honestly I cried when they made mine (I was about 46 at the time), tears just fell and fell. I called my surgeon afterwards and told him I needed something to help me once I had to wear that stupid thing everyday. He gave me something and I only ended up taking it for about the first week and then I was ok. 

For me I did 45 Radiation treatmens and 8 weekly chemo treatments of Eritux. Not sure what chemo you are getting. We all seem to get our very own special "juice" 

I ended up getting a feeding tube (GI TUBE or PEG same thing) at about 3 weeks into rads. I wish I'd had it sooner but my rad onc wanted me to wait as long as possible. His reasoning is becuase he wanted to make sure I kept on using my throat muscles to eat. Our throats can actually forget how to swallow if we don't do our exercises and swallow during treatment. Even if its just sips of water. 

Don't worry about the hearling loss as its not a given that it will happen to you. some are not affected at all. No sense in driving yourself crazy worrying about it. 

My son was a senior the same year I went thru treatment too! Lots in common it sounds.  

My CA was StageIV and like MANY MANY others, I am here! You WILL be too. Lean on us and ask us anyting!  

I'll be thinking of you here in So. Cal!!!

Billie 

nancytc

Hi Charmit

I can help you through this. I had a similar diagnosis...rt tonsil (took a tors robot surgery removing 4 tonsils and resecting the base of my tongue to find the unknown primary), and had three lymph nodes involved ( had one lymph node excised, three involved. SCC Stage 4a).

Fear is your worst friend right now. My doc prescribed me Lorazepam, and the radiation treatments with the mask were the least of my worries. I am hoping that you have a care giver lined up. My daughter and son took turns giving me 24 hour care, and by week 4 of Chemo/Radiation it was a huge blessing. There are a bunch of potential side effects from the treatment, but be aware but dont buy into them until they happen. We all do not get every side effect. I have some great tips and work arounds if you need them along the way. I would be happy to stay in touch with some form of instant message. I had a good friend who was a survivor (9years) and he was at my beck and call and really helped me pull through this. Dont want to sugar coat it. It is pretty horrible for most of us, but HPV+ cancer is CURABLE. Round up  your supporters, ask for help, prepare. Ask lots of questions especially in this group. We have all been through it. I am 1 year out and now live a relatively normalish existence. Not the same, but very good considering. Stay in a mental state of gratefulness if possible. Stay HYDRATED!!! Most important of all by far! Nutrition second most important. If your doc recommends a Peg Tube, I say GET IT! I could go on and on. Well talk girlfriend! I am praying for you!!!

Your friend,

Nancy

 

MGC

HPV

Hi and welcome to this great site.

I had a similar diagnosis. Age 49, HPV stage 3/4 started from tonsil and grew into BOT. Also had multiple lymph nodes involved from tumor site all the way down to shoulder. Never did any surgery though as doctors showed me study saying results were the same either way. No tonsil removal and no neck dissection. I did have 6 weeks radiation and chemo. Never got sick from chemo because they have counter measures/meds for all that now days. The chemo did screw my hearing up bigtime unfortunately. So its now 8 years later I am 57 happy and healthy and NED. Unfortunately I have rare side effect of severe tongue atrophy on primary side but that’s better than the alternative.

Eat well and be positive and make good choices and you will make it through this.

Good luck

Mark

Dean54

Welcome Charmit

Your diagnosis sounds alike like mine and I can't hardly believe they didn't take out both tonsils at the same time while they were in there.

I went thru 33 rad. and 3 chemos and made it thru without using the PEG tube, had very little mouth discomfort,and practially no skin issues. I did get somewhat nauseated from the chemo but if you get on the right meds that will work for you, it's not that bad.

I'd say I lost a little bit of hearing and have some tinnitus from it, not bad over all. It did leave me with reduced saliva and very little taste so it's makes eating rather difficult. No food is enjoyable so it definitely changes your outlook to "eat to live" not the other way around.

5 months out, I feel completely back to normal except for the eating part, some excessive mucous, and dry mouth. I also have to be careful swallowing as it wants to go down the wrong pipe.

Looking ahead, it does seem like a pretty daunting task to get thru but you can do it and it goes by pretty fast. We will be here for you with any questions you might have.

Charmit

caregiver wife said:

Help to get through treatment

Charmit, Yes - most here have been through treatment, are in treatment, or are a caregiver.  Best advice, one day at a time.  The experience is different for everyone as the cancers are different, location, size, etc.  Treatment can be rough, but it is doable.  As you have questions along the way, come here.  Someone has already done it.  As for the mask, husband took lorazapam thirty minutes before.  Googling will always give you worst possible scenario.  No one experiences the worst of everything.  Elderly husband, in poor health, stayed mostly active throughout.

Many will be here for you,  Wishing you and your daughter the very best.  Crystal

Thank you Crystal your right

Thank you Crystal your right one day at a time. However lately I’m going minute to minute with all these emotions. I’m so glad to hear your husband is well and made it through treatment. I guess right now the fear if the unknown. 

God Bless and thank you

Charlene

Charmit

Billie67 said:

Charmit,

Charmit,

first off welcome to the club that nobody wants to joint but where you will find a wealth of caring information! So from here on out, NO MORE googling please, it will only scare you and make you crazy! You can find any answers on google that you want to find, if you get my drift.

I am currently 5 years NED (no evidence of disease) and I have no doubt you will be here too! 

First the mask, honestly I cried when they made mine (I was about 46 at the time), tears just fell and fell. I called my surgeon afterwards and told him I needed something to help me once I had to wear that stupid thing everyday. He gave me something and I only ended up taking it for about the first week and then I was ok. 

For me I did 45 Radiation treatmens and 8 weekly chemo treatments of Eritux. Not sure what chemo you are getting. We all seem to get our very own special "juice" 

I ended up getting a feeding tube (GI TUBE or PEG same thing) at about 3 weeks into rads. I wish I'd had it sooner but my rad onc wanted me to wait as long as possible. His reasoning is becuase he wanted to make sure I kept on using my throat muscles to eat. Our throats can actually forget how to swallow if we don't do our exercises and swallow during treatment. Even if its just sips of water. 

Don't worry about the hearling loss as its not a given that it will happen to you. some are not affected at all. No sense in driving yourself crazy worrying about it. 

My son was a senior the same year I went thru treatment too! Lots in common it sounds.  

My CA was StageIV and like MANY MANY others, I am here! You WILL be too. Lean on us and ask us anyting!  

I'll be thinking of you here in So. Cal!!!

Billie 

Hi Billie sounds like we do

Hi Billie sounds like we do have lots in common and yes the mask scared the life out of me. When the simulation was over I was shaking from the inside and couldn’t get to my purse quick enough to grab my Ativan!! Then ever since I’ve been thinking how do I make it through in that mask in that room all alone, I want someone to hold my hand....big baby yes lol

Then all the side affects why I think I’m going to get all of them, again mind running wild. Feels like a nightmare and I want to wake up, however hearing from everyone on here is helping. Cause if y’all made it through I can too. Just the first day and I’m sure many after will be tough but I’m going to get it done and hope the 35 days fly by so this can be behind me as it is you!! 

‘They are holding off on the feeding tube for me as well but I have low tolerance for pain. I am going to do what needs to get done to get me through. I only need one side treated and was told side affects are less, not sure how true and we shall see very soon. Another worry being weak, my girl graduates the week after treatment ends and I can’t nor will I miss that day!! 

God Bless you and thanks 

Charlene 

Charmit

nancytc said:

Hi Charmit

I can help you through this. I had a similar diagnosis...rt tonsil (took a tors robot surgery removing 4 tonsils and resecting the base of my tongue to find the unknown primary), and had three lymph nodes involved ( had one lymph node excised, three involved. SCC Stage 4a).

Fear is your worst friend right now. My doc prescribed me Lorazepam, and the radiation treatments with the mask were the least of my worries. I am hoping that you have a care giver lined up. My daughter and son took turns giving me 24 hour care, and by week 4 of Chemo/Radiation it was a huge blessing. There are a bunch of potential side effects from the treatment, but be aware but dont buy into them until they happen. We all do not get every side effect. I have some great tips and work arounds if you need them along the way. I would be happy to stay in touch with some form of instant message. I had a good friend who was a survivor (9years) and he was at my beck and call and really helped me pull through this. Dont want to sugar coat it. It is pretty horrible for most of us, but HPV+ cancer is CURABLE. Round up  your supporters, ask for help, prepare. Ask lots of questions especially in this group. We have all been through it. I am 1 year out and now live a relatively normalish existence. Not the same, but very good considering. Stay in a mental state of gratefulness if possible. Stay HYDRATED!!! Most important of all by far! Nutrition second most important. If your doc recommends a Peg Tube, I say GET IT! I could go on and on. Well talk girlfriend! I am praying for you!!!

Your friend,

Nancy

 

Hi Nancy

Hi Nancy

PLEASE give me tips tips and more tips!!!! Fear is surely my enemy right now and the fear of the 35 days ahead of me. So if you have words of wisdom to get me through I’m all ears for sure and appreciate the help more then you can know!!! Truly feeling blessed to have found this site and all it encompasses. I do have a great care team I’m here in CT and I’m going to Smilow Cancer Center at Yale they have a unit just for head and neck cancer. The feeding tube won’t be put in until they deem its needed. And thankfully treatment will be just on the left side, so I am blessed for that. As for that mask day one I pray I make it through with no melt down!!!  Looking froward to hearing from you!!!

God Bless and thank you

Charlene

Charmit

MGC said:

HPV

Hi and welcome to this great site.

I had a similar diagnosis. Age 49, HPV stage 3/4 started from tonsil and grew into BOT. Also had multiple lymph nodes involved from tumor site all the way down to shoulder. Never did any surgery though as doctors showed me study saying results were the same either way. No tonsil removal and no neck dissection. I did have 6 weeks radiation and chemo. Never got sick from chemo because they have counter measures/meds for all that now days. The chemo did screw my hearing up bigtime unfortunately. So its now 8 years later I am 57 happy and healthy and NED. Unfortunately I have rare side effect of severe tongue atrophy on primary side but that’s better than the alternative.

Eat well and be positive and make good choices and you will make it through this.

Good luck

Mark

Hi Mark

Hi Mark

Thanks for the words of wisdom and so happy your cancer free. I’m still in the overwhelmed stage, been a long two months and one and half more to go. Trying to learn all I can to get me through this with the least pain and affects but I know that’s not going to happen so essentially siking myself up for one hell of a ride.

God Bless and thank you

Charlene

Charmit

Dean54 said:

Welcome Charmit

Your diagnosis sounds alike like mine and I can't hardly believe they didn't take out both tonsils at the same time while they were in there.

I went thru 33 rad. and 3 chemos and made it thru without using the PEG tube, had very little mouth discomfort,and practially no skin issues. I did get somewhat nauseated from the chemo but if you get on the right meds that will work for you, it's not that bad.

I'd say I lost a little bit of hearing and have some tinnitus from it, not bad over all. It did leave me with reduced saliva and very little taste so it's makes eating rather difficult. No food is enjoyable so it definitely changes your outlook to "eat to live" not the other way around.

5 months out, I feel completely back to normal except for the eating part, some excessive mucous, and dry mouth. I also have to be careful swallowing as it wants to go down the wrong pipe.

Looking ahead, it does seem like a pretty daunting task to get thru but you can do it and it goes by pretty fast. We will be here for you with any questions you might have.

Hi Dean

Hi Dean

Oh the removal of both tonsils at different times was a huge thing for me and my family we all asked when my ENT was to take the left one why not take the right. His reply he doesn’t think the right was affected and he was correct, but PET scan right tonsil lite it so month later out it came. And recovery at 48 for tonsillectomy is horrid now times two. Needless to say long two month with 3 surgeries behind me.

And now facing the treatment, I’m so glad your treatment went pretty well for you and glad your doing well today. I’m scared of the radiation and all it entails from mask which scares the hell out of me to the side affects. The list is long and I know not all get all or just some. I’m hoping that seeing treatment is just being done on the left side it will help with all the side affects. When the 30th comes they may need to knock me out to get me on that table no lie I will be shaking like a leaf!! 

‘Any advice, word of wisdom you can offer please share and I thank you in advance for sure. 

‘God Bless and thank you

Charlene

Billie67

Charmit said:

Hi Billie sounds like we do

Hi Billie sounds like we do have lots in common and yes the mask scared the life out of me. When the simulation was over I was shaking from the inside and couldn’t get to my purse quick enough to grab my Ativan!! Then ever since I’ve been thinking how do I make it through in that mask in that room all alone, I want someone to hold my hand....big baby yes lol

Then all the side affects why I think I’m going to get all of them, again mind running wild. Feels like a nightmare and I want to wake up, however hearing from everyone on here is helping. Cause if y’all made it through I can too. Just the first day and I’m sure many after will be tough but I’m going to get it done and hope the 35 days fly by so this can be behind me as it is you!! 

‘They are holding off on the feeding tube for me as well but I have low tolerance for pain. I am going to do what needs to get done to get me through. I only need one side treated and was told side affects are less, not sure how true and we shall see very soon. Another worry being weak, my girl graduates the week after treatment ends and I can’t nor will I miss that day!! 

God Bless you and thanks 

Charlene 

I hear ya

We will be here the whole time for any questions you might have! I remember my son was playing football and was on the homecoming court. It was the homecoming game and he needed me to be his escort onto the field. I wasn’t going to miss it for anything and I didn’t! I was tired, weak, underweig and super cold but I was there! This was shortly after treatment for me too. You can and will do what you need to do. It’s what we moms do!!! 

Not sure what area you live, but it will be super helpful to have people near by who can take you to your appointments. I’ve often thought about becoming a “friend” to those going thru treatment and just offering to drive people to their appointments. 

SuzJ

First off

Stop, breathe, just, breathe.

Stop consulting Dr Google, its the scariest Dr on the planet.

 

Basics - YOU can do this, you have an 18 yr old daughter who will amaze you. She wiill be your rock, as my son was mine. You have to be strong, and you have to have a great attitude going in, because, you CAN do this.

Mask, after a time or 2, it wont bother you, just shut your eyes, think of something else, somewhere else, count the clicks, count sheep, dont think about the mask.

You will lose some hair, usually from ears down around the back - and it will thin a bit - make sure to wear a sunhat and sunblock

Chemo - make sure you take the anti nausea meds before and after, and if you dont want a PEG (as I didnt) stock up on a drink you can deal with, ensure smelt awful to me - strawberry boost was my go to. (still is) stock up on soup that'll slide down easy - stay away from anything citrus.

You can and will do this, stop panicing, do it one day at a time. Buy a little daily date book (I used it as well as my calendar on my phone) _ found one in Offce something? I didnt want a religious, or serious one, the front of mine is silvered, kinda reflective, and says, "Hello Gorgeous" - its what you need when you feel like death warmed over

 

As others said, I don't get why they only took one tonsil? thats dumb. Think of all the kids that routinely get their tonsils removed? (I was 23, omg it hurt)

Ask away, we have the answers.

Dean54

Charlene the anticipation is the worst

And, I was nervous also but it really isn't as bad as you think and after the first round you will already be used to it. Just close your eyes and just concentrate on the fact you are doing this to help you get better. Mine was HPV positive also and to be honest, I didn't get a whole lot of side effects until everything was over and they aren't that bad execpt for the lack of taste.

I did take a swig of the pain meds every evening whether I needed it or not as to me it's the best anti-depressant there is but getting off of them is another matter. Plus I damn near exercised everyday thru the whole thing which I thinked helped a lot.

If your ins. will pay for it, get some Liquid Hope nutritional drinks. Nasty but full of good stuff compared to that sugary Ensure.

Personally, I thought the tonsilectomy was worse than the radiation by far and you have already been thru that...TWICE.

Actually, if it weren't for the few side effects that I have now, I wouldn't even know I had been thru anything. Phsically I feel just like before any of it started.

There are lots of fine poeple to offer great advice and you can and will get thru this and remember this type of cancer is VERY curable! Hang in dear.

Charmit

Billie67 said:

I hear ya

We will be here the whole time for any questions you might have! I remember my son was playing football and was on the homecoming court. It was the homecoming game and he needed me to be his escort onto the field. I wasn’t going to miss it for anything and I didn’t! I was tired, weak, underweig and super cold but I was there! This was shortly after treatment for me too. You can and will do what you need to do. It’s what we moms do!!! 

Not sure what area you live, but it will be super helpful to have people near by who can take you to your appointments. I’ve often thought about becoming a “friend” to those going thru treatment and just offering to drive people to their appointments. 

Yes we moms sure do rally for

Yes we moms sure do rally for our children. She came to me and asked if I would be tbere and I said absolutely I would be!! Don’t want her worrying, and I have so many family members and friends who offered rides. It’s about a 45 min ride but I know my mom would be taking me daily cause again that’s what moms do. And my husband is able to misss work to take me the days she can’t. I am sure you mentioned it but how long ago was your treatment? What was the worst part of it and I did you cope??

OKCnative

Like others have said, just

Like others have said, just take some deep breathes. Most everything you probably read online does not apply to you. I know, I Googled my diagnosis and became terrified. Only to later realize the terror was for nothing. I'm 6-months post treatment and I'm back to 100% (minus a bit of saliva). I'm back at the gym boxing, I barely even slowed down work during my treatment and my taste and swallowing is as good as always - just had the best fried onion cheese burger before responding to your post.

I was 47 when diagnosed with stage 3 base of tongue SCC with neck node involvement. No surgery, no chemo port, no feeding tube, no throwing up, no pain meds (did do THC for anxiety, loss of appetite and nausea). That said, it was a hell of a treatment (35 rads and 3 big doses of chemo) I survived on liquids only for weeks, fatigue that was grueling, mucous that i thought would never stop, neuropathy, lymphedema, spitting up blood, lost 40+ pounds and so much more. BUT, it's all reversed now and I credit my positive outlook and the fact I tried not to disrupt my normal routine and I stayed as active as humanly possible.

I looked at the mask and radiation as 'nap time.' They'd play some soothing music and I'd drift off to sleep for a bit.

Embrace your HPV+ status - it means you have the best chance ever of getting rid of the cancer forever!

Good luck and feel free to message me if you need to.

Charmit

SuzJ said:

First off

Stop, breathe, just, breathe.

Stop consulting Dr Google, its the scariest Dr on the planet.

 

Basics - YOU can do this, you have an 18 yr old daughter who will amaze you. She wiill be your rock, as my son was mine. You have to be strong, and you have to have a great attitude going in, because, you CAN do this.

Mask, after a time or 2, it wont bother you, just shut your eyes, think of something else, somewhere else, count the clicks, count sheep, dont think about the mask.

You will lose some hair, usually from ears down around the back - and it will thin a bit - make sure to wear a sunhat and sunblock

Chemo - make sure you take the anti nausea meds before and after, and if you dont want a PEG (as I didnt) stock up on a drink you can deal with, ensure smelt awful to me - strawberry boost was my go to. (still is) stock up on soup that'll slide down easy - stay away from anything citrus.

You can and will do this, stop panicing, do it one day at a time. Buy a little daily date book (I used it as well as my calendar on my phone) _ found one in Offce something? I didnt want a religious, or serious one, the front of mine is silvered, kinda reflective, and says, "Hello Gorgeous" - its what you need when you feel like death warmed over

 

As others said, I don't get why they only took one tonsil? thats dumb. Think of all the kids that routinely get their tonsils removed? (I was 23, omg it hurt)

Ask away, we have the answers.

Crazy question in the scheme

Crazy question in the scheme of things and I feel stupid asking but the loosing of the hair does it grow back?? I am not a vain person but we all love our hair!! Is it better if we pull it back and away from the line of treatment? I have the notebook already but my isn’t has cool as hello gorgeous Lol I think I need a new one lol 

My husband brought me the Nurti Bullet so hoping to find some good recipes for drinks. I don’t want the PEG so going to do my best to avoid but in the end if I need it I will suck it up and get. 

‘The tonsil thing was a mess a think my ENT dropped the ball on that one but he is a great doctor and I can’t fault him. Just sucks I had to endure that two times after having my neck dissected. I went from no surgeries to having three in less then two months.

The mask I contacted my doctor and asked if I can take two Ativan that day but haven’t heard back seeing it’s the weekend. Or maybe they can prescribe something stronger. My fear is laying in that room with the dreadful mask on all alone. I’m a hold hands type person when I’m scared. But maybe they can play me some country music loudly lol 

My questions now are simple how does one get through this, even if it’s one side for me I wonder if the side affects will be not as strong....time will only tell.....

Charmit

OKCnative said:

Like others have said, just

Like others have said, just take some deep breathes. Most everything you probably read online does not apply to you. I know, I Googled my diagnosis and became terrified. Only to later realize the terror was for nothing. I'm 6-months post treatment and I'm back to 100% (minus a bit of saliva). I'm back at the gym boxing, I barely even slowed down work during my treatment and my taste and swallowing is as good as always - just had the best fried onion cheese burger before responding to your post.

I was 47 when diagnosed with stage 3 base of tongue SCC with neck node involvement. No surgery, no chemo port, no feeding tube, no throwing up, no pain meds (did do THC for anxiety, loss of appetite and nausea). That said, it was a hell of a treatment (35 rads and 3 big doses of chemo) I survived on liquids only for weeks, fatigue that was grueling, mucous that i thought would never stop, neuropathy, lymphedema, spitting up blood, lost 40+ pounds and so much more. BUT, it's all reversed now and I credit my positive outlook and the fact I tried not to disrupt my normal routine and I stayed as active as humanly possible.

I looked at the mask and radiation as 'nap time.' They'd play some soothing music and I'd drift off to sleep for a bit.

Embrace your HPV+ status - it means you have the best chance ever of getting rid of the cancer forever!

Good luck and feel free to message me if you need to.

Cheeseburger....I told my

Cheeseburger....I told my husband today we are hitting the Red Robbin for just that with a side of onion rings before I start my treatment lol. It is so helpful to hear all your stories and how your all doing amazing thank God and I pray I have the same luck as you all. I have to muster all I have inside and just get it rolling. My family and friends are amazing the best support team ever. Even Facebook old classmates from long ago wish me well, message me and pray. I’m blessed minus the cancer but as the saying goes god doesn’t give us what we can’t handle. I’m going to do my best with eating and drinking, but not going to lie pain I have a low tolerance for pain. How I had a child is beyond me lol 

But like everyone tells me one day at a time and sometimes it’s one minute at a time. I went for a hike today to clear my head and it helped. One week to go to do all I love and eat all I love to eat, seeing they keep telling me to bulk up....I’m trying. 

‘Radiation day if I can’t have a hand to hold I hope the crank my county music and I will in my mind be at the beach. Ocean, sand and breeze....block it all out!! 

MarineE5

Radiation and Music

Charmit, 

I am sorry you have joined the club no one wants to join but I am glad you found this site as there are many knowledgeable people here to walk along with you as you travel this road. Many have given you sound advice already. 

The Tech's are very helpful and will play any type of music while you are receiving your Radiation treatments, or you can actually bring your own CD's and they will play them for you. I am pretty good with tight places, etc. But for some reason, the first day of treatment made me uncomfortable. I was fine during the first "Mask" fitting, but the actual treatment and Mask got to me.

The Tech's noticed it and stated that the 2nd treatment would go better as they made slits for my mouth, eye lids and nostrils. Once these areas were opened just the slightest, I was much better. It didn't hamper the structure and strength of the Mask but helped me mentally. I was able to do all the rest of the treatments without any issues. 

I just wanted to mention this to you as you are fucused on the Mask and I can understand that. As mentioned above, ask your questions and someone will get a reply back to you. And yes, Dr. Google is not always the best source of information because a lot of it is outdated. Lean on those that have traveled or are traveling the road you are now. 

My Best to You and Everyone Here

Charmit

MarineE5 said:

Radiation and Music

Charmit, 

I am sorry you have joined the club no one wants to join but I am glad you found this site as there are many knowledgeable people here to walk along with you as you travel this road. Many have given you sound advice already. 

The Tech's are very helpful and will play any type of music while you are receiving your Radiation treatments, or you can actually bring your own CD's and they will play them for you. I am pretty good with tight places, etc. But for some reason, the first day of treatment made me uncomfortable. I was fine during the first "Mask" fitting, but the actual treatment and Mask got to me.

The Tech's noticed it and stated that the 2nd treatment would go better as they made slits for my mouth, eye lids and nostrils. Once these areas were opened just the slightest, I was much better. It didn't hamper the structure and strength of the Mask but helped me mentally. I was able to do all the rest of the treatments without any issues. 

I just wanted to mention this to you as you are fucused on the Mask and I can understand that. As mentioned above, ask your questions and someone will get a reply back to you. And yes, Dr. Google is not always the best source of information because a lot of it is outdated. Lean on those that have traveled or are traveling the road you are now. 

My Best to You and Everyone Here

Thank you!! I too am good

Thank you!! I too am good with small spaces the not moving and sort of be confined freaks me out a bit. You all are so amazing truly I feel less stressed since last night when I posted here. I’m glad your health is good and no more cancer!! I keep thinking Charlene this time next year this will all be behind you and I to can come back here an offer advice to someone else as you all are helping me. Thats my goal to best this and be here to help someone. So many emotions I cry, I laugh and I cry some more. But in the end this is my journey and I must walk it. Friday night I googled things and sat here sobbing say hell no cant do I won’t do it. Burns so bad on people’s necks, mouth sores like they were burns from a match...I’m not allowed to google per family so blessed I found y’all. 

Bobh63

One Day at a Time

Your getting good advice, I've read some of the responses. Remember that each person is different and how you will react to chemo and rad will be unique to you. Deal with each issue as they come one at a time and one day at a time.

I did not do meds during rad. The first 3-4 were hard but my tricks were music (they will play it for you in the room), talking to myself, having the technition talk to me (have them tell you a status every 1.5 minutes). I was usually bolted in for about 8 min. So when they would talk me through it, it was good. After a few I started to get use to the mask. I even started to tell myself that the mask was good, it was helping me by holding me so I would not move for targeting. You will find your way with the mask, but what I have found with everthing is you have to be proactive and work at it.

I had a feeding tube installed. I believe it saved my life. I lost 30 lbs but without the tube I would have lost double that. I did NOTHING through my throat for 2 months. Believe it or not it was not about pain, it was about taste and gag reflex. Taste was horride. I developed a gag reflex from the rad that was bad and bad bouts of hiccups from the chemo. BUT, these were short periods. And, you will be different. So take them one at at time.

There are many other things I went through and a couple of things I'm still dealing with. I'm post treatment now almost 4 months and the body does heal. I'm living a normal life but deal with a couple of "new normals" that I hope will continue to heal.

Good luck. You can do this. Even when you have those days that you think you can't (I had a few) you can! Do you have a support system in place, family, friends?