mask and on going treatment. Aug 23 2013

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Comments

  • jackflash22
    jackflash22 Member Posts: 524 Member

    Ah, the mask

    Mine was very tight at first and it pressed on my scars a little, too.  I lost so much weight during rads that it got looser as weeks went on.  Everyone reacts so differently to treatment...my friend just finished 33 treatments and still has some taste and no saliva issues at all.  I did 30 and had a rough time.  It's good that you are getting the PEG now.  I got so sick I had to have it put in during treatments.  It truly is no big deal to have it put in (or taken out).  I was very nervous about it, but it was totally fine :)  I had just started eating well (after surgery) when I started my rads.  It was like starting all over, but I'm thankful to have made it through, to be well and on the other side.  You'll get there too. I would let them snap me down to that table and start praying for everyone taking care of me.  I got to know them by name and would pray for them one at a time.  Before long, my treatment was done before I was finished with my prayers!  :)  This site is so wonderful and the people on here are very caring!  I'm 2 months out of treatment and doing quite well! 

    that dreaded mask

    Thanks for the encouragement your treatment sounds exactly like mine. You've come through it so will I. I have an over active imagination, I think 'what if theres a fire, what if theres a bomb scare, will they save their lives and leave me here (told you I'm over imaginative) I can work myself upinto a panic. I took note when she fastened me down to take measurements and I think maybe I could raise my arms enough to undo the clips. No, really I'll be OK on the day. My daughter said she could take me the first and last week between her shifts. She's my 'rock' she was with me all the way through the surgery 2 weeks. I know she would take time off work but shes a widow and needs her job. My granddaughter came with me to the 'mask' and ct scan she was allowed to stay and watch thats why I had a photo of me in the mask we had a laugh afterwards seeing the pics.

  • jackflash22
    jackflash22 Member Posts: 524 Member

    happy for u that the mask

    happy for u that the mask fitting is over and u r now ready 2 start tx.  i have to agree w/john, the recovery/healing from tx is going to take longer than you were told.  i finished my tx on 10/22/09 but could not eat for Thxgvng or Christmas.  i think it was more like feb. b4 i could eat anything.  i don't remember how long i suffered w/dry mouth.  i only had rad so i can't comment on chemo side effects.  i wish u the very best and as few side effects as possible.  keep us posted on your progress. 

    dj

    rad

    I have rad only and I will keep you posted by know if you have been reading my postings you will guess I'm from the UK and can talk a hind leg off a donkey, when I couldn't talk (had a trache in my throat) I used a white board and pen still could yak....and nag. My partner asked if I could get the nagging bit of my tongue cut out I haven't nagged once since I've been home so it must have worked. He doesn't go out much or socialise but hes really good at looking after me and he's always there for me (except at the hospital he has a phobia of hospitals) he's cooking dinner right now...Sunday roast. (Blitzed Sunday roast for me)

  • jackflash22
    jackflash22 Member Posts: 524 Member

    Glad to hear

    that the anticipation of getting the mask was worse than the reality....phew.   Looks like your "plan" is about to unfold....for the time being eat as much as you can, of anything you want.....having a few extra pounds at the beginning of treatment is a good thing.

    Getting the PEG tube is no big deal....about 40 minutes beginning to end.  Expect some cramping the first couple of days....but after that my biggest gripe was inconvenience....like where to tuck the darn thing. Laughing 

    John (Skiffen) calls the days of radiation....Groundhog Days....just like the movie.....every day the same....it becomes a routine, and will pass faster than you can imagine at this time, looking ahead....but once you've entered treatment mode, time flys by.

    Once you get into treatment....keep this site close to you.  The folks here are SO knowledgable....and supportive.  It's the details about treatment that I needed help with....from mouth sores to constipation....these folks have a lot of tricks up their sleeves to make this as doable as possible.

    p

    I was so glad to come across this site I feel as if I know everyone already its like having a penpal. I know everyone doesn't react the same way so I will tell of my experience as it unfolds. Another good thing is you can have a conversation without straining your throat.I'm from the UK but just happened on this site when I put in a key word for neck and  tongue cancer. I guess theres the same for UK but now I'm on this one I feel I have friends. I start the 18th Sep finish about the 29th Oct itdoesn't sound as long saying it that way sept/oct....

  • jackflash22
    jackflash22 Member Posts: 524 Member
    CivilMatt said:

    I am a wordy one today

     

    Jackflash22,

    I am glad the mask fitting went so well.  Did you get eye holes?  We all have plenty of  tips for making radiation treatment as comfortable as possible, from playing music, to wiggling around, to counting, praying and taking Lorazapam, to name a few,  just ask when you are ready.

    We are all over the place with how good or how bad the side effects will be, just know, we all made it through, we all learned how to treat and how to cope and virtually nobody gets all the bad side effects.

    I went through 2 PEGS, but managed to drink one meal a day and had my PEG pulled out at 2 weeks after treatment ended.

    Even though my mouth was in bad shape it never hurt too much. My radiation oncologist once said “your throat and mouth are ablaze, doesn’t it hurt”, it did hurt but was manageable.  I consumed many bottles of Magic Mouth Wash for aid in swallowing and throat, tongue and mouth pain.

    My worst pain was from the neck burn during weeks 6, 7 & 8.  Applying Silver Sulfadiazine Cream made it a nonissue.

    The number one thing I learned from my fellow H&N participants was to keep swallowing and drink lots of water.

    Finally, losing one’s taste buds is unlike anything you’ve ever experienced.  When I was told I might, it did not really register.  Ever so slowly my taste and saliva are returning and I now eat anything I want.

    Get ready, the Superthread has a good list of must haves.

     

    Matt

     

    magic mouthwash

    Matt I'm writing down all these 'magic' things but not sure if I can get it in UK. I have a sister living in Florida maybe she can get some for me and send..where do you get it..Wallgreens?  Hope I follow your footsteps and not get 'too' sore. I can carry pain quite well. I had appendicitis for 3 days and slept standing up over the dining room table, just thought it was food poisoning or something. In the end I drove myself to the docs I was absolutely  rigid. after the op I  was home a day or two later fit as a fiddle. Same with a uterus cancer operation as soon as I was able I was back to work as normal. The uterus came out contained so didn't need any more treatment that was nearly 30 years ago. This one though has slowed me down and got me concerned whether I'm going to beat it I'm older now and less likely to bounce back, I have a lot of family support and I can't let them down, I've got to get through it.

  • jackflash22
    jackflash22 Member Posts: 524 Member
    donfoo said:

    keep reading

    hi,

    Glad you are progressing with your treatment. Just to add that chemo-radiation is quite harsh and it takes a couple months post treatment to get to where you can eat much at all orally. Based on your description, radiation is going to cook most of your oral area including the parotid (salivary) glands and tongue which cause lack of saliva and taste issues.  You may want to be prepared that this holiday season will be like no other. You do have the PEG so you can have your Turkey day meal whipped up and sent down the tube. A few things may go downt the orally but don't expect much. Just trying to give you another perspective on healing. 

    There is lots of experience here so read a lot and ask away when not clear.

    Good luck,

    don

     

    rad

    Hi Donfoo, I'm having just the rad, hoping I wont need any chemo, its bad enough having a crooked mouth without losing my hair.  I'm prepared (I think) whats to come. I've read all the experiences some bad some not so bad. My doc said he wont let me suffer. not sure if he meant he'll help me or put me down ha ha. Wish I could close my eyes open them again and alls finished. Maybe in the future we will do that get put in a trance like sleep then wake up cured. ...

  • phrannie51
    phrannie51 Member Posts: 4,716

    florida

    My sister lives in Melbourne on the Space coast she and I are into into making dolls www.facebook.com/SpaceCoastDollArtists. both hers and my dolls are on there if you want to have a look

    Love the dolls!!

    such interesting faces....and their clothes are wonderful!

    p

  • jackflash22
    jackflash22 Member Posts: 524 Member

    Love the dolls!!

    such interesting faces....and their clothes are wonderful!

    p

    Not cancer but dolls

    So pleased you looked at our site. My favourite dolls to make are trolls and the innkeepers wife, it keeps my feet on the ground, when I go into the sewing room I forget my cancer bug. a hobby is a good way to take your mind off problems. instead of waking up thinking I,ve got to have radiation treatment in 3 weeks I wake to what doll shall I design today. then I remember but get on with the sewing. Maybe I,ll make form of what I think represents a cancer bug and stick pins in it.

  • hwt
    hwt Member Posts: 2,328 Member

    MRI

    Did you have the MRI its like a long tunnel your whole body goes through it's that one I was scared of going into as the only a little space all around you and its quite deafening, your encased in it.

    Eatng

    You had asked for suggestions for stopping the weight loss. Like you, I get tired of eating before I get full. When that happens, I take a break and then try to finish up. My husband got frustrated at the weight he gained until I finally convinced him it was ok to throw the leftovers away. My ONC offered a nutritionist, so that is an option for you. In my case, I was always overweight so I knew how to add calories. Easy for me continues to be baked potato loaded w/butter and sour cream and pancakes loaded w/syrup. I haven't put any of my weight back on but have been much more stable the last 6 months. 

  • Hummingbird3
    Hummingbird3 Member Posts: 67
    Hi there fellow/ future rad buddy

    Hi,  I wanted to respond to your post.  I am 24 sessions in of 34 today.  Only 10 left!  I also found the after that firstl initial session of making "ThE Mask" it got easier.  The unknown waS the hardest.  I wrapped my head around IT mentally rather than it wrappinI me.  I go in there and think of it as a time to relax, be still and pray for people in my life and each of those I've come to know on here.  Before I know it...there in there and I'm good to go.  I took my grandsons 16" Batman to hold when I'm under treatment and it not only helps me to lay still but also he's a little comfort buddy and it reminds me of my sweets three little men and what's protecting me, my Lord!  I hope this might help you as you begin to just find a foknow and know you can do this.  It's really not very long at all. 10-15 minutes max.

    As far as the symptoms, I believe were all told the possibilities and each of experience this differntly. A lot will on depend on our sTate of mind and being.  Going in as healthy and nurished as you can.  I have done everything my rad team has suggested and more.  I bought a little bag, like a garden bag with pockets (yep...im the bag lady now) and keep all my oral and skin care with me everywhere I go so I'm never caught without being able to keep the teeth clean and hydrated and meds I take for oral care that my doc prescribed and so far with only 10 sessions I only have tender gums and the two mouths sores I had week two are gone.  My lips and tip of tongue feel a bit burnEd from time to time but if I use my ointments and rinses theN I can usually get relief pretty quick.  I also am ready as soon as I get in the car from  treatment to apply my skin care.  Eat a lot of proteins and spinach thankfully I like it :-) for healing.  I have lost a small patch of hair at the very base of the neck where to rt exits.  But that's ok...it will grow back!  I have also had a small hiccup with thn ear canal and a bit of a burn on that canal and a lesion on my ear drum, however, with the steroid drops and antibiotic drops they startEd me on it is healing and I am hopeful we can keep it at bay.  It's really not so painful just feels funky lol.  Its from where the RT passes through to exit also.  My skin...actually no change...yes, no change!  I am rigid with my regimen.  I use vitamin e, then apply aloe Vera and then aquaphora.  I clean with stridex pads only that has no alcohol and have not worn amy makeup at all while undergoing treatments...yikes!  But hey, it's working so far so if going elcommando is doing the job then that's ok too.  Definety talk to your doc about your regimen.  Everyone recommenda different things.  They told me to expect a peG tube and maybe even hospilized for fluids but so far so good.  Keep the faith!  But if that happens take it one daiy at a time.

    As you begin your sessions this site will be huge!  Everyone is great to offer support, love pane prayers.  And they are so open to share little things they have learned to make it more tolerable.  So keep tapping in anytime with any questions or concerns.  There's always seems to be someone that can relate to what your experiencing.  I will be keeping you in my prayer journal.  I hope the next few weeks you live let this all go and enjoy each day to the fullest and enjoy some of your favorite foods.  

    hang in there....this too shall pass.  Blessings for a good week ahead!  Christie Phil. 4:13

  • robswife87
    robswife87 Member Posts: 209

    rad

    Hi Donfoo, I'm having just the rad, hoping I wont need any chemo, its bad enough having a crooked mouth without losing my hair.  I'm prepared (I think) whats to come. I've read all the experiences some bad some not so bad. My doc said he wont let me suffer. not sure if he meant he'll help me or put me down ha ha. Wish I could close my eyes open them again and alls finished. Maybe in the future we will do that get put in a trance like sleep then wake up cured. ...

    We asked for drug induced coma

    I thought it was a good idea for anyone having to go through this.

    Have you all go get a good sleep and wake ya up when it's all over. Doctros laughed but I was very serious. I did not want to see my husband suffer like that. 

    But we made it. Almost 3 months out and taste is so so. Saliva still a no go. Although he did drool the other day on his pillow and I told him to stop wasting it. LOL

    Best of luck and keep us informed. Come with questions. Only people who have been here can really tell you what it is like.

    Sandy

  • jackflash22
    jackflash22 Member Posts: 524 Member

    Hi there fellow/ future rad buddy

    Hi,  I wanted to respond to your post.  I am 24 sessions in of 34 today.  Only 10 left!  I also found the after that firstl initial session of making "ThE Mask" it got easier.  The unknown waS the hardest.  I wrapped my head around IT mentally rather than it wrappinI me.  I go in there and think of it as a time to relax, be still and pray for people in my life and each of those I've come to know on here.  Before I know it...there in there and I'm good to go.  I took my grandsons 16" Batman to hold when I'm under treatment and it not only helps me to lay still but also he's a little comfort buddy and it reminds me of my sweets three little men and what's protecting me, my Lord!  I hope this might help you as you begin to just find a foknow and know you can do this.  It's really not very long at all. 10-15 minutes max.

    As far as the symptoms, I believe were all told the possibilities and each of experience this differntly. A lot will on depend on our sTate of mind and being.  Going in as healthy and nurished as you can.  I have done everything my rad team has suggested and more.  I bought a little bag, like a garden bag with pockets (yep...im the bag lady now) and keep all my oral and skin care with me everywhere I go so I'm never caught without being able to keep the teeth clean and hydrated and meds I take for oral care that my doc prescribed and so far with only 10 sessions I only have tender gums and the two mouths sores I had week two are gone.  My lips and tip of tongue feel a bit burnEd from time to time but if I use my ointments and rinses theN I can usually get relief pretty quick.  I also am ready as soon as I get in the car from  treatment to apply my skin care.  Eat a lot of proteins and spinach thankfully I like it :-) for healing.  I have lost a small patch of hair at the very base of the neck where to rt exits.  But that's ok...it will grow back!  I have also had a small hiccup with thn ear canal and a bit of a burn on that canal and a lesion on my ear drum, however, with the steroid drops and antibiotic drops they startEd me on it is healing and I am hopeful we can keep it at bay.  It's really not so painful just feels funky lol.  Its from where the RT passes through to exit also.  My skin...actually no change...yes, no change!  I am rigid with my regimen.  I use vitamin e, then apply aloe Vera and then aquaphora.  I clean with stridex pads only that has no alcohol and have not worn amy makeup at all while undergoing treatments...yikes!  But hey, it's working so far so if going elcommando is doing the job then that's ok too.  Definety talk to your doc about your regimen.  Everyone recommenda different things.  They told me to expect a peG tube and maybe even hospilized for fluids but so far so good.  Keep the faith!  But if that happens take it one daiy at a time.

    As you begin your sessions this site will be huge!  Everyone is great to offer support, love pane prayers.  And they are so open to share little things they have learned to make it more tolerable.  So keep tapping in anytime with any questions or concerns.  There's always seems to be someone that can relate to what your experiencing.  I will be keeping you in my prayer journal.  I hope the next few weeks you live let this all go and enjoy each day to the fullest and enjoy some of your favorite foods.  

    hang in there....this too shall pass.  Blessings for a good week ahead!  Christie Phil. 4:13

    I will take all this good advice on board.  Like to be prepared. I made an appointment to see my dentist tomorrow to see if he has time to fill in a chipped tooth. it wasn,t chipped before my op. I also asked to see the hygienist. I,m being put on a cancellation list as she's so busy for two months.If someone cancels their app,t she will ring me. I still have to see the hospital dentist. I,m still hoping if he see,s my teeth in good nick he will stop following me around in my nightmares with pliers behind his back........

  • Hummingbird3
    Hummingbird3 Member Posts: 67

    I will take all this good advice on board.  Like to be prepared. I made an appointment to see my dentist tomorrow to see if he has time to fill in a chipped tooth. it wasn,t chipped before my op. I also asked to see the hygienist. I,m being put on a cancellation list as she's so busy for two months.If someone cancels their app,t she will ring me. I still have to see the hospital dentist. I,m still hoping if he see,s my teeth in good nick he will stop following me around in my nightmares with pliers behind his back........

    Happy teeth

    Hi...good to hear your seeing you dentist for a pre rad check up.  I know this was great prevention for me to get all cleaned and taken care of prior to beginning rt.  This helps lay some ground work for your oral care and your dentist and rt doc can work on the same page.  Best li luck that you get a good report tomorrow and that you will also be able to get that cleaning!  Keep us posted.

    Christie

  • jackflash22
    jackflash22 Member Posts: 524 Member

    Happy teeth

    Hi...good to hear your seeing you dentist for a pre rad check up.  I know this was great prevention for me to get all cleaned and taken care of prior to beginning rt.  This helps lay some ground work for your oral care and your dentist and rt doc can work on the same page.  Best li luck that you get a good report tomorrow and that you will also be able to get that cleaning!  Keep us posted.

    Christie

    happy teeth

    Had check up today at dentist, Teeth sound. He gave me some toothpaste to use for a while to strengthen teeth, Duraphat 5000ppm Fluoride Toothpaste. Managed to get hygienist app't for tomorrow afternoon for clean and polish. Called into chemist for Omega 3 fish oil, got liquid form as I cant take the huge capsules in the bottles. Tried cod liver oil and malt but it was revolting stuck all around my mouth all clammy had a job to swallow it and it was so fishy. The one I got today is laced with orange and lemon and its OK. Took some of my Manuka +24 honey before going to bed didn't cough once all night so it soothed my tickle and so far today I haven't coughed. I feel I'm doing as much as I can to take me on my journey of radiation. I'm waiting for a call from the dietian to see if they can bring my PEG op forward dont want to start Radiation before op. My scar is fading quite fast, still a small ridge but nothing like when I first had it done. Its my flesh colour not red. I massage Bio oil on my neck each day and pure Aloe Vera at night. I have most of my feeling back in my neck and face, Just one area still completely numb where the cancerous lymph node was removed. ...

    Just had a call from the hospital and my PEG will go in as scheduled but they will still work in my radiation. I shall have an early rad the morning of the op then stay overnight in hospital and get rad from there next day, then go home. I also was told I shall have to turn up at blood department for tests and for weight. I was getting so confused with too much info that she's arranging for me to speak to a specialist again to explain why and exactly where the rad will strike. I'd be pleased for any questions I should ask as my mind is getting very confused to all these different procedures. It's all happened so fast , dianosed May, op 8th July. I seem to be rushed from pillow to post from dentist to docs,  speech  to dietians, and physio which I cant go to now as they have a back log of patients which would bring me to radiation and the specialist said to leave physio until after rads. I'm pleased they are all so efficient and speedy but my head just doesn't hold on to all the information chucked at me... .......If I get a week to myself without being called to to the hospital I'd like to go somewhere for a break  a R and R so to speak.

  • Mikemetz
    Mikemetz Member Posts: 465 Member

    my mask no eye hole, no nose hole and no mouth hole, very tight

    mask

    A thousand words

    Your picture really took the breath away from me.  I was able to have eye holes and a place cut out around my tumor area so it wouldn't press on me.  Being claustrophobic, there is not enough atavin in the world to get me though what you did.  You are much braver than me!.

    Mike

     

  • nick770
    nick770 Member Posts: 195

    happy teeth

    Had check up today at dentist, Teeth sound. He gave me some toothpaste to use for a while to strengthen teeth, Duraphat 5000ppm Fluoride Toothpaste. Managed to get hygienist app't for tomorrow afternoon for clean and polish. Called into chemist for Omega 3 fish oil, got liquid form as I cant take the huge capsules in the bottles. Tried cod liver oil and malt but it was revolting stuck all around my mouth all clammy had a job to swallow it and it was so fishy. The one I got today is laced with orange and lemon and its OK. Took some of my Manuka +24 honey before going to bed didn't cough once all night so it soothed my tickle and so far today I haven't coughed. I feel I'm doing as much as I can to take me on my journey of radiation. I'm waiting for a call from the dietian to see if they can bring my PEG op forward dont want to start Radiation before op. My scar is fading quite fast, still a small ridge but nothing like when I first had it done. Its my flesh colour not red. I massage Bio oil on my neck each day and pure Aloe Vera at night. I have most of my feeling back in my neck and face, Just one area still completely numb where the cancerous lymph node was removed. ...

    Just had a call from the hospital and my PEG will go in as scheduled but they will still work in my radiation. I shall have an early rad the morning of the op then stay overnight in hospital and get rad from there next day, then go home. I also was told I shall have to turn up at blood department for tests and for weight. I was getting so confused with too much info that she's arranging for me to speak to a specialist again to explain why and exactly where the rad will strike. I'd be pleased for any questions I should ask as my mind is getting very confused to all these different procedures. It's all happened so fast , dianosed May, op 8th July. I seem to be rushed from pillow to post from dentist to docs,  speech  to dietians, and physio which I cant go to now as they have a back log of patients which would bring me to radiation and the specialist said to leave physio until after rads. I'm pleased they are all so efficient and speedy but my head just doesn't hold on to all the information chucked at me... .......If I get a week to myself without being called to to the hospital I'd like to go somewhere for a break  a R and R so to speak.

    wishing the best for you!

    wishing the best for you!