mask and on going treatment. Aug 23 2013

TracyLynn72 said:

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! 

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.

phrannie51 said:

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.  

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....

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

 

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 said:

Love the dolls!!

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

p

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.

Hummingbird3 said:

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 said:

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

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.