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mask and on going treatment. Aug 23 2013

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

I had my mask made and fitted today. Wow... they really do fit tight I couldn't open my mouth more than fraction and it pressed on my neck scar. But after a few minutes it was OK. Didn't care to be fastened down. They CT scanned me in it and put a blue dye in my vein. I had a small tottoo on my chest.  Then they let me go. I start 19th Sept  for 6 weeks treatment. I have the tongue base and both sides of my neck and front of neck so its an all rounder. I,m now to be fitted with a PEG tube but haven't the date yet also to see the dentist. I shall have to start from scratch again with the eating, at the moment I'm eating normal foods and swallowing normally but the technician said for a while I'll have a swollen throat and maybe sores inside my mouth and no saliva or taste buds but they come back after a few weeks when the treatment has finished.  Should be OK for Xmas. Here's hoping

corleone's picture
corleone
Posts: 145
Joined: Jul 2012

I had a different diagnoses (nasopharyngeal carcinoma) and different treatment, but radiation might be the same. I had it for 7 weeks, so you either get a lower dose, or the same total dose, but more intensive with each session. While the recovery phase is very different from person to person, it might take longer than anticipated. The taste and saliva might come back in months, rather than weeks. Also for me the worst time was 1-2 weeks before and 1 week after finishing the radiation. I am 1 year post radiation, and things are great, but saliva is ~40% back, and taste is still off (but I am used with that, I can eat everything (food, of course :-), with the help of some water).

 

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Hi you.....

Hardly anyone has the tat anymore, they're so much precision these days... My mask was so tight, I'd leave with waffle face and forehead everyday.

As for the tech's comments... I'd consider those side effects, very much on the side of a near not reality. I hope I'm wrong, but most everyone has a lot more sever reaction than a swollen throat or a few sores...

The greater reality is that you will more than likely have a very painful throat when it comes to swallowing, hence the PEG. Myself and a few others had no PEG, but we were in the 8 - 10 week range of pretty much liquids calories, Ensure Plus for me, Boost, etc... preceded with the MM to numb the throat a little, and some liquid meds for the after pain.

Pain from the rads is usually most intense about 2-3 weeks in, to around 3- 4 weeks after.

Usually several cans of Ensure and 2-3 glasses of water a few times each day to maintain calories and hydration.

Also, I would swallow a few sliced peaches in light syrup to keep those swallow muscles working..., important so as to keep them working.

As for taste and saliva, again..., more than likely your talking in the months range if not longer... It took me nearly two years to get all taste back, especially sweet.

But I did regain enough within a few months that I could have survived if it never got any better..., which it did.

At two years I had 100% taste, and around 95% saliva, only drying out a little at night during sleep...., I'm now going into my 5th year post Tx..., clean and clear.

Hang tough, prepare for the worst, hope for the best.

John

 

donfoo's picture
donfoo
Posts: 1163
Joined: Dec 2012

Hardly anyone has the tat anymore, they're so much precision these days

Hi John,

FYI - They did give me a tiny tatoo right on the midline on my chest. It was used everyday to get the rough body alignment onto the platform/bed. There were other markings on the mask to enable more fine tuning of the beam.

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

I had one too, for alignment.  It was a sharpie mark with a sticker over it for the most part.  Was so happy to wash that darn thing off :)

donfoo's picture
donfoo
Posts: 1163
Joined: Dec 2012

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

 

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

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. ...

robswife87's picture
robswife87
Posts: 175
Joined: Mar 2013

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

CivilMatt's picture
CivilMatt
Posts: 2859
Joined: May 2012

 

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

 

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

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.

phrannie51's picture
phrannie51
Posts: 3622
Joined: Mar 2012

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

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

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....

debbiejeanne's picture
debbiejeanne
Posts: 2275
Joined: Jan 2010

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

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

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)

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

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! 

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

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.

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

Praying all goes smoothly for you. Remember to stay hydrated and to do swallowing exercises. Those muscles do not come back if you do not use them.

Debbie

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

Good wishes for an uneventful tx. My cancer was of the jaw. I never lost my taste , did not have to deal with mucus and my neck turned brown at the end and peeled but never hurt or broke open. I did have horrific sores on my lips but none in my mouth and allot of fatigue. A few weeks after, I lost about 3 inches of hair at nap of neck, minor in the scheme of things. I had a g-tube which I did use but also continued to eat and drink to keep swallowing. I lost 65 pounds so my suggestion is to put on as much weight as you can now. I think everyone loses some weight. Hindsight, I wish someone had told me about the mouth exercises because i would have done them. I am currently going to Mayo and they said I have moderate trimus (or whatever you call it). Had 3 or 4 bouts of thrush with initial tx, If your tongue burns talk to the doc, they have meds to help.Sorry you have to go thru this but it is doable. 

Candi

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

Its 7 weeks since my neck dissection and tongue cancer removal and I have lost a stone in weight already I'm 10 stone and 5ft 5 which is my weight for my age and height but If I go on losing now I'll be underweight in 3 weeks time when the rad starts have you any tips how to keep your weight. I have protien drinks and started to eat solid things but cant eat much of them takes me for ever chewing and swallowing, my meal has gone cold and I've lost interest. I eat fruit smoothies with extra cream and a dollop of icecream, I did start eating chocs but for some reason choc makes me cough so dont eat it any more. Today Pete is cooking a pork crackling roast with all the t********s, some of which I can eat, (not the pork ) I'll have to blitz that but roast potato and greens I can mash in gravy but its a slow progress. I can manage brown bread sandwiches with loads of butter, mayo and cheese grated up. I still lose weight though. I've had every scan from my neck down to my abdomen and I'm cancer free there so I dont know why I cant stay the same weight as I am now. Maybe drink an extra ensure although my smoothies should have the same calories in them.

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

 mask

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Mine didn't have any  either . It did not come down to my shoulders thought I wish it would have because I lost so much weight before I finished my treatments I could move quite a bit . I had to concentrate and keep telling myself don't move ! It will bother you less and less as you get used to it . I had so much mucus I worried I would get chocked , but realized real soon if I had a problem they would be right there to take it off . I only had to do that one time . Good luck to you with your treatments .

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

Its the mucus that I'm afraid off, I get quite bad musus already and a  tickle and cough, if I think about it it gets worse, I also hate lying on my back when I cough, but I'll get over it as you say. I'm one of these people who always 'what if' then be OK after.  

Mikemetz's picture
Mikemetz
Posts: 334
Joined: Nov 2011

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

 

Roar's picture
Roar
Posts: 237
Joined: Mar 2013

I had the tattoo as well- almost 9 months since my last treatment and all taste has not been restored. Stay positive - ask for a seditive if the mask makes you nervous- I had them cut out the eyes so I felt a little less closterfobic. Do what you have to do to get the cancer out then worry about side effects. But like a few others have stated with me it was more like a case of sun poisoning in my mouth and throat for a short while. Take the pain meds when its time and you will be fine- sta well rested and drink plenty of fluids- keep up the caloric intake. While you can still eat and taste go have your favorite meal and a nice bottle of wine and enjoy. As a matter of fact stuff yourself with all your favorites  as long as you can as you are about to go on the cancer diet and probably lose 20 or 30 pounds- I know I did.

good luck with your battle my fellow warrior- you are about to enter the survivors club

Ralph

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

Thanks for the advice I was going to ask if it would be possible to make a small hole over my mouth dont mind the eyes so much whenever I get in a situation I can't handle I close my eyes even in an over crowded train, our underground trains pack in like sardines you are body to body (you wouldn't know who to slap if you had your bottom pinched ha ha). I did try to open my eyes but then I couldn't shut them my eyelashes stuck on the mesh. I'm told its over very quickly the most time is taken getting you in the correct position then your zapped and out again. I was really nervous of my MRI scan never been near one before. I took 3 diazapan before going for the app't. By the time I was placed in the scanner I was high as a kite. I just lay there perfectly relaxed pretending I was sunbathing in the garden and the first noise was my neighbour mowing the grass then the bang bang noise was that horrid kid next door kicking his football into my fence (as he does when its nice enough to be outside) then theres a gentle noise of an aeroplane high in the sky. ( i told you i was as high as a kite)Then after no time at all I was sliding out and I thought ..finished..sigh of relief, then the blighters basted me with blue dye and shoved me back into the microwave for a few minutes. I think I could do it un-diazapanned next time now I know its not as claustraphobic as I thought, I was in the new wing thats got the state of the arts equiptment, if I opened my eyes I could see the theatre. The light even shines through your eyelids so its like lying in the sun. I wasn't scared of the CT and dental scan. My arms in hospital and since have had so may injections and bags and pipes attached I'm getting very gun-ho about them.  I guess its an adventure, like an army training course you come out the other side a stronger person. I know I wont take life for granted any more. I have pondered whats life all about since becoming a senior, each day you get up do the same routine go to bed ,like groundhog day. I will make sure I will get a life and do things differently when I recover, I've been in a rut for some time. My partner doesn't help he doesn't go outside of the home and garden except once a week to the shop. He wont come on holiday with me or socialise. Good things I have a large family. Once a year all the branches of my family hire a huge house somewhere in the countryside and we all get together for a weekend of fun, the ages range from babies to my ex who is the oldest  (we've always stayed family I get on with his wife and looked after his son years ago when i lived in Cyprus and he and Anne came to stay. Theres about 20 of us every year. We start off with a fancy dress party and then some fun days. I look forward to that but thats only once a year, Pete  (him indoors)wont come. I do go to my sister in Florida for a month each year but this year I have had to cancel the flight its a week after my treatment finishes. Reading back on this I guess  I do have a fun life. I do ramble but thought it might be a change to ramble about my life than always about 'cancer'  You can stuff 'that' up your jacksie, cancer I mean'  must go 'him indoors' has just made me a coffee, will have a couple of ginger biccies with that

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

The CT or PET doesn't bother me, as I can see through the back side of the machine. I did use a little Xanax the first few days of Rads and the mask. But I got used to the routine fairly quickly and no longer needed the Xanax.

 

Like you say, it only takes about 12 - 15 minutes for the treatment, once it starts.

You can usually take music, leave a CD etc... That is a very good time reference for me.. With each song being a few minutes long, Tx is usually over in 4 - 5 songs.

Where in Floirida, that's where I live... Central Florida for me, Lakeland. I have met several from this forum, meeting two more within the next month or so... Duugie, and my bud of several years Dawn (SweetBlood22)...

Best,

John

 

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

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

phrannie51's picture
phrannie51
Posts: 3622
Joined: Mar 2012

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

p

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

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.

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

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.

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

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's picture
Hummingbird3
Posts: 67
Joined: Aug 2013

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

jackflash22's picture
jackflash22
Posts: 225
Joined: Aug 2013

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's picture
Hummingbird3
Posts: 67
Joined: Aug 2013

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's picture
jackflash22
Posts: 225
Joined: Aug 2013

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.

nick770's picture
nick770
Posts: 195
Joined: May 2012

wishing the best for you!

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