Hi Ian

my husband has larynx cancer an just finished 6 weeks radiotherapy on fri it’s been long six weeks an he has done really well as when he first started they told us the downs I wrote him off week two but he still got his voice just about an kept his weight keep on top of your pain his neck is really sore now and got sore throat but they said next two weeks will be tough good luck with your treatment

mansy steve

hi mandy just git to hang on to things willgetbbetter I am 10 weeks post radio,eatingbstill difficukybthank god for high calories drinks but little by little am eating and regaining strength 

I have written a blog if yiu want to read the ups  and down s feel free to ask any questions between us we all help each other

www.radioactiveraz.wordpress.com

hazel 

RHi Ian

on Monday I am 15 weeks post radiotherapy never thought recovery would take so long but slowly slowly.

tips for dry mouth my dentist prescribed the following they do help 

biotene dry mouth gel liberally rub onto gums n teeth before each nap  apparently k y jelly also works but I ain’t asking for that. Lol

A.S salivia sprays I carry one with me one in bedroom use on a night niw when I wake I can get away sipping water thrn dprsy in to mouth gives me st least 2 hour s solid sleep.

from boots dentist can’t prescribevit biotene mouthwash I have found a even gentler one online bioxtra dry I use that again before nap time.

tastebuds bitter sweet for me I never lost them which can atvthecstsrt make it harder as I had taste but just couldn’t get things I like down my throat.

around yourvstage I started on the following 

knorr chickennoodle soup once cooked strained the noodles out then a matter of finding the right heat for your mouth.

baxters consommé also helped but  home made soups I just couldn’t eat still struggle with.

big breakthrough was the inside of a mini pork pie senesce of achievement was great  

congratulations on curly Wurley it’s the little things that give us a lift.

i have now been 36 hours oramorph free touch wood am ok thus morning substitute d a 30 mg co codomol with a 8 mg so in 26 days I should be in 8 mg tablets then work down to paracetamols.

rnjoy seekend

hazel

l

Im just starting to get the dry mouth problems after 9 sessions, I cant imagine what i`ll be like in a few weeks time, not feeling sorry for myself Im just a bad patient.

Dave

You are doing great Hazel and its good to have someone ahead of the game.

and lol..yup....I aint asking for ky jelly from chemist..."its for my mouth"..." yup sure it is " ;lol.

nah I'll leave that one and just keep drinking plenty water.

I'll see how I get on over weekend with my wee tubs of calaries, but I guess its inspiring to get a good report card at this stage and might experiment a little to see what  i an tolerate now I have been told too, even although I dont particularily enjoy.

Have a great weekend and I still reocmmend retail therapy !

Dave

Dont see yourself as a bad pateient, its one of these things and unfortunate side effect. Only advice I would give over and oboive Hazel's is to drink as much water as you can. I try and drink at least 3-4 litres a day. Sometimes you cant be bothered but force it a little if you have to. I was told that it definately helps the healing and recovery process.

i wish you well

kind regards

ian

Hi Ian

Its great to hear youre still progressing well and as you rightly say its a slow process. My hubby is now 3 years post diagnosis and 2 1/2 years post treatment end and things do get better. At the end of the chemoradiation he could taste nothing - and I mean absolutely nothing which made eating so difficult. He can now taste most things though they often taste different to before. He had a real sweet tooth but now prefers savoury especially salty things. He can swallow anything even crusty baguette! So long as he has water but cold foods like ice cream switch his taste buds off completely. The dry mouth gas improved considerably but he still had decaf tea and coffee as the tanin and caffeine seemed to make tge dryness worse.

Keep olidding on - trial and error ! 

Good luck and best wishes

Emma xx

Hi Emma,

Thank you for your kind words and encouragement.

Im so pleased to hear progress regarding your husband and its inspiring to know that as you say, keep plodding on and it does get better and although some permanemt slight adjustments, still well worth it.

Have a great weekend

kind regards

ian

Hi Ian

deffo if  I can keep drinking the water. Plus remember what yiu can’t tolerate one day the next day or week you will be able to somits trial and error butbkeep going in the right direction

Happy retail therapy ,hope yiu are buying useful things !!!!

hazel 

Hi

No you aren’t a bad patient ,just remember  everyone of us is different if you can drink water keep drinking it really does help. Unfortunately I couldn’t drink it apart from peppermint tea for over 2 monthes it made my mouth like chalk , I could manage soda water which was ok but washing food down with it was horrid. 

Get as many dry mouth products as your dr dentist and nurse will prescribe , a good tip is get them all to prescribe something if at first they dont work keep,them as I did and eventually you will be able to use them. To start with the saliva spray smell of fish so I refused to put jn my mouth but now I use it and it gives me ok broken sleep but no longer am I awake for hours at a rime

keep plodding on if you haven’t read my blog it’s www.radioactiveraz.wordpress.com more tips and moans on there if yiunhave read it thank you.

remember next week start if anither week nearer to finishing 

hazel 

Thanks for the words of encouragement I`ll up my water intake, Im doing the mouthwashes after eating and every two hours as I was told by the nurses, Iv got a horrible taste all the time now and food just doesent appeal... from a food lover thats quite a statement. Iv got a white coating around my Uvula (dangly thing) and its swollen..hope its not thrush..definatley feeling sorry for myself now..:)

Dave 

Hi Dave

umm could well ne thrush it’s quite common no matter how religious we are at mouth cleaning the tongue ceases to donits job until u can’t use it we have no idea how much work it does do.

ive had oral thrush on and iff all the way through and my mouth accordingbtindrs is one if the cleanest they had seen.

i bought iff Amazon 3 toothbrushes curaprox 5400 soft bristles they really do work think about £10 for 3 .if you find the duraphat toothpaste too strong which I did changebti mildest sensodeyne you can get.

re thrush keep an eye on it ask in Monday they should prescribe Nystatin for you , thrush can make it painful to eat and drink which is the last thing you want.

i am 15 weeks post radio and still having some issues but lunchbtodaybwas a bacon sandwich in a panini bliss ,there’s is light at the end if the tunnel.

just don’t suffer in silence see the radiotherapy team in Monday. Are you having chemo as well ? How many mire radiotherapy I had 35 sessions 

Try toneat as it’s possible thatbin a few weeks time yiu can’t ans yiu need to keep your weight in

take care Hazel

Hi Hazel im on the duraphat toothpaste and soft brushes it seems fine for me, Im having 30 Radio sessions and have 20 left to go , no chemo as I caught it early, i`ll mention my problems on monday or Iv got a hotline number  if  needed too. I know about keeping my weight up in fact I put some on in the first week to get ahead of the inivitable loss.

This bloody desease consumes  your every waking hour and half the night, sorry for the moaning Im feeling miserable today but im grateful for the help and treatment there are people 10 times worse than me.

Dave

Hi Hazel im on the duraphat toothpaste and soft brushes it seems fine for me, Im having 30 Radio sessions and have 20 left to go , no chemo as I caught it early, i`ll mention my problems on monday or Iv got a hotline number  if  needed too. I know about keeping my weight up in fact I put some on in the first week to get ahead of the inivitable loss.

This bloody desease consumes  your every waking hour and half the night, sorry for the moaning Im feeling miserable today but im grateful for the help and treatment there are people 10 times worse than me.

Dave

Hi Dave 

it certainky does itsbone of my favourite sayings when something else pops up. U are entiteles to feel how u arrvfeeling we didn’t ask for it .

yiu May have told me where in uk are you ?

i only had 2 chemos which were enough ,butbjust keep remembering lightbat the end if the tunnel

shout out if yiuneed anything or just want to rant

hazel

Thanks Hazel im from Manchester and being treated at Christies so Im in safe hands.

Dave

dare I ask United or The others. ! We are united although from Yorkshire I am allowed as mum n dad were from Hyde and Denton .

judt watching  game now. Yes in good hands at Christie’s 

keep in touch 

hazel

Hazel Im red born and bred. :)

Had trouble swallowing today so I contacted Christies.. to cut a long story Im on Oramorph and some drops for Thrush.

Dave

hi Dave 

wontbxomment kn resukt

oramorph is ok I was on it for 3 months just weaned my self off ut this last 3 weeks but omg if u need it it certainky help save ok u may need naps but sleep is good . Keep up with the thrush drops as well as they take a few days to start working and finish the course 

glad I got sorted 

hazel

Thanks Hazel always good to get the heads up what to expect, I know we are on different tailored treatments but good to hear all the same.

Shocking result today but not surprised.

Dave

Hi Hazel,

ah well just to share with you my friend that for the first time today,  I have managed a little food.

2 fresh thin frankfurters and little heinz sauce to help go down. First of something hot and solid that I have tolerated for some considerable time now and hope the baby steps of some progression

So chuffed as not great but I did manage as little worried about weight loss so these are quite fattening so should help.

So i now have a menu that i can tolerate of think frankfurters and mini curl wurlys for dessert.

Who and hoooo....a la cart or what!

Hope you are still doing well and enjoying your pies !

kind regards

ian

Hi Ian

bravo what a great start. But one thing is missing a starter !,,, no Michelin award sorry. 

I kniw the feeling of elation ,when I had the inside of a m n s pork pie you would have though I had won the lottery. !

had some good news one of the girls who I got to know early in the process had her scan mri yesterday n consultant later who although couldn’t give her a full clearance until due process has been done was very confident the cancer had gone. She like us had been unable to eat for weeks and during treatment was sick up to 8 times a day so anither good great prognosis. 

Keep up the eatng ok it’s repetitive but any food is better than constant shakes .what are u like with eggs ? Poached are easy to slip down on a bed of *** white toast spread with lashings of lurpack I find toast easier than bread on its own.  Dont get down if one day frankfurter s seem off it can happen just find a replacement then try them a few days later  strange but the processed meats are much easier ok nit first choice normal but at thus stage take anythjng  

corned beef hash n Yorkshire puddings are another good one  

have u tried plain vanilla ice cream ? J couldn’t eat ut for a while then all of a sudden I can it opens up the possibility of buns n cakes just put on top let it melt makes it easier to slip down.

i am ok steak pie chips only a few n beans tonight  followed by a chocolate eclair  notbtried one recently

like u my weight dropped but has remained stable now for last few weeks not increasing but not lost any more  off oramorph totally n started reducing co codomol 30 mg to 8 mg doing it slowly replacing one tablet every 3 days

kerp in touch

hazel

Hi Dave

sho are we going to get then ? 

Ole gunner or Keano

On a serious note how are you doing how’s the thrush ? And treatments doing it’s not easy but there is light at the end of the tunnel judtvremember that  see my posting to ian re another success story

hazel

Hi Hazel I think Ole as a caretaker with Carrick and maybe Poch in the summer?

Saw my doc today its not thrush..the whole white stuff is Ulceration, he said its unusual to have this at early week three and im sensitive to radiotherapy, I can up the Oramorph if I cant swallow and he thinks Im going to have problems. He`s putting me on drink supplements from tomorrow. Good news is my weight is stable but I cant think why. 

hanging in there..Dave