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 

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 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

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 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

Hi Dave

yiu hsve ny deepest I had that as well another name is mucositis it is painful I had ut combined with thrush .the seinks are to ensure that you get nutrition down you. I was on fresubin to start with followed by Ensure and at week 4 ended  up with the feeding tube .its bearable I was afraid if it to be honest but it did it’s job when it became too painful to eat and drink the drinks my weight held steady right up to last week if radiotherapy.they don’t want you to loose weight as the mask won’t for and cost wise to make a new one i was to,s £7k. How true I don’t know .

top tip if u have the tube ask for a drink of water take a straw with yiu and when they start drink and swallow it goes down easier my first one was in 21 days then ha s to have another one on a plus side you’re medication can go down it as well .it does take a worry of you am nit saying that’s what will happen but don’t be afraid if it does  I am living proof that it works ,it frees u from the worry if eating you can still concentrate on drinking as calories are important at this stage answer for recovery.

read my blog if u haven’t already 

ps I ahted the chocolate flavours couldn’t stomach them strawberry banana vanilla were palatable answer if u ddind them too thick get some complan and water them down more Calabria’s and more hydration 

www.radioactiveraz..wordpress.com

shout out if u need to know anything. And don’t worry

hazel 

Thanks Hazel I dont fancy the tube at all but If I have to I will of course, doc says I can lose 10% body weight before that will be considered though, my wife Julie is trying to get food into me at every opportunity :)

Good news is Iv not felt sick for a few days, If this Ulceration dies down a bit i`ll be well chuffed.

Dave

HinDabe n Julie

eat what u can while u can keep on top of teeth cleaning and gargle with warm salt water.i lost 18 lb I. Total but know if people who lost over 3 stone .

keep going nearly half way there , recovery is a long slow process but we all getbthere in the end. I’ve just had a few chocolate s which when I was at your stage never thought I would eat chocolate again

take care

hazel