Hang in there Laura & Mick,

Its not an easy ride but one of main reasons I posted today was to highlight and give some positives over all this journey and im hoping it does give at least one person something to tag onto in as much that although its rough now, your side effects will slowely reduce on your road to recovery.

You are definately not alone Laura and please keep us posted on how Mick and indeed yourself are progressing. You are important, as are all partners, in all this as well and not just the one diagnosed. Partners support is vital and emma ( newlymarried) posts great mesages as a very supportive partner and with great insites on the journey as well.
I cant comment on the PEG as I never had one fitted, touch wood, but a few others on here have who would be able to help with tips/advice/process etc

its a funny little club here that no one really wanted to join but lots of lovely people who are all willing to contribute and support/care  and share tips with one another and Im sure all find it extremely helpful to come on here and benefit from in many different ways.

kind regards

ian

Hi,I was also fitted with a peg before treatment and said theres no way I'll be using that.I was determined I was going to be fine and tough it out and keep eating.Fat chance.If it wasn't for the peg I'd  probably have wasted away.I'm 16 weeks post radiotherapy and still using it as I'm plagued by thrush and can't eat without pain,even simple things like breakfast shakes irritate the throat and cause pain.Some people never need to use the peg but my experience was totally different and it's been a godsend.

John.

Hi Laura

unfortunately thrush us very common it’s because the lack of saliva effects the entire way the mouth works .Nonmstter how scrupulous you are with oral care . I was praised by all fir my oral care but I had it several times the last bout was mid October to early December. I tried probibut to be honest they are difficult to swallow yep even though they are liquid u get to stage thinking 150 calories that they contain n the 20 mins to drink a little pot u can get 400 calories from fresubin high cal drinks .i used the probiotics in the early days and to no effect .If your hubby can stand it flucszorle is good but I ended up crying in the floor due to the fizzy pain it caused. Nystatin is much kinder at the first sign of u think mick is getting ut get some prescribed as the pain sets in pretty quickly.  

You can ask nurse ir dr as a precaution if they would give u some my first bout started on Friday evening usually the case and had to wait until Monday!

Has Mick has the mask fitted yet? Forgive me you may have told me I seem to have 7 January as treatment starting day.

Hazel

Hi Hazel about to start my 4th week of treatment today and glad to say I can still taste, my aim right now is to have some Christmas Dinner with the family as I dont expect to be able to taste right through the treatment. Im having a good couple of days and I feel ok and eating with some discomfort so not too bad, Julie has made me some fruit smoothies which are going down well so I havent needed the drink supplements so far. My mouth looks horrendous with open red bloody areas and Ulcers but pain wise ok (sorry for the graphic description) but Im sure you`ve seen it all.

Football wise much better with Ole in charge, onwards and upwards hopefully :)

Have a great Christmas to you and all on the forum.

Dave

Hi Dave nJulie

totaly agree Ole ole ole !, theyeven looked like the Man U of old they just didn’t want to play for  Jose .

dont worry re mouth descriptions been there done it for t shirt in fact aboutbweek 5 if u are really unlucky the smell starts first of all it’s like a permanent hospital smell then it comes from every pore n your mouth is the worst. .ok I was really unlucky n had a radiation burn full length of tongue agrivated by cheek ulcers the margin so that the oncologist wanted to take included catching my tongue he knew from day one but chose not to tell me so am grateful for that ok took until week 12 recovery for it to go and sincerely hope I don’t get tongue damage .

Impressed Feb fruit smoothies we bought a NutriBullet but quite early in I lost the ability to eat or drink anynof the smoothies. Although niw incan eat a tangerine but not an apple .there is no Rome or reason8ng for anynif it. 

On a plus side I never lost taste and still have limited saliva getting better every day.

enjiynxheistmas dinner I found little meals better than trying to eat an adult meal and dropped down to a child plate easier to put more in if uneatbuo then look at a full,plate 

meeey Christmas to you ans to all in the forums

together we can beat this 

Hazel 

Hello all,

May I take the time to wish you all a healthy and happy christmas.

Ive joined a little club I didnt particulary wish for but since I have been on here I have been shown nothing but kindness, support, encouragement and care.

You have all helped my positve outlook on this  even better and my journey a little more easier with all the tips and help of which I have have benefited from on the journey.

A big thank you and group hug for xmas

Onwards and upwards !

kind regards

Ian

Hi Laura,

Wishing Mick and yourself good wishes at this particular moment as pretty much when all the treatment starts.

As Hazel says its pre emptive regarding the teeth and I had similar surgery with all my back teeth out before mask and treatment started. Aparatntly the radiaotherpy can cause quite a bit of damage to teeth and its more problematic to deal with if not removed and hence why necessary.
May also delay radiotherapy treatment a little to allow time for jaw to settle down a bit, but hopefully not too long.

Hang in there my friends and again its not the easiest of journeys but we are all different and side effects vary from person to person so hopefully kept to a minimum.

Light at the end of the tunnel and stay as strong and as positive as you can.

Ask away anything you want or chat away and if please let me know if there is anything I can do to help in anyway.

Kind regards

ian

Hi Ian

just a quick catch up ,how did Christmas dinner go ? Longbstorynbutbone of our party had cold somJihn and i elected to stay at home rather than risk me catching it with scan  only being a week away ! I wasn’t prepared to risk it. Only foundation outnxmas eve so luckily I had a frozen turkey thing jn didn’t look good while cooking it but funnily enough turned out quite a decent dinner and better stillminmanaged to eat quite well didn’t have starters but had 2 puddings. Dropped another co codomol in strength ,but mouth is not great am waking  up  at least 3 times with itbstuck like cement ! My tongue where radiation burn was is now like jelly but I did almost a full yawn this afternoon .

How have you been since we last had contact. ?

my blog has gone crazy over Christmas I’ve had another 200 views and have had 3 more people directly contact  me one who has tonsil cancer from where my hubby used to work and anither a Royal Navy diver !

hooe you can celebrate Hogmanay with a nice glass of water I can now manage lemonade !

hazel

Hi Hazel,

Thats brill re your blog and you are such a great help to soooo many. I have certainly benefited from you and you have been fantastic help to me in my journey and will be forever grateful.

So end my 5th week post recovery and its been a funny one.
I was fab all week last week but this week ive had 2 or 3 days not so great.
Been little more washed out than normal and really sleeping a lot plus my left side mouth little funny with jaw little swollen and funny taste/feeling with with gums and they seem swollen/little more raw than have been. Not sure if oral thrush as dont know symtoms but have taken some meds I had for that left the past couple days so hopefully will settle down.

You are also right re taste buds being funny as I thought I was doing great..reducing Ensures and was eating mince tatties,,and even managed some light dusted haddock,chips and soft buttered toast one night.bliss!!

This week my taste funny again and no real appetite . Xmas day....dried some prawn cocktail but only 2 spoonfuls...had little small bit turkey/gravy and few mouthful steak pie n mash but not really very much at all and no dessert.Kids came round for xmas dinner but afraid I spent most of day and night in bed.
So i guess although still on road to recovery seems a little back this week in terms of taste buds/food intake as well as sleep and generally being more tired/washed out.
I dont really do anything apart from sleep or im my den wiyth gadgets n utube/PC/retail therapy so maybe being so lethargic is making me more lethargic if that ,makes sense but i dont really have much energy to do much else. When did you start exercise again as I may benefit from trying little aby steps n out for small walk ??.
Can i ask where you are in terms of sleep/exercise etc and generally how much of both do you do on average

Not in pain at all or any discomfort, just been little off and bit more tired than usual with taste buds/appetite playing up compared to last week.

Anyways, not complaining and still positive as feel im still recovering so should expect these things and its a time thing so acknowledge that patience is needed and not to assume thats it cracked after a week of feeling great lol.

Anyways enough about me as im fine in big scheme of things but thank you for asking after me and thought id update my little blog.its not much compared to yours but as long as it helps at least one person thats fine and I do actually find it therapeutic to log and record my journey each week and it gives me focus on journey and recovery.

Am sorry to hear about your tongue n hope that clears up for you soon.
You seemed to have decent xmas dinner so that was good and positive re co codomol but id probably still be taking them if I were you just now. I know they have morphine content but much less so than the slow release or oramorph and probably really helpful to you Hazel

So good luck with your scan and look forward to hearing update on how you got on

I will indeed celebrate the end of this bloody year with some nice iced water although I occasionally have a cup of warm milky tea and enjoy that as well.

Take care you and bless you.

Again my thoughts and best wishes to you all wherever you are on your journeys and may 2019 be a blessed, happy and healthy one.

Onwards and upwards

kind regards

ian