Hi Laura

and thank you for the encoragemet as well as a thanks to Hazel and all.

I'm glad you have found the blogs/site helpful and there are a few of us in this club at various stages of out treatment and its a great support and great place for tips and helping one another.

Its surpising how little tips can make the differnce and how you wouldnt think of things if not told beforehand.
At least you have the start of your treatment plan and also depending on potential teeth extracting as this will delay it slighly to allow the jaw to settle.

Depending on your circunstances, I always advice to try and get the radiotherpay sessions first thing in the morning (95% mine were 9am) as it makes a big differnce. You get treatment over with and frees up rest day for rest/taking meds and not breaking up day with a mid morning/afternoon appointment plan. Might not be your preference but I would recommend.

Keep us posted, stay postive and good luck and best wishes with plan. We are all hear for you and rooting for you.

Kind regards

ian

sorry Laura,

just noticed I have repeated myself re recommendation ..sorry lol

I will wind my neck in

kind regards

ian

Hi Dace

Well at least stopped so thats good.

Im no medical expert at all, but I do remember being told not to drink any orange drinks etc..something to do with acid. Again only my opinion to go by, but I personally would not gargle with TCP as very strong and was also advised not to use any mouthwash at all with alcohol content

I was prescribed Difflam mouthwash that I gargle with and makes a big difference.I was also prescribed Caphosol tablets which is also a mouth rinse but was advised even this was a little more effective than Difflam as it apparantly helps clear muscas.

Just an idea but perhaps a word with treatment team over oral hygene during treatment might help and hopefully something prescribed.

kind regards

ian

Thanks Ian Im using the TCP well diluted 50/50 mainly because my mouth looked so bad and I did ask a radiologist if it was ok to use and she said it was, having said that I woke this morning and the roof of my mouth is bleeding so i`ll stick to the salt and bicarb washes for now as well as the Difflam. Thanks for everyones input its good to share experiences.

Dave

Hi Dave

just to echo Ian’s comments be very careful with TCP I think it will be far too strong .you can get oral non alcohol mouth washes prescribed or try Boots for Biotene for dry mouths I was ok at start with that’s but recently too strong  I must be delicate as the difflam is too strong as well I have ordered bioxtra on line my Macmillan nurse gave me a small sample but can’t precseibe it due to costs . It’s strange how Ian in Scotland seems to get everything prescribed me in the North have to beg , I had to beg for food supplements but that’s a whole different story !!!

just take evtythjng one day at a time are u in for treatment iver the weekend ? I only had one bank h9kiday while mine was been done and the week prior I had 6 blasts that was hard. Best advise just put tv on n. Chill over   Christmas don’t over do anythjng as your body will now deffo start to feel the effects. 6/7 weeks radiotherapy can take up fom18 months to recover from 

Hazel

Thanks Hazel yes im in on sunday I get Christmas day and Boxing day off, my appetite is waning now although I can swallow ok with slight discomfort, my doc prescribed some drink supplements this week I didnt have to ask, we all get different advise and treatment obviously...18 months to recover..bloody hell and yes Im knocking the TCP off. 

I was playing 5 a side football up to 2 weeks ago really missing it. 

Dave   

Hello all and I hope helps but rationale to start this thread was to try and log my little journey in the hope that it helped at least one person..

soooo this is not my 4th week post treatment and I hope I am not talking too soon or overegging but I feel bloody great this week and in the scheme of things its a good message week over progress.

I feel even one week has made a difference and am starting to notice improvements in how I feel with side effects and how I feel personally.

Dont get me wrong , Im still tired and nap when I like, but seem to be awake longer this week and have managed a few different experiments re food. Had mince/mash.petir pois n carrots all mashed in and managed to take in. Taste not brilliant brilliant but its fuel and wasnt as bad as thought and cound t done cpl weeks ago. Managed this week to eat half thin bagle with butter/bacon n soft egg and the most wonderful cup of warm milky tea. Frankfurters n tomato sauce, but as Hazel said you will often find you cant take everything...Tried a steak and gravy pie, took one bite and put it out as too gross.

Down to 3 ensure drinks a day then supplementing my supplements with my food experiments and mini curly wurlys and mini mars bars. Sod the teeth for now !

Not sure whats going on, but one thing I am going through a lot of is these mini curly wurlys...one thing that tastes great right from fringe and I must admit am indulging in them quite a bit but can only help pile the calories on.

Mucas has pretty much disappeared completely and although mouth still dry not as bad as it has been and Blitex on lips to keep moist has been great and helpful.
Still drinking at least 3/4 litres water a day and im convinced helps so much with everything..

Still on meds but have reduced oral morphine slightly as also on slow release morphine and this has been fine as well, touch wood.

I may have a blip and will deal with if and when comes, but after such a bloody gruelling time its great to have a week where I genuinely feel bloody fantastic !!!!!

I guess im coming across as little over excited as im still obviously not fully recovered but its good to have a good cheer mesasge and to those of you behind me in treatment, take heart that the side effects do calm down on your journey like mine. We are all different and will happen in different stages and although some side effects may increase again, am taking heart on  how I feel just now.

Next goal is to get back to reading more as Im an avid reader and miss as ive found too tiring. 

So onwards and upwards again and hopefully by next weeks update I will have been out ice skating, dancing and little bit of hill walking lol

kind regards

ian

Hi Ian

great news said the pie girl !,congratulations on mince. I still can’t do that only in a m n s Cumberland

pie ,any other dish no way. Keep up the good vibes as I do believe a positive mental attitude really help. I am sat drinking a Nescafé toffee latte 81 calories whilst dipping 2 lotus biscotti 100 calories strange how you become calories consciences for putting the weight on and nitafter a lifetime of trying to loose or maintain it. Now in fridge compartment s at supermarkets shun the no fat stuff. Re Xmas day don’t stress just try and enjoy the day I know a full xmas dinner is way beyond me so will makes sure I’ve had Ensure and nibble on what I fancy 

Reading join the club I am also an avid reader ,you will get it back i was  about week 6 started with Saturday time s which I had bought the previous 4 t months n piled them up threw the main paper n kept the magazine n travel bits ,then slowly progressed to a book it took me weeks to read a full book but now I am nearly back to normal slowly does it .likewise the TV could only watch stuff that I didn’t need to thu k about so didn’t watch much a t all. But now getting back into my documentary s.

well done in oramorph I have reduced two of my tablets tried for last 2 days to reduce the lunchtime one but was feeling too much pain so have decided nit to mess with them niw until after Christmas.

my main problem has been the radiation burn full length if my tongue in the side hence why 15 weeks later  am still in need of them . Dr says they are painkillers for a reason to kill the pain don’t be a martyr so am taking his words of wisdom on board.

keep going we will all get there 

merry Christmas and let’s hope 2019 is better year with no surprises 

hazel

Dave

welcome fomthe supplements club , I feel yiunfind them too thick which I did a tip dilute them with water works both ways easier to swallow and you are getting more liquid in romyiu. I even resorted to buying complan from supermarket n mixing that up with The fresubin or Ensure drinks extra calories as well.

at least going in the Sunday yiu are just keeping the continuity up as it’s impoetant nit to miss any.

re football I missed and still so my cycling but ut will come back to you. I managed 100 km in Spain in October the weather u. U.K. in winter n cyclcling I am too much of a wimp. Got a set if rollers n my bike is sat on them in spare room I do a few km every so often . Sorry to be the bearer of the 18 month news but it’s the radiation that cure s us it’s also makes us soooo tired but small,price to pay for a good end result  it about learn8ng to pace which after living at 80 mph all my life I am having like u to adjust  I bake some this morning and done nithing  afternoon where previous would have continued running round .

enjiy Christmas as much as un an don’t try n push food down you have the drinks n nibble if u feel like it always have anither Xmas in middle of the summer next year !!

bestbwishes to you and your family 

hazel 

Great to hear Ian glad you are feeling so well.

Dave

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 

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 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

Hi Ian 

in marathin terms you’ve hit the wall ! Or in other words as low as you probably go I liken it to week 8-12 on gamma ray Gary’s blog  we all hit it at different times in the process .its a vicious circle to break sleep is good but what we are suffering from is radiation tiredness and as daft as it’s seems exercise is the way out . Start baby steps as always just walk to end if your street next week then maybe a little further. We flew off to Spain start if week 8 and it was around your time now that’su  inwas low and John and I had words he just didn’t get it inwas sleeping and not eating  at all I said I can’t do a 2 hour car ride 2.5 plane ride etc etc but as u know I did it. Git my rollers  out fit my bike n did 1/2 km a day nit much but a start .by now it was October so wrapped up well and we started to venture out we live in the country’ so never walked far but 1;2 mike slowly increased to a mile. The sleeping I got into routine in day time 30 mins around 12 o clock and 30 mins around 5 pm put alarm in if need be and get up. 

I know u like to read get a book not a kindle or tablet a good old fashioned book set your self small target so you don’t over tire yourself then move in to a chapter .

i managed spain atbweek 8 and first day walked 6 km bybstart if week 9 I git in my bike and did 8 km by time we came home week 11 inwas doing 22 km ok nit dine as much now as me n cold don’t agree . Give it a try.

te your mouth if thrush it’s white and u can scrape it off otherwise it could be like my tongue atrophy is what consultant called it basically dead nnre generating  .

food try toast with chees and a poached egg on top calorie s is the name din the game jelly n custard think back to when we were kids and hi to comfort food .have you tried ice creamI couldn’t stand it for weeks them one day I tried it out it in cake it softens it and increases calaoeies mix complan with Ensure as well thins it downs increases hydration and increases calories  

I used to aim for 1800 calories a day and had a notebook where I wrote everything down  it was two fold gave me some control over what u was doing plus made sure I kept my weight stable.

being lethargic us making u lethargic 

xmas was far better than I thought possible a month ago , I am now cooking and baking which atbweek 5 I never thought possible don’t despair dust yourself down and look forward to next 5 week s week 10 spring will be justbeound the corner wellmat least it might be lighter a little bit at 5 pm .

one last thing unfounded a lymphatic massage site last night I had asked my nurse if it would be okmand she said yes try anything wow I slept until 0430 without getting up for water to unblock  the mouth yiu May have that delight to come 

go online Rochelle Clark lymphatic massage of course  I can’t teccomend it but I felt it moving the gunk afte about the 2 nd session.

I am slowly reducing the co,codomol now 3 tablets atb8 mg and 5 at 30 mg the aim is by mid January all then Ben 8 mg then start reducing to 4 8 mg and 4 paracetamol but like unsay I keep reassessment of utbas I don’t want pain.

hope above helps and thank you for comments in blog I hope it is helping people as much as it helps me 

john and I echo your sentimentsnfor a blessed and happy new year to everyone .

Hazel  

Hi Hazel im at the end of week 4 radio now, my mouth is so dry at night, Im rinsing with mouthwashes when I get up which a bout 4 times each night but the dryness at the back of throat is back straight away, roof of my mouth is still bleeding from sore areas, food has become horrible to me I cant stand the taste of anything and had to have a smoothie last night while holding my nose, also Im now constipated all the time, I have a doc appointment today aswell as the treatment and Im going to tell him everything.

Dave

Hi Dave,I also got the constipation real bad at around the same time as you during radiotherapy and I  didn't go for 9 whole days! I put it down to the oramorph and codeine.Anyway they prescribed some Laxido at the hospital and I think I had a large dose and it shifted it.Dropped down to a single sachet at night and it solved it for me.I still take it every day now until I get into a normal eating regime.I'm 19 weeks post radiotherapy.

John.

Thanks Hazel and I was kinda thinking about moving my butt after new year and getting back to our health club. I used to go every morning before work for about an hour on the bike ands one that supported my back, Ill leave swim just now in case of infection, but I guess your right and need to try and baby step back to exercise and dust some of these cobwebs away.

I like your analagy to hitting my marathon wall and if its as low as I can go then the only way is up!.

Determined to keep positive as not in any real discomfort apart from constant tiredness and little niggle re mouth/gums/jaw.

I stay in small village so will get out at the weekend for a small walk and start from there so thank you , again !

You make me dizzy with all your bikes rides etc and Im sure you have superpowers..

Still keep taking ipad to bed but dont really manage at all, but again baby steps.
I guess trying a little of things is a better mode rather than high expectations of awake/exercise/reading and eating even at this stage and will pop my positive sensible hat on again and re start my engines and thought process.
Like you I find recording a little blog is quite therapeutic and was determined to do so from the get go. If it helps anyone along the way as well then thats great,

Will wrap up and thanks again as feel little more encouraged now and will also put my cloak on to see if I can get my superpowers to work.

Onwards and upwards

kind regards

ian

No problem Iam I glad  I can help I will let’s face none if us asked for this !! So a problem shared is a problem halfed.just build up slowly it’s a case of hare and the tortoise .

re reading pick something that’s easy for starters as it’s like watching tv I e only just started watching documentaries and things that need my brain up to now it’s been masterched  n bake off anything else hurt my head !!!!

look forward to next catch up.

Hazel

Hi Dave Yep you are on track ,dry mouth is the worst side effect of all , try a glass of water at side if bed and a bowl just sip the water to try nd break the seal  mouth stuck  roof of mout I i liken to to ripping a piece of Velcro .weel 4 for me was our big bust up with John all over poached egg well insend 9 poached eggs back as he wasn’t cooking them to my exact needs. Oops !!!Ne laugh about it now. It was around this time that u succumbed to the feeding tube which did help left me to concentrate on everything else as I was struggling with the 2000 calories that they wanted me to have some days I was lucky to get 800. I really do sympathise a season I have been there read the book wore the t shirt.if you haven’t been given the food supplements ask for them plus if you find them too thick get some complan make it up water them down two fold increases calories and increases liquid. I was given Movicol or laixido early in the process and still likemJohn take one every day ask your dr or nursedor prescription,your dentist or nurse can also provide saliva spray they do  help .i also bought on line mouth mouth called bioxtra very very very mild. I rinse last thing  at night with it and usually get a good few hours. Also a company called the mouth lozenge sellmquite a few products one being xymelts I couldn’t get in with them but know,people who swear by them.  Also in day time try chewing gum sugarvfree with xiytol in it to encourage saliva 

Don’t know if you’ve read my blog www.radioactiveraz.wordpress.com I have a few tips in there and more or less a weekly review. I am now week 15 still have dry mouth in night but only up twice Keep in touch Hazel

Thanks John / Hazel I dont know why but sharing my moans on here helps because I know you`ve been through it :) Iv been taking Dulcalax and after three days it shifted today..bloody hell Im like clockwork normally this all strange to me.

I had my weekly one to one with my doc and Iv lost about 5 kilos which he said cant continue, Iv eaten well today so hopefully now back on track after 3 days of not being able to face food much, I wish I couldent taste at the moment which must sound stupid, you were right Hazel no two days are the same.

Doc says Radiotherapy does strange things to people and we all react differently, I suppose its all part of the radiotherapy roller coaster, yes Iv read your blog and just caught up with it, thanks.

Dave