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

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

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

Hi Dave n julie

how Julie coping tell her it’s ok to cry or rant 

i know it’s so strange the things we share with total strangers is hilarious at times ie toilet talk but we know what each other is going through.

i totally know what you mean re taste one guy with me didn’t have any taste and he could eatbanythung me like you had altered taste buds and it was so hard. 

The only plus point I can give you now mine are back to normal about week 3 post radiotherapy it helps whereas the other guy still can’t taste and it’s really getting to him. Just use your imagination to remember what it tasted like in our previous life. Sstveating a toasted fruit tea cake with melted cheese on for breakfast it’s delightful still all about calories .

thank u for reading blog

hs rl n jihn 

Julie is coping well most of the time she had a few meltdowns early on but is ok now, she`s pushing and organising me and is my rock i`d be lost without her help being a typical bloke I keep taking my eye off the ball and forgetting one of my routines but she pulls me back in line. Julie lost her mum at 42 with cancer, a long time ago she would have been saved if it was now.

Dave