Hi Laura 

i had a radiation’ burn full length of my tongue was prescribed gelclair by oncologist unfortunately didn’t work for me but know many who it did. Also there is an oral suspension with lanocaine that u take 20 mins befire food n it numbs the burn to enable liquid to be swallowied. Use the peg that’s why it’s out in around micks timecwas when I became reliant on feeding tube for 45 days it kept me alive. 

Goid luck 

keep in touch 

hazel xx

Hello to all and myself

End of week 11 and wish could say i'm dancing and running up stairs but i'm afraid fatigue still looms.

Probably slightly better but not much and still sleeping a lot, even during day.
Been bit more active and one day in office/ appt with consultant/ GP's and shopping and working around 4/5 hrs a day which although mental can be a little tiring.
Food wise im still on the Ensures and using up to 6 a day still as food hit and miss still.
Occasional very small meal but have started to enjoy hot buttered toast, raspberry jam and cup of tea.
its the little things that make you happy huh lol.Also Volvic "touch of fruit water" from Tesco really nice, lots flavours eg Watermelon,Lemon Lime, Summer Fruits etc and nice change from plain water.

Had consultant appointment who seemed pleased with progress and has now ordered a PET scan and should be in around 2/3 weeks time. Was also told not to be alarmed as very often false positives show up and 40% of his patients end up going for further tests if shows up elsewhere in body etc..I'm hoping to be in the 60% bracket.

Fatigue , he told me was quite normal and said he told me at the start that this is serious treatment and can take up to 6 months/ a year to get fully back to normal.
Scope down and he was happy enough with that and said everything was looking good, but lets see what the PET scan results are.

Medication wise told him and my GP that I had halved Morphine etc and was looking to cut further thinking they would both be pleased. Both had a simliar reaction in that I shouldnt be too quick to totally cut off and halfing a bit too much just now and to do more gradual approach.

That apart still in good spirits, reading more, which i enjoy so much and combined with work and gadgets feeling ok. Bit of pressure from work to up the game as they dont understand but GP is equally adamant and happy that if I'm stuggling at all, then he will sign me off for a further total recovery period.
Guess overall just re iterated again by consultant and GP that slowely slowely is the recovery for me and there is absolutaly nothing more that I can do about it and continue to do what i'm doing and sit it out.

Have started a proper blog and am looking to pull together my journey in a little more stuctured manner and have internet addy etc but will take time and do properly but that has kicked in a little incentive for me albeit im in no rush at all to finish.

Hope you are all doing fine whatever stage you are at.

Ian

Hi all this my post week 4 update, I cant believe where the time has gone.

Sorry I dont mean to rub it in but Im doing great, eating and swallowing almost normal, taste practically as normal now, eating 2-3 meals a day, energy pretty good Iv played football 3 times this week thats the most Iv done since before treatment started, Iv got a small area at the back of my throat that needs to heal but great apart from that.

Only down side is my saliva glands havent got working yet and my mouth is still very dry, Im sipping water to make up for it, I even put 2 pounds on this week that will have to stop :)

A bit dissapointed with NHS admin as up to weds I still had not had a letter for my 6 week check up, Julie chased that up and its a good job because they didnt have an appointment for me, all sorted now for the 21st Feb and it was backed up with a 1st class letter.

Dave

VHi Ian

i see the oncologist at cancer centre next January but if I feel the need to see her immune sooner I can just ring. 

Otherwise its lical ENT consultant thankfully not the one who mis diagnosed me twice ! I said didn’t want to see her ,but she has now retired ! I go in the 14 th February’s happy st valentines  day lol. Will let you know what happens ,as I have onky had one scope uo my nose and that was at diagnosis stage. My oncologist said he had no need to use one so I went with that. .Then for first yearvwillmsee her every 3 month s then as far=as I know it reduces to every 6  month up to year 5 .

i see Macmillan nurses the 20 th February  and then when Sen. One back from Spain I will keep seeing them as I am going To do some mentoring  with them 

will,let u know Thursday after I’ve been  seen her 

Hazsl

Hi SuperDave as ian and in have called you. ! lol 

well done on 2 lb I’ve lost a pound whilst in Spain but that could be biking ,re saliva online u can buy xymelts which do help i  the night yiu get them from the mouth ulcer company online   I use them occasionally in night time and I get longer asleep  last night I managed withoutvanything n sleptv2230 to 0700 we are now home  for 2 weeks  

unusual for them missing your 6 weeks check I woukd think ?

seen Ole interview about 2 year plan do u think he will get the job  ?

keep up the good work

hazel 

SuperDave! I’ll take that Hazel, all that bike riding will probably be why you’ve lost a pound but well done all that exercise will stand you in good stead for the future.

Regards the hospital appointment Iv been handed back to a general hospital in Manchester as my consultant has a clinic there on Thursdays, it’s nearer than the other one so not all bad, still strange they had forgotten about me though.

Its looking like Ole will get the job but I would prefer they concentrate on the football for now and decide in the summer, I don’t want us to make another managerial mistake.

Dave

Hi Dave true re football big game coming up on Tuesday . But like Super sub !!! Lol

like me I’ve been sent back to local ENT will only see  my professor now once a. Year unless I request a appointment with him. 

Have a good weekend hope Julie is ok

hazel

Yes it’s a big game alright, it must be a great feeling having to see the prof only once a year well done.

Julie is fine thanks, one thing Iv noticed is how much slower I eat now she beats me every time and it used to be me that always finished first, that’s another thing i’ll have to put right :)

Dave

Thanks for the message Hazel, sent reply. A mixed bag for all on recovery, i see,  noted guys, good of you to share .I have now got 9 left, had break this week for softwear update so less sessions, helped heal skin  a bit, eating, taste swallowing good, mucus reduced but....it will be back!  Have a  great weekend brave people.

Thank you I wanted to see him more often as I really got in well with him. But he emailed me the other day which was nice ,he’s put me forward as a mentor for new people. Plus he is using my blog as a teaching tool which makes me really proud. 

Re eating ditto I always finished first but now it John by a long way ,although no longer taking 45 mins like in the early days. I really read my blog the other day pretty scary what we’ve been through and your brain blocks some of it out was onky when I re read it brought it back 

enjoy weekend

haZel 

Hi Hazel,

Well for my sins I just knuckled down today and literally just finished my internet blog.
Not to self congratulate but i'm really pleased I did it and again found it therapeutic not only to do, but to see more joined up and being able to read back on my journey. My partner hasnt really been on this site so she thought it was really good to see.I may have missed bits out or missed tips but i can always amend/update once it comes to mind.

Again I'd like to share the blog with others to help and although format is slightly different to your own blog, the overall messages/treatment effects etc are still basically the same.

Would love for you ( and others if they choose ) to have a read and see what you think
You mentioned both of us putting each others link on both our blogs and think its a good idea but I wanted to have you read first and didnt want to just put your link on mine without your final ok.
I'm happy for you to put my link on your blog now and if you are happy enough for me to do same let me know and I will put your blog link into mine. Link is below.

radiotherapythroat.home.blog

Hope you are nice and rested. 
Had 4 hours sleep this afternoon after watching Liverpool and now Im still wide awake at 3.15am

kind regards

Ian

Hi Ian

bravo but why are I up atb0325 !!!!!!!!!!!

i will read blog today and have my hankie at the ready. I rev read mine the other day dsyband ut really brings it back to to you the brutality of what we  went through 

met 3 of my fellow radiotherapy gang for lunch yesterday one of the guys we hit diagnosednsame day mask made etc and alkmclear in same day  so was good  to chat out if the environs of hospital  waiting rooms .nine if us can eat a Chips unkess lashigs of gravy Darrenwas a vindaloo man niw cant even stand a korma the 3  guys at aged between 46/and 53 so are all working  but none of them fullmtime one 4 hours a day the others 2 3 days a week ,so don’t despair .

my blog is www.radioactiveraz.wordpress.com

enjoy Sunday and will be in touchn

hazelmx

Hi Ian

bravo but why are I up atb0325 !!!!!!!!!!!

i will read blog today and have my hankie at the ready. I rev read mine the other day dsyband ut really brings it back to to you the brutality of what we  went through 

met 3 of my fellow radiotherapy gang for lunch yesterday one of the guys we hit diagnosednsame day mask made etc and alkmclear in same day  so was good  to chat out if the environs of hospital  waiting rooms .nine if us can eat a Chips unkess lashigs of gravy Darrenwas a vindaloo man niw cant even stand a korma the 3  guys at aged between 46/and 53 so are all working  but none of them fullmtime one 4 hours a day the others 2 3 days a week ,so don’t despair .

my blog is www.radioactiveraz.wordpress.com

enjoy Sunday and will be in touchn

hazelmx