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

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

IIHi Ian

welcome to the slowly slowly club 23 weeks post radiotherapy today for me and yesterday’s I knew I hadn’t overdone night it. We flew home yesterday 11 am from Murcia Home for 1500 but OMG was shattered . Even I couldnt eat  last night really shouldn’t have had a couples of bush tucker trial ensures  note to self still in recovery. 

Re medication yep slowly again is the way to to go it’s hard but I now only take  paracetamol when I need it. 

Biking wise in 18 days away managed 152 km and a few km walking most days but I don’t have the energy kevals that my brain thinks it has. 

I do wish the hospitals wouldn’t warn us a but more of the length of recovery. OknDave we know u are flying and well done to you ! But us mere mortals are a bit slower. Lol

Anyway Ian like me niw reading has come back to you it isn’t much easier inwas thinking the other day what on Earth was I doing in the early weeks. !!!! We know you were internet shopping !!!!!.

Good luckmwith writing  blog together I really read mine  the other day ,pretty scary what we  have experience  been through !!!!!

please let me have your link and will put it on mine I am like you the more choice people have the better they can cope with the treatments.

anyway back in U.K. for 2 weeks hard life I know ,butbseeing as last year from may onwards  was a right off I don’t count daily trips to Leeds a holiday ! Going to make it crack while I can 

you will be fine new with your scan is it a pet ct one ? here is an incidence of hot spots  showing up from  memeory will re do it again inn 3 months but you will be fine  I can feel it in my old bones !!!!

re work they can  wait it’s hard for anyone but us to know what’s happening. even John sometimes looks at me when I say nap time he thinks I am skiff g out of washing up!

take care

hazelnx 

Hi Hazel,

Blog prob take a wee while as need to be in mood to do it properly but will share link when finished and good idea re sharing links thanks.

Glad youve had a nice break and you will be fine in a couple days..travelling takes it out of you even before this !..

And yeh l agree us mere mortals are taking a bit longer than Superdave but nothing else for it i'm afraid. and also agree that it is sometimes hard for others to totally understand whats happening and we have no real control over.

Got letter in this morning and have PET/CT scan on Wed 20 Feb 9.30am so not long to wait.

Dont know if im nervous or not but has to be done and guess just the unknown but lets think positive and will be fine.Lets get it over with and deal with whatever.
I think from memory if it showed up any false positives or otherwise positives that they either wait 3 mths and do again but also was told I might have further tests depending on scan.

Will wait and see outcome and at least indications are that results come back in a few days and not too a lenghy wait.

ianx

Hi Ian that’s good 20 Feb soon be here, we set sail in the 23 rd again for Spain my birthday the 24 th so am sure news will be good. 

I had to wait 12 days as there was a back log from Christmas and to Ben honest I didn’t let it pray in my mind just kept postive like you’ve been all the way through. 

Yep Superdave like that ones m just had Greggs pasty n beans not my usual pre cancer food of choice but needs must .Have yiu managed your fish supper yet ? I find chippy fish slides down nicely now

take care we will get there in the end 

Hazel 

Hazel

quick question - what happens now for you.

Ive to seen consultant every month as far as i know. Now you have all clear what kind of future checks are scheduled and how often?

just curious

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