Hi Laura,

Thank you and sorry Micks side effects ramped up. Although temporary it doesnt make it any easier at the time and wish him well and I hope you are coping and doing ok as well.

Hope Mick has a good week and keep us posted.

Ian

Hi Ian. Good luck for tomorrow,I am sure all will be absolutely fine,let us know when results  are in . I had a 10 day wait hopefully yours will be quicker 

hazel who is  getting ready for road trip ,taking 96 ensures with us in then car just in case. Lol bush tucker trials on the beach ! 

Hi Gary,

sorry you are joining our club but really wish you well on your journey.

If you have read through you will see there are many wonderful people who are kind, caring and we all try and help each other. Please keep us posted as you progress and I have put a link to my blog where i have put, not only my warts and all journey but a collection of tips in one place, gathered from my own experience as well as many from others on here as well

radiotherapythroat.home.blog

kind

regards
Ian

Hi Gary 

welcome to the club that no one really wanted to join we are a tight knit bunch thrown together via circumstances .

any questions shout out we aren’t medically trained but been there done it anencephaly will,offer what helomwe can. Good luckmwith the teeth inwas Lucky an s didn’t have any extractions,but I have a wisdom tooth that stuck I into my cheek from week one and is still there week 25 post radiotherapy it pops in and out many a day I think I woukd have been better having it extracted !

take comfort that they’re onky doing it  for the best reasons as. After treatmentbits v difficult to pull teeth due to severity of treatment .

i have a blog which I may have read 

www.radioactiveraz.wordpress.com  which also has a link tonIan who is on here as  Anchor 1707

good luck and babybsteps is the way forward.

where is your cancer ? I was eightbtonsilmwiyh spread to several lymph nodes  official diagnosis 

T2N2NM. The NM stands for no metatis to elsewhere 

hazel aka RadioactiveRaz 

Yes, an exclusive club and not out of choice but here we are. Feeling part of this group will definitely help.

I've started reading your blog as well so will have another go tomorrow.

I'm meeting a guy at work tomorrow who has been through this already and he is going to try and put any of my fears at bay.

I will pass on any other tips I find.

Hi,

My cancer is on my right tonsil so have already had my tonsillectomy. I've been told it's a T4, 0, 0 so as far as I know it doesn't effect any other areas. I'm going in with a bit of naivety and trusting the professionals.

Hi 

I have total faith in my oncologist he promised me cure and deliveeed also promised me treatment would be rough and delivered  that as well. Lo.l Ps 61 year old female whom cries  if she breaks  nail but radiotherapy n 2 chemotherapy didn’t phase me postive mental attitude got me there .!

h 

my spread ead was local,to,lymph nodes are you h p v 16+? It can make a difference

Just wanted to say thanks to everyone who has commented and been so positive especially Ian as your journey is nearly identical to my partners.  He was told in July 2018 he had cancer but it wasnt until his tonsils were taken out (as a precaution ) in September just before he started his chemo that we were told it was in his right tonsil.   The things you have all said have been similar to his , the mucas, salvia , food issues , thrush .  It's just good to know he is on the right path and not alone and that what he has been suffering is not unusal (if that makes sense) .  I am going to show him the blogs and let him read for himself .  He is eating a lot more but still baby steps and still having  2 drinks a day as it is very hit and miss with what he can actually eat, he fancies something but then when he eats it ends up throwing it away as it burns or tastes awful BUT defo getting there every day he is a little better in himself.

  We are now waiting for his PET on the 5th March (which has been put back from this Friday 22nd Feb) to confirm the next stage as he still has a slight lump in his throat and his consultant has indicated that there is a good chance it could come back !!!! which is not good to be told. 

After reading what Hazel has said I think I will ring and ask why it has been changed as that means he wont get an update until nearer end of March and dont want it hanging over him.

thanks again and take care , enjoy your road trip Hazel.

Thanks

Michelle

Hi Michelle

fingers n toes  crossed for you and hubby. Yes it’s so strange we have all have a similar diagnosis but treatment and recovery is so different for all of us. End ifvthus minthninwill be 6 month post radiotherapy if someone has said to me in August I woukd still be having some albeit small eating issues and the dry mouth gunky mouth I wouldn’t have believed them niw it’s still take it one day at a time babybsteps. It’s hard for our other half’s we try and explain yes last week I could eat xyz but umm not thus week no rhyme e or reason for it either. It’s just a frustrating for us the patients as you the  other half but will getbthere. 

Thank u for kind words will try and enjoy at least unlike when we return last year I have no intention of bringing tonsil cancer back with me !!!!!!!!!!!

if you read newleymarried. Emma on here her hubby Paul is now 3 years into remission and at his pet ct scan his lymph nodes went clear so ended up having a neck dissection so don’t despair sending hugs

hazel

Hi Gormo

Sorry to hear of husbands diagnosis but equally please that he seems to be doing well albeit baby steps.

I'm glad you found blog helpful and you are able to resonate with the journey and side effects as the intention is to help others.
I hope hubby can read the blogs ( Hazels is a very good read as well ) and betwen both am sure you get quite a reasonably big picture, but as you say might hopefully reassure him his side effects are normal.
I'm just back from scan this morning and although results available Monday dont have appt till 19th March so will chase next week and what happens and will let you know.
Please keep in touch with husbands progress and also let us know if we can help in any way at all

kind regards
ian

PET/CT SCAN

So just back from PET/CT scan this morning and an update that I will put in my blog to share procedure based on what happened this morning.

So first of all taken through to locker room where valuables/phone etc left as well as my water. Nothing contaminated allowed in and water given in pre room if required.
Just as an aside, was told cancellations can be high just now as only one company in Preston makes the stuff injected and made at 2.00am in morning then driven up through the night to suppply all hospitals. So dependent on any machine/equipment or traffic issues can actually determine whether scan goes ahead.

Anyhoo mine was ok for today and weight/height and blood sugar taken.Too much sugar in system and scan will not go ahead.
Injection into vein then saline then I guess then the radioactive liquid.
Was allowed my ipad in so rested and read on comfy electric recliner for around 45 mins or so as that allows for liquid to be effective.
I had jogging bottoms/t shirt and sneakers on and I didn't have to change into gown or anything as made sure I was in my comfy attire.

Taken through to scan room and told to lie on bed. Option whether to have music on.
Put through a machine with a big polo mint 2 or 3 times for CT  then just lay there while PET scan took place,
Whole scan took about 25/30 mins then up collected belongings then home.

All painless and pretty straightforward and now just the waiting for results, which I will share once I know.

kind regards
Ian

Also wanted to ask did/does anyone experience dizziness and tingling on fingers and toes ? (not at the same time )

thanks

Michelle

Also wanted to ask did/does anyone experience dizziness and tingling on fingers and toes ? (not at the same time )

thanks

Michelle

Hi Michelle

i did experience slight dizziness early when treatment finished dr out utbsiwn to chemotherapy n radiotherapy still being in system it was wore in a morning but didn’t last long. Ditton with tingling in hands n feetbsame reason our bodies have been  poisoned and burnt . I also have waves if what u woukd describe as Heat pouringnout of my body at ransom times still get occasional  hot spots.  Plus body thermostat is off kilter I turn heating up hubbybturns it down !!!! I never felt the cold previously ,likewise have been told that I may struggle with the heat m hence why. May June July August n September early will be out of bounds for the dorsseabke future. But again everyone is different npbutbthink the body temp is quite common.

h

Hi Michelle,

Can honestly say I can still feel lightheaded sometimes if standing too long but not otherwise nor have I experienced any tingling on fingures or toes.

ian

HI Hazel

Sorry for late replies still finding replies :).   thanks for dizzy and tingling a few people have said that which is good to know.

He's the same never fel the cold but layers and layers and the heating on all the time but had been told that so wasnt a shock.

We have booked Spain in June!

Hi  gomformit something to look forward to. We went in October form18 days it wasn’t hard ,hardest paetbwas leaving the security bubble of home. But u will be fine , if hubby nit eating properly get drs to prescribe powder supplements to take. Plu sthe pharmacy’s there sell powdered Ensure enough for a week was €35 .the bread shops do a decent cheese n ham crossaint !!!!!

re the cold dreading gas bill lol

just hopingbthat u can stand the heat in spain as I’ve also heard it  can work the ithee way n I’ve never been good I’d too hot know sun bathing is out and factor 50 is in but hoping we don’t have to give uo our rental apartment and end uo in Wales in a static whi is plan  b ,okmi know we are lucky but don’t want cancer  to take  the options away 

h 

h 

Defo something to look forward to and I will keep them in mind lol but hoping he will be eating a lot more and enjoying it !!  I know as he loves the sun but keep saying he will have to do factor 50.

That would be a shame if you do but fingers crossed just staying in the shade and wearing a hat might be enough but nothing wrong with Wales :).

No defo dont want it to take anymore away.

Just had my 6 week post treatment check up and it went really well, doc looked in my mouth and had a really good feel around my neck for lumps, loads of questions about taste, eating etc but happy with me and said I had coped really well with the radiotherapy. No need to look up my nose with the camera so it must have gone well! Im completley off any meds now too.

Next stop is the 12 week post scan then the results appointment 2 weeks after that which is 18th April and is my 61st Birthday...guess what I want this year? 

Julie says hello Hazel she is fine and will be even better when we can book a holiday :)

Hope everyone is ok

Dave

That's great news and fingers crossed you get what you want for your birthday :). 

tony didnt have the camera at his check up thank god as he hated it said it was awful.

Take care

Michelle

Hi everyone just bsck consultation went well no camera as he could see n feel what he wanted to. Wants check ups every 6 weeks in first year but agreed that this trip would be ok as long as if I felt ill come home which I agreed to. 

So all good pleased with me 

h x 

Great stuff Hazel and even more reassuring.

Now go and enjoy your trip

ps: agree re gas bill. my heating been on constant as more or less in house all time so expecting a steep one as well.Need to keep warm tho.

ian

Hi Ian will do, yep not looking forward to direct debits increase  ouch I turn it up,John turns it down! 

Forgot tomsay although no camera consultant put a gauze on my tongue so he could pull it a bit without his fingers slipping omg I nearly gagged then he wanted me tomsay eeeeeee not a chance u hold your tongue out n try and say it it’s impossible !!!! Pleased no camera though

onward and upward , hope your heatwave helps with heating over weekend

keep in touch let us know ASAP when u get results ,will keep everything crossed 

h