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 Ian 

i would kick n scream at them for an earlier appointment will take cool bag with ice in agree warm ensures are deffo a step too far xx just lie back n think positive thoughts like u have done since day 1 

h 

Hi everyone. Just sat and read through all 28 pages of this forum lol. I've been taking notes all the way through for my upcomng journey and can't thank everyone enough for sharing. I am due to get my upper wisdom teeth removed on Thursday then I am due to start my first chemo session (first of 2) on the 4th March and then 30 sessions (6 weeks) of RT. 

I'll be keeping a close eye and will share anything I can pick up that might help others, this is just the kind of help I've needed, advice from people who are actually going through it.

I wish everyone well and good luck with everything.

Gary

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

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

Hi Ian

yep sounds pretty much like mine but deffo deffo no ipad I wasn’t allowed as much as a book or magazine ! Was lie down close eye and relax ! Just shows how different hospitals handle the same thing. Am sure all will be ok have you got  an earlier date for results ,I know they will be ready after weekend it’s unfair to mak you wait until 19th !!

taken grandson to macdonalds as halfback term treat , the chips drfeated me !!!!! Yes am human ,the cheese burger was manageable without the bread bun but the twin  ice cream was yummy !!!!

look forward to tomorrow’s blog

hqzel 

Hi hazel

ipad was just before I went into scan room, not in actual scan.I appreciated to be honest as 45mins or so went in really quick while waiting. Was fascinated over the fragility of this stuff and how all comes from preston. Guess we all just take for granted and turn up but quite a lot of logistics in the background. When you think of the amount of people and departments are involved just for us, its quite amazing.

ohhhhh mcdonalds sounds nice and glad you enjoyed..I still have a vision of warm Ensures on your holiday so if you run out of ice dont tell me.thought makes me shudder lol 

ian

Hi ian u never know warm ensures maybtaste good. Lol. 

No in the room before the scan we can’t take anything in no distractions what so ever .!,  peace and quiet is what they insist. Yes agree a lot of people behind the sciences. 

H xx

HinIan and Dave

just for to share tonight’s tea with yiu. For the first time in a year nearly a Chinese takeaway !

ok nothing hit or spicy 

but noodles ,spare ribs chicken wings ,prawn foo yung a few chips dipped in bbq Sauce and several,prawn crackers hope it’s gives you hope. Plus Mac Donald’s for lunch  umm maybe nit the healthiest option but hey ho needs must.

good result for us on Monday ,anyway  off to check passports !!!!!! Sorry

h x

H xx

That’s brilliant Hazel another milestone conquered we had a pancake trial run for shrove Tuesday and they are so easy to eat, think I managed six but they don’t call me super Dave for nothing I’ll report back how my appointment goes tomorrow.

Another good win for Ole on Monday, hopefully another win this Sunday, if we win that I’ll be reeeeally happy

Dave

Thank you pancakes aren’t my favourite so tend to forget about them butbyorkshire puddings n stew deffo. Yep super fave 6 pancakes wow hope plentynif golden syrup and cream calories calories. Shout extra loud on Sunday as we will be docking in Santander so will miss the game hope to catch up on radio if my spanish is up to it !,

busy day tomorrow will let yiu know Hiw I get in as well we an compare camera experiences lol 

hope Julie is ok 

h 

Hi Hazel

Sounds great and mouth drooling...It's great you are upping eating game and being able to eat so many different things now...wee milestones like that are a great positive achievment and means a lot huh.

Enjoy latest adventure and remmber the ice box !

ian

HimIan yes it does although paying the price now mouth quite sore ,yhinkmive tried too many things today gums quite sore .But ready for sleep now , tomorrow is another day 

hazel

So week 13 post treatment and still chugging along. My posts can be detailed but again I find personnaly therapeutic and I want to be able to look back and have the milestones as would forget otherwise.

I do feel there has been an improvment this week and although baby steps it's in the right direction this week.
I'm still sleeping a lot but am awake for longer and longer although I have turned night into day a couple of times.
Eating wise, am still on Ensures but not as much and have been trying to experiment a little more. One of the tricks I think is to try smaller portions as I get put off by a big plateful knowing I cant eat it all.
Had stovies/fishcakes/cottage pie as examples and also back on my mini curly wurlys and fruit salad squashy gummys. Have also tried Hazels suggestion of mini jaffa cakes and enjoyed.Hot toasted cinnamon and raisen loaf  and butter/cup of tea now goes down nicely.
It's funny and not sure if others same but I dont seem to have much consistency as I can enjoy say cottage pie one night but few nights later cant touch it. The other thing i am finding is that my mind is actually in the mood of certain foods, I really want to eat them but for some reason I cant. I dont know if its a mental block or otherwise but I dont fully undertand why I cant eat what I know I like and want to eat but can't sometimes physically do..Not sure if making sense but I know what I mean.

Had my PET/CT scan today which ive posted separate detail about and also being doing some work from home and enjoying.Reading a bit more so all in all when I add all these things up I guess that although im still tired and sleep a lot, I do feel some  progress has been made this week and am hoping to build on that. I'm taking this week as positve step in right direction.

I have also been thinking that for anyone reading my blog and I am week 13 post treatment it is perhaps pertinent to say that we are all different and react and recovery will be different for us all. There is no automatic magic number of days or weeks that applies to us all. SuperDave has had a remarkable recovery period and Hazel has done really really well and back on bike quite early on but still has occasitional side effects .I'm probably lagging a bit recovery wise in terms of fatigue and appetite so we all varied.
I went into this treatment just after a bout in hospital after 4 weeks chronic diahorreah and hospitalised for a week and on steroids 3 months (reaction to wrongly prescribed medication).Not entirely fit so I'm sure that may have something to do with my longer recovery period wheres if you are reasonbly fit beforehand there would be a good chance that would stand you in good stead post recovery.
I guess just to point out as I dont want anyone using me as a particular barameter thinking wow 13 weeks and still not as far on as expected.
We are what we are and although I think my mind is overtaking my body, you just have to accept that it is what it is and it will al come back in good time and in your own time and not anyone elses.

So still positive and hoping to get good results from scan  - also aware tha scan is so detailed it can also pick up other things not related to cancer, but pretty much a thorough MOT given.

Meds slighly reduced again this week, left gums still swollen sometimes and Im still drinking then drinking again then drinking some more.

Onwards and Upwards

Ian