Think it’s good that you are doing this will read your progress thank you

Hello everybody... all very familiar names to me now.

i am aware I’m posting on the radiotherapy thread despiteI aving opted to try single modality treatment with two major surgeries in preference to a course of radiotherapy. I would be due to enter my last week of radiotherapy had I made a different choice or my first week had I had positive margins or nodes after either my neck dissection or my oropharyngectomy. Anyone being offered and facing the same choice dilemma may read ahead as I did to this and it’s useful to understand where the criteria     boundaries lie and to compare both the short and long term effects.

So I’m doing well. My results were all good and for now this is the limit of my treatment. No follow up scans just the camera and my own diligence. My first operation was to remove an enlarged unhealthy tonsil which by nature of its size involved a significant area of stripped tissue in my throat. Very painful but no NG tube which was a godsend although cue instant weight loss and two weeks of serious doscomfort followed by two weeks of jaw, ear, tongue and facial pain.

then selective neck dissection to remove all nodes from groups 1-4 including a salivary gland beneath the jaw and clipping off some blood vessels to limit bleeding during the next round. This runs the risk of nerve damage to he lip and shoulder both of which I have had although the lip has just recovered as will the shoulder eventually since the surgeon was able to identify these structures and preserve them - they are just bruised/stretched. Whilst I was worried about the risks the recovery was actually easier being on the outside of my body. Just working on regaining neck mobility and moisturising the 22cm scar on my throat. Quite a bit of hyper sensitivity collarbone, face and neck but perfectly acceptable in the grand scheme of things. I had my good tonsil taken out at the same time which was much easier to contend with as it was  small and left not too big a ‘bed’ of raw area.

My last operation removed everything the cancerous tonsil abutted. This included a small section of tongue base (invisible to me, not too uncomfortable, at least not as sore as the tongue clamp and stitch through the middle used to tug my tongue around with), section of the constructor muscle which creates a cavernous space where food gets stuck and interrupts the swallow necessitating rinsing down of food hopefully only until the strength of the other muscle picks up to compensate, the half of soft pallet on that side giving a higher arch to the roof of ones mouth which communicates with the nasal space hence drinks flood my nose until it scars up pulling the remaining tissue a little across the midline and until I can tip my head back to assist drainage down my throat (cut muscles and tightness are currently limiting this but by two weeks I was in more control).

the pain of this last operation had me climbing the walls and opioids were the only way to go, eventually a slow release patch sorted me out. I had and continue to have to a lesser extent the sloughing off of throat lining and two hourly up in the night to shift this and thickened stringy saliva, take pain killers, rinse, sit up etc. The NG tube knocking against sensitive tissue was another insult! Pushing for pain relief on the ward was the biggest hurdle as by the time I requested it I was too sore to swallow anything. 

All in all three lots of two weeks of quite henious stuff interspersed with a week or two of relative normality and manageable rest. Then the slower, longer process of revitalising, fitting round limitations of food and drink (fizzy  an absolute no no as foams down ones nose) and rehabilitation. I made the decision for surgery over radiotherapy because whilst the acute discomfort sounded similar in duration and nature the salivary glands (2 main ones arc the rear and one in the base of the mouth) were in the main preserved and the ongoing food sensitivities relatively short lived (8 weeks from end of treatment apparently). Also it keeps radiotherapy as an option for the future as well as further surgery. The outward signs are more visible but neck scars tend to fade down well and not many people look inside my mouth. So far the signs are all good for normal speech although I have developed a quiet snore) and recovery of eating and drinking and shoulder function should ultimately be good within a relative short time scale (a few months). I also think the fatigue level is not a secret hard hitting as radiotherapy although some of you ahead of neck niece steve fitter than I was prior to diagnosis.

My final classification is N1/2 (2cm), N0, M0

Im with you all on the recovery and hope I don’t come across as a fraudster on this thread. It’s my sliding doors moment and interesting to compare the two regimens if they’ve are being offered on occasion. I had a different cancer in my 20s and had my share of chemo and radiotherapy then. I’m like a cat with nine lives!

the recovery phase is a luxury in my view. It means we are planning a future that we were at risk of not having. Time does pass and somehow we get through it with advice and guidance tips on here providing a lot of skills in managing some of the stuff we might otherwise have been forced to accept or endure or thought nothing could be done about.

roll on flat beer as my first indulgence and symbol of rejoining normality. I’m planning back to work beginning of July (I work on itu so plenty of good people around me).

i recommend decent pillow covers for all the dribbling at night... I’ve been like a slobbering dog as my body soon learned not to swallow involuntarily.

Please feel free to ask anything if I can help.

Love and positive thoughts to you all. Thank you force being on this site. I’ve read far more than I’ve posted but my time may come to help someone else.

Jane x

great update Ian, im home next week so will look at those toothbrushes, had my scan, results in a few weeks.

Hi Graeme

Fingers crossed re scans my friend and all rooting for you. I'm sure all will be fine and another good news story on here.

Onwards & Upwards
Ian

Hi buzz 

brill afvise and updates as usual. Haven’t you been using the interdental brushes and dursphat toothpaste all along ? Sorry I thought I had given u that advise in my blog.sorry if I hadn’t emphasised it. I get mine from dentist she gives me 4 toothpastes st s time   Re the crown etc do u have to pay fir that ? Or is it being done under hospital?

onwards  and upwards my friend 

Hazel xx

Hi Hazel

I didnt really pick up on the Dursphat toothpaste although I seen that yourself and a few others had mentioned previous and had prescribed but no one from my medical support team/GP mentioned and was only today at appointment that he said he was going to prescribe for teeth n gums and ongoing.
I ordered some of these Tepe inderdental brushes Amazon this afternoon.

I use the Cupranox toothbrushes daily as you advised and they have been a godsend and I swear by them. So now I'll get onto these brushes/new toothpaste and probably start usiing Difflam more often again.
By the way, did you notice a difference to normal toothpaste? I know he said it has 3 times more fluroride than normal toothpaste but I looked it up and its £16 a pop!..Expensive stuff but Ive been told to add it to repeat precription each month. It must work at that price tho.
Started me with a prescription of 2 tubes 5000ppm - how long does that last and how many would you get if ordering each month? Sorry lol so many Q's

Re crown/root canal/ gum operation etc, I am getting treatment under the hospital and he said he will put me on the right track then its up to me and my own dentist after that.I'm not sure if there is any financial contribution or cost yet but end day it needs done.

Hope your mouth is still getting a new normal but again I was told some may never have 100% back to what had previous.Are you still feeling your getting a little better.?

Hope you had nice day yesyerday for BBQ and a nice anniversary day.

Onwards & Upwards ( 2 weeks till Toy Story 4 !!)

Ian x

Hi Buzz

wont reprimand you for missing the duraphat ! don’t want you calling me a bully lol ! As if. 

I reckon the duraphat toothpaste lasts me between 4-6 week ps and I use it at least 4 times a day you onky need a quarter of normal toothpaste using duraphat ,there’s no real fresh feeling to it but it works , the inter dental brushes as well you will be surprised how much crap gets left as our saliva isn’t doing it’s usual job of removing food. Intend to brush after every meal .

you will find if you ordered 2 a month yiu will soon have a stock and then won’t need it every month .

bbq was good over 60 people so fireman John was busy all day , I socialised , snook into house for poached eggs on toast b b q food plus we made pulled pork a,s hit chilli weren’t going anywhere near my mouth !!!!!!!! 

yesterday  bad saliva day , today I can feel it in mouth so that’s good and made koftas for tea managed to eat 2 patties spiced up with cumin and a little paprika impressed myself  

Hope you don’t get over excited at toy  story 4 !!!!!! Lol

keepmin touchhazel H x

Hi Hazel

just quick wee note - your right about these wee brush things...they are good though and mouth feels cleaner after using them. Havnt got the toothpaste yet and I will get in the next day or 2. Carer's duties these days are getting more and more thin on the ground lol..So I...yes I know Hazel, I myself, will have to go in car, all the way to pharmacy 10 min drive,no traffic, ALL by myself.

One wee tip I forgot to mention, but I stil use them and they are super if you even wanted to add to your blog re tips is the plastic medical sterile syringes(no needle - just plastic). I've used from the get go and although maybe a bit late for most here now, it's one to keep in mind.
I've posted a link and you get pack of 10 for £2.70 and instead of making a mess with a spoon re oralmorph as an example, you just use syringe, sook up 5ml then empty in mouth,Exact measure and so simple and clean to use and each one reusable for a while. It's one of these things where sometimes the simplest little tips of help are the best - like the Cupranox toothbrushes. Anyways, one to add to your knowledge database

5ml Becton Dickinson BD Plastipak Medical Sterile Syringes Luer Slip without Needle for Medical and General Purpose Use / Packs of 10

or just type in Medical Sterile Syringes in Amazon..

chat laters

ian x

Hi Ian 

Thank you good to know I have my uses !!

Yes total agreement our other half’s are deffo slacking tomorrow I am on Grandparent duty driving all of 5 miles to do school run pick up as do I look like I get up early enough for drop off ! unlike you I can sleep I won’t berate yiunfor being up at 0532!!!!!!! Obv you cant  sleep!!!! 

Yes I used the syringe s mine came with the oramorph though agree very useful.

A but if indulgence now.

For everybody out there who doesn’t know I am doing a charity bike ride on 27th if July for research into head and neck cancer I have a page set up 

on 

https:/www.justgiving.com/fundraising/Hazel-Turner24 or search Hazels Tour de Wakefield.

In the words of Tesco every little helps.

Its a 40 mile ride with me and John doingbut along with anithee couple who the guy i met during Radiotherapy.

onwards and upwards everyone 

H x

Hi Hazell

ol....I forgot I posted 5.30am

well sleep still fragmented and I cant lie in bed so I just get up

On the plus side, I get to spend more quality time with myself.

Me and Me get on great and we agree on everything.

ian x

Hi Ian. Lol got to love ourselves dontvee let’s face it cancer card now worn  out. If you are bored there’s a hospital seriesvthink amazon prime Nee Amsterdam set in New York medical director got throat cancer follow s his  his story.  

H xx

Hi all I hope everyone is as doing well as can be expected, Iv just had my first appointment since getting the good news which was two months ago, I dont know where the time goes.

This was with the surgeon who will now take over from the Oncologist for examinations every two months, all good he was pleased with everything he looked in my throat and had a good feel around my neck and was happy with everything, my saliva has started to return to my tongue and inside of the cheeks are nice and moist but still a bit dry at the back of the throat.

Off to Greece on tuesday for two weeks  :)

Keep fighting, Regards Dave 

Hi all I hope everyone is as doing well as can be expected, Iv just had my first appointment since getting the good news which was two months ago, I dont know where the time goes.

This was with the surgeon who will now take over from the Oncologist for examinations every two months, all good he was pleased with everything he looked in my throat and had a good feel around my neck and was happy with everything, my saliva has started to return to my tongue and inside of the cheeks are nice and moist but still a bit dry at the back of the throat.

Off to Greece on tuesday for two weeks  :)

Keep fighting, Regards Dave 

Great stuff Dave and love to hear all the positves.

Enjoy your hols

Onwards & Upwards

Ian

Thanks Ian although I wasnt expecting any bad news theres a nagging at the back of the mind after what weve all been through so it was a great to hear the words. 

Dave

I know what you mean Dave and especially with your cheery wee soul of consultant. I'm sure he must read his kids ghost stories for bedtime stories lol

But all good and yes, we do need reassured and sets your mind at rest , just in time for hols so have a  great one - its well deserved.and also Ole will buy you some nice new shiny players for your return.

Onwards & Upwards

ian

Hi Dave brill news ,glad all good. Enjoy Greece remembered  it’s your favourite place tell Julie to,chill,l out as well. Presume you’ve heard that Juventus are in London talking to Man U about Pogdba going back wonder if we will make any money on him this time. !

we fly off  for a quick break on 25 th June more to see how I cope with the heat just 16 days  time. Got my 3 rd appointment mid July.its a year this month since diagnosis day which looking back can’t decide if it was a long time ago or not. But darned pleased not being repeated this year !!!!

saliva is like yours slowly coming back can eat most meals without drinking which is a bonus. 

Keep in touch like Ian says onward and upwards

Hazel  x

Fabulous! well done! So nice to hear this-& enjoy your well earned holiday-we were supposed to be in Greece now! :-(  but hey ho-postponed it until Sept so fingers crossed we will get there!

My hubbys into his 4th week post treatment & slowly but surely improving-yayy! went out today for about 2 hours, an art gallery then he managed a sandwich & cup of coffee! I was delighted & so was he-it's mad these little triumphs give you so much pleasure! Its been his 1st time eating or drinking out for months- & we used to do it all the time, so yes getting a little bit of our life back too.

So keep up the good work Dave & stay well.Thanks for sharing your good news :-)

Thanks Hazel Julie is very excited about going I can tell you, Im not bothered about Pogba to be honest In fact Iv lost a bit of interest in United I think its too big a job for any manager while Woodward is the CEO, he`s a clown, I think we will be out of the running for a few years sadly.

Im more interested in playing myself for Manchester Corinthians lol we won the league a couple of weeks ago with 4 games to spare, energy wise Im good but still short on stamina and burn out quick which is obviously down to the treatment but overall Im good.

have a great holiday x

Dave

Thanks O.H. and great to hear your man is making progress, he will get there.

Dave

Hi Dave totally agree on Man U we lost 2 giants at the same time was always going to be poison chalice .well done Manchester Corinthians mega impressed. 

Know what y mean re stamina yes it’s great we’ve got tgecall clearcand progressing,but the way we all rapidly lost muscle mass is going to take time for us to recover. Sometimes me like you forget that ibrecent,y read and Ian backed this up our bodies everyvdaybare running a marathon and we should be fuelling up towards 6000 calories a day but don’t know about you but I am struggling to get 2000 calories most days. 

But fuel up  on moussaka whilst away

enjoy H xx 

Hi other half tell hubby well done even at 10  month post radiotherapy bread in most sandwich he’s can be beyond me. Although toast ans toasted sandwiches am fine. My motto is baby steps all the way slowly slowly.it the little things that mean such a lot ,enjoy summer and thanks for posting keep in touch.

hazel xx.  

I’m eating smaller portions Hazel I can’t eat as much as I used to and my weight is stable, a mates brother had what we’ve had and suddenly started putting weight on after two years, strange what it does to you.

oh and my tongue is still ultra sensitive to anything spicy.

Dave