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

Hi Isn  Tough love works every time. Lol still raining xx

Hi Hazel

right back at ya..

raining just now for you pour wee soul but you away back to Spain in 26 days.

I'm in Scotland and get one day a year sun so your barking up wrong tree looking for my sympathies for you having to go through a traumatic few days rain lol.

ian  x

Hello All

Well I finally got hold of my cancer nurse today, who went off to find out what was going on and called me back.  So story seems to be Lung MDT had their meeting yesterday and looked at my scans, they were not overly concerned at what was on them and want to see another scan in 3 months so I am taking this as good news.  This puts me back on the surgery list and will be decided when at this Tuesdays Head and Neck MDT so hopefully by Wednesday I will get a date for the surgery.  I know this is only the start and there may be radiotherapy to follow the surgery and i might end up with permanent  alternative feed or worse case scenario a breathing stoma, but the fight against this intruder can commence.  Have a good weekend all Mo

Also forgot to add has anyone been watching the New Amsterdam on Amazon Prime, its about American Public Hospital.  The director of surgery has throat cancer.  Found this to be a bit creepy with what is going on in my life at the moment.

Hi Mo

at last you’ve got some news. Nope haven’t seen programme will try n find it. 

Try snd chill out over weekend and keep in touch with uodates

 best wishes

hazel l 

Hi everyone. Am back from a wet week in Wales ,had a good family time and we got out every day so bonus all way round.

a few updates on me can  be found on my blog which I have just updated in the true tradition of spoiler alerts before you  all rush to read therecare a few points that are personal,so any delicate flowers amongst us look away. Lol.

nothing bad just a few personal observations that some of you may be experiencing as well.

www.radioactiveraz.wordpress.com

Yesterday I reached another milestone 9 month post radiotherapy in other words I couldn’t have gestated a baby in the time I have had in recovery !!! Not sure which is worse !

gentle reminder to everyone  our immune systems aren’t what they use daily to be I have had a cold now for over 10 days the old me would have got rid if it in a few days! Am iff tonsee local g p later this week so will,report back if anything interesting comes out if it.

good luck wherever you are in treatment and  recovery keep in touch let’s see if we can get the   thread to a 1000 posts 

Hazel x

read your update Hazel and spot on....unsung heros and I couldnt have done without my parner.

have been watching the numbers edge up on thread and keeping an eye on...am hoing that I'm able to be able post the 1000th on here since I stated this thread soooo long ago but we'll see.

Not had cold yet, touch wood, but has alwayds been one of my biggest fears with this and worse,brocnchitis...Had twice and doesnt even bear thinking about to put that on as icing on cake.

Onwards & Upwards

Ian

hi Ian

will get you there only  45 posts to go !

Thank you for reading blog ,just a few salient points that people may have felt uncomfortable about and didn’t want to ask on a public forum nothing  too scary. But yes agree couldn’t have done this on my own or without the  support of my new found cancer buddies at least that’s a positive thats  come out of this.Plus the strength I’ve got from John 

.Onwards-and upwards Buzz 20 days to blast off !Toy Story 4

H x

Thanks Ian, least you have drinkable tap water pal!

Yeh sorry Graeme,,,we take for granted our fresh water supplies.

on the flip side you have the sun !

Hi Graeme I am like you no way can I drink our tap water it tastes like bleach so like you am buying bottled water. 

Small price  to pay  but annoying 

h x

Hi Graeme I am like you no way can I drink our tap water it tastes like bleach so like you am buying bottled water. 

Small price  to pay  but annoying 

h x

Hi Hazel and all.

On the subject of water. Even in Scotland the water can be heavily chlorinated at times to the point of unbearable.

We fitted a filter tap. The filter is a bit pricey to renew but well worth it around 48.00 lasts around two years for us. But I do still buy bottled sparkling water.

I havent fitted one myself yet so maybe ask boiler service chap nicely to fit for me as I dont need a flooded kitchen :-)

Hope all are well.xx

Hi all

Hope all doing well no matter where you are on your journeys and all keeping good progress.

To keep up to date and with my blog a little update from my appointment today with dental consultant.

Feel like I've still had an issues with gums on left side etc and was glad to get appoitment with top man in hopsital to assess.

Yet again re iterated by a professional that I'm still early statges as far as they are concerned and as I had teeth extraction as well then zapped with radiotherapy he would expect on average a year or so before gums were back to some kind of settled new normal.
He also did state that for many their mouth/teeth and function will never be the same as it was before.

Had a good look at teeth and gums and was lookiing for bone dry gums but said was some moisture there, not too bad, so not really concerned. Felt a little tightness at left upper gum and said there was like a little ragged piece that was obvious and could just be a slow healing socket but wanted a furthre look and 2nd opnion.
Took some x rays there and then and we looked at them around 10 mins later on his computer. Impressive to get there and then as he then showed me teeth/gums then went over some of the options re planning the way ahead.

So the upshot is that as a brucie bonus I have to go in for root canal treatment on one front tooth, then at same time he is going to anaethatise gum and remove this piece of skin and hopefully that will help. He also wanted to wait another 3 months to put a little more distance on recovery period time. It just shows that anyone worrying about the length of time for recovery in all areas and full functionality as before that it is not a worry for professionals and they will quote all this is perfectly normal. We are all different and can take different recovery periods but at the end of the day I think the point is not to worry over recovery periods nor set exact times and our bodies will find its own timeline and taking into account our own personal circumstances.
Was also told had to use Tepe Interdental brushes to make sure good oral hygene is kept up and all plaque removed during cleaning.( get from ebay or Amazon and different colour depending on teeth. I need 2 different colors to use on different teeth/gums) I am also to get some special toothpaste on repreat prescription that I have to use from now on.. I think i have the name right in Duraphat and i think its about £16 per tube so thank goodness for our NHS. The cost of our treatment and medications throughout this does not bear thinking about and would be interetsting to know what the overall cost in terms of treatment/ NHS time/medication etc all adds up to just for one person. We generally take for granted when we dont need it but are so glad of it when we do.

Also remember the Duraprox toothbrushes themselves from Amazon as they have been a godsend.

Back baby steps at work and finding little tiring but enjoyable but making sure all slowly slowely and I feel a little better that I am constantly re assured that even my recovery period is considrered normal to the NHS professionals.
So dental plan that from start to finish will be approx 6 months as im also getting a crown post and new tooth as well as other treatment, like addional tooth to benefit chewing so at least I am in system and in good hands

Also have a lymph specialist nurse appointment soon to get some neck exercises progressed as I am still showing a ring around my neck area.
Hope doesnt come across as negative at all as to me its all very positive in that I am being well looked after and re assured all ok and normal even though I may be having a different recovery timeline from some.

Last strong message I took away, again, is that some of us will eventually find a new normal and that not everything will fall back into place 100% as it was before treatment and we have to adjust and accept whatever that will be. I also took away a message that we also have a part and responsibility to play in our own recovery and its not just down to professionals/treatment and medication and we ourselves need to adhere to advice given, make sure proper oral hygiene maintained, proper diets etc are followed.

So will leave on a positive note to everyone and will also update my blog with this as like to maintain.

radiotherapythroat.home.blog

Onwards & Upwards

Ian

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