Hi Dave and Julie 

Thank you  the drink I mightn’t have had one a month to  be honest I couldn’t do with the headache s decided easiest way was not to have one. My mouth is still fairly delicate a bit like me a delicate little flower Lol !!!!!!

yep my typos are better than a times crossword !

Hope holiday going well ?

Dont know if you’ve heard latest from Ed Woodward there is enough money to re build the team ,maybe sell Pogdba and there will be more !

i will keep my missives coming for a long while yet. 

Weight never goes in where’s yiu want it to I am holding stable at the  min somwill stick with that .

take care keep in touch H xx

Hi Ian I hope you were going for a run at 0546 this morning and nit sneaking a Diet Coke ! You should be in bed !

Me posting whilst tipsy would probably be a vast improvement ! If I remind you my previous job was a business travel manager so imagine how many people I must have sent to the  place while using a keyboard for over 30 years. LOL actually  none !!!!

although one of my colleagues did send an old dear in her 80 s to Sydney Nova Scotia Canada instead  of Sydney New South Wales Australia.Heaven knows how as 3 letter codes SYD is Australia and YQY in Canadian  Needless to say none of us got a bonus that year after office had to pay to re route her !

thats a total side track.

Anyone out here suffering repeatedly from oral thrush ? I tend to get it every 6 weeks Nystatin and Flucozole seem to have stopped working .My dentist gave me corsdyl oral gel it’s sticky and imagine putting on tongue as far back as you can without swallowing for a minute.That all said I went Monday and it’s clears up so need to use it 2 more days then stop so watch this space.It seems after a while we become immune to the others .Plus resin we are getting ut is our immune systems are still nit working at full throttle,nothing to do with dental hygiene dentist said my teeth and  gums  we’re immaculate

.

Julie says hello and thanks we are enjoying it here just what we needed, my mouth is pretty delicate too when I try something even mildly spicy it doesent stay in my mouth for long, it shows you how powerful saliva is and all it’s uses.

Im not looking forward to next season Hazel, Woodward needs to step out of the way and we need to appoint a Football director in my opinion.

Dave

Hi Dave and Julie 

Agree he hasn’t got a football head at all.

saliva until yiu are like us with limited. I try to explain to John but onky us that are going through ut know Have you tried the xylitol chewing gum from mercadona supermarket over there it does stimulate its trident dental in case  you’ve forgotton I brought 20  packs of 4 bixes baxk with me 

enjoy the sun drizzle here.

h x

We found the Trident yesterday in a Spar I bought a pack to try, I like it and will stock up before coming home tomorrow.Another Hazel top tip thanks.

Dave

You’re welcome I have my uses ! Like John  says especially when it comes to spending money !, lol 

h x

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 Janeagain

Not a fraudster at all and most welcome.
 

Really good post from yourself and really helpful insight into your journey and very imformative.
I first started this thread to try and help others as I was gloing along my journey and since then so many have joined and contributed, supported and really helped one another.

The better the understanding from a patients point of view the better and we all have an obvious interest in this subject.
Lemonice posted quite an iterestiing couple of posts and again I found this detailed post of yours adding another dimension and real life journey with your diagnosis and treatment.

What I found quite interesting was the fact that you had a choice in your treatment whereas I was just told what was going to happen. Still do, but that said, I have total faith in my consultant and my medical support team have been magnificent.

I'll post a link below to my blog that I kept as well, warts and all and it's quite up to date should you wish you have a look at.
Please keep posting as you see fit and a very welcomed addition to the widde range of experieces/support/tips and well as some positive light hearted humour along the way occasionally on here. There are also quite a few good news stories after treatment,mine included and we hope that inspires others wherever they are on their journey.

radiotherapythroat.home.blog

Onwards & Upwards

Ian