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 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.  

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.