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

Ian/ Hazel

One if you recently posted a list of top tips, I’ve been back through the last 10 or so pages and can’t find it, any chance of you copying and pasting it again please?

Cheers for all you advice that you come up with. X

Hi - re Tips

I have a bunch of tips and all together in one section of my blog ( near the end)  hope that helps.

radiotherapythroat.home.blog

Onwards & Upwards
ian

So a little update and following my latest appointment with medical support team yesterday.

To put into contex my tretament stopped last November and I have been having lingering side effcets a little longer than some. That said, I was reminded my my specialist nurse again that recovery to a new normal can take up to 2 years. My consultant also refers me to this two year period of road to recovery.
This will obviously mean different things to different people but I guess the point they made to me is that some will have lingering side effects that dont really stabalise properly for around 2 years.
Also to bear in mind that some, including myself, who have had tonsils out that this operation itself can take a full year to recover from.
All in all I have learned to accept from the people who know what they are talking about and I tend to follow professional advice. Have also learned there are certain things we can do to help ourselves and why I have found it so helpful to be back in the support system and with an action plan.

Back to work next week on protracted phased return with 3 days a week Mon/wed/fri to start with and 3 hrs a day. This also comes with a common sense approach and is not a tablet in stone.

I have been referred to a clinic called "move me" and they will work with me to design an exercise plan, again baby steps, and work out whats best for me and what to aim for, I will do this in my own preferred environment eg health club with bike that supports my back but they agree a plan with me.

Fatigue still not 100% but I definetely see an improvement and not up during the night and managing to get undisturbed sleep now. Still need bed during the day sometimes but this is getting less and less so I would say starting to see a brighter light regarding fatigue.Always been an early riser to up around 5/6am as usual sometimes but I'm so pleased to see at long last improvement in this area.

Diet and appetite was main discussion again as fuel intake is the biggest driver.
Dietitian again re iterated the science around good calories and wasted calories and at my particular time i should now be looking at a more healthly balanced diet.
The good calorie/ wasted calorie explanation is around trying to make sure we get as much nurtitional value as we can as fuel and to try and avoid wasted calories like chocolate/sweets crisps ( if able anyway). These are wasted calories,add no value for us and will give a high sugar hit but also contribute to any fatigue issues. A lot of us were advised to eat high calorie items during recovery like full fat milk/yoghurt/creams etc and that is to try and pile on or at least maintain weight during recovery as much as possible. the radiotherapy is still working some time time after treatment stops and our bodies are looking for glucose/evergy from anywhere it can get it. If we dont/cant eat then body will look at reserves and thats when we start to lose weight/lose muscle as body goes for fat or fuel anywhere it can. Was also told to imagine that after treament your body is still running a marathon. While understandable, so many totally underestimate the recovery period and time it take along with the side effects after treament brings.
It is not easy , i know, but I kinda tried to think of fuel intake as medicine rather than meals when I was at my worst. That said I was a case in point where I coundt/woudnt eat and was on 6 ensure supplements a day. and at one point only took 2 a day and my body eventually went into starvation mode I was told.

We each have our own way of dealing with but what has definately worked for me was going back to the support team and working out and sticking to an action plan.
Basic outline  re food action plan is that I log everything that is going into my body on a sheet and then we can sense check with team and adjust if necessay and discuss progress (or not)
So little breakfast/ something mid morning/lunch/mid afternoon and dinner.

Sounds a lot of effort and it can be but I forced myself religously to make sure I logged something at each time on the sheet and knew I had to report back what was logged. No point in lying/cheating as its only to yourself so if I missed a meal or time I left blank but these were few and far bewteen.Little more often is the key and breakfast might be oats with milk or a yogurt..mid morning...banana/yogurt..2 soft boiled eggs lunch..brioche roll if able..soups are ok as are ommelletes/stovies etc that are all easy to disgest but slowly building up energy. Avoiding wasted calories like choc/sweets etc helps. I sturrgle with chicken which is common, but stovies, slow cooker cooking with tender beef worked with mash..just some examples/ideas

So this is not just made up by myself as an idea/opinion and was advice given by my medical support team who have been fab and monitor my progres all along and for as long as I want them to.

Back to one of the favorite saying on here in that we are all different and thats true and what might work for me might not work for all, but if it helps even one person who kinda falls in line with my revovery road or experiencing similar side effect issues then thats a good thing.It may be worth a try or at least be a catalst for discussion at any medical team meetings.

As well as there being a science to our treatment there is also a science to our bodies and recovrey and I guess the trick is to find the best solutions possible to help us nudge foward in a realistic timeframe.
I've updated my blog a little for anyone who is interested and I thought i would update my thread here as well as not only is it theraputic for but it does show the progress made since I first started this thread last year. It's been a great community spirit with so many contributions and helping one another.
I hope some take a little from the medical team updates and hope it helps at least one person with a little more understanding and coming from the professionals.

note: i have an excel spreasheet that i made up to log/record my fuel intake each day and then used them to dicuss at team meeting. My email details are on my blog if anyone would like a blank copy and an example of what i completed and am happy to send on an attachment file that can be customised to be used by anyone.

radiotherapythroat.home.blog

Finally, best medcine for recovery is water to keep hydrated which also then uses throat muscles....

Drink, then drink again, then drink some more

Onwards & Upwards ( 22 days until Toy Story 4 out on realese) and to Infinity & Beyond........
Ian

Hi Buzz Lightyear aka Ian

once again 3 little words

Clear concise precise.

Only thing I would add is think  food from our childhood as opposed to our old way of living pre cancer ni curries no chillies nothing breadcrumbed no salsas no Mexican some may find rice hard tip try cauliflower rice although u probably wont eat the curry that u would need no naan bread pitta difficult .

 cottage  pie shepherds pies slow cooked stews mash ,peas can be hard carrots are good  

my main difficulty is saliva like superglue ,just hold that thought then try and eat through it .so all if you readingbthis on behalf of your other half’s pause for a min it’s not that we don’t want to eat it may be that eating is one of life’s pleasures and for us at the min it’s a means to an end .

tip 2 hot drinks keep away from ordinary tea and coffee the caffeine is so drying ,herbal teas and de caff coffee .

on a positive note we are in Wales on holiday yep away again I hear you say and at least I am alive to be writing this. Ppps it’s not raining  today either.

so onward and upwards to infinity and beyond 

Hazel aka roadrunner 

Usual excellent post by the original thread starter, thanks Ian, one question; ever quantified just how much water you get through in 24hours inc bed ?

Hi Graeme,

Thanks for kind words.

Re water yes...throughout recovery I was drinking about 3/4 litres of water per day and sometimes more.

Now I would say I'm pretty much regular 3 lires a day approx...spread out from morning to night and always nice and cold...Dont really go below 3 litres a day I actually enjoy it now and used to

Plus Fiona has heating on full blast most of time and house feels like Tenerife, I need to drink.

Hazel banned me from,  but I do also indulge in cans diet coke that never seem to finish. My one wee luxury of ice cold from fridge.

ian

Hi Hazel

Thank you for response and your right and good way of putting re food from childhood. 

That never did us any harm huh and we never had all the fancy foods we can have now.
Good suggestions re your food options and I forgot about cauliflour. Fiona makes a mean cali cheese and that goes down really well.
Another really good point re eating and well said about function..I coudnt agree more and your right its not that we dont want to eat..sometime we just cant..physically...if only it was that easy to say "just eat" and again it was sometimes like medication eating rather than you say pleasurable.
I hope that you get some resolution for saliva issues and thats been around for a while and must be so frustrating. I'm lucky in that I'm not too bad now but I defo know what dry mouth is like for eating and I still need to drink in between bites to get down sometimes and food can sometimes stick a little. so yup, even eating is not always plain sailing and why we sometimes find it hard to do  and if you go along with feeling naff and add no appetite then its no wonder why so many mention that trouble eating/appetite is an issue. 
OMG are you baning me from my nice cup of milky tea as well as diet coke?...I've never been a coffee drinker but I do like my cup tea. Not many and not every day but occasionally I will have small cup tea with food.

A day not raining.mmm you are blessed..never mind chum, soon be time for Spain again

Onwards & Upwards

ian

Ian nope to milky tea unless de caff plus I saw your postvre having been a cheeky Diet Coke which part if NO didn’t you get lol 

ppps still raining 

h x

Hazel

I'm reporting you for bullying me.

ian x

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

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

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