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 Mo

do as Jane says ring the hospital,I used to find emailing the Macmillan team was also a good way to see what’s happening.The timetable in my case was 63 days from diagnosis to treatment staring or my health trust would haven uncurred a fine and guess what everything was done for the 62 nd day and the morning of the 63 rd treatment commenced. 

Tend to agree with Jane re lung issue as our lymph nodes hold the dead cancer cells in our necks if that makes sense before any strays start to migrate southwards. In my own time span to start with I had 2 lymph nodes that were affected and by treatment time the last ctbscan showed I had 5 one nig one and the others were smaller sontry not to dwell on the issue of spread easier said than done .but once it’s all system set to go it does work very quickly. 

Fingers crossed you hear something soon.

Hazel x

Hi Jane and Hazel

Thank you for your response, its much appreciated.  My case is a bit different to most on this thread only joined because I was after a bit of advice on feeding tubes.  I have stage 3 in the Epiglottis, been told Radiotherapy wont work as its in the cartilage, so best chance 60% of a cure is laser surgery.  had all the USS and CT before MDT meeting and was also told that there was something at the apex of my lung so refered to lung clinic and a PET scan but that it would not interfere with treatment of the throat.  Got pre op appt and surgery was booked for last Thursday.  Got a phone call late Tuesday to say it had been deferred by consultant until after PET scan.  This was done on Friday and now i have deathly silence so I have no idea what is going on.  Am under Southampton and they use a private company for PET scans who guarantee results in 48 hours so this is why I am getting antsy.  Sorry for long post.  Normally I am a happy upbeat person but this silence is killing me...

Thanks again and hope all are having a good day xx Mo

Hi Mo

Okay Im more in the picture / loop now. I had 'something in my armpit' on scan and got referred to breast clinic just for the joy of it. They knew best there what it was or rather wasnt but just piled on the angst.

48 hours to report.... then the team has to meet on their allocated MDT day to discuss presumably? You were told it wouldnt interfere with the epiglottis so take (keep) that on board for now.

I only had throat and neck surgery but am keeping my pals who were diagnosed around the same time as me company on this thread and a 'heres what you could have won!' eye on things.

I guess the question you have is 'has it been reported on yet? and 'so whats happening now and when?' 

Good luck. Keep us posted please. 

x

Hi Mo re pet c t scan you aren’t on your own with it bring out sourced Leeds do the same I had a 10 day wait for my results that what they told me but actually were back within 4 days. 

Although yours is different to ours keep in touch. 

Hazel xx

Thank you Hazel,Ian and Jane for your advice of your experiences-it's really reassuring and stops me getting myself all worried-for nothing too by the sounds of it. I think my husband is pretty on track-which has cheered me up. I re read your blog Ian (the weeks we're currently at and it's very helpful). I like your quote about taking the stairs in recovery-gosh how true!! I would be interested in your action plan to exercise etc you got so I will PM you-thanks.

You're right Jane about psyching yourself up for food-that's what he does and it's nice to hear he's not the only one and it's normal. You sound like you're doing really well and you say you 'only had 3x surgery' wow! there's no 'only' about that. But 4 weeks post op you sound like you're doing fantastic-well done.

Good luck Mo with finding out more-phone the hospital tomorrow in the morning and tell them you need to know by the afternoon and you will be phoning back.

Night all-thanks again for your support-much appreciated and you made me feel so much better. Joy 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 ?

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

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 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