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

HinGinny typical men they only listen to half a tale oops sorry guys love u all really. Tell hubby tontry  and breathe through his nose a little more rather than his mouth takes a bit of getting used to but does help me if I have a coughing fit.which occasionally still happens especially as I am now on no painkillers at all as the co codomol  suppresses coughs.

babybsteps is the way to go 

keep in touch

h x

Hi Ginny

Big hugs to you and your husband, you have both achieved so much to get this far.  Hopefully these side effects will soon start to improve and you will both be able to enjoy life again.  Perhaps think of a short break you can take later in the year doing something you both enjoy for a couple of days.  Something to put a smile on your faces, there is a lot of things not too expensive that will give you a buzz and a good memory..  Take care of yourself too.

Lots of Love

Mo 

Hi Mo 

Thank you . Any news on your news on your re scheduled operation yet ? X x 

Ooo I will tell him that Hazel. X x 

Hi Ginny. Hope you're ok with all this? It's hard for us who are looking in and trying to be the strong one while really there's not much we can do. My husband is a few days behind yours and doing about the same really, give and take. 

He still coughs and splutters a lot but slightly less today and yesterday, throat still sore -still on Fentanyl patch-the lower dose one and paracetamol -syrup, which he has been for about last week and today it gave him an upset stomach so started on the Oramorph and his stomach seems to have settled.

He's just started on proper food after getting fed up with the Ensures but the small amounts he has, which takes him so long -bless him,I think he's better off drinking Ensures with the diet as an extra-to get the calories in 1st then concentrate on eating, as his weight loss has been severe. Same with the appetite as your husband-it is low, I think that's due to not moving around much and the effort and discomfort that comes with eating, which is understandable.

Does your husband get out at all or do much around the house? Mine doesn't which isn't a problem as such I just wonder is this how everyone is? It's a lonely time, being a carer as it's like I've lost my best friend and miss him- but I will get hm back, hopefully soon.

And anyone else...how long did it take to eat normally? I know its a gradual process and everyone's different but it would be nice to have an idea regarding recovery time.

Hope you're all having a good day-big hugs to you all and respect to those who have been through this-you really are  amazingly strong! Joy xx

Hi Joy

its a really difficult one as a fellow cancer suffer who is niw 9 month post radiotherapy all I can say is using the ensures as main part of calories for now is the right way to go and gradually reintroduce new foods. I can still have bad days at min we are all in Wales and I am struggling being in a group if 5 finding something to eat without being a party pooper .

i lost  over 2 stone and even now have onky put maybe 3 lb on from my lowest weight. The big plus point us we are alive to moan at our loved ones .if u re read my blog u will come across piece by my hubby who is and was in your position it’s loney for you and frustrating for us. I loved to cook bake and eat but now it’s a chore to eat .

i still recall the elation of lukewarm consommé soup about 1/2 cup and the inside of a mini pork pie about a month into recovery. Lol. 

A toasted fruit tea cake with grilled cheese became my go get caloire food if choice from about week 5. It’s so hard for all concerned, maybe poached egg on lightly toasted bread ?

we are really all different but baby steps is the way forward unfortunately don’t get me wrong I don’t want to put a downer on things just telling from my perspective. On a plus side ate fish n chips plus chip shop curry sauce yesterday ok only a child portion but managed the fish .plus a piece of carrot cake with frosted topping. 

Good luck Hazel  x 

Hi Joy/Ginny

As you say we are all different and it can take a little while. Some recover and bounce back quite quickly with appetite/fatigue but can still have lingering side effects and some, like myself have taken a little bit longer than most to get some sort of normailty back with eating and appetite. Even then I would say we have to find a new normal what we can tolerate and enjoy. For example I still struggle with chicken as its too dry, I cant take rice or the nice spicy currys I used to enjoy etc I still have fatigue issues that have not totally cleared and back to full normal and my teatment stopped last November. Slowely getting there but its defo baby steps and not really any fixed automatic time for anyone. Each person's recovery will have their own factors that play into it all.
I liked a quote I read in that there is no elevator option on recovery and you have to take the stairs.
I have been told many times both by my consultant and my medical support team that it can take up to 18 mths/2 yrs to fully get back to a new normal in some cases. 

If you go  back a few posts of mine, I detailed a little more info on eating/appetite and the information I got from my medical support team re good calories/wasted calories and some more techincal/scientific aspect they outlined etc and might be worth a little read. Its also in my blog and Ill post link again for you. I'll also be updatingg blog further shortly..

I can relate to the symptoms as I have been unable to get much exercise and I too lost quite a lot of weight/muscle in a very short space of time and medical team put me on an action plan. happy to share that further if you would find helpful but Ive outlined in blog. PM me if you would like more detailed info on action plan I was given.

Loss of appetite is normal and becomes a circle as we dont want to eat, we then have no energy , we then lose muscle etc etc. Fatigue also plays a big part and some like myself have found it harder than others to get out and about or partake in reasonable exercise.

Dont want to paint an overgloom picture but it is a challenge and one I defo relate to and how some others will fall into my category while some other will take a little less time and some might take more.

I have said on here many times there is light at the end of the tunnel as one of my favorite quotes and although it may not seem like it now the light will appear. I hope hubby starts to overcome the side effects and challenges sooner rather than later.

Happy to help anyway I can 

radiotherapythroat.home.blog

Onwards & Upwards
Ian

Hello Mo, Ginpo and Otherhalf

Every sympathy with this stage in treatement. I am aware that whilst I had 3x surgery only instead of radiotherapy it sounds as if the peak of your symptoms marries up with my own, particularly the raw, inflamed, painful and exposed throat superimposed on all the other functional and sensitive areas caught up in treatment.

The lack of appetite is so relateable. The reward of eating just did not equal the suffering involved and it is so off putting. Purely a medically practical event. Even when the tepid temperature and smooth, wet texture is as right as it can be just the act of 'gulping' which stretches and tugs on tender throats requires psyching oneself up for. Its all about pain relief and persuit of something better if this is not adequate. I remember thinking Id deal with the weaning off hard drugs when I had the strength to do so but needing all the assistance i counld get. Its a happy position to reduce at ones leisure when sensitivity is much less of an issue in my mind! I couldnt wait to feel so great that I could just leave my almost redundent patch on and top up with lesser potent drugs.

I also recall feeling very sad that kissing was off limits! As a partner first and foremost (and a carer second) one mourns the loss of refinement, its impact on intimacy and appeal even though one knows they are loved. These are such treasured and positive elements to romantic relationships which ordinarily we strive to keep going and its not for want of trying here that they are temporarily lost. Healthy partners tell us its not an issue for them but it is something extra to weigh on ones fragile mind in this scenario. Please let your loved ones know that whilst you will you cannot wait to unleash all the attraction feelings you still have for them..... just from my experience it another notch on the low chart again.

Im four weeks post oropharyngectomy and 80% of the time can swallow liquids without them coming down my nose. Bubbles still off limits and alcohol looks appealing but its just not worth the sting it gives. Eating big meals albeit slowly and washing mouthfuls down with water. Not fancying snacking, I think Im out of the habit, but weight is back upto 60kg. Breathing air overnight dries out my throat and the coughing ensues plus neck positioning after the wide disection for removing all those lymph nodes and weakness means I wake to sleepiliy do some exercises in order to get half comfortable again several times a night. Just on brufen and paracetamol now though plus the odd throat numbing spray. My shoulder is giving me the most trouble as its the part not yet recovering whereas I can see the light at the end of the other tunnels. But the complaints list is definately whittling.

Crisps and toast washed down with water are better than bread or pastry. Dry foods are less likely to sap the saliva and stick to ones throat. Peanuts not great but peanut butter and just butter much better and melted cheese.... heaped in calories too. Chocolate or high sugar foods sting.

Love to all of you. Hang on in there. Coming out of this is such a relief and you are so close now i promise.

Jane xxxxxxx

Not a word Ginny, I am getting very frustrated at the moment, one minute they have me diagnosed and booked in for surgery then absolute silence with no idea what is going on.  I dont know if I have secondary's in my lungs or just the throat to deal with and it is driving me a bit crazy.  am not a nice person this week, even the poor dog is getting it both barrels and he only wants to play.  That makes me even crosser because i dont like being mean and moody.  Frightened to go out in case I miss the important phone call even though they have my mobile.  Bad dreams and not sleeping really not in a good place this week.

Love Mo

Hello Mo

It is extremely rare to have lung secondaries. By far the liklihood is all confined to the throat area and any extra bits trapped in the lymph nodes. There are strict criteria in terms of timescales which state by when you will have to have commenced treatment. Have you had much communication with your macMillan nurse who is on the hospital site and can wander round the departments asking questions for you?

Remember that if you were lined up for radiotherapy rather than surgery there would be a bit of time elapsing whilst you had teeth removed, the mask made, any extra scans and healing from any biopsies or extractions. You will move direct to 'Go' once things start. Sometimes they have a particular surgeon they feel it would be better to hold off for, staff holidays get in the way, equipment availability if they decide to use the laser / robotic arm etc and this delay will have had the benefits weighed up against the downsides I'm sure. I completely understand you just want the cancer out - shot of it - and to know definitively what you are dealing with and hopefully draw a line underneath it with any luck. 

Not sure where you are being seen but chase tomorrow? Find out what is being waited on?

Fingers crossed for news before the end of the week. You are entitled to feel wreched and have a good blub too if you like. It will be full on when it starts so make yourself take a few deep breaths whilst you can.

Love Jane x

Hello Mo

It is extremely rare to have lung secondaries. By far the liklihood is all confined to the throat area and any extra bits trapped in the lymph nodes. There are strict criteria in terms of timescales which state by when you will have to have commenced treatment. Have you had much communication with your macMillan nurse who is on the hospital site and can wander round the departments asking questions for you?

Remember that if you were lined up for radiotherapy rather than surgery there would be a bit of time elapsing whilst you had teeth removed, the mask made, any extra scans and healing from any biopsies or extractions. You will move direct to 'Go' once things start. Sometimes they have a particular surgeon they feel it would be better to hold off for, staff holidays get in the way, equipment availability if they decide to use the laser / robotic arm etc and this delay will have had the benefits weighed up against the downsides I'm sure. I completely understand you just want the cancer out - shot of it - and to know definitively what you are dealing with and hopefully draw a line underneath it with any luck. 

Not sure where you are being seen but chase tomorrow? Find out what is being waited on?

Fingers crossed for news before the end of the week. You are entitled to feel wreched and have a good blub too if you like. It will be full on when it starts so make yourself take a few deep breaths whilst you can.

Love Jane 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 ?

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