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 Dian

My husband's treatment starts on Monday, so your partner's a week ahead of him.  

Glad things are going well so far - hopefully next week will too.

Just had a call to say Surgery booked for Thursday has been cancelled so back in limbo and waiting for a new date.  Think I might have to break into my wine collection.  I hardly ever drink but this is quite stressful.  Been eating like a horse as advised and feel full and fat ready for the op.  Have my shifts covered at work, shopping done all stuff for hospital stay ready to pack, started the washing with that awful Hibiscrub, now feel lost...

Thank you for all the information on your posts, although initially I am down for surgery was warned I might need Radiotherapy afterwards, think I dread that more than the surgery although I have no idea what i will wake up with possibly a stoma if they cannot save enough of the Epiglottis.  Good luck to all currently having the treatment.

Mo

Hi Mo oh no hope you get a new date soon .In meanwhile  keep eating, won’t say keep off the wine just don’t be very do it. 

Keep in touch when you get new date 

hazel

Evening everyone , I hope this post finds you all well, as well as can be expected that is. 

I though I would give you a little update on Chris progress since his last treatment 10 days ago.

its been pretty rough , in his words “worse than the treatment”.

He has had the worst dry cough since end of treatment , day and night it’s awful and on top of a very sore throat.

Having trouble eating anything lumpy & appetite is low and has lost a little more weight.

Is having a hard time breathing and his chest is rattled, but at the hospital today they said that there isn’t any sign  of infection and he has been put on a high course of steroids of the next 7 days. Not ideal for a type 1 diabetic , but sometimes you need help. 

He was given thickener today for any fluids he has ( he has a lot) as his fluids are going down his food pipe and not the other pipe , (other pipe?) I didn’t know this was a thing so may google unless words of wisdom here can help. 

He uses the nebuliser a lot , not too sure if it actually helps as it makes him cough but he is preserving.

he gave up in the morphine and gave it all back today , just sticking to Co - Codamol . 

Itching to get back to work poor fella ... Has to completely rest for 7 days.

fingers crossed things start to improve ...

hugs Ginny x x

JHi Ginny. All part of the ups n downs Rev the morphine didn’t he gradually reduce it ? As what I wasn’t told you have to wean your self off I didn1 mil at a time don’t mean to scare you. Unfortunately the 10-up To a bit longer is bad answer your body is at it’s maximum intake if Radiotherapy chemo and yiueve just got to go with the long slow release. 

On a plus point we are on family holiday in Wales sonthere is light at the end if the tunnel. Ok still have. Saliva issues and a 20 min nap every day otherwise am back to as near normal as I can be. Meat still an issue but fish apart from haddock is fine vegetable s no problem fruit varies. 

Try and keep as much liquid in him as yiu can. Wonder if they mean the liquid is going into the pipe that should be onky for air to lungs ? And nit the food pipe just a thought be careful as that’s how lung infections can occur. I may be wrong not medical trained

thanks for update takencare

h x

Hi Ginny 

This part is definitely an ordeal and tougher than the actual treatment. My hubby got admitted at day 10 post treatment with severe vomiting and nausea so we know how hard it is but hopefully each day from now on will see him slightly improved. The thickner for his drinks is used as the radiotherapy can temporarily damage the swallow process which means that the epiglottis doesnt close effectively allowing some liquid to trickle down the trachea - tube to the lungs - rather than the oesophagus - food pipe. If fluid enters the trachea it then filters down into the lungs putting hubby at risk of aspiration pneumonia. The thickner makes the fluid eadier for the throat to control and swallow effectively. Be careful with foods such as jelly ,ice ream and yogurt as these melt into thin liquids as well. aYou can put the thickner in soups as well as drinks but you may have noticed that the warmer the liquid the less thickner you need. 

Hope this helps a bit- my hubby still has a problem every now and again 3 years on - he calls it his lazy swallow and he has to make sure he actively swallows rather than just letting it happen.

best wishes 

Emma

Thanks Hazel & Emma

Thant make sense re the liquids going down the wrong pipe, I have just relayed that information to him. I didn’t go to the appointment with him today and I think he relayed the information back to me incorrectly. Just sent his Hot Ribena into him all nicely thickened ! :D 

I will do everything I can to stave off infection. 

The cough is quite distressing when he really gets a bad one, for me that is **** knows how he feels, it takes him quite a while to calm it all down.

Anyway he saw his friend John at the hospital today he is 2 weeks ahead and just handed back his nebuliser and said he had all the side effects too apart from the rattle in the chest , so there is definitely light ahead . 

Oh and he does have loads of jelly & ice cream so I will watch that now thanks for that tip Emma.

enjoy your jolly Hazel , no holiday for me this year , but that’s ok .

Thanks girls 

hugs G 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 

Hi Mo 

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

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

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