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 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 

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 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