Hi Paul

you aren’t on you’re own doing the dietician side swerve, think my last straw was being given a leaflet in snacks try fish fingers  Chips  and beans in week 2 post recovery they work as a one size fits All in the cancer department.bit like my sister in law ! Who’s best friend has breast cancer has has no problem eating she day id to me one day , so I retorted cattily I don’t eat with my boobs !!,people have no idea .

early days eating  for me 

Baxter’s consommé soup ok not many calories but it was warn and 

tasty.

the thing that was the most surprising was thin white bread not my usual I may add as I bake my own but needs must toast one side lather lurpack on slice a mild cheese grill until bubbling then  any toast I  see more butter cut  info quarters  it goes down well .same with crupmtets and cheese,

if yiubcan getbthere Ensure drinks prescribed the banana strawberry n vanillas I found palatable if diluted 50/50 with water.  Water I struggled with tap water for making mouyhnchalky so went on to bottled water we became a 2 kettle family for 2 months.

i also every day kept a detailed record of calories and liquid consumed to present to  dieticians as I wanted my feedingbtube out like u and your peg.

any questions shout am in Spain at min and to give you hope at 20 weeks post radii yesterday biked 29 km ok not the you r de France but I had no side affects and feel pretty good today so off again this afternoon.

this stage you are at its baby steps sometimes one forward and 2 back but positive mental attitude gets us there. Another one  if our radiotherapy gang got the all clear yesterday so that’s 4 out if 4 of us

hazel

Hazel

Fish fingers?  During the first few weeks of radiotherapy and still able to swallow fine I tried fish and chips one night with the family. My taste was poor but thought cod might work. I found it really unpleasant and really salty. So much so I just poked at the meal and then left it for others. French fries have worked but chip shop chips are far too much like hard work. Baked beans? No thanks. One spoonful and ten minutes trying to deal with the mess in my mouth.

There is a HUGE gulf between what clinicians and even family think 'works' in terms of eating and drinking. My wife asks me what I would 'like'. That list is huge and getting longer and longer. What I would give for a fresh poughmans lunch and a pint of real ale!  Food glorious food.
  I appreciate that it may be different for everyone. However the loss of taste, dysgeusia (what I call disgustia),  inability to swallow and lack of appetite results in a world apart from 'normal'. It cannot be appreciated without experiencing at first hand. So many 'bright ideas' just do not work in practice. However I have appreciated the enthusiasm and advice from clinicians even if I have not been a well behaved patient.  Oddly enough, like yourself, one thing I have found to be good has been cheese on toast. Also cows milk tasted fine.. slightly salty but otherwise better than water. 

I am not keeping any records of intake or weight as such. I will just plough on and without scales at home will not worry too much about the numbers. I can pretty much feel how things are going and currently about my usual weight before all this nonsense started. If I lose a little more weight I will even be a 'healthy' weight for my BMI.

Good that you are doing so well on the bike.  I hope the weather is being kind.

Paul

Hi Paul

yes when she gave me the leaflet stating fish fingers chip and beans I just looked and say obviously you haven’t had 35 radiotherapy sessions directed at your tonsil and struggle to drink water ! 

Totaly agree with fish n Chips it was onky 10 days ago I could manage maybe a third of a fish and a few chip s ,as for alcohol thunk that’s a long way iff luckily I rarely have drink .

Weather  been kinder than home ! Another 15 km today so getting there.

good luck, just keep the liquid intake up 

hazel

Hi 

My dietician was good, because I couldn't taste I did weird  things lol, one day I even had a salmon milk shake! 

I have about fifty percent taste back now at a push, but no sweet receptors which is sad..

I am nine months since last treatment, have to be careful now not to eat too much and put weight back on! The search for flavor is taxing...i do have a little drink occasionally but I pay  the price with ulcers..

Happy healing everyone

Take care

Be well

Paula..x

Hi Paula

ive been lucky and kept taste  buds ,apart from the odd thing ,but sweet things and chocolate taste the same as before ,weight wise I e stabilised atbwhat inwas 10 years ago 9 st 7 lb but if it goes up so be it as food is vital to recovery . Keep in touch we are back in Spain for a few weeks , hope NZ is having  good summmer /Autumn.

Hazel x

Hi one and all.

An update and potentially useful info for others in this 'club' and those surfing in. 

I am now just over a month out of six weeks radiotherapy - 65G (plus two early sessions of cisplatin chemo and which was discontinued). I was diagnosed with bilateral HPV+ driven tonsil cancer with a single unilateral lymph node involvement without extracapsular extension. I had a bilateral tonsillectomy and lateral (left) selective neck dissection which removed a chain of lymph nodes. My contralateral parotid gland was 'spared' radiotherapy treatment in order to try to preserve sputum production.

 Just one week until my ENT review and post-treatment exam. Fingers crossed.

I had a Pexact PEG feeding tube inserted about a week before radiotherapy started on the advice of the oncologist. That was my sole means of feeding and drinking for about 10 days about a month in to treatment. I was a very bad patient and did not meet the nutritionists recommended requirements. I avoided the nutrition drinks provided and used 'Huel' complete meal replacement down the PEG via a Flocare Infinity pump. That and about a litre or more of water daily.

Losing my sense of taste about two weeks in to radiotherapy was awful. It is very odd to try some icing sugar and ony taste a slight saltiness.  The consultant said it might be 6 months to a year to recover.
I gather that everyone responds and reacts differently to treatment. Your mileage may vary.

I pretty much lost my voice for a few weeks towards the end of radiotherapy. That continued to be a bit feeble and only now about a month post-treatment that I have it back. WIth the continued RT 'cooking' even a month out the slight swelling has raised the pitch a bit. I still could not get in to a choir tho.

My swallowing was excellent about a week following radiotherapy and stopped using the PEG.
The consultant said it could be removed if I maintain my weight for 2 weeks and so set that as a goal. However there is little point thinking about that until after examination and treatment review with the ENT people. Since the weekend following cessation of treatment I have been relatively drug free and not using the PEG. Result!

So a month out of therapy.

The crazy outpouring of sticky sputum and phlegm has finally stopped. Yeah!
The swelling and soreness has been testing but managed to avoid regular painkillers. Now its just like an ordinary sore throat. A few persistant mouth ulcers are my biggest problem but only an issue when eating or drinking. I can.. TASTE!. Even a slight hint of sweetness. Okay..very slight  (I think) but that is cool.
No problem eating regular stuff now even if I have to consume lots of fluid to wash it around and down.
I can drink tea and coffee even if they taste slightly salty.  I am intensively brushing my tongue in addition to my teeth and gums in the hope that it will promote taste to return. 

My Dr Who regeneration process is going well. Although it appears I am turning into William Hartnell and which is a little disappointing. The radiotherapy does age skin badly.  I was hoping for rejuvenation. Instead I have turned into a droopy looking basset hound. C'est la vie.

So far so good and a message of hope for anyone in a similar position. The treatment was awf nasty but a month afterwards and everything is most definitely on the mend.

I hope everyone is doing well and hanging in there nicely.

Paul x



 

Hi there,

Not really been in this thread but was diagnosed with throat/tonsil cancer July 18 and am 11 weeks post treatment.

Have also written a blog on my journey, warts and all, and have posted link below in case anyone finds helpful.

radiotherapythroat.home.blog

kind regards

ian

Hi Ian

An excellent and most comprehensive personal blog.

I agree that the tonsillectomy was the worst part of my own journey. I had a neck dissection at the same time but that did not create any problems. However I had recovered fully from both around a month post- op.

You did well to consume so much water. The nutritionists at Addenbrookes hospital argued over wether 3 or 3.5 litres a day was appropriate. You certainly trumped them with 4 litres. Wow.
I just could not get the fluids in.  I am doing much better with my intake now that I am little bit out of the woods but still well short of the mark.

I hope that you are continuing to make an excellent recovery.

Paul

Ian,

Your blog is so positive! I am glad that things are going so well for you, even though you have obviously been through the mill.

I am post three weeks now and many of your experiences are familiar. The naps, the mucus, the Ensures - I know them all!  I have found it much more difficult to eat and envy you your Curly Wurlys. (Ooh, er, Missus!) 

I also live close to the treatment centre and got early appointments and it is for deffo the way to go. My mask had a little mouth cut in it but I would agree with you: get used to having it on because it is only for a little while. My radiologists always played CDs during treatments but they were never quite loud enough once the machine started so I used to play at trying to keep up with the song and was I always at the right place when I could hear it again. Err... no. I also had to sit up one day to have the table adjusted and saw the tracking laser running down me and the table and had the fantastic moment of saying to my radiologist, "I suppose you expect me to escape?" And without a blink he replied, ''No Mr Bond, I expect you to die." One off my bucket list I didn't even know was there. And he said in two years no one had ever tried that line. Gerry, you're a hero. 

But yes, get the morphine and take it. I had to go to my new young gp for it and he had obviously never seen a radiotherapy mouth before. He was quite shaken. Don't suffer needlessly. It doesn't do to be in pain.

Running out of things to agree with you on! I have lost a lot of weight and argued with my nurses about the feeding tubes so I know your recovery will probs be faster than mine but there is no one way to do this. We all do what we can. 

Here's to us all!

Allie