Many thanks to all of you - it really helps to log on and read your comments. I've got some oramorph now and that is helping. I seem to be up and down on a roller coaster at this point - either feeling great and wondering what all the fuss was about or incredibly tired or just in loads of pain trying to get up the energy to go and take the meds. Its a weird one and my wife is getting fed up with me. She cooks me something and it tases like - well yuk - and I refuse to eat it and I know she's gone to a lot of trouble but I just can't. Then yesterday I desperately wanted some chips smothered in mushy peas and by god I got some of that down and felt like a world champion! Today even yoghurt is battle again. Still I am now counting down the sessions - only 6 to go and if I can just keep on top of the pain, balanced against the headaches and the stomach ache and feeling sick I'll be fine. It is better than being where I was 5 years ago I keep telling myself - and it is - it really is especially thanks to you people out there taking the trouble to bother writing on this site. It really is wonderful.
Here's hoping I am in much more pain than you are

Tony

Hello Tony ,been catching up on posts and I remember all this with my husband so well it is really tough going, both physically and mentally and you are doing really well you know ,even though it does not feel like it at moment .My hubby's eating came to an abrupt halt week 4 and had to have a peg tube fitted and you are still managing to eat and drink this is great .

Taste and dry mouth ,sores ,thrush and pain are sadly all part of this treatment and heavy duty as you are experiencing .We were told to remember everything was managable but you have to shout up at everyturn and not put up Tony.

There are lot of pain killers and potions to use for each problem that arises and keeping abreast of them as they arise is helpful.Silly things like if you have problems with thrush in your mouth which some people do during and post radiotherapy having the Nystan in fridge on stand by is helpful and I am sure your GP would accomodate this but only if it is porblematic we always found that this would appear at week ends .

The old bicarbonate of soda plus small teaspoon of salt is good for keping mouth clean.If you are having problems with ulcers the Corlan pellets are good there is also Gelclair again prescription but better post RT and sometimes can be drying but works well .

At your stage in RT Paul used the oramorph in about 10 mls of water and just rinsed and held it in then spat out so used it really as a mouth rinse .This was because he was on MST slow release for pain as his mouth was in an awful mess plus his face and neck was very badly burned and also used to get areas of infection around back of neck and behind ears .I believe there are new creams they use now for this but when my hubby was going through this it was the Aqueous cream .Paul also had bad nausea and vomitting but he was also having Chemo as well but if it is a problem with you ask for anti nausea ,again there are numerous ones ,make sure you get one that works just keep asking for a different one .The fatigue and tiredness will probably worsen and be there for a while after treament is finished the best thing to do is sleep and not try and push yourself.

Last year when we had round 2 of Rt the IMRT this time he only had one area in mouth that ulcerated but London used a 300mg dissolvable aspirin in which was added a Raspberry Mucillage which he had to put in hold then spit out .

Aslo Tony when Paul completed treatment he was really tired and slept 24/7 for a good few months but this was because he took nutrapoenia sepsis in week 3/4 because he couldn't eat and drink and was reluctant to start peg tube and dug his heals in so this really delayed the healing process and held him back major style so please keep doing your best with your nutrician .On last day he was also given an anti depressant as they said it was beneficial he was on this for around 6 months whether it did anything or not I am not sure because he slept so much but it seemed to be standard practice at Glasow then .

This is such a hard difficult time Tony and you are doing really well.Don't worry about your wife I was the same making tasty wee things for my hubby and they were pushed aside as he could not taste them once he was able to eat again but it did not bother me and your wife will just want you to get back to normal.It took a good few months Tony once Paul was eating to adjust to the lack of saliva and poor taste but given time you will adjust and get to know what foods do give you a taste and what just burn or taste bad it will sort out eventually ,so you just hang on in there.

I hope I have been of some help ,you will soon be finished Tony thinking of you.


Love Bell.

Hi Tony,

Sorry to read that you are still in agony but congratulations on managing chips an peas this far into therapy. I think you might be up for a record there. Chaz lived on readybrek, weatabix and fortisips during his last few weeks of RT.

Its great that you realise how difficult it is for your wife. I know that the whole eating during rt thing places a lot of stress on most relationships and is difficult for both parties to cope with. Maybe your wife needs a moan here too :-).

I am glad Bell has found you - she has loads of wonderful practical advice.

Anyway I wish you well for the final bout - only 6 more to go. (You have just reminded me that my partner - who is also a teacher- pinned his daily raio scheule to the frige and stuck a gold star by the side of each date when he came home from the hospital each day!) Even though the first few weeks of recovery are tough, I think it will be wonderful to know that you don't have to struggle in to get zapped anymore. Perhaps you can start thinking of lyrics for a new and appropriate song ......about frying perhaps....?

Take care Tony,

Best

Cathy

Hey Cathy what a good idea a comedy song about radiotherapay - now I bet that hasn;t been done before - and I think I have a pretty good idea why not. I actually have one about Frying - it's called Die Frying It is basically about someone with a high fat diet! The chorus is "I'm gonna live this way - Or die Frying!"
I now have no idea at all how I managed the chips as I am struggling to manage anything that isn't liquid. Tough day to day. Even icea cream I just had to give up...I am hoping tomorrow will be better - a triumph of hope over experience - though this quote is normally associted with re-marrying!
Fortisips are good but one is all that I have managed today.
But I am keeping positive - when I can keep awake. And thanking God for oromorph - and hoping I have enough left till last till Tuesday!
Many thanks to one and all
Here's hoping I am in more pain than you are!

Tony

Well I am now only have two more sessions left but I am at a pretty low ebb - even drinking water is awful. I wonder if anyone else can relate to this: it is no longer the pain that stops me eating and drinking - I can cope JUST ABOUT with that - it's the taste - the awful catarrh that clings to everything in my mouth and no matter how much I spit it's still there. The spitting in turn seems to make my throat ache even more. Using a straw has now become really difficult because it require so much effort on the part of my now very damaged tongue. I just feel like giving up eating and drinking - even taking the meds is becoming a major drain on my remaining energy. I'm starting to get minor panic attacks just thinking that I need to eat and drink - as I just want to retch at each sip.
Would anyone advise going for a peg? Do I just say can I have one? Or do I have to wait till they decide I need one? Or is it not agood idea and should I try and avoid one?
Does anyone know anything that will get rid of thetase? I have a cherry menthol tune in my mouth at the moment which is burning somewhat but at least is effecting the taste in my mouth a little - so a minor victory!
Any help and advice is always very grartefully recieved.
Hope I am in more pain than you are
Tony

Hi Tony

Just read your posting as "one" who has gone thur the R/T zap what you are experiencing is unfortunately par for the course.

The good news is you have only two more session and then you are finished which is brilliant. It then seems to get worse for a few weeks while the RT continues to "cook" you, the last week and next 2 or 3 weeks are a real pig.

Ok, as long as you are drinking fluids that the main thing, like you I did not have a peg but I had a nose feed fitted in the last week which stayed in for a week.

Try and keep drinking water you might want to add a spoonful of honey to some warm water and sip it regularly are you keeping up the bicarb and salt mix gargle, the metal taste starts to easy off after a month or so try not to worry about the taste thing it does get better.

If you are unable to continue then you must get in contact with your hospital don't worry just ring up the team who is looking after you don't let yourself become dehydrated.

if you can manage it try some Ben and Jerry ice cream (it will taste like s**t) but there a round a 1000 cals per tub and you need to keep the cals comming .

You need to drink at least 1 or 2 litres of water per day?

I know how you are feeling its something that no one could explain with having the experience but you will survive and beat this the next two to three weeks are going to be rough, if you have any problems you must get in contact with the hospital don't mess around and leave it don't worry about not bothering them.


If there anyway I can help you let me know.

Take care

Regards


Tony

Hi Tony,

You poor thing, you have just taken me back to how Chaz felt about 6 months ago. Water became unbearable but he found milk better for some reason.

Do get in touch with your hospital about a peg as it may help to reduce your anxiety, but try not too worry too much if you have to wait over the w/e. Unless you are already severely unnourished your low intake may not be as a big a problem as you think. BTW When I told the nutritionist at Sussex that Chaz was only managing 1300 cals a day in week four she said I should be delighted and that was much more than most H&N patients that far into treatment.

I think anxiety is also par for the course. Chaz was prescribed (I think it was called) lozepram a little blue pill taht he could put under his tongue and that seemed to help relax him a bit. See if they can prescribe you with something for anxiety. I have suffered from panic attacks on and off over the years and thats the last thing you need to be bothered with right now.

Well done you are nearly there.

Big virtual hugs,

Cath

Hello Tony ,things are beginning to kick in major style now unfortunately,it is a very tough time .The hellish taste and difficulty swallowing is all par for the course unfortunately .The gagging or wretching does not help as it builds up a feeling of fear that you just cannot face eating and drinking .

If you cannot get enough fluids down over weekend my advice is a prompt phone call first thing Monday morning to be seen by your designated nurse or whoever you liase with on your team .Nourishment and fluids especially with RT is of vital importance at this stage, in order for you to manage to complete treatment well without causing what they call neutrapoenia which will hold your recovery and treatment back .

The peg tube is perfect for the short term to get you through treatment and for a few months afterwards till your throat and mouth heal and then you can have it removed .This means you can relax in the knowledge your fluids and nutrition are good .

Even if you can't eat well at moment just try and push some fluids till you can be seen at hospital this would be the sensible thing to do .The peg tube is just a means to see your body through treatment and start of healing .My hubby declined this and ended up making himself so unwell and caused untold problems which could have been avoided ,so please make things easier on yourself .Once the blasted thing was put in and he perked up he agreed he should have done this earlier .Some hospitals make it an expected part of treatment regime and others wait and see how patients fare and do it when things become a struggle .Paul preferred the peg tube as the naso gastric caused him grief because his treatment was around that area and also found it uncomfortable whereas the peg is unseen and really not a problem at all.My hubby could not tolerate the ensure as they made him sick but liked the Calshakes .

Although you only have a week or so left it will build up and the RT runs for around 6 months once you are finished so your mouth ,throat and copious phlegm will take a wee while to settle so I would go with the peg till things heal .

Usually the clinic know by your blood results when your nutrician and dehydaration is dropping and usually suggest a little help but you know what you can and can't manage so talk to your team first thing Monday .

Hope this is a help and you don't think I am nagging but have been through this with my husband and so wish had i known about this forum when he started. I would have not stood back and made sure I talked him round instead of waiting till he was so ill it was not an option .

Feeling anxious and getting down and depressed comes along with this blasted treatment ,again mention this at your clinic appointment because it is expected and they use different low key antidepressants when needed which is sometimes better started in last 2 weeks of treatment as they take a few weeks to kick in but do help once you are home in recouperation ,worth thinking about .

Thinking of you ,will soon be over and then recouperation will start and we will all be here with tips to keep you going .Let us know how you get on .

Bell.

This message has been edited. Last edited by: Bell,

Hi
Just to update - I didn't realise I hadn't moaned for so long!
Well treatment ended last Monday and it's been an uphill struggle since then. I lost my voice last Wednesday and it still shows no sign of returning. I have gone deaf in one ear - it will return when it heals apparently.
Face is improving gradually but still very sore.
Managing to get some shakes and so on down so no tube needed - thankfully I started all this way overweight! Yippee! Even though I've lost a lot of weight I had it to lose! I would heartily recoomenned JUST EAT to anyone preparing for radiotherapy - EAT anything you like as much as you like as often as you like!

Right now I'm feeling a little better as I slept better last night - and forced myself out of bed this morning - though I am now desperate to close my eyes.

Well just thought I would update - still feel pretty awful but better than I was - I did go through hell with my stomach. Let's just say I know how Elvis felt the day he died - I though I was going to too!

All the best and I hope I am feeling worse than you

Tony

Well done Tony!

Here's wishing you a speedy recovery. Make sure you get lots of rest.

Best wishes,

Cathy

Great news ,treatment finished what an achievement ,well done .Onwards and upwards now ,lots of sleep and loads of nourishment and water ,your voice will come back soon when healing progresses ,keep up the good work with the shakes and high calories .

Wishibng you a speedy recovery .

Bell.

Hi Tony,

Great stuff to complete the radiotherapy treatment. Things will get better in time. Be patient and give yourself time to heal.

One of the biggest mistakes I made was making unrealistic goals which I did not meet and this knocked me back emotionally.

Take care

Ken

Well done Tony! Take your time mending and don'tpush yourself too hard. The r/t continues to work for 10days after treatment so don't be too disheartened about your voice not returning yet. Must be so frustrating though! I think my family would consider that a huge bonus however lol
Keep up he shakes!
All the best for a speedy recovery

Hello again everyone
This time I come with a question rather than a moan - theough I am moaning really - in question form!

Since rt ended two weeks ago today - Hoorah! - I have had no voice at all - is this normal/ common? The hospital did not seem at all concerned but it is starting to concern me that there is no sign of improvement.

I know taste is altered by the rt and I am still on shakes and fortisip - yummy! - but I am trying to eat tasters - little samples - does anyone have any great tips on what actually tastes reasonable or maybe even just a little bit nice?
Shall I avoid stronger tastes or go for them? Or is just different for everyone? My mouth is still sore so I do not want anything hard - I've tried and it's not good!

All the very best to everyone and I hope I am in more pain than you are!

Tony

hi anthony

great to hear from you.Sounds as if things aren't too bad apart from the usual tx "gifts".

Diet is purely personal really its not a one size fits all more a pick'n'mix.Anything acid ( tomatoes)is best avoided as this will burn like hell,but maybe soups and gravy and mash are a good place to start.Its times like this i really miss Trevor as he had a menu plan second to none.As for the voice thats very normaland it will come back after a few weeks.

keep up the good work

love liz