Hi my name is liz and my husband Robin is 44 years old and about to embark on the roller coaster ride that is radiotherapy.He was diagnosed with primary scc of the right side of the tongue and a secondary tumour on the left side of his jaw and neck on December 8th.Since then he has had the primary removed with laser therapy, had a bilateral radical neck dissection and removal of the secondary tumour.This treatment is being finished of with six weeks off radiotherapy to both sides of his mouth and the floor.This was decided to be the best treatment because tests and scans have not revealed how the cancer spread from the right to the left side so they do not actually know if they have got all the cells.I am a long since retired SRN and have read a great deal about radiotherapy and i would be very grateful for any tips,help and advice on how to deal with internal and external side effects of this aggressive treatment.
Robin is a blue eyed fair skinned red head,will this make skin damage worse?What are the best cremes and lotions to use,what should we avoid?How long before eating becomes difficult .Does it hurt? will he be able to work?(he is a plumber)i have a million questions maybe someother peoples experiences will help me to help him.I would be grateful

Hi Liz
I'm 50 & had surgery last August for tonsil cancer (including neck disection). This was followed up with 2 chemo sessions and 6 weeks of daily radiotherapy.
As you will know, the radiotherapy itself does not hurt at all. I found the first 3 weeks to be no problem, then started to get dry mouth & sore throat. During the last week the skin on my neck broke down and I was in a fairly sorry state. Fatigue also kicked in for the last couple of weeks.
Once the treatment stops, it is not over. Robin will still feel fairly rough for a couple of weeks afterwards as you only recover slightly quicker than you go downhill - but you do recover.
I had a PEG tube fitted before the radiotherapy & this helped a lot. Was presribed "Ensure" to use with the tube, these can be taken orally as well. It meant I didn't have to eat if I really didn't want to. Things that I found were good to eat included very wet wheatabix, sliced bananas in custard, yoghurts, Nestle "build up" soups (from chemist) and drinking milk.
Good luck!

Day three of radiotherapy and his neck is bright red and the roof of his mouth is so sore he couldnt tolerate branston pickle today.He hasnt eaten properly for days because his jaw is so stiff and is in agony with the neuralgia.But he still insists on getting up every morning and going to work which is physically demanding(plumber and central heating engineer)At the moment he is doped to the eyeballs and asleep.My eyes are burning from sitting infront of this computer trying to find answers and solutions.I have used every bit of advice given by people in this forum and the OCF bought every cream, supplement and tablet recommended but the feeling when you realise that despite everything you try to do its like trying to hold back a tidal wave is absolutely suffocating.Why did this have to happen so quickly?_

Hi Liz,
I know exactly what you mean. Everything that you have written could have been written about my husband Robert. Robert finished his treatment at the end of November and unfortunately for him he also suffered from the effects of radiotherapy after just a couple of sessions. The consultant said he had never seen such a bad reaction to the treatment. I tried everything advised but eventually Robert was admitted into hospital. It's particularly difficult when you feel so hopeless and all you can do is watch your partner suffering more and more each day. A couple of other men were also having radiotherapy for mouth cancer at the same time as Robert and I just couldn't understand why they didn't have such a severe reaction. The consultant said that he must have very sensitive tissue. On the up side, after just 5 months from diagnosis Robert was given the all clear. The consultant said that we shouldn't have expected anything less really considering the reaction he had had to the treatment. I think we just have to accept that people react to the treatment to different degrees and there's not a lot really that you can do to prevent it all, just be there to help treat the effects. I ended up having to have 6 weeks off work to nurse Robert when he was quite ill. Bearing this mind, next week we are off to the West Indies to the cricket World Cup which I would never have thought would be possible a couple of months ago. Just remember if the treatment is having this effect on the outside imagine what it's doing to that cancer!

Hi Liz,
I had 6 weeks of radio therapy as well as 6 cycles of high dose chemo. I sed the Radiance Skin Gel from the Bristol Cancer Centre forum before, during and after my treatment. My skin is Casper white and was told this would make no difference to treatment. I suffered minimal burning, and what i did receive lasted onlyu week before it healed. This gel can also be used on the gums.
Hope it helps!

Link to previous posts on: Radiance Skin Gel.
It appears to be helpful for some users.

Hi Cookey,
I Know how difficult it all is but please make sure that he does his Jaw/swallowing exercises several times a day. Otherwise when this is all over it will be difficult to open the mouth especially for the dentist! Eating will also be a problem. I still struggle to get my mouth round a banana! (no smutty jokes please) Yet my consultant says how good my jaw movemnet is and how easy it is for him to examine me.So what must other people be like?
Anne

Just wondering how Robin is coping with his treatment?

Hi Pauline
We are at day nine ,and every worst case scenario has happened.His skin started burning from day two,and his mouth is now a total disaster area.As i said in previous posts he was having trouble eating because of jaw stiffness.This and the neuralgia have completely cleared up which may be a result of the medication they prescribed or i wonder if it is possibble the radio therapy has killed off the nerve again.He has no skin left on his cheeks or tongue ,and is expectorating the most vile discharge through his nose i have ever seen.He has eaten nothing at all for days and has lost 5 kgs this week.On Monday i actually went in with him to see the radiologist ,and told him that we needed to see a dietician urgently,and also about his mouth burns.They gave him Difflam,and on Tuesday we saw the dietician and the Doctor.To cut a long story short,he is now on Oromorph 4 hourly,Soluble Paracetamol every 4 hours,Diclofenic three times a day Asprin gargles three times a day Difflam mouthwashes every three hours,Fortisip and Build Up and Aqueos Cream for his skin..We also have Stemetil in case he feels sick.!!!!!!On top of all this he is still trying to work six hours a day.So basically that is how he is getting on.The emotional roller coaster goes on and on ,and the really worrying thing is we arent even a third of the way through.
Thanks for your concern..

hi Cookey i was also a Plumber and awaiting rad/chemo alough had surgery 1998. My wife Susan would be the one to talk to as she looked after me during and following surgery she as a fantastic memory of what happend

Cookey it is a difficult treatment for many of us. I don't think the average member of the public has a clue about the radiation treatment when its to the head and neck. I was told by the oncologist radiotherapy to the head and neck is the most difficult place to have it.

Weight does fall of you during this treatment. I think by the end of the second week he will be feeling even rougher and yes its impossible to get through it without medication for everything including the nausea and gastric reflux. If he has reflux/heartburn they can give him some granular medication that can be drunk.

I am not keen on Difflam and find it actually burns my mouth and throat. Among the medications, I was given Oraldene to use from day one or two as a gargle often. The second time I asked and was told to dilute it with water. The first time I used it full strength by mistake and it was much too strong. Sensitive toothpaste/ baby toothbrush will help, but I think it just all became token cleaning according to the pain that day.
You don't mention Nystan - he should ask for that for prophylactic use before the thrush appears. Ever since then I have some in my drawer. I've found Nystan/Nystatin is one of the best soothers for mouth problems - when you can get some for him next time its best to let it stay in the mouth as long as possible before swallowing ( some spit it out if they get tum problems with it) so it coats the mouth ulcers. I would use it after I had taken the Solpadol oramorph etc which also mkes the mouth a little more comfortable.

I found there was point a few weeks in when the mouth ulcers seemed less cruel - I've never been sure if this was because they were healing as radiotherapy continued and in spite of it or if I had become used to them. Without looking at my diary I think I found week 3 the worst.

He may also find sleeping propped with pillows will help the breathing/phlegm problems which are really grim with this. Indescribable gunge that you wonder where can it come from - it like a horrror film seeing some of this stuff.

From 3pm yesterday rob seemed to be drowning in a sea of gunge!!!!!Every thing he put in his mouth made him choke and by bed time he was very sorry for himself.He had the worst night yet waking every hour or so feeling as if he was choking on the mucous .today sees the first day he has given in and not gone to work

Poor Rob...
And it must be so hard for you to see him so rough. There are some very dark days through treatment. There were days when i just wanted to drift off and not wake up.
Please believe and hope that it will get easier. For me that time came 8 weeks after treatment. And at times i thought it would never happen.
It would be good for Rob to rest up. Its how your body repairs. And work is too much preassure at a time like this..
My thoughts are with you both

Got to agree with Chelle. Get Robin to forget work for now and concentrate on becoming well. This is a full time job being treated, medicated and resting.Please make sure that he takes adequate laxative now he is on morphine and solpadol.

And tell him he has done really well to have worked for 2 weeks of treatment.

I'm amazed Rob managed to work as long as he did before resting - he must have a lot of willpower!