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 Robin and Liz

I arrived at this site by a poster and I must admit it’s been brilliant on question and have had must question answers.
I think must of us who been through Radiotherapy have had summarily problems but as I found out some people seem to be worse then others hence they don’t tell you much before they start treatment. I can only give you my symptoms I had: The 1st 2 1/2 weeks where fine no problems at about 14 sessions I started to get mouth ulcers, by session 21 I couldn’t eat. It was at about this point I started to feel exhausted, and started to sleep a lot (16 hrs a day) As for my skin I used the aqueous cream plastered it on 4 times a day and I by the end of the treatment It was just like a bad day in the sun.
As for the pain the kind people on this site told me to see the Doctor and get oral morphine, for the pain. And no you don’t get addicted I came off it just like that.
I think the biggest issue is it takes weeks after treatment before you start to feel well again. I finished end of December 06 and only just starting to eat. I feel fine otherwise. Do have a read thought the site your find lots of you questions answered. Have a read through Robert E (04 Nov 06) might help.
As for the 15 min sessions no pain at all, no flashing lights or anything just silent and deadly.
It is a drawn out treatment and it does wear you down.

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>>

Hello Liz sorry to hear you have to deal with this treatment, because you will be almost as involved as your husband.
Rolf is quite right. It takes at least as long after the treatment to begin to feel ok. I'd say 6 to 8 weeks before beginning to pick up. Many underestimate this because docs say you'll have two bad weeks after rads and then start to get well. They forget to say how slow it is - it takes longer. 3 steps forward 2 steps back.
He should not use any product with metal in it. So any preparations/creams with things like zinc, copper etc., on the list should be avoided. Hair shampoo/soap must be baby shampoo unless you are told differently. Also get in a baby toothbrush and sensitive toothpaste. I did take in various products I wanted to use but they insisted I stick with the baby stuff.

Like your husband I am also very fair and have never taken to long sessions of sunbathing which turns out to be a blessing in disguise. At first I was told I would have 36 sessions. When it came to it some weeks later I was given 30. The oncology specialist took one look at me one day and said I think you've had enough and we'll stop at 30. So I trusted her judgement, but often wondered what another 6 might or might not have done. We all seem to get different numbers of treatment days, but I think most people have between 20 and 42. Treatment types are also changing with some people going for new regimes now. In the old way I have not read of many having over 36 sessions. As they know where your husband's primary is they can target that little bit better. Each case is assessed differently.
What everyone forgets is that it is a comparatively very slow build of burning. I agree with Rolf the treatment itself does not hurt, but emotionally it's a lonely experience when your head is bolted to the table and the radiotherapists leave the room for only a minute or so.

After a day or two treatment Robin may start to feel uncomfortable and especially within an hour or so just after a treatment. I found drinking a pint of water before treatment helped and drinking water straight away after helps too. Always have lots of water by phones etc., and in manageable bottles in the car - never be without it. A head covering can be kept in the car for days the sun decides to beat down through the car glass asthat can irritate. Cut labels out of shirts and keep to soft fabrics without edges that can rough up the skin.

Eating is different for everyone. In weeks one and two foodstuffs soon go really off tastewise, but by the time you reach week 6 you think back and week one and two was glorious on the food count by comparison even if things did taste like glue they did go down! Just go with your husband and let him eat anything he can get down even if normally you'd think it unhealthy. I am not into ready meals or tins, but you know they were a boon, especially single portions I might only have had a quarter or less at a time. Home made stuff tastes every bit as bad as ready prepared foods during treatment. Rice pudding and porridge become life savers. My husband never said you must eat or nagged about it. He somehow understood I loved my food so much that if I could have eaten I would have. That saved my sanity. Your patience will be thoughtful.

Good luck. I can only reply to you because radiotherapy has given me extra years - 4-1/2 to date. Being occult it was my only chance. So like most here we do what we have to do to take the chance. I hope this helps. With your support he will be fine. Lots of other members here will have more recent recall on the treatment and I'm sure they'll respond soon.

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

Hi Liz
I've already responded to this question against your other post.
Having read the replies above, it just goes to show how differently we all react to treatment!

Thankyou so much for your replies to my message and i must apologise for putting it in two diffferent places.I didnt see the introduce yourself board till after i had posted in general!
It absolutely amazes me how no two people seem to react the same to radiotherapy although the basic problems do seem to affect everyone eventually.Is this because of your pre radiotherapy state of health or that some people have lower doses in different areas?Will Robins problems be greater because it will all be targeted into his mouth and jaw? He was in hospital for two days after his bilateral neck dissection and took nothing stronger than soluble paracetamol and neurofen.He was working again after two weeks and is at present back full time although not doing anything heavy.He suffers with a claggy mouth as he had his left saliva gland removed,his appetite is good and he has regained a stone of the weight he lost before his operation.To be honest his only complaint is a sore jaw for which he still takes paracetamol.
My biggest worry is his inability to be "poorly" and i am very worried he might abandon treatment if he feels too bad,So lets hope he is one of the lucky ones,and if he isnt you may see a lot of messages from me!!
He has also given up smoking and is using patches at the moment which is a cause of some confrontation!!!!!as tradesmen pubs beer and smoking all seem to go hand in hand.Still his heroic efforts have sparked a rush of people determined to join him,and comparing where you have your patch is the new subject over an after work pint.Will lager hurt his mouth do you think?
thanks to you all for your informative replies and i look forward to having people to share the weeks following the start ofhis treatment on march 1st.
liz

Hi Liz,
I too felt well after my neck dissection after I had left hospital. Although I nwas in for 2 weeks as I had compilcations. I was told to put on weight in the gap before radiotherapy.as I would lose weight - how right they were! I finished in Sept and still continue to watch my weight as I still have a tendancy to lose if I don't put the calories in! Have you discussed having a PEG? I am so glad I did as it took the trauma away of eating when I knew i should but couldn't cope with the faff and pain of it. I could only drink water- most essential. I doubt that lager will be palatable or even be able to enter lips without hurting.
I could drink guinness in December and now can drink white wine with water. Oh for a nice glass of red wine!
Keep smiling Anne

Anne
I know what you mean, I also long to enjoy red wine again. I try a glass now & again, but the tanin is too much.
Cava & champagne are fine, as is beer.

Liz
There will probably be a period of a few weeks where lager will not be nice for Robin, but we're all different so wait & see.

Liz,

Your husband will need some pain relief midway through his treatment. I will always recommend Fentynol patches. They work wonders and you do not have to swallow like you would with a pill.

This will ease his pain which will in turn ease your pain.

Best Regards,

Sandra

Liz,

I'm not sure if the patches are used in England. It is fairly common in the UK to prescribe Oramorph, liquid morphine, for pain relief during the treatment of head and neck cancer. I was given nearly all of my medications in liquid form to make them easier to swallow. Hopefully your husbands treatment won't require strong pain relief, but do remember to ask for it if he needs it.