Would welcome advice on how to prepare for radiotherapy

Hi Suzie.  There will be lots of good advice to follow.  However:

• Get a good support mechanism in place to get to and from hospital and do the daily essentials that you won't feel up to after a while - and remember this needs to continue post treatment.
• Personally I would advise being prepared for PEG or RIG feeding before treatment starts.  They can do NG during but you will be in crisis by then rather than being prepared for the eventuality.  Get trained on the cleaning and feeding as soon as it goes in.
• Recognise that you will need lots of rest for a long while.
• I purchased a nebuliser and saline solution from Amazon.  I also purchased a humidifier.  Both of which helped greatly.
• Get some salt and bicarb ready to make a mouthwash
• Take all meds by rote even if you don't think you need them
• Work out a system to record the meds so you are remined and know you have taken them.  I used an app called MyTherapy
• Don't be scared of the heavyweight painkillers.  They are your friend
• Make sure you're comfortable in your mask.  Ask for any changes needed.  They may say no, but at least you know why.
• Think about your sleeping arrangements.  A wedge pillow may help. Maybe separate bedrooms for a while (if appropriate)
• Make friends with your RT team and dietitians - they are key to sorting you during this time.  Don't be scared to tell them every little thing that worries you.
• Have a laugh with people.  I don't really remember the traumatic bits of my treatment (the brain has blocked them out) but I do remember the laughs I had with people as I went through treatment and into recovery.
• Finally enjoy food if you can right now. Eat whatever you like.  There will come a time when taste and ability to eat changes and you will regret not having that super hot curry you love if you end up like me not being able to stomach chilli any longer!

Hi Suzie.  Glad you are recovering well from your surgery.  I had 7 weeks of radiotherapy back in 2013 and there were a few things that helped me prepare.  I used to practise lying still on my bed with something light covering my face to give me an idea of how it might feel on the radiotherapy table.  I like visualisation meditations so I got some of them ready.  I found that when I went for the radiotherapy that it comforted me to have my own things with me.  I took my own gown, slippers and blanket.  I was allowed to take a CD to play (Bay City Rollers Greatest Hits) and I also took my teddy bear, who accompanied me to all my treatment.  

Suzie1972dfe140 said:

looking for tips

Not much to add to Peter’s excellent essay but there is a thread here you might find useful

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/287136/helpful-tips-for-those-about-to-start-treatment

Thank you, Peter. I asked if I would need a PEG at my initial appointment with the oncologist but he said no. But you seem to think it’s inevitable? Also, about meds, did you get prescribed them alongside treatment or just as symptoms developed? And are the nebuliser and humidifier for helping with sleep? Thanks again for detailed response x

Suzie1972dfe140 said:

meds, did you get prescribed them alongside treatment or just as symptoms developed? And are the nebuliser and humidifier for helping with sleep?

I was given mouthwashes, Caphosol Gelclair Difflam plus cocodomol and laxido ( opiates slow your bowel down so you get constipated) right at the start. Then oromoroh when I needed it followed by long acting morphine when I needed that 

NG tube at the end of three weeks. 
when your mouth gets dry a humidifier helps. Later on when you get really sticky saliva a nebuliser helps thin the mucous. I managed simply steaming my head over hot water with a towel around my head 

I think almost all of us need some help with swallow by the end of treatment.  Many need it from week 3 onwards.  A very few get through without any help.  I managed to eat until after the final RT session then I went onto PEG feeding for around 2 months.  Realistically I was just being stubborn which did not help my recovery.

Some meds will be prescribed as you go through treatment because they are needed, especially if you are on chemo.  Others like painkillers will be prescribed in response to how you say you are feeling.  Wherever possible try to get liquid forms of the medication.  I was on paracetamol for the first 3 weeks then went onto opioids and finally patches as the pain ramped up.  Both the nebuliser and humidifier helped with sleep.  The humidifier really helped me with managing a dry mouth through the night and the nebuliser cleared mucus - not that I had much of that compared with some people.

What I failed to mention earlier is get some creams in - I was recommended E45 and aloe vera gel for my  neck to counter the radiation burns.  These worked really well.  Looking back I would also have moisturised my ear canal as I have developed eczema in my ears as a result of the RT and have to do that constantly nowadays.  Check with your radiotherapy team about moisturising as it can affect the treatment if applied too thickly at the wrong time.

Hi can’t add much to peter  and Dani s top tips. Remember your radiotherapy team are your first point of contact tell them straight away any issues. Don’t be brave take the meds. Keep off  dr google you’ll scare yourself sgd keto on there. We’ve gen theee done it so to speak. 
tick the days off in a calendar and thus time next year it will be a distant memory. 
hugs 

Hazel x

 1.They may remove couple of teeth, to prevent infection.

2. Get  a PEG fitted, so you can get nutrition.

3.The mouth ulceration will hurt a bit, so get 30mg dispersable cocodamel and some oramorph and feel free to take them.

4. If you feel that you have a slightly ‘sunburned’ feeling neck, get a prescription for a cream from your consultant pronto, try not to worry about it because it goes.