Head and neck mask problems

Hi Sara 

si sorry you’ve had to rejoin the club none of us wants. I used to take my mind in a walk or favourite bike ride while having mask on. I had nebuliser used it at least 6 times a day plus a humidifier in bedroom at night   I was also given carbusistine to help thin.  the mucus. 
Fir the 2 nd cancer was it jump in the neck or something else that altered you.? 
you’ve done it once you can again. 
was your original diagnosis h p v ? 
Hazel xx

Hi Sara. So so sorry this has happened to you again. We all look at this magic five years as a "cure". Were you HPV +ve?

Hazel has mentioned carbocysteine... it does help some people so worth asking for. Similarly with the nebuliser or even hanging your head over a bowl of hot water which is what I did.

Another thing worth considering is a mild sedative"

Have you got eyeholes cut in the mask? I found it helped reduce my stress being able to look around and take my mind off my clogged up throat. The last two weeks of my treatment I had to have a good cough and spit before being clamped down. Please don't worry about taking up their time or anybody else's. They want to get you better and to get the treatment done and they will be focussed on you entirely.

I hope you can find a solution to this

Best wishes 

Hi Hazel,

Thank you for responding so quickly. This is the crazy thing I’ve done it before but this time for some reason my mucus is so thick I couldn’t get the swallow to clear it and it just kept building up but it happened 3 times where I stopped the machine and then they decided not to continue. 

2015 tonsil cancer T3N0M0 SSC right tonsil removed 30 sessions radiotherapy.

2020 left base of tongue T4N1M0 P16 positive - 30 sessions radiotherapy started 08022021

I will take a read of your blog and sorry you’re here too - really appreciate you sharing and will get some amazing holiday memories ready for tomorrow’s sessions - sometimes it’s the simple things that can really help.

Thank you

Sara x

Hi Dani,

Thank you for responding. I’ll definitely take your advise too it’s just so frustrating that I’ve done it before but this time not so easy for some reason.

Five is the magic number for us all - I’m now on to my next five which I’ll definitely be fighting for.

Congratulations on your recent 2 year anniversary too.

Thank you
Sara x

Can I just ask how they made the decision to do more RT? I was told it was a once in a lifetime thing. 

Hi Sara

we’re all in this together if any of us can help or you want to rant just shout out. Hope tomorrow goes better for you. Don’t worry about the time it takes  do hope tomorrow s a better day. Try the hot water and towel to clear if you haven’t got nebuliser cues we love our holidays xx

Hi Sara,

i had 30 sessions RT for SCC back in July/August 2020. I wasn’t given the option of having the eyeholes cut of my mask, and so my eyes were always shut tight. For the few first sessions I sang to myself the same song over and over again,  Elbow’s One Day Like This (the background music is often heard on TV and was played a lot for the London Olympics). Then further down the line when I started suffering with nausea (I had 2 lots of chemo) I started to panic a bit thinking I was going to vomit and as I was unable to move a single muscle under the mask I’d think I’d end up suffocating on my own vomit!  Of course it didn’t happen. So from then on when I arrived at the radiotherapy suite I’d first pop to the loo and gargle with the Telladont tablets that the HNC nurses had given me to help get rid of some of the mucus, then just before lying on the table I’d take a sip of water and ask the radiographers if they could switch some music on, I didn’t mind what it was as long as it was loud. I had to laugh when one day Tom Jones singing Sex Bomb came blasting out. In the end it was having loud music that helped me switch off.  

Hi Dani,

They originally said radiotherapy wasn’t an option as like you say it’s a once in a lifetime thing but because it’s too large to remove without causing totally life changing circumstances felt this is the only real option of some kind of cure. We talked about having chemo but will only possible shrink it rather than cure but dependant on how things go with radio may also consider. immunotherapy was also looked into but biopsy didn’t respond.

Sara x

I’ll be shouting for you. Good luck Sara and thank you for sharing that. It couldn’t have been easy. 

Hi Rhonda,

Thank you for sharing your tips that got you through. Definitely be getting the music turned up louder even if it Tom Jones..lol!

Hope you are doing well with your recovery and wishing you a very speedy one so life can get back to normal. 

Take care of yourself.

Sara x