Hi everyone

Thank you everyone for the very warm welcome.

Debbielouise On the third attempt they cut out the eyes and the mouth - it made a big difference. The biggest difference was with the head support though - on the first attempt it wasn't supporting my head, only my neck. Getting that right was a huge change in how it all felt.

Nise247 Your experience seems very similar to mine. My lips were squashed against my teeth and that was quite painful. My new mask has all that cut away. It is still difficult to talk abut at least the pressure is no longer there. I'm now working on a playlist!

Thanks Beesuit I've been reading more since I posted and I'm feeling a lot more informed about the good and bad to come.

62somerset I feel for you. I had two panic attacks in the first two sessions with the mask preparation (not treatment). I've now got most of the face cut out and a better fit to the neck and the back of the head which appears to be crucial as when the mask cools it contracts slightly and then the clipping to the bed can make it really tight.

Thank you Peter E I know that there are going to be tough times ahead but posts like yours are reassuring that once through the treatment things improve.

old biker Thank you for the welcome. I plan to stick around for the duration at least. It's really helpful to hear everyone's stories - especially the variety of experiences.

Thanks PFJTHS  I start in 10 days and I'm sure that will be another learning experience. A good point about the radio team, especially with daily contact, being a good source of help.

Hi Steve, 

bless you, the radiologists are very good and really don’t want you to feel either any pain or discomfort and will help you. 
Sleep wise, I have a pic-line in my left arm and can only sleep on my right. Mon-Wed I am on 4 steroids and literally can’t sleep. By Thursday, I hit the wall with exhaustion and nausea. Anti sickness tabs give me both hiccups and wind. 
My mouth is getting very sore with radiotherapy and quite tight and swallowing is a bit sore too. 
I have been prescribed liquid morphine and liquid co-codomol to take intermittently. I also have been prescribed Duraphat toothpaste to help with gum issues. 
Having said all of that, the whole team at my cancer centre are amazing and call me regularly. I have also been offered therapeutic services and have opted for talking therapy and acupuncture. 
Steve, as you begin treatments, you will be given so much support to help you and you will be amazed at how much will be provided . This is one journey none of us wanted to take but your hand will be held by everyone, including here on this forum. 
All the best Steve. 

Denise  

Hello 3DMan, just popping up to echo what others have said - welcome - and to offer my positive story. Sending you love & luck

Catriona

Sleep alluded me till I came off steroids. Then mucus took over till I got a humidifier. Only then, two months post treatment did I get a decent night sleep 

Welcome 3D Man, 

This forum is a complete godsend with some truly amazing people  we are and have been going through this most awful of diseases and fighting battles together. I never knew about head and neck Cancer at all and was in total shock finding out.

I cannot believe at the age of 14 having my tonsils and adenoids at at RAF Horton where my late father was posted and being a daughter of a RAF family I was able to have them out. 

I learnt from ENT Consultant that tonsils and that area can be greatly affected with SCC and mine was found in a small remnant in my left tonsil fold which went into my left back of tongue base complete madness. I always had problems with my throat and was forever off school with severe tonsillitis and would have sweeps of Larangytis, always been unlucky. I never smoked and had the occasional social drinks and special occasions.

️I'm.so glad to read such positivity on this forum and I'm holding onto the fact that I will get through this. WOW Shortbread!!!! If only. I have found that potentially I could lose my taste and facing problems with eating really daunting as being a Chef this is not easy feat and having to literally taste everything and not poison anyone jeez, praise the lord that people can taste for me

Keep it up

Sarah xx 

skft said:

small remnant in my left tonsil fold which went into my left back of tongue base

We have lingual tonsils at the base of the tongue. They don’t take those out when you have a tonsillectomy. The tissue is too diffuse. Thats where mine was 

Got confused lol   thanks for that, sorry chemo brain 

Xxx

Hi 3D Man, I had hypnotherapy to help with claustrophobia and eye holes in my mask. Positive thinking really helped me. Thinking of my mask as armor, holding me tight and safe and protecting me. The radiologists and music really helped too. All the best. Liz x

Thanks Liz. I've just had a hypnotherapy session and I've another planned for the weekend. It is coming clearer that this is all about getting my mind into the best state to tolerate the treatment. Logically I know there is no threat but the flight/fight response still kicks in. My current philosophy is that if the mind is strong enough to scare you then it is strong enough to get you through it too. Like hair loss with this kind of treatment maybe your taste buds will grow back curly ready for new adventures!

Hi welcome from me sorry late to the thread. I’m 6 years post treatments hard but if I can do it anyone   can I’m a wimp or I was a wimp

blog below might help

hazsl,