Hi everyone

Hi 3DMan

Great that you’ve posted today we are all here to help and support each other x

Welcome to the club which nobody ever wanted to join …, You’ve done great to get through the mask fitting it can be very traumatic for some people.

Did you have any parts of it cut out ? I had eyes and lips as Im claustraphobic I also had diazapam ready for if Inneeded it at any point.

Lostening to music either your own playlist on your phone or asking radiothetapists to play your favourite radio station can be helpful.

There is never a daft question ( I asked loads)this is a lovely group of people who will share their experiences and knowledge to the best of their abilities day and night ( a couple of us are not great sleepers ).

One day at a time , once treatment starts for many of us the fears and anxieties seem to lessen.

Here when you need support

Debbie

T4b2NB MO HPV+ 8mths post treatment which worked!! 

Hi 3D Man, 

Thank you for sharing your journey so far. Hope you’re doing ok x 

I’m now two weeks into treatment and had to have adjustments made with my mask. I now have the neck cushion removed as my mask was squashing my entire face and making my mouth so painful. It’s so much better for me without the neck cushion. The radiographers are so good, they will do everything possible to make you comfortable. Like Debbie, I request music as it makes me feel relaxed and also makes the process a bit quicker. 

definitely one day at a time. Any concerns, you let them know and they will do everything to help you. 

Here for any support, any time. 

Denise 

Hi 3D Man welcome to our little community

3D Man said:

The missing bit that the medics can't easily offer is the chance to speak to someone who is going or has gone through the same process. I suppose once treatment starts that might change. Anyway, I think this place is invaluable in that regard

You've distilled the essence of this place with those three sentences.

The treatment is a real challenge but it's doable and more importantly curable. Stay with us. We help eachother

Hi Denise. I had my worst mask day yesterday. Really tight and claustrophobic so I'll ask for adjustments today. Anybody here able to suggest anything to help with terrible sleep please? I have, Peg fitted so am nervous to lie anyway other than on my back. I'm avoiding the anti-sickness medicine in the evening too.

Steve

Hi 3D

T2M1N0 HPV16+ tonsil cancer finished ChemoRadio June 2023....

It is a massive task facing up to the fact hat we have cancer....very lonely experience until we let the reality of the task ahead sink in ..our families, support teams and carers then become invaluable...

Tough gig ahead of you....stick with this forum....plenty of sound advice and support from others who have been through/are going through the same....

Please keep us updated.

Take care and best of luck

Peter

Hi Steve

Sadly sleep issues are pretty normal for many of us ( goes hand in hand with the cancer diagnosis)..

A very dark and quiet room are a good start I have silicone screw in earplugs and soft night mask.

Different things work for our unique brains . Talking therapy/Counselling or talking to friends family or the lovely people on this site help ( Dani and Hazel got me through my darkest times). You can also write down what’s on your mind before bed onto paper or notes..

Effective types of integrative therapies to try at bedtime include: muscle relaxation, biofeedback, imagery, hypnosis, and thought stopping.( listening to relaxing sounds can also be hypnotic) lots off apps online to try

Use deep breathing exercises to help you relax before bed 

Im a therapist and my insomnia is  horrific .you can buy online some gummies with high content melatonin they are good if you can chew /swallow..

My GP prescribed some Zopidem sleeping tablets which I take every 4/5 th night which give me a solid 5-6 hrs ( my friend gets 9-10 hrs on them) .

Definetly talk to your team about issues with your mask good luck with the rest of your treatment.

Debbie

Hi Steve

Sleep was a problem at times for me.....absolutely necessary to have a decent sleep to aid recovery....my GP prescribed about three short low dose courses of sleeping tablets (Zopiclone) ....helped me get the sleep I needed....sleep patterns are back to natural cycles now...1 year after finishing Chemoradio

Peter

Hi 3D Man, welcome to the group. You are right this is a safe place to air your concerns, you are free to ask anything on here, we are all here to help each other. We have all been through or going through this, so we know how it feels, it does seem a very lonely place. Once your treatment starts you will feel a lot better about it all. Ask as many questions as you want, someone will always, come back with an answer if they can. Stick with us.

Ray.

Hi and welcome from me.  Whatever happens we are here for you with tips and tricks to make this just a little bit easier.  Just shout out and you will get lots of answers.  We all react to this treatment differently despite it being a very similar treatment for most of us, so someone will have some good advice.  As to the medics, you will probably find that once you get into treatment the radiographers will become your best friends and the conduit to further help if you need it from the hospital.  Don't be afraid to talk to them and really tell them what is going on.

Hi Steve, make sure you tell them how you’re feeling. They really don’t want you to feel uncomfortable or in pain and will make adjustments to help you. I initially had some of the neck cushion removed but it was still too tight, so they removed the cushion completely. 
I have a terrible time sleeping mon - wed as I’m taking such a hit with so many steroids. By Thursday exhaustion kicks in and I hit a wall. 
I can only sleep on my right as I have a pic-line on the left arm. 
Let your team know of all any issues you have and they will help. 

take care