Bad claustrophobia and not even started yet!

RadioactiveRaz said:

there was no way i could  move my head and my mask was extremely stable as it went over my shoulders and clipped to table  

 HenW029c53 

My mask covered my shoulders too. No mouth opening though and eyeholes were cut after I asked for them 

My husband couldn’t cope with the mask. So they cut out eye holes and made the mouth one  bigger. He just about managed it after that. Six weeks also. Might be worth asking.

Good luck

sue

I doubt if i will be able to have radiotherapy as I cant be held down cuddled tightly even a heavy blanket over me makes me start to panic and i have to throw it off. 
To tell someone like this to just not think about it is actually quite ridiculous. The only way I can describe it would be like telling you to not grab your hand back out of a pot of molten metal. That's the reaction to run .... so to be physically held down so you cant,would and has ( in my experience) cause life long trauma. 
I was injected at the dentist when I was 12 yrs old with a 'put you under injection' to take teeth out, and they missed the vein. When I had counted back down from 100 ( they said you'll be asleep by the time you get to 95) and got to 80 they said they needed to do it again... I tried to get up out of the chair and go as I wanted my grandma who was waiting for me and they physically pulled me back into the chair one of them held my head back against the dentist chair across my forehead and stuck me again.. this time i did go under screaming and kicking... I had 3 teeth out and woke up as Id gone asleep spraying blood out of my mouth covering the walls , me and the staff and punched the dental nurse unconscious.  Being held down, and unable to move whilst people 'do stuff to you' is not something some people can just 'put out of your mind with lovely visions of beaches and walks or from pretty lights or music playing' 
Given the choice, looks like I'll be dying quite frankly. 
And no I cant take sedatives they tried me with diazepam trying to get me in a scanner and that didnt go well at all as I have a very low resting heart rate and hrv so I cant take beta blockers or anything that lowers my 46bpm heart rate. 

Hi mand67b576ad 

You’re due Tors and a neck dissection aren’t you? 
Hopefully they will find your primary with clear margins and no cancer in any of the nodes other than the one you know about. In cases like this they often offer you close monitoring rather than radiotherapy so fingers crossed. 

thats what Im hoping wont find out until wednesday. but obviously I will be throwing my side into the ring when they discuss treatment ... Im hoping for TORS and watch and wait tbh. Ive already had the discussion with my othe rhalf that if the treatment is going to be too truamatic I dont think I'll bother. I know most people think being alive is everything but having suffered from mental illness due to PTSD and losing decades of my life to agoraphobia and GAD I cant do it again. Why go through that to have to try and get my head back in the right place for 5 yrs after, I will have run out of time by then to do anything even if the cancer doesnt come back 

I experienced exactly the same feeling when they made the mask and then did the CT. I’m not claustrophobic but the mask hit me hard. I had them cut out the eyes and part of the nose, this helped. I never opened my eyes at any point. I then brought my iPhone with me and kept it at my hip while getting g treatments. I would create my playlist the night before and play the music while getting the treatment. These all helped me. The saving grace was that the treatment only lasted 5 minutes and then I was flying off the table. I did get somewhat used to it after 2-3 treatments. 

HenW029c53 said:

So next week my husband is on hols and coming with me and they are going to give me some light sedation.

Hi. Have you managed to get this done? 

Hi Dani

I went yesterday. I had sedation which helped but didn't last long. I refused to try the without eye holes.

They cut me eye holes and that made all the difference and I felt more in control. I have a playlist called 'you can do it'! Some essential oil and a fan.

I managed to do the CT and my first session is booked for 15th.

Thank you, and everyone, for your support. It made all the difference x

HenW029c53 said:

I managed to do the CT and my first session is booked for 15th.

Oh thank heavens. You’ll do it. After a few sessions it’s not as much of an effort I promise. Hugs 

I feel much better about it all. I asked to see where I would be having treatment as well, I like to know these things in advance.

Because I'm having sedation, I've also got transport which is great because parking at our hospital is a nightmare x