OK, reality time, this mask thing isn't going to be much fun.
Today was a two part visit to the hospital. First part - make the mask. Second part - take the necessary scans to mark up on the mask where they need to point the nukes.
First part was freaky. You lie on a table (nothing resembling padding, so couldn't ever call it a bed) and they make you lie on this pad type thing that encases the area of your head and upper shoulders. Turns out this is full of air and other stuff that when removed moulds to your body. First thing customised for me. It feels a bit funny as it happens, but only take a minute or two and it's all over. This effectively becomes the underneath part of the mask assembly.
Next stage is actually making the mask. This is made of thermonuclear plastic. They warm the "blank" in warm water for a few minutes, bring it in, lie it over your face and stretch it into place. They make sure your nose hasn't been squashed by this and then proceed to finish moulding it for a good fit. At this stage I also have a plastic tongue depressor type thing between my teeth. Seems if they keep my tongue below the nuking, it is going to be a good thing and for mask making purposes, they need to allow for this gap.
And yep, at this stage, the thing is fastened to the table. This doesn't feel too bad because at this stage the mask is just like having a warm towel over your face. They next bring out some cold towels which they apply over the mask to start to cool it and make it set. Again, not overly unpleasant as the mask is still quite warm on my face. From start to finish, I am held down for 10 minutes or so. With about a minute to go, my famous gag reflex kicks in and the tongue depressor has to go. They're not overly upset by that at this late stage.
So, come 12:30 I'm dressed again and off to fill in time until I need to return at 2:00pm for the fitting and scans.
Duly return for my 2 o'clock to be told they're running 20 minutes late.
They're finally ready for me and off we go to the CT Scan room. At this stage, things start going downhill. First off - the mask is a bloody big unit. It covers my entire head and upper shoulders. I hadn't seen it when it was freshly moulded, so this was quite a shock. Secondly, the size of the mesh through which I can see is bloody small and looks actually non-existent in places.
Hey, I'm a big boy, we can do this. Now lying on another table and waiting for the mask to be placed over my head. I'm not going to lie. At this stage I freaked out. I'm not sure if it was the mask actually being clipped down that did it or I just had a panic attack, but once the mask was on I was fighting a feeling of not being able to breathe.
Obviously the mask needs to be a really good fit - and it is - but at that time the fit around my chin area felt too tight and I couldn't swallow properly. I know you breathe through your nose and/or mouth, but I just could not overcome it.
We tried three times, each time removing some of the packing, but it was no use. In the last attempt, we managed to break one of the clips, so the girls had to go and sort out replacing it. Helen and I stayed in the room and despite trying to calm me down, this attempt was over and we all knew it.
Liz came back and said they'd talked to Mr Wilson (the radio oncologist who has taken over from Mr Hamilton) and when he has a chat with me about treatment, he'll prescribe something to calm me down.
All sorts of feelings are going through my head at this time. Disappointment in myself for not being able to face the mask today. Trepidation about will I do the same next time. Worry because I know how important this all is to my treatment. And the realisation that there is going to be a number of things along the way I won't be able to control. This is indeed going to be a joint effort.
I'm duly bundled off to one of the consultation rooms to await Mr Wilson. I'm feeling really low at this point. I feel I've failed at the first hurdle and am struggling with that. anyway, Mr Wilson duly arrives, we talk about how I feel, etc and I'm given a script for a drug that will chill me out. Take a pill 20 minutes before the scan and chill for up to 3 hours. I'll give anything ago to get through this first one. Some other things might have had an impact on today and I'll eliminate them in future, but I'm really confident that once I'm past the first couple of sessions with the mask, I'll be alright.
Other tidbits to come out of my conversation with Mr Wilson. Every effort will be made to limit the treatment to the left side of my body, so the saliva glands on the right should largely survive, and it is possible that some of the left might do as well. The treatment will be over a large area to start with and narrowed down to very specific points as we work through.
Had a conversation with Wendie (oncology support nurse) when I got home and felt a lot better after that. She is going to try and get the district nurses to touch base so they can give Jake a once over.
All in all a crap day, but at the same day a very important one. I have to accept that this is bigger than I can handle on my own and it is time to accept the offers of help and support that have been and continue to come in from family, friends and concerned acquaintances. That revelation - and acceptance of it - on its own made today worthwhile.
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