Starting four weeks of radiotherapy

Hi @Temple 
It's weird when you finally find the thing that is your personal deal breaker, particularly if you can generally describe yourself as a stoic. 
I learned a little trick a few years ago that I employ whenever I have to sit or lie still and endure something when every atom wants to run screaming from the room. It's a counting 'game' which, of course, doesn't suit everyone's temperament.
Start at 27 and count backwards. Then backwards from 26, then 25, 24 etc. One number per slow inhalation and exhalation. If you forget where you are up to, you have to start again. Make those breaths reeaally slow and it can take up to 45 minutes to complete a full cycle. Why start at 27? Dunno, just because. Anyway, it works for me.
Another suggestion is to wear a cloth eye mask, you know, the airline type ones. It's head in the sand stuff but I find it cuts another level of stimulation out which helps me calm down. I can't tolerate music --particularly when I'm being shoved into the jaws of some diabolical machine---so I demand it's turned off. This has caused untold confusion on occassions but too bad.
Then, when everything is over, I spend a few minutes screaming in the car on the way home.

Hey @Temple,

I am sorry to hear you're having such a rough time.  And yes, absolutely it depends on who's running the show.  Some are insensitive dicks that have been doing their job for far too long and some just don't know what it feels like to be on the other side.  
You're definitely not an idiot and most people assume that if you are paying for something it's going to be better than the public system.  That's a normal thought so don't beat yourself up about it.  
Seriously, I had someone bring birthday cake into the MRI room for another staff member and not even look at me. It was like I wasn't there.  I had some very choice words to say to the manager and explained how it feels on this side.  True story birthday cake lol.
Regarding the radiation, or anything else for that matter,if you don't understand you must ask.  It is very easy to get swept along through the whole thing.  If your not happy or are confused about whats going on keep asking until you have all the information you need.  
I did six wks of rads and I found the biggest pain in the ass was driving there everyday.  I had minimal side effects.
A little strategy I use for nasty machines,cold caps, cannulas, whatever, is to think of a song and try to remember all the words from start to finish.  I used American pie as it's a bloody long song and by the time I restarted it in my head a dozen times it was nearly over. 

Your gig, your rules.

I hope things improve for you lovely. It can be incredibly frustrating and upsetting.
xoxoxo

The money thing is just a broader systemic issue- I have already incurred $7000 in out of
pocket expenses before radiation even begins. I’m not paying anyone to discuss sunburn or tiredness with me. Hoping if I go through with it, I can minimise contact with staff, make it fast, and come and go without pointless conversation and
delay. I’m too scared to be overly patient or communicative. Frankly stuff all they can do anyway. 

@Temple - so sorry to see you here - the forum is a great place to get emotional support & ask those questions we forget to mention at our appointments!  Grrr  We all 'get it' cos we've been there, done that!  Feel free to vent on any subject too - it really does help release a lot of the pressure!

Where abouts are you? Just City/Town (you can add it to your profile for others to see) - as some of our members may know of specific groups or services that may be available to you there. 

When I was going thru my treatment, I had lots of big gap payments (I had my surgery private and even had $500 gap in my pathology costs!) . The Hospital Social Worker arranged for a one off payment of $400 to go towards my 'utilities' at home (power, rates etc) and that was a big relief, after being $6000+ out of pocket.  My radiation was in the public system & cost nothing.

It sounds like you've already had your surgery, if you are about to start radiation.  Try not to be too scared of the radiation - most of us find it a lot easier than we 'think it will be' - almost a walk in the park - compared to the surgery & those doing chemo.  Just make sure you get lots of lotions to apply after each session and let them know if your skin gets too red or starts to break down (usually towards the end of treatment.) 

Take care xx

I felt affirmed for the first time
reading your honesty as it’s how I feel
especially the waiting and the machines. And the cost -
tests ordered all the time.