Keeping my hair thru Chemo

Hi all,

I've just started chemo again for Breast Cancer. This is the second time I've done it; I also had breast cancer back in 2002. 

Then, I lost all my long hair, which I actually found to be the most distressing part of the whole process. It took literally years to grow back to the length it had been, and I didn't feel truly like myself until it had. 

This time, 2 weeks in, I still have hair! I used Penguin Cold Caps, which cool your scalp enough for the hair follicles to be protected from the Chemo Drugs (I'm on TC.)

While I'm thrilled that it works, it's really disappointing that  no hospitals in Melbourne offer it as a service (as far as I can tell, the only hospital in Aust is the Mater in Syd).

I'm really lucky my oncologist said it was OK for me to do it, and the nursing staff are allowing it, but it means all the organisation of hiring, refrigerating and the fitting them (a new one goes on every 20-30mins) is up to me and my lovely husband. 

From what I can tell, the hurdles for hospitals would be something like this; they are too labour intensive for the nursing staff to change them on top of their other responsibilites. So the patient would need to arrange their own support person. If that person puts them on too cold and causes an injury, the Hospital wouldn't want to take responsibility. If they are fitted incorrectly (not cold enough, not consistently close to the head, not for the full length of time required etc) and the hair falls out, again the Hospital wouldn't want to take responsibility. Getting them cold enough (-35 degrees, which is colder tha a standard freezer) requires either an (expensive) medical grade freezer or some logistics involving dry ice and eskies.

So hospitals put it in the "too hard basket" and we are not even informed that in many cases it's actually OPTIONAL to lose your hair. 

I wonder if this will ever change? I know a set of caps were donated to a large hospital in Melbourne, but they aren't being used by anyone, because it's all too hard...

I also know someone who changed hospitals mid treatment because the hospital she was at was not allowing her to use the ones she'd hired. 

How can we change this? Maybe its just a matter of more of us arranging our own, and asking for hospital provided Cold Caps until there's a groundswell? 

Keeping my hair really is crucial to my sense of well being. While it's certinaly not life saving, it is actually vital to me feeling like myself. 

Has anyone else tried them? What were your experiences?