So unsure

Zoffiel

Picc or port sounds like a good idea. Who would have thought we'd come to the point where having a plastic tube inserted to facilitate the administration of poison is an attractive option. Cancer sucks.

Anna Louise

Yes it does suck. So to does losing your hair. Do the cooling caps actually work and if so why are cancer patients not offered them?

primek

Not all cancer units have the cooling caps. Mine has only just got them.

Zoffiel

The technology for the caps is newish and expensive. On top of that, the results vary wildly. There are ladies here who have retained full heads of hair while cattle mustering in QLD and others who have been bitterly disappointed when it hasn't worked. Personally, having done some research it was not for me, even if it had been available.

Anna Louise

Thank you for your responses re cooling caps and new inclusion into the treatment sphere. I guess my thoughts are these; given the amount of donations and funding made to reduce the stress of breast cancer they should be factored in to the regime as part of our treatment. Where does the money go?

Why cant cooling caps at least be offered?
They  are available and purported to work in many cases so let's have them please or at least ensure they are available at all centres for trialing. It is tough enough as you all know dealing with this bump in our road of life without being hairless and trying to get back to looking normal so as to work so I am a contributing member of society. I am not always well enough to work but having hair would give me a little incentive to not get so down. Sadly,how I look is important in my work but from a philosophical point of view it shouldn't matter within reason and it doesn't reflect the person but society judges in business. 
No one sees my breasts but my hair loss is a beacon for discussion ,supposition or pity. Can we try please to get cooling caps as soon as possible into EVERY outpost regional and city???? I will be a strong supporter to drive this.

iserbrown

https://lgfb.org.au/workshop/

In the meantime have you attend the Look Good Feel Better workshop - the link above allows you to put in your postcode to find one near you.  

Anna Louise

Yes thanks Iser ,I rang about the workshop and it's a matter of supplying evidence that I'm a breast cancer patient. I need to get a medical person to send a letter to confirm this so I can obtain a kit? My word is not enough? I think it's a great idea but it's not that well organised or approachable. In my experience anyway.

iserbrown

@Anna Louise

Oh, for me I just had to apply online as there were workshops to choose from nearby

Apart from that are you aware of the Otis Foundation?  A free holiday for us, breast cancer patients - hopefully there is something in your State as it is good for the soul - check the search engine here on the forum and you will see previous experiences of others, @soldiercrab, @zoffiel, to name a couple, including me - My GP signed the paperwork for OTIS - he was thrilled with the idea

https://www.otisfoundation.org.au/

kezmusc

Hi @Anna Louise

The cooling cap worked a treat for me.  They have been in use for many years in the UK.  My breast care nurse has been trying tirelessly to get one for our local public hospital.  However funds, extra chair time and a dismissive attitude from some Onc doctors has rendered it an incredibly slow process. Unforturnately a lot of doctors don't pay much attention as to how much keeping your hair can actually make this whole shit fight just that fraction easier.  You can go to work just looking normal. You can go out with your friends and look the same. It just helps so much I found.  The picture below is my hair the day of my last chemo appointment.  This was after 4 x AC and 12 weekly paclitaxel.  These are the drugs some doctors will tell you the caps don't work with.  This should be an option for EVERYBODY

Teejay

I had a porta Cath inserted. Although I had good veins I didn't want to destroy them.   The specialists can't give you certainty but staying positive will certainly help.   I ask lots of questions all the time with my Oncologist (haha) said I had been a difficult patient but it is my body and I have rights to ask as much as possible and so do you.  Always listen to your body it knows what is best.  I had only one node involvement but fast growing cancer so opted for 16 chemos and 20 rads and now on Fermara.    Hair does grow back and you do eventually start to feel like your old self but with different perspectives I find.  Do what you think is best for you.  Take care 

Anna Louise

Kezmsc,
Exactly! You are the evidence and there's plenty more. I asked at my centre if they had one for me please and the response from nursing staff how would you choose who gets to use it??? So NO! My response: shouldn't have to choose they as should be there for everyone. Private hospital has one  which was donated but public hospital NO!  Doesn't seem fair as I've paid my tax and always worked toward believing in an equivalent system for everyone 

onemargie

Hi there @Anna Louise I would definitely recommend the port for access for your chemo I'm honestly surprised this wasn't discussed with you prior?? Sounds like you haven't had a good time with your oncol either with communication, Id write everything down before your visit you want to ask then take your time to get the answers you need or if you're still unhappy get a new oncol and where's your breast care nurse in all this?? Mine was awful but you should have more support from your team that what you are getting for sure. Margie  

Anna Louise

Thanks Margie,
It maybe my frame of mind at the moment, but to be honest I'm pretty shocked at the service offered to people in my situation. I'm feeling sick and exhausted and yes the Oncologist is nice but I'm a number. I  Have an appointment wit then move into chemo. That's it because I guess that IS IT? Have chemo, go home. Until next time. The services are disjointed and you have to chase them up??? These guys are being paid to provide a service. My initial breast care nurse was to provide a list of exercises for me to do post surgery but as my surgery coincided with a public holiday it didn't happen and then she sent them to the wrong email address. Glad she's not administering the chemo dose!!

Afraser

You are having a most unfortunate time. My surgeon and oncologist worked closely together and my oncology nurses were both supportive and informative. But as you are sick and exhausted, it is hard to remember what to ask and what to ask for and your oncologist may not want to overload you. Never forget though that if you are not getting the treatment and the information you want and need, you can change your oncologist.