Logistics of treatment

@Outra All our decisions are hard and overwhelming regarding this shit disease. I can only say good luck with whatever choice you make. What works for you is what you do. There is a lot of support out there it is just hard to get your head around where to start. I do hope you have a good support team to help you out and use them. You don’t have to go it alone 

@Outra I feel for you. My hair was very important to me and I insisted on cold caps which only worked for some of the time. It must be very difficult having a young baby and coping with the initial stress of making decisions about treatment. I hope you have some supportive friends and family around you. The counsellors at the Cancer Council are wonderful. 

It sounds like you’ve looked into options. Unfortunately with cancer treatment the options are all a bit difficult. My hair grew back, I had reconstructive surgery. There are options down the track. It really is important to start treatment soon. My aunty had delayed treatment due to a delayed diagnosis and I spent yesterday with my cousins and my uncle. It was our first Christmas without her. Please take care. xx

All good news that your sentinal node is clear as Her2 are very aggressive cancers. I am assuming your tumour must be large if they are suggesting chemo 1st.

My biggest fear was dying and leaving my children. My sister died of breast cancer. My sons, teenagers, were not ready for any life without a Mum. I chose the most radical surgery offered to reduce my local recurrence risk and accepted chemo without hesitation. I live 500km from my surgeon. I chose mastectomy in hope of not needing radiotherapy so wouldnt need to stay sway from home for additional time. If my sister had been diagnosed earlier her outcome may have been very different.

Most chemo unless dose dense is every 21 days. So I guess you could travel home in between. However with a baby this would be challenging and really you are going to need help. Perhaps a family member can accompany you?

Do you have a breast care nurse? They may be able to assist you with information.

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx

I was devastated to lose my hair. In fact I can't think of a single woman I've met who found this process easy. It was harder than losing both breasts. It is though only a few months of your life in the big picture of it all. And that's the important part...your life. If you can't find a solution within a week or so you really shouldn't delay any longer. Her2 cancers are aggressive and can become metastatic in such a short time. My surgeon was relieved mine hadn't, as was I. 

My niece 14 years on (the daughter of my passed sister) is now 14 years cancer free of her her2 cancer. She was on the clinical trials of the same regime as me. She calls it liquid gold and is grateful to have been able to watch her babies become teenagers. Please don't delay having that opportunity. Kath x

Just checked they do and can be free under certain conditions - aiming at helping country people

Not sure if this helps but in SA Cancer Council has accomodation close to the CBD at I presume reasonable cost whilst treatment is ongoing.Maybe Qld Cancer Council might be worth having a chat to.

Thanks everyone for your supportive messages, making a decision on all of this is just so hard and completely overwhelming xox

@Afraser thanks for your post. I’ve been speaking with cancer council but not bcna. Just an awkward time of year to get hold of anyone. X

@Zoffiel thanks for posting. Yes I’m aware that there’s a 50% chance that cold caps won’t work and know that it would be very difficult for me to handle if it didn’t go my way. The oncologist basically needs me to start in Jan or proceed with mastectomy instead and risk no chemo. Hair loss isn’t my only reason for not wanting chemo but I won’t go into details on here as I don’t want to sway anyone else’s decision on their treatment. X

@kezmusc thanks for your message. I’ve seen a few of your posts on cold caps and looks like you had an amazing result. I was talking to the Bris social worker a week ago but think she must be on leave for Xmas break so prob won’t hear back from her til new year. Just trying to gather info in the meantime x

@AllyJay thank you for taking the time to reapond. There are numerous reasons that I haven’t progressed with treatment as yet to do with delays in seeing specialists initially, 2nd opinions, never ending waiting for appointments/tests/scans etc, plus the number of different treatment options I have been given. I only got results of sentinel biopsy last week (all clear) and one of my options is now chemo prior to surgery.
As I said “One of the reasons...” is to do with hair loss. I won’t go into detail here but my long hair means more to me than to almost everyone else as it aids me in coping with a different chronic illness. 
I wish you well but your experience is clearly very different to mine and your post is not helpful or supportive at my current time of need.
if anyone else has any clue on logistics assistance please let me know, thank you 

Hi @Outra,
I am so sorry to hear that you are a so stuck.  This thing is hard enough without any added pressures and a little one.  If chemo can be done closer to you maybe you could rent the penguin cold caps? https://penguincoldcaps.com/. I am not sure if they work as well as the paxman machines and are more labour intensive. You would need to check with the nurses to see if they are prepared to change them over every 20mins or so or take someone with you to do that as the nursing team might not have time.  There is a distributor in Perth that are excellent and fast to deal with and will ship anywhere in the country.  Unfortunately they are pricey to rent as well but it might just be an option so you can get that treatment started asap. As @Afraser said, they do vary in results  depending on the individual and the team that's fitting them.  I am a big fan of the cold caps but not if that whats going to delay your treatment..  Did you have any family or friends  closer to Brisbane that you could stay with and can help with the baby as well. Have you spoken with the social worker at the hospital to see if they can come up with something?  Definately check with BCNA as well.  
Thinking of you XOXO

The cold caps are not at all reliable. In a great many cases they do not work, or provide unsatisfactory results.
Your reasons for wanting to keep your hair are your own business, but be very careful of pinning too much hope on an unpredictable process. 
None of us want to lose our hair. I've done it twice and while I can tell you it isn't as bad as you expect, you won't believe me--that is something we all have to work out for ourselves. I'm more comfortable walking down the street bald than I would be wearing shorts in public. I'd die of shame. Thankfully none of my treatment required me to bare my legs to a critical world.

If you are going to take much more time figuring this out, the chemo may not be worth the trouble. We all have to make these decisions and most try desperately to bargain or deal their way out of unpalatable treatments. Maybe you need to talk to your oncologist about how the delay is affecting your prognosis and think about moving straight into surgery, rads and hormone therapy with the hope that it will be enough. Marg.