Comfy list: trying to make your daily breast cancer experience a little better

Chocobo

Hi all,

I am 32. I was diagnosed in April. Went through double mastectomy and am about to finish chemo.

Breast cancer was devastating for me. The hardest part for me was that I feel like no one prepared me to life with cancer, especially not how to make my day to day life comfortable. I felt like doctors didn't care about stripping me from all sense of dignity. I had to figure out a lot of stuff on my own that made my life bearable (mostly through hours and hours of research online and reading forums)

As I went through this, I started collecting in one document all the tips and tricks (which I call my comfy list) that made my life better. If I had had that when I was just diagnosed, it would have helped me so much. So here I am, sharing it. And hoping that it will help some of you!

Also, I am of course very open minded to updating the list so if you have suggestions or find out new things as you go through this experience, let me know!

https://bccomfylist.blogspot.com/

Hopefully, it will help some of you!

And if you don't want to go on the website, here is the transcript of the list:

The breast cancer comfy list!

 

Aka: what I wish I had been told to prepare and make my life easier while dealing with breast cancer

 

This does not treat the medical aspect, there is plenty online on this (and your doctor should of course be your #1 source of information). However, what there isn’t is a list of things to know or do, that will make your life better.

This worked for me, I went through double mastectomy + egg retrieval + chemo + reconstruction. I was 32, married, no kids, and had breast cancer stage 2, one 3.1 cm tumor, negative lymph nodes, BRCCA 2 positive.

I am not pretending this list will make this ordeal easy, but hopefully, it will help a bit.

 

Stuff to get/do as soon as you have been diagnosed:

 

1. 
   
   A notebook with a pen attached to it: take notes, write down your appointments (even if they’re on your phone), write questions you have, and keep this on you at all time. It’s going to be a whirlwind, you can’t possibly process it all at once, so write it down!
   
   
2. 
   
   A folder where to keep all the receipts/insurance stuff/ paperwork. It will pile up in a hurry!
   
   
3. 
   
   Don’t hesitate to ask your doctor to repeat something. You will zone out during conversations, that’s ok. But don’t miss anything they say, it’s all important.
   
   

 

What to buy pre-surgery:

 

1. 
   
   Get a reclining chair/couch: get one on craigslist or whatever it takes but get one. After the surgery you will be in excruciating pain and sleeping in a bed will be near impossible even with a mountain of pillows. A reclining couch will be a lot easier to adjust your back level and also to prevent you from sweating etc. It took me 9 weeks after the surgery for me to be able to sleep well in a bed.
   
   
2. 
   
   Get a bidet seat. There are manual ones for

peony

Wow , it's great of you to

Wow , it's great of you to compile this list! Everything on it won't apply to everyone, but it's a good look at what it's acutally like to live though it all. That's very kind of you. Best wishes.

Apaugh

thank you.

great list!

HapB

Chocobo

I am sure that list will be helpful to many people, and it is really great that you put these tips together.  After reading this, I thought someone needs to make a list for women, like me, who live alone and cannot just rest or spend a lot of money on things like chairs, etc.  When I am feeling a little better, I just might do the same for women who do not have help at home. 

Beepositive

THANKS Chocobo

Great info and advice..Im sure everyone can pick some of those ideas and use...I sure can....Thanks Again

Continued success and prayers to you and your family!!!

 

Beepositive

Chocobo

HapB said:

Chocobo

I am sure that list will be helpful to many people, and it is really great that you put these tips together.  After reading this, I thought someone needs to make a list for women, like me, who live alone and cannot just rest or spend a lot of money on things like chairs, etc.  When I am feeling a little better, I just might do the same for women who do not have help at home. 

That's a great idea! Like I

That's a great idea! Like I said, my list is extremely personal. And we all have different experiences and constraints. I feel very lucky that I could take time off work and that my husband helped me tremendously, but of course that is not the case for everyone. Have you reached out for help to local cancer groups? I know in NY some come and clean for free for you and help out with meals. The other thing (again from personal experience) that really took me by surprise is how even people I barely knew just spontaneously helped or offered to help. It took a while for me, but I finally got it in my head that there is no shame/embarrassment in asking/accepting help, even if it's from someone you barely know! 

Best wishes to you!

Chocobo

Beepositive said:

THANKS Chocobo

Great info and advice..Im sure everyone can pick some of those ideas and use...I sure can....Thanks Again

Continued success and prayers to you and your family!!!

 

Beepositive

Thank you! I'm so happy this

Thank you! I'm so happy this helped you, even a little bit! It makes it worth totally it!!

Good luck and best wishes to you too

Chocobo

peony said:

Wow , it's great of you to

Wow , it's great of you to compile this list! Everything on it won't apply to everyone, but it's a good look at what it's acutally like to live though it all. That's very kind of you. Best wishes.

Thank you  

Thank you  

Chocobo

Apaugh said:

thank you.

great list!

Thanks

Thanks