Hi Ashtonleigh,
Yes, it feels very rollercoastery for sure. I have days where I feel like I have got this and it's no big deal, and then an evening of lots of crying because I had two leaks in one day and I still wasn't 100% sure how to change my bag as I was so fresh from the hospital. It also didn't help I got my period too.
The things I have come to realize that really help me are:
Feeling my feelings when they are there and working through them. I have been a feeling stuffer my whole life and I have finally realized that crying for 30 minutes and getting it all out is a lot more empowering for me than just telling myself to suck it up because I can't change it. Letting the feels out gives me the clarity of mind to shift into practical mode.
Reading / Posting here and on Veganostemy when I need help or have a helpful thing I have figured out. I try to make sure that I am sharing good tips and helping just as much as I am asking for support. It makes me feel like I am a supportive member of the community.
Finding clothes that work! I was seriously bummed when I tried my clothes on - not only have I lost 30 lbs, but my pants were hitting in the wrong place. I went out today for the first time in weeks and received compliments on my outfit... not only did it feel good to get dressed, it was nice to be noticed for looking cute in my high waisted denim skirt and cowboy boots. The lady who was so nice to me literally had no idea I have a poo bag plastered to my tummy.
Connecting with your friends / partner. I did not want any friends coming to see me in the hospital or when I first got home. Luckily a couple of my closest friends lovingly forced their way into my home and it did feel so good to see them.
Figure out those things you really do need help with and ask. For me one of them was what can I eat... my bestie helped me get some meal plans together and even had Whole Foods deliver the groceries to my house.
My partner has been awesome, and we have been doing "emotional checks" with each other which has been really helpful. The rules are basic, just ask "How are you feeling" and then listen... no need to problem solve unless it is asked for. It is just more so about connecting.
Standing up for myself and how I am feeling. Sometimes when you are down people will say the old "Look on the bright side" advice which can really diminish your real feelings. I finally got to the point of being able to tell my partner, friends, and parents things like "Yes, I understand I am lucky that they were able to isolate and remove the cancer from my colon, but this is still a very scary path for me. I literally have an open wound on my stomach and I am scared I will do something wrong and end up back in the hospital."
HOPE THIS HELPS!
Elle D.