One would think that since 1 in 8 women get breast cancer that we would be inundated with real world information about what to expect and a list of every single thing you may need for a mastectomy and the recovery...but that information is almost impossible to find and the reason I started this blog. I reached out to many friends and acquaintances in the days after I was diagnosed to get any information I could on what to expect or what did I need? The nurse navigator sent me home with a huge binder full of information that outlined everything from what to do now that you are diagnosed with breast cancer to the last tab in the binder preparing for your death. Because nothing says HOPE like that little tab. Quite honestly, I could not even stand to pick that binder up and to this day it remains in a box and out of my sight. It seemed that all of the information in it and all the information I found on the internet or in any books that came recommended was all medical and sterile information. It was either way over my head or pretty much had me convinced I was dying from this disease no matter what any doctor said. Researching anything on the internet did not seem productive (though I did it constantly) and it certainly did not answer any of the REAL questions I longed to have answered. It did not take me long to reach out to women I knew who had battled this same disease. Who better to tell you what to expect then the experts- the women who went through this!

My dear friend Amy who I have known for years had just battled breast cancer and she was amazing a wealth of knowledge. She checked up on me regularly and sent me an email with so much information on what to buy...what to expect and just good vibes. It is these types of emails that have you feeling hopeful that you can do this. I remember her telling me about chemo..."I am not saying it won't be tough...but you can do anything 4 times." And she was right...well 3 times since I went into anaphylaxis shock after the third round.

Here are some of the things Amy shared with me and some additional things I found helpful:

1. You will have drains. The drains themselves are not painful, but the drain port sites are tender. If the tubing is pulled it can sting a bit.

2. Moving around is definitely difficult, as the drain tubes can get tangled and pull at the port site. Give them plenty of slack.

3. Buy a soft mastectomy shirt that snaps up the front. I lived in mine! My sweet in laws sent me 2 of my favorite items for my surgery...that shirt and my heart mastectomy pillow! Be sure the shirt has drain pockets. This helps with sleeping and not having the drains get caught or tugged on.

4. Buy the heart shaped mastectomy pillow! LIFE.SAVER! The sweet volunteers at Novant Health sent up a bag after my mastectomy with some things in it...one was a homemade small pillow. I LOVED this pillow! I used this small pillow and my heart mastectomy pillow for weeks...one under each arm especially when sleeping.

5. Hospital bed: I was blessed to work for a company that has hospital beds and they allowed me to use one. This was amazing and I used this bed for months as I recovered from the mastectomy and my oophorectomy that I had 5 months later. Being able to prop myself up with these expanders was key. If you do not have access to a hospital bed I HIGHLY recommend a recliner. Borrow one from a friend if you need to. Do not fall for the incline systems for your bed. I had one just in case...it does not work. Trust me on this...recliner or hospital bed especially for comfortable sleeping after surgery!

6. Since I opted for recon with implants I left the hospital with expanders and drains. I had no wrap on like you see for augmentations. I was able to wear clothing and I found that my husbands worn out HANES undershirts were a life saver. They were soft and comfortable to wear to bed. I could not lift my hands over my head so we cut the neck making it easy to get on and off. I would change into the mastectomy shirt for the day. My sweet friend Amy who opted for the 14 hour flap procedure using her own tissue was told she could have nothing on her chest for a few days. They did give her a camisole that sort of works like a bra, but also has pockets to place the drains, so she didn't have to hold them when she was moving around. I would suggest very loose, button up shirts and/or zip up jackets/sweatshirts so you don't have pressure on your chest and don't have to lift your arms over your head especially for leaving the hospital. Check with your insurance provider about what they cover. Sometimes these shirts, bras and camisoles may be covered.

7. You should be given a bra by the plastic surgeon or the nurse navigator at the hospital. Sometimes you will find that local breast cancer shops will also donate bras or other needs like in the bag I received from the volunteers at Novant. Another one of my favorite goodies in that bag was a small bag of large pins and a lanyard. The pins can be used to hook your drains to a shirt without pockets and the lanyard is perfect when you can shower.

8. If your drains leak at all (they should not if you have proper gauze around the site) be sure to change your shirt and the gauze or you could end up developing blisters.

9. If you do not like the feel of the camisole, you can also try this bra type from Amoena. They have velcro straps to where you can attach drain pouches and they’ll hang from the bra. Again, just a convenience factor so you don't have to carry the drains. These also don’t have material below the bra, so I think it is much cooler to the skin. These bras also clasp from the front, so you can get them on a lot easier than a normal bra, or the above camisole.

10. One of my most favorite and well used things I got in my hospital goodie bag was an apron. This small apron tied around my waist and was perfect for putting drains in. I found this to be the easiest and most useful especially around the house.

11. Do not be surprised if you need help showering or need a shower seat. The first day I was able to shower I was so excited and ready to be clean. However, it took about 5 minutes of the warm water and my legs started to shake. I could barely wash my hair and I was exhausted. I did not have a shower seat but I wish I had! There are many mobility and durable medical equipment sites and of course Amazon is amazing for finding these types of things.

12. One of the things I was warned about was not being able to go to the bathroom on my own and do all that goes along with it. This is mainly due to the limited mobility in your arms and the fact you can't really turn at the waist if you opt for the tissue flap surgery. Make sure you have someone at home with you that can help with those things, just in case. I did not have that issue with my type of reconstruction.

13. One of my most favorite things I bought on Amazon was a small table. Amy recommended this as one of her favorite things too...I now know why. These small tables fold up and are a great place to put your stuff and food and the legs could slide under my bed or chair. My kids now use this table when they want to watch tv and eat a snack or if they are home from school and are doing virtual work.

14. I was blessed to have a hospital bed that moved me up and down and allowed me to be able to get out of bed fairly easy with help. However, for those that do not have a recliner or a hospital bed Amy recommended an exercise step which can be purchased at most sporting good stores. These can be used next to your bed as a step stool.

15. Finally - I would encourage you to start taking a daily Colace a few days before surgery. Between the anesthesia and the pain meds, it will come to be your best friend. Constipation after any surgery is NOT fun and after this type of surgery it is even worse!

This picture was taken the morning after my double mastectomy in the hospital. As you can see even then my heart pillow was my best friend! You got this girl!!!

**Credit for much of the above information goes out to my dear friend and fellow survivor Amy Rodriguez.

***I do not get paid from the links shared above. I am linking the products that are most similar to the ones I used during my surgery for informational use only. Feel free to shop around for similar items.