Here’s a list of resources I have found helpful in preparing for, and undergoing, my mastectomies and breast reconstructions:
MASTECTOMY/ RECONSTRUCTION – general info:
Blog: An American woman’s journey with LCIS and DIEP reconstruction, just like me
Breast cancer network – Australia. I found the forum for women with breast cancer especially helpful in reading some “real life” experiences of other women with mastectomies and reconstructions. Every person is different (both physically and emotionally) but reading a variety of stories helped me when I was trying to become familiar with what lay ahead for me. Asking specific questions of women who had been through the same was helpful too. http://www.bcna.org.au
“Perfect Scars” by Beverley Corlett, Jill Lacina and Rosemary Paul. A great Australian book with beautiful photos and 21 stories of the emotional and physical impact of breast cancer.
LCIS – Lobular Carcinoma in Situ (or Lobular Neoplasia),
BREAST CANCER RISK CALCULATOR:
BILATERAL PREVENTATIVE (PROPHYLACTIC) MASTECTOMIES:
WHAT TO TAKE TO HOSPITAL:
I found these things helpful while I was in hospital:
- Nightshirts – I wore the standard issue hospital gowns for the first week or so, just because it made access to the wounds so much easier for the multiple checks you have each day. Once the drains came out, my own front opening/ button through nightshirts still left things accessible and made me feel more human!
- Moisturiser – A dear friend gave me a gift pack of assorted moisturisers – body, hands, lips, etc. Hospital air is so drying and it was great to apply to places where tapes had been applied to hold dressings and drips in place when my skin felt sore after their removal.
- Light bathrobe & slip on slippers– For the days when I was up to a wander of the hospital corridors.
- Singlets – For wear under the abdomen binder, which tends to be a bit scratchy on bare skin
- Mastectomy bras – For when your doctor says you are ready for them. There are lots of different sorts available, some prettier than these, but I’ve found this one most comfortable.
- Eye Pillow – This was a gift from my sister and I just LOVED the way it felt – luxurious and fragrant – and made it helped to block out the light when sleeping too. And since you have to lie on your back the whole time, the eye pillow just sits there perfectly!
- Iphone – keeping in contact via text was much the easiest way once I felt strong enough, but more importantly, having music in my ears was soothing and blocked out the hospital clatter when I was trying to nap.
- Sleeping in the spare room (if you have one). I couldn’t think of anything worse than sleeping next to someone else when you are uncomfortable, restless, in pain etc post surgery …. So even though I have a lovely husband, it was great to have my own little haven, where I could prop pillows around me and know I will not be disturbed by anyone else coming and going, whether at night or during my afternoon naps. I love my own little haven of healing!
- Home cooking service. The absolutely best thing we did was engage the lovely women at The Organic Cook to come to our home and cook the evening meals for all of us for the coming week. It is not cheap but it is SUCH a great investment – one less chore for everyone to worry about and knowing that you are eating good, wholesome, tasty food really helped my healing. I HIGHLY recommend them!
- Afternoon naps – essential! Even if you don’t sleep and just lie there, rest rest rest is so important!
- Allocating household chores to others. When you come home, you are just so tired. And with the limited energy you do have, you don’t want to be spending it on laundry, cleaning, cooking, etc. So accept all offers of assistance. Ask for help. If you don’t look after yourself now, when are you ever going to do it?!
- Peace and quiet. Let everyone know that you need it! So many people are so kind and want to help, but I found that I really needed my own space and kept in contact with my closest circle by text and the occasional phone call. Take a rain check on visitors until your strength returns. Look after you!
- Extra binders. I was sent home from hospital with just one binder, but since my doctor says I’m going to be wearing a binder day and night for the first six weeks, and then daily for the following twelve weeks, I’ve invested in a few extras. I found this binder to be most comfortable, with the three adjustable bands so it sits more snugly, rather than the ones that are all the same width.