Breast Cancer Recovery Notes

Mental note to myself.

DO NOT forget to post medical notes. Just to remind yourself of what recovery was like, just in case you ever have to do this again or you have a friend who goes through this. Tomorrow it will be three weeks since surgery for breast cancer. I'm glad the last three weeks are over and look FORWARD to what each day of the future holds.

So what was learned?

Oh yes, I posted that once my drainage tubes came out, I was looking forward to sleeping on my side again, that was optimistic! I did try sleeping in my own bed which only lasted a couple of nights. Pillows bend my torso in the wrong places, it seems the only place I'm willing to bend is the waist, so back to the recliner for me. We attempted moving me back to our bed again this weekend, it lasted 4 hours the first night and 5 minutes the second. If you are a stomach or side sleeper, to lay on your back in bed long is very uncomfortable. It's hard for me to roll over or sit up without automatically using my arms and upper body. I also have muscle spasms and chest discomfort that wakes me up and it seems to be better when I'm in the recliner with a firm straight angle to my waist. If I had done a TRAM or DIEP tissue reconstruction,it would probably have been much worse from my reading. Here's hoping to go back to my own bed soon. :)

Personal care. The docs all send you home with their instructions. I've chosen to follow the most explicit and restrictive set which came from the plastic surgeon. The first week after surgery I was glad for DH's careful supervision and assistance with my personal care. Our homemade version of a shower chair worked great it was helpful when I was weak and not stable on my feet. Week Two, I graduated to doing more of my personal care by myself, I was comfortable standing in the shower once the drain tubes were out. This week I'm caring for all my basic needs on my own. It takes me twice as long as normal and DH still checks incisions regularly for any signs of infection or problems. With his background and all his years working around clinicians I trust his assessments!

On the medical front, my swelling is going down, not fast enough to suit me, but it's getting there. I'm still very swollen above the implants and under my arms. Particularly on the left side where Dr. H. did the sentinal node biopsy. My doc notes say to expect swelling for up to 6 weeks. By week two I was black and blue, but during this past week it's been clearing up and hopefully by next week all of the remaining bruising will be cleared up. My skin color is good which means the docs did a great job of preserving blood flow to the skin, that along with healthy living practices means everyone is happy about my skin.

My nerves are another story, because of the type of surgery I had, the nerves to my skin and incision areas were severely disrupted and while I have some pressure sensation in some areas, I have no feeling in the incision areas. About 10 days after surgery what nerves that remained woke up and tried to connect with their long gone partners for the first time. OUCH! Now I get shooting nerve pains through the chest area. It's similar to what my Dad described after open heart surgery, though I'm sure not so severe. Those are no fun. The doc notes say it's normal and will last awhile. So grin and bear it!

Body shape. You never think about it, but you get really used to your body shape particularly in the shower. We all have habitual ways we use to care for our bodies. When something happens that changes your body shape significantly it takes time to adjust mentally and to modify your habits. I'm working to do that as best I can, But my shape looks and feels very different and I'm squeamish about incisions!

Emotionally. There are enough blogs and cancer websites bulletin boards out there to know that women and their partners experience a full range of emotions. I am so grateful for the many prayers on my behalf and my personal faith and trust in a LOVING God who cares for me inspite of what the devil tries to do. I also greatly appreciate the genuine concern, support and caring shown by DH's colleagues. It means a lot to him and to me.
I am blessed with a loving supportive family who prays.
I am blessed with not one, but two church families who show they care in tangible ways and who pray.
I am blessed with priceless friends across the country who show they care in so many different ways and who pray.
I am blessed with a great medical team and my own personal team of medical consultants. I pray for all of them!
I am blessed by the experiences of fellow cancer survivors, who've been there and can empathize.
So, while there are some days that the meds don't work, or I'm extra tired and in pain, I choose to focus on my blessings. :)

So how's DH doing? Well you can ask him! I learned early in our marriage that it wasn't wise for me to speak on his behalf. We are opposites in many ways, that's part of the spark in our relationship. I will make a couple of observations though. DH is very protective of me. He wished it had happened to him. Another couple we know who've been through cancer wrote that it was almost harder to be the spouse, than to be the patient. Even post surgery, we've shared tears over the experience of cancer and the changes it brings. He is accepting and loving, gentle and helpful. Our relationship is growing and deepening as a result of cancer.

How are the kids doing? See previous post. If you have small children or children that are not trained to run your home yet, you will need outside help. Line it up for the first three weeks so you can heal and rest. If you are going to need radiation or chemo plan on help for a more extended period of time until you know how you are going to cope. Better to have more help than you need than be frantically trying to find it in the midst of recovery or treatment.

Practical hints for making the first three weeks easier.
1. Pajamas and shirts that button down the front or that can be stepped into and pulled up. I can't pull anything over my head until three weeks post surgery and then only if my arms cooperate.
2. Very soft and comfortable skirts or pants. Jeans do not qualify.
3. My plastic surgeon required a specific bra post surgery for 6 weeks night and day. One came with the surgery. I purchased a second one from her office. Wear one, wash one.
4. My breast surgeon required a special camisole post surgery that zips up the front. I was fitted for it at the local durable medical equipment company that also does breast prosthesis. The camisole has Velcro pockets to hold the drainage tube bulbs. This prevents those tubes being pulled out accidently. It's worth the $60. Do not pin your drains to your clothes! They also gave me a lanyard to put around my neck when I showered. I could hook the bulbs to that. That prevented them from pulling out while I showered or the camisole was being washed.
5. 3x4 no adhesive bandages the kind used by burn patients. They cost a little more, but nothing sticks. That's really nice the first three weeks. We bought ours in bulk from a durable medical equipment company or you can buy them on line. Different sizes are available, but stock up you need enough to change dressings 2x day for the first week and then 1x day for the next five weeks.
6. Silvadene burn cream. It's a prescription, but my plastic surgeon believes it gives better final scar results and less infection. I'd used it with my kids before and knew it worked well. At three weeks, my incisions look great.
6 1/2. Sterile tongue depressors, use them to get the Silvadene Cream out of the jar. It keeps the ointment clean, and you can paste directly on your incision if your squeamish like me. I only dip once and use a little of the left over on the stick to paste the corners of the bandages to my skin.
7. My medical note book with all the directions and instructions.
8. Shower chair for the first week or invent your own. We did. One small bench covered in heavy black plastic.
9. A good recliner, bed isn't going to feel comfortable for awhile unless you buy one of those wedges and use lots of pillows. The recliner was one of the best tips I got from someone who'd already been through this.
10. Clothes and towels hung low where you can get to them. You can't reach up to a normal closet rack height unless you are considerably taller than my 5'2".
11. A small table next to your recliner or bed for your water, phone, books, meds, etc.
12. Heating pad for your back.
13. A long handled scrub brush for the shower as you can't reach your back.
14. A long handled back scratcher.
15. Water jugs or mugs with lids and straws. If you are in bed or a recliner a simple glass may not work that well.
16. Protein powder. If you are having a hard time eating the week after surgery, you need to have smoothies with protein powder. My plastic surgeon and naturopath both said 65 grams/day.
17. A stock of broth and soup crackers for the first week. I found the crackers helpful as I don't like to take meds on an empty stomach unless directed.
18. A bucket or basket for all your meds/bandages etc. One that you can put on a shelf out of reach of small children.
19. A night light.
20. Thank you cards.
21. Stock up on staple items as you won't feel like going to the store for a full trip for awhile and you won't be able to lift much anyway. When you get into the store it seems like most everything you want is on a shelf you can't reach.
22. If it applies, find out your medical leave requirements and what you have to be able to do to return to work. This is very important, your doc will need to go over this with you before surgery.

In summary, plan ahead, it is a stressful, emotional, painful time, but good planning before surgery can make recovery more pleasant.