Breast Cancer Recovery Part I

I'm 10 days post-surgery, so this is a good point in which to review the realities of recovery versus what I anticipated prior to the surgery. (See First Lessons)

1. There is still a lot of waiting. In the hospital you are waiting for medications. You are waiting for someone to help you get out of bed. You are waiting for the doctor to make her rounds. You are waiting for the dismissal paperwork and your take-home prescriptions.

After the hospital you are waiting for more results. I was lucky enough to only require one lymph node removed on each side. Three days later I got the great news that both nodes were negative, meaning the cancer had not spread, so likely no chemo (still waiting on the next tests to be sure!)

However, I also got the news that one of the cancers did not have a "clean margin" meaning there was not enough non-cancer cells between the edge of the tissue removed and the cancer. Result: 9 days after my original surgery I went back in for a day surgery to get more of that tissue to be sure there were clean edges. While the surgery only took 45 minutes and I was home 2 hours later, it did increase the swelling and pain again, so back to pain killers.

2. It's still okay to cry. While I have been extemely pleased with the results of my surgery(s), there are still times when I'm super emotional. Be content with that and let the tears flow.

3. My team is working well. When I had to have the second surgery only my surgeon was required; however she coordinated with my platic surgeon so that I could have 2 of my 4 drains removed.

Likewise, while my original anesthesiologist, Dr. John, was not available, she personally emailed the anestehsionlogist who was with me at the day surgery location and shared tips she had used (and apparently warned her about me! - grinning)

4. Implement your recovery plan - then modify it as needed. There are quite a few lessons here.

a. The pain has not been as bad as I anticipated. I am a firm believer in pain medication, so that helps. In the hospital I had on-demand medication. On the second day they added in Percocet every 3 hours. I took that pill, then used my on-demand only as needed (like the time they were an hour late with my pill!). By the time we left the hospital I was comfortable with every 3 hours.

At home, I began to extend the time. First to every 3.5 hours then to every 4 hours. I gave myself 24 hours to move from one dosage to another. However, I did set the alarms to be sure I took the medication - before I needed it! I made the mistake one night of not setting the middle of the night alarm and was quite sorry the next morning. It took several dosages in order to get back in control of the pain.

By a week out of surgery I was only taking a pill every 5 hours. Then my plastic surgeon told me I could take Advil for discomfort, so I now take that about 3 hours after the Percocet so that my pain medication is now every 6 hours - and sometimes longer. I'm no longer setting a middle of the night alarm.

b. Once you start extending your dosage times, you need to write them down. When it was 12, 3, 6 and 9 it was easy to keep track of. But at 12, 4:30, 9 and 1:30 - well, it gets confusing. Just grab a piece of paper (or a note on your phone) and write down each time you take a pill. Makes it easy to be sure you're taking it on schedule.

c. Emptying the drains isn't as gross as I anticipated. My husband has handled it like a champ. Because of the drain placements and your limited mobility, you will need help with this. But we've only had to empty them twice a day. Takes about 5 minutes!

VERY IMPORTANT: Record the amount emptied from each drain. We created 5 columns:
Date & Time, Drain 1, Drain 2, Drain 3, Drain 4.

You will take this record with you every time you have a doctor's visit. That's what told my doctors it was okay to remove 2 of the drains after just 9 days. And it's what told them to leave the other 2 in - because the volume they are draining indicates there is still enough fluid being produced that they are required. (The fluid comes from your body's reaction to the insult of the surgery. It's sending all it's got into your breasts to help them heal. Without the drains you would swell up - and explode! (Just kidding). Anyway the drains are your friend.)

d. In addition to the drains you may have other "pumps". They added 2 pumps (painless in wearing and operation) that speeded the healing process. The drawback was that they were relatively heavy - too heavy for me to be comfortable wearing them in my drain vest or in drain bags around my neck. So I carried one in each hand everywhere I went.

The good news is that it kept me from trying to pick up anything I shouldn't - like a full water bottle, tea pitcher or vase. It also kept me from using my hands to push up from a chair, which is not recommended. The bad news is that you have to plan where to put the pumps - in bed, in the bathroom, sitting in your chair. Not bad, but still another reality.

The pumps came out on day 7 at my first appointment. It was a long and painful process - about 20 minutes. Most of the discomfort came from pulling off the tape that completely covered both breasts. With sensitive skin, it was slow going. Tip: take a pain pill before you go to the doctor. Then she recommended I take a second when I arrived so that it would take effect about the time she was pulling off the tape. I'll definitely do that for my drain removal!

e. You will not be able to bathe as long as the drains are in. Since they can stay up to 3 weeks, you have to plan for bathing and washing your hair. I use the Comfort Rinse-Free Shampoo Cap, on the advice of an oncology nurse who used them in the hospital. Search online for the cheapest price. I ordered one for every 3 days. The nice thing is they can be heated in the microwave. They wet your hair so it can be combed out and blown dry.

Note you will NOT be able to do this yourself! You will not be able to get your elbows above your shoulder for several weeks. So you definitely need help with bathing and shampooing your hair.

For bathing, the hospital sent me home with several packs of the towelettes they use (ask them for several on your day of dismissal). Again, those can be heated in the microwave so that you are wiping with a warm cloth. It only takes a single pack per "bath" so if you are ordering them order one per day.

If you are having implant surgery later, save your leftover items. You'll need them again, as you will have drains. But if this is the last surgery you will need, I recommend you donate them to your local Breast Resource Center or your doctor's office.

f. Indulge in a shampoo as soon as you feel comfortable in public. On day 8 (the day before my second surgery) I couldn't take it any longer. I needed a "real" shampoo. I knew I couldn't lean over the sink or shower, so I called a local inexpensive beauty salon. For less than $20 I got a shampoo and blow dry and felt like a million dollars!

g. My extra large tops have worked well. They are stretchy with large armholes and neck. At the 9 day point I can even get them on or off in a pinch, although it's still better to ask for help.

I wear these 24/7 as they are light-weight, wash easily and are comfortable. Highly recommended!

h. Walking definitely helps. The days I sit too much I get stiff and focus more on the pain. While I'm not up to my usual step count (and there was a set-back with the second surgery), I'm on par with over half my usual step count. Yes, most of it is walking to/from doctor's offices and around the house (I have a "circuit" I do through the house.) I also try to use the bathroom farthest from where I am. I have to take laundry to the laundry room a few pieces at a time. I can only carry one item at a time from the kitchen. So it all adds up.

I try to get outside (it's beautiful and sunny this week!) daily to get a few minutes of sunshine. To the end of the driveway then the width house takes about 3 minutes, but it's steps.

i. Strengthening your thighs muscles is critical! I prepared for the month before surgery, practing getting out of every chair and couch in the house without using my arms. It has been an invaluable skill! Standing at the kitchen counter I would do leg bends and side kicks. Nothing fancy, but it all paid off.

Even with the preparation, those first few days my legs were sore. Now I'm walking and used to the getting up without arms so I don't notice any soreness.

j. Your arms will be limited in motion. By the third day I could scratch my nose. By day 5 I could itch my ear. It's day 10 and I still can't touch my elbow. So that should give you an indication of why you need help - and preparation. The doctor does not want you moving your elbow higher than your shoulder and you should not be lifting any weight or pushing any weight with your arms. It all interrupts the healing process inside your breast.

That means you cannot turn on light switches the first week. You cannot reach anything on a kitchen shelf. You can't turn on lamps. You cannot open pill bottles that require you push and turn. You can't open pickle jars. You can't open canned soda. You can't tilt up a bottle of water or a large soda. You can't scratch your neck, scalp or back. You can't push back in your recliner with your arms. You can't push youself up in your bed with your arms. You can't put on your shoes and socks. You can't put on a sweater without help.

Here's how you manage:

• Place back scratchers around the house. They are cheap and disposal when you no longer need them. You can use them to reach parts you can't reach alone.
• Pens are also good for scratching the scalp.
• Use a kitchen spatlua or mixing spoon to turn on the light switch.
• Ask for non-child-proof caps on your medicine or move it to a pill cup at the start of the day when someone else can do it for you.
• Ask someone else to open your drinks, jars and bottles.
• Ask someone to help you with your shoes, socks, and sweaters.
• Practice getting in and out of your recliner ahead of time. If you require your arms you will either need someone else to push it back for you or you will need to position a footstool or chair so you can prop up your legs as needed. I put a swivel chair in front of my recliner so I can swivel it to prop my feet then swivel it away when I want to stand up. It works well when my husband isn't here to push me back.
• You will need to practice getting in and out of bed when someone can help you. For example, you can't reach above your head to adjust your pillow so you need to know in advance where to put the pillow. You'll need to practice moving across the bed without using your arms. That takes a lot of skill believe it or not!

k. You may not recognize your appetite. I thought I wouldn't be hungry, but I've been very hungry! I'm eating full-sized meals, particularly protein, which speeds the healing process. I also want additional food earlier and later in the day or when I wake up in the middle of the night. That's where my smoothies come in.

I ordered six glass bottles.  My husband mixes up a batch of smoothies at night, then packages them in the bottles. (The blender is still too tall for me to reach to put in the ingredients, plus I can't get the berries out of the freezer yet.) I can drink them any time I am hungry just by opening them and inserting a straw!

Order flexible straws that fit your drinks. Since I drink a lot of smoothies, I got the smoothie straws that are wide enough that the ingredients don't get stuck in the straw. 

I've also found I am not interested in cooking. So we've done a lot of pick-up from our favorite restaurants. A good friend has brought over lunch a few times each week so we can sit and chat, just as we do at our weekly lunches. And we have eaten some of the food I prepared and froze in advance - although I'm eating two of the "smaller" servings I thought I would want.

When I do start to cook again, I recognize I won't be able to get pots out of the cupboard, reach ingredients in the pantry, lift pans in or out of the oven, mix ingredients. So I'll just be supervising. Until then, we'll keep eating out!

5. Your breasts will look like the pictures. As you start this journey you and your significant other will want to look at photos of other patients. My plastic surgeon had some excellent photos showing before, in progress, and after complete reconstruction. I'm so glad we took the time to look at those! Otherwise, it's a huge cultural shock when they take off the bandages! So take the time to look and absorb what you will look like "in progress."

6. You may have to wear a mastectomy bra day and night. While I was bandaged I was free to go without a bra. But when they took off the pumps I was fitted with a special bra. It hooks up the front and at the shoulders. I still need help getting it on and off. I'm to wear it day and night for at least six weeks while my breasts heal and the internal support structure heals to hold the implants. The bra insures the breasts heal in the correct position, without falling to the sides. It's important - but it's not comfortable! Just be prepared to follow instructions.

I was lucky enough to have a plastic surgeon who buys the bras wholesale and sells them to us at cost ($37). On the open market they are more expensive. So check with your doctor. It's also really helpful to have someone fit it for you as you won't be wearing the size your were or the size you're going to be.

So there you have my lessons from the first 10 days of recovery. If you have additional questions or suggestions, just submit them in the comments. I believe it's always good to share lessons and information!

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