A little over two weeks ago, I went up to Berlin for the mastectomy and rebuild of my left breast using my belly. I knew it wasn’t a small operation, but the warnings beforehand about all the possible complications rattled me. Still, it was either the cancer or this operation.

I had three surgeons and their teams looking after me in Berlin: a breast cancer oncologist surgeon, plastic surgeon, and my endometriosis surgeon. The oncologist in particular was incredibly helpful, setting up everything even without having a referral or seeing me.

I went into hospital one day earlier than normal, so we could get all of the tests and planning done the day before the actual surgery. As usual, the surgeons were the best, but this hospital is not so good on the organization front - 6 hours to ‘check in’ and get to my room. Despite having told me I needed to empty my bowels the next day, I didn’t, and was able to eat and drink normally until evening.

Op day

The day of the operation, I was first in, and put to sleep very quickly. About 10 hours later, I woke up in intensive care. I had a binder around my abdomen, three drains in my breast, two in my abdomen, plus a negative pressure vacuum with the sponge all along the abdominal cut. I actually woke up screaming about the pain in my heel, my foot. Most likely, the Achilles tendon had been resting on the hard operating table and was really upset with me. Loads of painkillers and stretching and that pain disappeared overnight.

The nurse came to check on the rebuilt breast every hour for 24 hours, using a Doppler device to check that the blood flow was good. After the first day they checked it every two hours, then four, then twice per shift until when I left nine days later. I was given intravenous antibiotics for five days, several times a day.

The most important thing, was to ensure a good, stable blood supply to the new breast.

Too many tubes!

I wasn’t really mobile for the first four days, with high pain and so many drains, IV lines and a catheter. Unfortunately in an organizational hiccup, the nurses had had me pack my things before the operation in case I moved rooms. That means that I had nothing other than my phone and I reduced toiletries bag, because the nurses were so overworked that I couldn’t in good conscience ask them to help me unpack some things. They didn’t even have time to help me wash or change the sheets most days.

When is the drains started coming out, I could sit up more easily, and stand for short periods. The catheter came out on day four, but because there was an infectious patient in the same room, I didn’t even try to get to the bathroom, instead I used a commode. When she had been moved into quarantine, and the bathroom disinfected twice, the nurses let me walk to and fro. It’s fantastic when the catheter comes out. It’s even better when the neck IV lines come out.

In case you’re curious, the surgeons separated the skin from tissue all the way up that blue line to the mole, from the hips. When the belly tissue was removed, they had to pull the skin down, and make a new hole for the belly button, poor mangled thing. My entire belly and breast was numb to touch - such a strange feeling!

The vacuum drain and the drains in the breast also came out on day four, I wasn’t really draining much at all, but that was probably because I was it moving. This was probably the most painful thing, with three surgeons pulling of the sponge along the cut, and the drains from under my breast. The remaining drains came out two days later. It may have been a little soon, because shortly afterwards my breasts swelled tremendously, and the belly started swelling above the cut to that mole. It may have also been due to the heat (30C!), especially as German hospitals are not air-conditioned.

Ongoing compression

Over the next couple of days, compression clothing was fitted – a compression bra, and what she called Bermuda shorts, from under the breast down to my knee with compression around my middle. The hooks were not too bad to handle with my poor fingers, and this clothing were a huge step up from the abdominal binder, which absolutely did not fit my shape.

The night before I was due to go home, a seroma appeared in the previously troublesome quadrant, and a solid hematoma spread under the breast. The plastic surgeon even came out of an operation to have a look at the ultrasound, but said at this point just to wait and see. I was taking antibiotics anyway, and the seroma was not large enough to drain with a needle.

The nurses hadn’t counted on me going home so soon, so the taper off the painkillers was abrupt. The seven hour journey home was reasonably uneventful, a couple of stops to walk around but I was ready for bed when I got home. 

At this point, both the breast and the belly were mostly numb. There’s a layer of liquid between the different layers of skin and tissue - all nerves and most of the lymph system were cut. The most painful thing was a massive blister from the original abdominal binder.

Hospital checklist for mastectomy and DIEP

Here’s the essentials - what was actually useful during my hospital stay:

  • Slip on shoes, no socks.
  • Wet wipes, both for general skin washing and intimate wipes.
  • Electric toothbrush - much less energy required.
  • Earplugs, because the room was full of snores and sleep talkers.
  • Mobile phone and charger. Make sure you give the phone, or at least a phone number, to a nurse to deliver to you in intensive care, if your family are not waiting in person during the operation.
  • A large shawl that could double as a wraparound skirt, brilliant in the heat with the compression on. In winter, a bathrobe would do the trick.
  • Hand disinfectant gel and disinfectant wipes for the bathroom.
  • All results of tests leading up to this operation, and reports for related medical conditions.
  • Extra short hair - so much easier to take care of.

I’d ask visitors to skip the flowers, and instead bring fresh fruit or raw vegetables to munch, if you are staying in a German hospital. The food is abysmal. Bread, cheese and preserved meat for breakfast and dinner, and a tasteless warm meal for lunch. Also, be prepared for shared rooms with up to five people in them, which means they will always be hordes of visitors.

I went home on day nine, with the rest of my antibiotic course and a couple of mild pain killers. More about the start of recovery in the next post.