It’s been ages since I’ve posted – I’m still alive and kicking.
It’s sad how when you have to write for your main day job, your ‘hobby’ of writing falls by the wayside. Especially when you have to conserve your energy as you battle chronic illnesses and recover from such a massive cancer operation.
DIEP recovery is slow – you need patience and help
I had one spot in the middle of my tummy cut that had the local doctors worried for a month or so – it simply refused to close! And I got a small infection in the cut on one hip. But both problems were eventualy resolved, with antibiotics, drainage and silver-impregnated dressings. Also disturbing, was how my body spat out the stitches over the next 8 months!
The months after the op were a grind – washing the compression clothing daily, dragging my poor stiff body to the doctors every few days, changing dressings, sponge baths and no showers, not raising my arm to minimise any additional trauma to the transplanted breast. The bandage industry must have loved me – there was only one brand I didn’t react badly to!
I dove deep into games playable with one arm to distract from the pain, broken up by a daily shuffle that kept getting a little longer.
The transplant started out very hard and high, as this photo shows. The scabs looked dreadful, and there were a couple of spots that were very slow to close. Over the last 1.5 years, it has softened (apart from one spot that had to be cut out), and dropped to be almost the same as my non-transplant side. Now when I wear a bra, you wouldn’t know one side is a transplant, apart from having no nipple!
Someone to help
Someone to help you get washed and dressed, change your bandages, help you stand up, cook, clean and wash clothes and the compression clothing… This is invaluable after such an operation.
And when they are not available, make sure the important things are at bench height: cups, glasses, plates, tea and coffee, milk, snacks, the microwave – not stretching in the early stages helps cuts stay together.
After 6 weeks I was ‘allowed’ to go around without compression, but kept wearing it for a few more weeks – I still couldn’t stand up straight, and I needed something to hold the bandages in place more securely on that darned spot on the tummy cut.
But the doctors and surgeons believe the constant compression greatly helped the healing process.
I still use the compression bras when I want a little more support, or for the days where my chest is sore – they are so comfortable!
Staying bent helps
I’m not a back sleeper. Or at least I wasn’t! After a DIEP, the only possible sleeping position is on your back. You should sleep with your chest/head raised to stop fluid pooling around the transplant. Plus, to not pull the tummy cut, you need to sleep with a pillow under your legs. So, you end up sleeping in a kind of a V position – I relied on a wedge pillow behind my back and a lymph-leg pillow under my knees and lower legs.
For months, I slept on the sofa bed upstairs because it was easier to roll in and out of. It took me about 4 months before I trusted I could safely get myself up from the futon on the floor without damaging anything. And about 12 months before I could sleep on my side, with the help of a body length pillow.
I’m still using both pillows – the wedge is ideal on the sofa or in bed for reading with better back support, and the lymph leg pillow is great while I’m working.
Good dressings help
You will need to take your dressings off at least once a day to wash with salty water and disinfect. Which means your skin is going to get very annoyed with you. I found the (expensive) silicone dressings the best – no ouchiness on removal, and no reaction from my sensitive skin.
The (even more expensive) silver-impregnated Dracofoam wound dressings were for the holes that refused to close for a few weeks. I used the silicone dressings over them, as their adhesive caused rashes. Thankfully, I could purchase these dressings with my insurance – private, they would have cost a small fortune. But they were definitely worth it!
Around this time, I worked on increasing the distance I could walk. After I got home, walking from the car to the doctors, or from the garage to the house was all I could manage. A week later, I made it to the pokestop a bit down the road from the doctors. At about 4 weeks, it took 40 minutes, but I made it the coffee shop in the middle of the town (normally a 15 minute walk).
At 8 weeks I had to shovel snow even though I wasn’t ‘allowed’ to by the docs – you are legally required to keep your paths clean in Germany, and my partner was working in a town 5 hours away. I took it slowly and spread it out over the whole day.
At 10 weeks, I was able to walk around the plateau (normally 60 minutes, but it took a good 2 hours). At 12 weeks, I could walk to my physio. At 4 months, I could also walk back, although it killed me for the rest of the day!
It’s not that you’ll be back your normal self after 6 weeks, the typical period doctors suggest you’ll need.
I need to exercise and move to make sure that area is well supplied with fresh blood and the fluid drains.
Being mindful and trying to breathe deeply, or using any of the lung-exercising tools like the three-ball flow ‘toy’ will help.
I had to ‘practice’ with my lung ‘exerciser’ 4-5 times a day. Fun.
Because you can’t/shouldn’t use your arm on your transplant side, the muscles in your shoulder and back need work to get their range of movement and strength back. And, ongoing lymph drainage massage on the transplant, arm and belly helps to prevent edema.
I’m still getting regular lymph drainage massage, and still need occasional help for my shoulders and neck because I’ve worked too much.
The risk of all breast operations – fat necrosis
Part of the transplanted breast died on day 8 after the operation – maybe the heat had something to do with it? In any case, the outside of the breast suddenly swelled up and I developed a fever. The plastic surgeon came out of the middle of an operation to have a look, and decided the risk of cutting in again so quickly and seeing what happened was not worth it. Better to heal first, let things soften, then take another look.
The dead tissue in the outside of the breast was quite numb for many months, while the rest of the transplant was hard. But as the hematomas ‘melted’ and the transplant got software, that bit of fat necrosis didn’t.
At 6 months, this lump pushed into my arm and had pinched a nerve in my chest. I couldn’t even hold my arm against my body, let alone type comfortably. I had my arm always behind me, rotating my shoulder inwards, and it was doing terrible things to the tendon-based arthritis in my neck and back.
Fat necrosis is common, and almost always occurs after breast operations. It’s not bad or dangerous. But when it is a very large lump and pinches a nerve, it needs to be removed.
A second operation to remove the dead tissue
The local hospital’s best clinic specialists again gave terrible and completely unscientific advice: “Pomegranate juice and homeopathy will work just as well as chemotherapy”; and “This lump could be cancerous or something worse, and could kill you tomorrow – you need to get it out immediately, at best, today!” Ummm… oookay.
The planned operation was delayed at the last minute, thanks to my insurance provider. I had to get approval from an independent assessor to prove it was not cosmetic but rather medically necessary.
But it went ahead a few months later. A short operation of 1.5 hours, no bed rest needed, a few stitches and tape to hold the cuts shut. I went down to the cafe to have a coffee that evening! They had ‘cleaned’ up my lymph removal scar too in case that had contributed to the nerve pain.
Tissue analysis revealed – yes, it was definitely fat necrosis, and no it was not dangerous at all. Luckily, they’d packed too much belly into the transplant, so cutting out the dead bit meant I ended up with a nearly matching-sized breast!
I went home a few days later and it healed well with no problems.
A year and a half post-DIEP
I still have some hard lumps that are slowly softening – massive hematomas are slowly broken down and absorbed by the immune system. Of course, mine takes longer because my immune system is stressed by the other illnesses, like arthritis.
The first two mammograms were nerve wracking, but clear. There is no guarantee either tumor will reappear, in the other side, on the chest wall or metastasize to somewhere else. I’m due for my third soon.
I haven’t recovered feeling in my belly or my breast, which is quite disconcerting and needed time to adjust to. Being quite clumsy, I can’t feel how hard I bump into things and have had more than a few bruises appear. The feeling probably will never return. Pimples are more likely on the transplant and take longer to heal due to the reduced blood supply. My skin reacts much more easily to things I’m sensitive to, like washing liquids and sweat.
The docs and physio have theorized that I’ve developed an incisional hernia, probably through one of my old laparoscopy cuts, but it’s impossible to image. It’s not near any of the DIEP cuts, but stability was lost over the old laparoscopy incisions when they separated the skin and pulled it down for the DIEP. It’s worse when I bend and exert myself (washing floors), so I just have to be careful and keep an eye on it.
Impact on other illnesses
I haven’t been able to return to the Humira for the spondyloarthritis (psoriatic), as the immune system needs to break down the hematomas and what’s left of the necrosis in the transplanted breast. Turn that immune system off and the lumps stay as they are, plus it risks infections. Stiff and sore is my new normal, and the local orthopedic doctors refuse to prescribe physical therapies for arthritis (“go to a rheumatologist and get immune-suppressants” …. um, no!)
The costochondritis (as part of the arthritis) has also become harder to deal with, seeing as the transplant is essentially dead weight hanging off clips in the chest muscles on one side. I resort to an ibuprofen when it’s too bad, otherwise, a massage chair, and a doubled massage ball on the wall while trying to breathe and heat packs are my go to tools.
The Reynaud’s has become so much worse. Stress? An argument? Immediate white fingers and toes. Too much typing? No blood in the hands! Cold weather? You don’t need your fingers! Sitting for just 15 minutes? You don’t need your feet!
Constant heat packs, hot water baths, and always raising feel when sitting is the only way around this. I have a portable hand-header and those disposable heat-packs where iron filings react with the oxygen for emergencies. Working in a normal office with a normal office chair is unthinkable at this stage. Or even travelling long distances without being able to put my legs up!
Not post-DIEP, but post-prednisolone, the rosacea and demodex-induced eczema is out of control and even affecting my eyes. Unfortunately, no doctor around here wants to try to treat it – the local dermatologist recommended to wash twice a day and use an over-the-counter moisturizer. He just shrugged when I said I was already doing that.
So, tea tree oil, gentle cleansers, moisturizers, special eye wipes, and a whole lot of swearing because so far, nothing has worked. It wasn’t helped that my new glasses proved I had a latex allergy (the new silicone nose pads contain latex!)
Cosmetic tummy tucks and breast surgery? No way!
Would I recommend a cosmetic tummy tuck? Absolutely no way! It’s a very difficult operation, with significant risks. You may end up with a flat belly, but also a mangled belly button, and permanently disconnected nerves. It’s not worth it. Plus, if you have struggled with putting on weight before the tummy tuck, you’ll struggle afterwards. I’ve put on 5 kg, which makes the cut across my tummy tighter, and probably has caused the incisional hernia. Also, never ever cosmetic breast procedures! The risk of necrosis is there, with any type of breast surgery.
Of course, I have no problems where there is a (physical) medical reason, like to remove massive folds of skin from weight loss, or to eliminate back problems.
Would I recommend DIEP?
Yes. At least in certain circumstances. If you have enough belly fat and are permitted to have a mastectomy instead of a lumpectomy, choosing to have a combined mastectomy-DIEP is ideal. Having a DIEP years after a mastectomy makes it more difficult to get a ‘clean’ and well-shaped rebuild, and carries more risks of infections and necrosis.
Having a lop-sided chest puts loads of mechanical strains on your posture, your neck, back, ribs, arms, shoulders, … Had I been diagnosed with cancer in both breasts would have made the decision much harder – double mastectomy with no rebuild, or double mastectomy plus immediate DIEP on both sides. I’m not sure which I would have chosen. Either way, it needed to be a balanced result thanks to the arthritis.