Suzie's reconstruction diary part 3: Back at home
After 4 ½ years on the waiting list for bilateral DIEP breast reconstruction surgery and being first on the waiting list for more than a year, Suzie and her husband decided to pay for the surgery privately.
This is part 3 of Suzie’s journal of her surgery and recovery experiences. Here she details her first three weeks being back at home after her breast reconstruction.
Back at home
I was so tired after all the catchups with family yesterday that I fell asleep really fast. I had to spend about half an hour pacing and rocking myself to ease my back pain at 1am and again at 4am, but the longer sleeps in between were most welcome. My headache (reaction to the anaesthetic) has now gone but all the extra mobilisation that comes with being home has brought additional pain. I also have to remember to empty my drain twice a day and record how much fluid it contained. Lucky I’m not the queasy sort!
It is so good to be home but it’s very hard to stop myself from doing ‘just one quick thing’ several times a day. I’m supposed to be doing nothing except walking to bed or to the bathroom. Oops!
I had a much-improved sleep last night.
My pain has changed from all-over pain across my chest and abdomen, to three distinct areas – abdominal drain insertion point, and the places in my chest where some rib cartilage was removed. It’s much more manageable but it’s still a nuisance.
I am lucky that my husband is medically trained and is happy to change any of my dressings that leak and let in water when I shower. He sorted that all out for me again today. I’m not sure how I would have managed without his care. I was given consent from the nurse to have my husband remove my last drain tonight as long as the output was small enough. What a relief to have it out!
One week! I had another broken night with several wakes due to back pain from only being able to sleep flat on my back. I also forgot to take my midnight painkillers so there were a few tears when I woke this morning in much more pain than usual.
Because my daily step count is now high enough, I can finally ditch the compression stockings that I have had to wear 24/7. Another small milestone that allows me to be more comfortable. I decided to potter about with a craft activity that had been sitting around for a while today. It feels great to be doing something interesting – even if I do need to take lots of breaks to stretch and rest.
Finally! I got a reasonable sleep last night and because I have no drains, I can sort of lie on my side a little bit now, even though I think I’m not meant to – but it really helps my poor back. I’m trying to take it easy today and listen to my body but it’s hard to listen to your body when you don’t like what it’s telling you.
This afternoon my daughter took me to an appointment to have a full dressing change which I was really looking forward to. It will be good to have less stuff stuck to me and I hope it will allow more comfortable movement. However, I did not anticipate that having my dressings changed would take an hour, which, combined with a half hour drive each way, made for a very tiring afternoon. I was overwhelmed with the enormity of what I have been through and how long the road ahead still is. I had a weep and a cuddle with my husband and went to bed early.
I enjoyed some brief outings to the supermarket, library, and shops today. I still walk slowly and have to keep reminding my husband to slow down for me, but it was nice to get out of the house. I am struggling with pain in the late afternoon/evening in the area above my new breasts. This is the area where the nerves have been moved around and the swelling is squashing them a bit which is causing the itchy, burning, tingling, scratching sensations that are driving me crazy.
I had a productive and happy morning including a brief outing to the shops, hot chocolate in the sunshine, a bit of baking, and directing (no lifting for me) the moving of some furniture. It’s wonderful to be able to do things that I couldn’t manage only a few days ago. My surgical wounds are starting to itch – a sign of healing. Whenever I feel sore or tired, all I need to do is look down at my chest and I can’t help but smile. It’s so good to feel feminine again.
The week ahead without being able to leave the house seems long and daunting today. I pulled out some fabric I bought over the weekend and got the dress pattern laid out and cut out. It was strange but satisfying to take my body measurements and adjust the pattern sizing to fit my new shape. I had been waiting to make this dress for a few months, but without knowing my new size I had put off buying the fabric, reasoning that there was no point in buying or making new clothes until now. I found the task soothing and it didn’t cause me any discomfort, but by evening the area on my chest was screaming, and I found myself in and out of tears due to the pain. Not the best way to finish an otherwise pleasant day!
I can’t believe it’s been two weeks since I had surgery. The time has gone so fast – especially since I have been home. I clearly overdid it yesterday because I feel really low today. I’m tired and sore and feel like I have gone several steps backwards. I have gone back to maximum doses of my pain meds (anti-inflammatory and paracetamol) and am trying to keep my spirits up. My progress was so rapid and noticeable in the first week that now I’m finding the progress frustratingly slow. I’m still improving day by day, but in my head I’m ready to be ‘all better’ although my body says ‘not yet’.
Today I had my dressings changed again at the clinic. The nurse removed all the waterproof dressings and steristrips and replaced them with micropore tape. She was very happy with my healing and my range of movement. The new dressings are much more comfortable than the last lot. The micropore tape is flesh-toned and is almost invisible on my skin which means that I can now get a better idea of the final result. Incredible! I’m sick of being stuck at home, bored, having to rest a lot, and when I am doing things, I’m always aware that I shouldn’t be doing anything. I’m sore in the afternoons/evenings and just want to go to bed, but once I’m in bed I can’t sleep and wish I could do something interesting. I’m too tired to concentrate to watch movies or read so I’m starting to go a bit stir-crazy. My family are busy with work, university studies and school exams and it feels like there’s nothing much of interest happening in my little world.
I had a better morning today and managed to get the lining for my new dress cut out. Now I’m ready to start construction of the dress but that will have to wait because I’ve worn myself out.
Later in the afternoon I had an appointment with my cancer rehabilitation and lymphoedema physio. I have been seeing her for almost four years now. She was checking that the lymphoedema in my hand and arm was not unduly affected by the surgery and lack of mobilisation since then. She was surprised and happy to find that it has improved significantly in my forearm and remained stable in my hand and wrist. Although the appointment only required me to lie on a table while she used massage to manually drain my arm – a treatment that I have undergone many times before - I was utterly exhausted when I got home. My reaction to this took me by surprise. I was overwhelmed, and it took a wee cry and several squares of dark chocolate to get back to an equilibrium. My lovely husband took me out for a relaxed dinner, which was lovely but left me shattered, and ready for bed by 8pm. What a rollercoaster!
My surgical wounds are often itchy, and I get relief from gently running my fingers along the tape that covers them. I went for a short walk down the road today and realised that the reason I still walk so slowly is that if I take my usual longer strides it stretches my tummy in an uncomfortable way. I also get breathless on hills because I can’t take big belly breaths for the same reason. The skin and tissue are slowly stretching but it might be some time before big strides are comfortable.
This morning I drove for the first time – not so much by choice, but more because of necessity. I had no problem operating the foot controls and felt completely able to execute an emergency stop should it be necessary. The most challenging part was pain in my rib cartilage area while turning the steering wheel. I haven’t had any pain in that area for several days, but the pain continued for several hours after driving. When I got back from driving my brain felt tired. After all this I have decided that it would be best to delay any more driving for another week.
Three weeks since surgery and a second full night’s sleep! I am walking completely upright now, but it sometimes takes a moment or two for my tummy tissue to stretch after I have been sitting down for a while. I am down to only one dose of paracetamol per day and half the initially prescribed dose of anti-inflammatories. I find I get tired more quickly when I am taking less pain relief. My tummy still feels tight and the area just above my pubic bone is tender to the touch. My rib area is still a bit tender after driving yesterday too. In the evenings I am irritated by the tingling, crawling sensation along the top of my new breasts. Taking my clothes off helps with that, which makes bed time all the more inviting!
I had two big outings planned for the day – wedding dress shopping with my eldest daughter in the morning, and an appointment at the clinic with the nurse and surgeon in the afternoon. The wedding dress shopping was so much fun and luckily there was time for a sleep before the afternoon appointment. At the clinic appointment I had my dressings changed again and the surgeon was very pleased with how I am healing. I had noticed this morning that my abdominal wound area was a bit red and swollen and was more tender than usual. I raised this with the surgeon, who was not concerned at this stage, but she gave me a prescription for antibiotics in case it gets worse, and strict instructions to call her before starting the antibiotics. I’m hoping she is right, and the antibiotics will not be needed. I have a bit of dry, peeling skin near to the taped areas and she advised me to use Bio-Oil to keep it well moisturised. She said to continue normal day-to-day activities but start to include some more walking over the next few weeks. The goal is to regain my full strength by the six-week mark, at which point I can start exercising as normal. I can also stop using a pillow under my knees in bed. I had the opportunity to ask some questions, and the big question I had on my mind is how do I monitor myself for cancer recurrence now that I have had reconstruction? She explained that she is not a cancer doctor and I need to ask my cancer doctor that question.
I ended up doing some research myself and it seems the answer is pretty simple: watch for lumps, thickenings, changes in size or shape, puckers, discoloration, etc – just the same things that women with natural breasts need to look for. I feel so much more confident that I can take care of myself now that I have that information.
I woke feeling teary and in a lot of pain. Eventually I realised that the busy day yesterday has brought on a chronic fatigue crash. I experience cancer-related chronic fatigue and I’ve had it for over 4 years now - hence ‘chronic’ in the name. Having this condition means that even when I’m not recovering from major surgery, I have to pace myself in everything I do, every day. It also means that I cannot get through a day without a sleep every afternoon. If I overdo it, sleep poorly at night, or miss an afternoon sleep I risk having a crash. During a crash I have intense pain throughout my body, I can hardly move around, I’m exhausted, my mood is very low, I cry a lot, and, ironically, I struggle to sleep. Crashes last from a day to a week, and the only way to get better is to take high doses of pain relief and have lots and lots of rest. I wish I didn’t have cancer-related chronic fatigue, but it is almost certainly permanent, and I have to learn to live with it. It’s a cruel reality for up to 30% of breast cancer survivors.
I am really struggling with nerve pain across the top of my new breasts. It feels like tiny electric shocks and is very sensitive when my clothes touch it. Gentle strokes with my fingertips gives me relief for a short while, but because I am highly sensitive to the drugs that are commonly used for nerve pain I cannot take them. The surgeon said it will diminish over time but warned that it could take as long as six months to go away. I really hope that will not be the case for me.
Today felt like a turning point for me. Although I still have pain at times, it is manageable, and I feel ready to reduce my pain relief further. I have stopped taking paracetamol and am just using anti-inflammatories for now. My body feels like I can move freely, and I can do almost everything fairly comfortably. I am now able to reach above my head to hang up the washing, but I am still not allowed to carry anything heavy. When I tense my pectoral muscles, I feel pain in the area where the rib cartilage was removed. Also, when I twist my abdomen while tensing my core muscles it feels tight and weak. Clearly these are the areas that will need the most rehab once I am allowed to exercise normally.
Read more about Suzie's breast cancer story
Read rest of Suzie's reconstruction story:
Part 1: "The day has finally arrived"
Part 2: My hospital stay
Part 4: The weeks after surgery
Read Suzie's story of being diagnosed with triple negative breast cancer here.