The lessons I have learnt over the past 3 weeks have been hard. I still don’t know what to make of it all, but I’m waiting until I can get off the roller coaster, sit on the grass, catch my breath and say “what was that?!”. I’ve learnt that I am now a very different person to the person who had surgery back in April, when I first jumped on to the roller coaster, reeling from the shock of being diagnosed with stage 2b breast cancer. It is 3 weeks today since I underwent a double mastectomy and reconstruction; the penultimate step to complete my treatment. Next week it’s back to the oncologist to commence the 5-year course of tamoxifen.
I was home from hospital for six days before complications necessitated re-admission to hospital; the rollercoaster mounted the crest of the rise and then plummeted downwards with such speed that there was nothing to do except shut my eyes, take a deep breath and hold on…….
I’d been discharged from surgery on the Tuesday, with drainage tubes in-situ. I spent the first days at home pottering around the house, sitting on the front verandah and lying on the sofa. Friends popped in and out and I waited patiently for the drainage tubes to run their course and healing to take place. On the Friday I attended an appointment with the breast surgeon, who gave me the pathology results, and arranged for the nurse to change the dressings. Everyone thought I was being self-deprecating and laughed when I mentioned several times that I could smell myself. I was very sore under the arms where the drainage tubes went in, but their removal had to wait until I saw the plastic surgeon the following Tuesday, as all reconstruction and follow-up care was now his domain. On Sunday afternoon I suddenly felt very unwell – achy, feverish, nauseous – it was clear I had some sort of infection. A phone call to the plastic surgeon instructed me to keep taking panadol and the antibiotics I’d been sent home with and then give him a call in the morning. I knew I should have gone to the Emergency Department, but I just couldn’t make Craig drive the 50 minutes into the city, leaving the 3 boys at home until the wee hours of the morning. Sunday night was horrible. I was hot, cold, shivery, burning up, couldn’t eat a thing and couldn’t sleep. I was so ill. Poor Craig didn’t sleep much either, bringing me whatever items I demanded next. Of course the surgeon asked me to present to Emergency the next morning and be admitted to hospital for surgery that night. As the doctor in Emergency took a sample of the exudate coming from the hole where the drain entered my body he said “ is it just me, or does this smell?”! The infection was utterly disgusting; every time I moved, stinky muck poured out of the hole, all over the floor, all over me.
That was now 11 days ago, and here I am, still in hospital. That Monday night, 10 days after the mastectomy, I underwent surgery again, coming out well after midnight. The plastic surgeon removed the expander from the left side, debrided the whole area, doused the expander in Betadine, flushed everything out, put the expander back in under the pectoral muscle and stitched me up again. This time I awoke with two drains on the one side, feeling like I’d been through a mincer. However the fever was gone and I no longer felt sick. I was put onto i.v. antibiotics and the watch and wait began. In the tiny room on the day-surgery ward, where I stayed for two days staring at the white walls, the first milestone was to get to Wednesday night without any sign of redness around the expander – at the first sign of redness or continued infection it was to be immediately back to surgery to have it removed. On Wednesday night the surgeon looked at it and said, “it looks like the redness might be increasing, we’ll give it to until the morning”. The thought of having to undergo yet more surgery and anaesthesia was too much; as the iv antibiotic moved into my body that night I massaged the breast area to get the blood circulating where it needed to go to, and prayed like crazy that the expander would be saved and I wouldn’t need more surgery. The next morning all signs of redness were gone and we all breathed a sigh of relief…and gratitude.
By this stage I had been moved to the breast unit of the hospital, into a 4-bed ward. While the staff were wonderful, lying behind a curtain with no view to the outside world was very difficult. Not to mention the noise of the ward overnight as people returned from surgery with their machines that went “ping”. One of the drainage tubes was removed and my job now was to sit and wait, and have antibiotics pumped into me. I also had to wait for the other drainage tube to slow down as there was no way I would be sent home with the drainage tube in-situ this time. Each day without signs of infection flaring, was one step closer to thinking we’d make it. Finally the microbiological results came back – I had an E.coli infection!! Thankfully the tests showed the bacteria were very sensitive to the drug that I was on. More relief and gratitude.
On day 6 in hospital I was moved into a beautiful large private room, with a big window looking out over the northern suburbs. Finally, I could rest in solitude and concentrate on healing and recovery. As things improved surgically, my body seemed to give it all up and waves of fatigue engulfed me. At first I was alarmed that something was seriously wrong in that I couldn’t read without my eyes glazing over; I felt so tired I could barely breathe. But then as I thought about it, in the past 7 months I’d had 4 surgeries and general anaesthetics, 4 months of chemotherapy, the trauma of being diagnosed with breast cancer and had worked as much as possible, which was lots in the 6 weeks leading up to the mastectomy. I think my body was just screaming “Enough!”. As I lay on my bed with endless hours before me, the dark thoughts tried to crowd in….what if this fails? What if this doesn’t heal? It will actually be many, many months before we can be sure if this latest surgery has been successful. Apparently implants can have a biofilm form around them where bacteria are protected and can lie dormant while taking antibiotics, but they can set up new infections once the antibiotics are ceased. I will need to be on antibiotics for many months, and then we’ll need to watch and wait again for a month or so once I come off the antibiotics. The incidence of rebound from biofilms is very high. During this time I once again turned to my mentor in times of fear, Dr Rachel Naomi Remen, and started re-reading her Kitchen Table Wisdom. The words in this book evoke such calm and never fail to place the hard times into perspective. I re-read the chapter where Rachel had major abdominal surgery and was left for several weeks with an enormous open wound, one that she couldn’t bring herself to look at as the bandages were changed each day. One day she did look down and noticed that the wound was healing itself, from the inside out. I took solace in this. If a wound like that could heal without complications, then surely my breast area and expander could heal without complications also. But it would take patience. Rachel is so good at easing my fears.
For the last few days, apart from fatigue, I have been well. My blood pressure has never been so normal. I am being fed delicious, nourishing food, I have no stress or noise and nothing to do except rest, read and stare out the window. And it is driving me crazy!! My body has been given an enforced rest and my mind is finding it difficult to chill and accept it. Every day the doctor measures the volume in the drainage bag, and every day it is still about 15 mls above the cut-off for which he will remove the tube and allow me to go home. Patience is not a virtue I was born with. I have repeated to myself so many times “God give me patience…but hurry!” Still, I know this is where I’m meant to be – there is no way I would be resting this much at home, especially with Christmas only 12 days away and so much to do still! I’m finding Christmas is being stripped back to the bare essentials of what really matters. But I am desperate to get home and decorate the tree that the boys selected from the Christmas tree farm last weekend.
I have learnt so much about myself. There is a calmness about me that was not there the first time I underwent surgery back in April, soon after being diagnosed with breast cancer. Since then I’ve learnt to breathe, be still and practice mindfulness and I’ve learnt that the mind can play a major role in what happens to us physically. I’ve always known that things will always work out the way they’re meant to, but now I don’t try to second-guess how that will be. It is what it is.
Tomorrow, all being well, I will finally be discharged. We will visit my adored 97-year old grandfather for our annual pre-Christmas visit and linger in his beautiful garden, where we had our wedding photos taken 23 years ago. We’ll then go home and whatever energy I have left will be spent with Christmas music playing, directing the boys as they trim the Christmas Tree. After Christmas we will head to the beach for our annual vacation. Unfortunately this year I will need to stay in the shade and cover up, as the antibiotics cause sun sensitivity and I could end up with nasty burns if I don’t pay heed. I can live with that. I look forward to seeing in the New Year in a house right on the wild beach, with just my boys, as we step off the roller coaster for a while and say “What was that?!”. Life is good.