Three years ago I asked my plastic surgeon if I could keep my tissue expanders when they were to be removed. He laughed, and discreetly filed that request next to a lot of the other stupid things I asked in our brief consults.
I’d planned to keep them and use them as paper weights, cause let’s face it, one can never have enough paper weights. I’d also invisaged I’d get them out at parties, or let the kids take them to show and tell. Can you imagine? Oh the horror!
Last night, as I rolled into theatre, I thought I’d revisit this request. My plastic surgeon mumbled something about infectious diseases and hospital policy.
Then grasping at straws I asked… “Would you photograph them on your iPhone?”
I waited for the “No!”, but to my delight he replied… “Sure. Not me, but I’ll get someone else to do it”.
I didn’t expect for him to follow through with his promise. Theatres are serious places with very rigid procedures.
As I drifted off to sleep under the cloak of Fentanyl and anesthesia pulsing into my veins in the theatre I’d already had three surgeries in, I remembered fondly the original bearded nurses I met back January 2013, and the familiarity of the weird 70’s vinyl looking wallpaper. I briefly contemplated how far I had come from the fear and dread of three years ago. Then before I knew it I was out like a light.
I don’t fear the cancer returning now. Because I’ve played that thought over and over in my mind a million times. It’s almost boring to think about. If the cancer comes back one day, so be it. There is no rhyme nor reason to who develops mets. Despite our best treatments and people’s health status at diagnosis, it just happens. Shit happens.
I’ve seen a lot of cancer in recent years. The worst of the suffering and the best of the love and compassion that comes. How profound and utterly terrible the disease can be at the same time. With four to a room at this hospital, you get to meet people at varies stages and types of cancer. You see a lot of cancery crap.
I will never forget the time an emaciated man laid opposite me when I had my first mastectomy. He had stage four bowel cancer and he looked and sounded like my own Dad in his own late stages of cancer. That was really confronting and I found myself having to escape the room and walk the halls of the small ward, carrying my surgical drains full of blood to get some separation from such a confronting association.
Then there was that lovely lady who I chatted quietly with through the depths of the nights after my second mastectomy. We spoke quietly about our children, careers and travels. There was no discussion of death despite it being the white elephant in the room. And in the mornings she conversed with the doctors and nurses so cheerfully and with such positivity, despite having endured two primary cancers. She was now facing her imminent death from the second. They gathered round her listening to her stories, almost vigil like. I was taken aback when a doctors voice waivered when discussing her predicament. In the whole week I was there, no family visited her.
It’s hard to be an early stage cancer patient and be present while all these devastating and heartbreaking conversations occur around you. Despite ones best intentions at privacy. The guilt is huge. Why am I okay?
Take for example witnessing the desperate play that happens on a daily basis in cancer wards, when nutritionists visit to try to make a difference to patients who are very clearly wasting away as their disease grips them so tightly. Or the look on family members faces when they visit and see their loved ones fading. Such heartbreak!
To think, it could be me one day? Or maybe not.
The new hospital will be set up with single patient suites which will avoid these confronting moments. But in a way, patients might miss out on the chance to share and connect over what they know of their disease. These moments in the middle of the night. Where sharing a room makes the experience less lonely.
Last night, my plastic surgeon did his best to make me feel more ‘normal’. But it’s been no easy feat.
Back in February 2013 my cancer side tissue expander began the process of contracting into my chest after a nurse accidentally closed one of my drains the night after surgery. That begun the inflammation and scarring that would form a capsule around the tissue expander and compress it. Radiotherapy later in the year further exacerbated this.
The plastics surgical team worked hard to cut out the scar capsule and try and restore the shape of my chest. As a result what should have been a simple “exchange” surgery from expanders to implants, has meant more trauma than anticipated.
I have surgical drains again and will have to stay in another night because the drain output hasn’t slown down enough. It feels like I’ve had a third mastectomy pain wise. The other side, is peachey creamy.
The wonky 2 o’clock and 8 0’clock nipples I’ve written about many times have almost moved to 3 o’clock and 9 o’clock. Down the track when my new teardrop implants settle in to my body, my plastics doc may look at some corrective procedures which may include injecting fat from my stomach into the radiated side. Apparently the stem cells in it can improve radiated skin so that it resembles baby skin. Remarkable!
My plastic surgeon visited me late this arvo. He came good with his promise and came to show me the images he had someone take.
So here they are… these expanders got carried around inside me for three years. They went to Indonesia and Hawaii and they weren’t used to smuggle drugs. There was lots of pain and not a whole lot of love for them. But I’m glad they are finally out of me.
Home tomorrow if all goes well to celebrate my kids birthday and Mr Cool and my wedding anniversary.
To end on a silly note to celebrate the completion of this surgery and the ridiculous nature of what me and my breasts have been through, here’s a lame tribute to Benny Hill.
My Dad loved Benny Hill. Rest in peace Dad!
“I can’t believe it’s taken so long to get to this point!” said my plastic surgeon as I entered the big smoke hospital consult room this morning.
“Oh well, I’m still alive!” I replied.
“You are awfully cheery about this.”
“Yes cheery today, but there’s been plenty of frustration too.” I sat down.
Three years ago he inserted the first tissue expander into my chest immediately after my breast surgeon completed my mastectomy.
Way back then he wore a tie with a black and white feathered pattern that matched his facial hair. Six months later, with my second mastectomy, I missed his tie because he was already in his surgical scrubs when he came to mark me up with purple texta.
He shook his head and said softly “Just ridiculous!” as he opened up my file.
He went on with some sort of attempt to explain what had transpired…”it’s all left up to the bean counters you see! Category three should take up to twelve months, but there isn’t the same consequences for not meeting category three targets that there are for say category one and two. We’ve got patients with serious disease and they should be able to live out the final years of their lives feeling as normal as possible!”
The frustration at the system is thick all round.
“Okay, So what am I going to do with you? ” He scratched his head.
I take off my shirt, roll down my tank top to my navel and sit on the bed bare chested.
I’ve done this so many times it’s like I’m just being asked to simply take a seat.
“Hmmm, can I take a photo?”
“Sure!” I replied.
He reached back to the desk and picked up his iPhone and snapped a picture of both expanders. (I wanted to write breasts, but they are nothing like breasts). I smiled as if I was posing for a headshot.
“Can I take a photo of your tie?” I asked. “I love it!”
“Thanks! I got it from Russia” he said.
The passage of time has done damage to his work. By damage he means my road train weight gain, the lack of symmetry, the capsular contraction of the first expander and the poor blood supply to the radiated side.
He starts to formulate the plan…
“I’ll need to hack away at the capsule that’s formed. I don’t want to take the front off it though cause your skin is thin. So I’ll hack away at the back of the capsule and the other scarring that has formed around the original incision sites and try and free it up the a bit. How does that sound?”
Anyone who thinks this is a cosmetic boob job is an idiot. Mastectomies and radiotherapy are no picnic. The body is left tight and sore. There is scarring and fibrosis. There are lumps and tenderness and the nerve pain and pulling are a constant reminder of the trauma of having body parts amputated. Add to that the surgical clearance of all the nodes from your armpit.
This lack of any pleasant sensation from my chest weighs me down at times. The sensations are numb and painful at the same time. How is that even possible?
“What about the 2 o’clock and the 8 o’clock nipples? Can they be moved?” I inquire.
He is straight to the point. “Look, I can’t do anything about the nipples at this stage. Better to complete the double exchange and then see what we are left with. See what we can do down the track when it all settles.”
When he suggested he could probably get 200-300 cc sized teardrop shaped implants in my chest I nearly fell off the chair. I’m happy with small ones thanks.
In the beginning I had a minuscule 142 grams of breast tissue removed. There wasn’t much put back in. The one and only time he tried to expand me he put 80mls in, but had to take 20ml out because it was just too painful.
He says he may also do some sculpting around my chest to remove some body fat that wasn’t there when all of this cancer lark began.
I wont touch your stomach though!
“Drats!” I sighed, and again we laughed.
I will see him for the big op in a few weeks. Excited … yes, but acutely aware that this might not be the moment of completeness that I hope it will be. There is a lot riding on this process. For it is as if this reconstruction operation can wipe away the struggles and somehow make me whole again. Which is no easy feat after three years feeling broken.
January the 18th was an awesome day for so many reasons. Twelve months on (and ten months of breast cancer treatment between), I went back and completed my second sprint distance triathlon. The first was done a week after diagnosis and marked the beginnings of me entering the fray of the disease blog genre when I published this post.
Three hundred and sixty five days ago I was filled with the terror of cancer and what was to lay ahead for me. When I made my way into the river for the triathlon start, all of the cancer related anxiety disappeared. I checked out of Cancerland and tuned into the sights and sounds around me in the immediate moment. It was sunset, there were hundreds of heads and arms thrashing about ahead of me so I waited at the back of the swim pack to compose myself. There were large rivergums on the banks and the sun dappled through their branches, there were sulphur crested cockatoos and galahs screeching at each from the treetops. Through my goggles I could just make out the Port of Echuca Wharf in the distance.
I recall the exhilaration of commencing movement through the tea coloured water, of seeing air bubbles emerge from my mouth, stick to my face and be pushed away with the momentum of swimming. Of seeing arms and legs thrashing and churning through the water. The thrill of turning the large meander bend in the river and swimming within metres of paddles steamers. Of being pushed along by the current of the ancient river towards something great. The sensation of fine river sediments squishing between toes as I stood to make my way up the hill to the bike transition. I was alive and the Dread Dragon from the previous week had finally taken a nap and didn’t return for a couple of days. My family and friends were there to encourage and support me. I wondered if I would ever do anything like it ever again. I would have to wait a long time to see.
Two days later, the Dread Dragon returned and breathed fireballs at everything that mattered to me in my life. Struggling to sleep and eat from the fear of the unknown, the long road ahead of cancer treatment ate away at me. Mr Cool took me off to my local hospital, anorexic from my short dalliance with the anti-depressant medication my doctor had tried to help me with a week earlier, nauseated and with heart palpitations from the sheer anxiety and terror of being a newbie to the world of cancer. The waiting for results had began.
After finishing ten months of treatment and giving my radiation burns time to heal I decided to return to this event. In November, once treatment was complete, I took off like a rocket and tried to train as I once had, six times a week. But it was too soon and too much for my chemo and surgically depleted hemoglobin. I was falling into bed at 7:30pm and was unable to wake in the mornings. So I dropped the training back to three sessions a week and that seemed to be enough to help lift my treatment fatigue. I almost gave up on the idea of returning to the same triathlon. For weeks it just seemed unachievable and unrealistic.
But in mid December I decided to have another go at reaching the goal and I started training more frequently again. I wasn’t waiting any longer. My goal was just to go back and finish it again, 700 metres swim, 20 km’s on the bike and a 5 km run and feel comfortable in myself through the process.
I’m glad I didn’t give up on this idea. I’m glad I didn’t wait.
This time, there was much less fear about doing the actual triathlon even though I had a lot less fitness. Having completed it before helped, but there was something about what I have been through in 2013 has made me a bit tougher with respect to challenges. A bit more of a go getter. Some people suggested I should wait. Wait till my body had recovered more. But there is no time to waste. Why should I wait to be ready to exercise? To train? What was I supposed to wait for? What was I fearful of? Getting better? Getting past cancer? Getting on with living?
I’ve put off many things in my life thinking there would be a more appropriate time down the track to start working towards something. I’ve made loads of excuses. I sat and waited. The years rolled on by, and I was still waiting. But I’ve learnt this year that the best time to start is NOW. Not when I think I look more respectable in lycra or am fitter, or have faster times or feel more comfortable while running. But to just jump in and have a go. Just drop the fears and the inhibitions that hold us back. I’m not going to be the Mum who sits on the side of the pool anymore and watches my kids. I am what I am. In all of my puffy, wobbly, bald, post treatment glory.
While waiting in a pre race toilet queue, I got talking to a lady who asked me if I had done the race before. My thin short hair still screams cancer to some people and after she glanced up at my scalp she paused uncomfortably. I told her my story and she proceeded to show me her open heart surgery scar from ten months earlier. Surgeons removed what was thought to be cancer on her aortic valve. And there we were waiting in a pre race toilet queue about to do a sprint distance triathlon. Both of us with an appreciation for our lives and making the most of things. Waiting for the loo. But not waiting for the things that were important to us.
Then, while waiting on the grass for the pre race briefing, I spotted a couple walking past the park. They had waited for the right moment to approach me. I bawled like a baby on recognising high school friends Mel from the Blog I GOT THE GOOD CANCER and ‘Bevan Lemon’ that drove a 700km round trip to surprise me. This gesture mean’t so much to me and I will be forever be grateful to them for doing that. Even more incredible was that Mel had just finished 6 months of chemo and here she was, in the northern part of the state on a 39 degree day cheering me on (and she still has better head coverage than me!) and all while waiting to see if her cancer was in remission or not.
When Mr Cool and I went to leave our children with their grandparents to walk to the start of the swim, my oldest son got upset. This was partly because he saw my reaction to Mel and Bevan’s arrival. But it was also about him remembering the details of this previous year vividly.
He remembers the state his Mum was in last time I did a triathlon and it was when his life changed immeasurably. Shortly after that triathlon his Mum went away to hospital many times, she came home with hard breasts with scars and spent long durations in bed and there was a bag of blood attached to her and she kept going back to hospital all the time to see doctors. She couldn’t hug him like she used to because she was in too much pain and she couldn’t lift her arm anymore. Then her hair all fell out and she was too sick to care for him and his brother, and people kept arriving at his home with meals and cards and flowers. He had waited a long time for “his” Mum to be “his” Mum again. And now we were back in the place where in his mind, it all began.
After reassuring him that everything was okay and that I was very happy and excited, he agreed to cheer for us and I gave him our camera and asked him to take some photos. He played with his brother and they watched and waited for their parents to come into view as the race progressed.
With all of the excitement of surprises from sneaky friends and unsettled kids, Mr Cool and I hurriedly made our way to the start and while walking with a friend the tears started flowing at the feeling of being back here. I had waited a long time to get back here, to this moment.
We were late getting to the start line and it was like a comedy of errors with Mr Cool and I trying to get our wetsuits on as the starter called five minutes and a few hundred people gathered in the water below us.
Still conscious of my post chemo Harold Bishop hairdo, (a character from the Australian TV Soap Neighbours) and the complexities of easing the new hot flush me into tight lycra and a wetsuit that fitted me much better pre treatment, I got a quick kiss from Mr Cool and ran down and jumped into the river at the back of the pack and immediately started the swim.
I’m not a fan of menopausal hot flushes underneath a winter wetsuit and swim cap. Half way along I had to stop to tug on the neck of my wetsuit to let some cool water in. Then I resumed swimming. When I reached the river exit I fell over getting out of the water. I was then unable to get the wetsuit down over my much broader chest and my arms were much more tired from the swim this year. I walked through transition and wasted 5 minutes just trying to work out how I would GET THE DAMN WETSUIT OFF! Riding a bike in a wetsuit? Now there would be a challenge. But I took my time and as the transition area emptied itself I was able to pry the wetsuit off my elbows and make my way out onto the bike course.
On the bike the wind picked up and I was at the very back of the bike field pushing on my own through the wind. Despite there being very hot and windy conditions, I rode the 20km’s with a big wide smile. As I pedalled along I reflected on what had occurred in 2013. My body felt more tired with each lap but I felt comfortable, and I was okay with being last. I was just thankful to be there, and so grateful to all of the people that supported us in 2013.
Then out of nowhere a woman rode up along side me. After some chatting about the heat and the wind and some introductions, it turned out it was her very first triathlon. She was intending to enter the event as a team, and wait till later on to enter as an individual. Down the track when she would have developed more fitness and discovered if she in fact liked triathlon or not. But when she went to sign up she discovered her ‘”friend” had already entered her as an individual to complete the whole thing. So on just 18 days of training she turned up and completed the race. What a legend! And that made two of us who were not waiting.
My incredible partner raced the swim and bike legs in the lead pack and then chose to stop and wait forty eight minutes for me at the start of his run leg to run alongside and finish with me. In his mind, I would not come last, as he would cross the line after me.
Yesterday, I surprised even myself. My second sprint distance triathlon achieved, twenty minutes slower than last year and my proudest achievement yet. But most importantly I was again reminded of what an amazing network of friends and family I have around me and in choosing to do this triathlon, I was able to give my sons the image of me running across the finish line, ecstatic and with their Dad in tow. I’m glad they didn’t have to wait a second longer to experience this.
Now if only I didn’t have to wait for some more hair!
I have started to look forward to the morning rounds of doctors visits. There are three worth mentioning.
Scene one goes a little like this…
The plastics team are the early risers. Rhythmic footsteps in the corridor signal for me to arouse. Muffled discussion about my flow volumes and output can be heard if I tilt my head the right way and then, the privacy curtain flys back as though there has been a puff of wind. There they appear, like superheroes that have just landed. It’s almost like an episode of House. Except thankfully there is no Gregory in the team. They whip in, fresh from showers, clothes pressed. Smelling like they have been freed from this place. The reality is they are chained to it. With their 6am arrivals and 9pm departures. So I asked them how they do it? What drives a person to work such hours, day after day?
I am getting more efficient at disrobing for the examination of body parts. Those parts are mine. I am detached from the process and the parts themselves.
Clipboards ready. Pens clicked. I am poked and observed. I am discussed. The suction drains that go into my chest and armpit are checked. The bags of blood and fluid are measured. Yesterday, one line to a chest drain was closed. A simple oversight by a wonderful nurse. I felt as though I was going to explode.
The head of this team, my plastic surgeon will visit later. There is something they want him to check. On the day of surgery he wore a tie that was very similar to the texture and colour of his head and facial hair. It was a little unsettling. I was transfixed by it while he marked me up with a purple texta.
Normally a tissue expander is gradually pumped up over time to increase the size and volume of the breast, I asked the plastic surgeon if I would need regular visits to the city to do this. He said that they won’t be expanding me because it is big enough. So essentially a flat expander will be enough for me. I just feel a little sorry for the little expander that doesn’t get to live out its purpose.
In the months to come, this unfulfilled expander will be replaced with a small implant when the surgery for my other breast is completed. It is best to have them done together. Symmetry is everything.
This visit from the plastics team lasts just one minute. Pens down, light off, curtain pulled. They are gone. And I am left to return to slumber.
Her heels race up the corridor. There is always a sense of urgency in the way she moves. Time is critical. The sound is different because she always wears stilettos of some description. In the visit to the ward, she is always on her own. No team required here. It is summertime so I have seen a vast array of beautiful summer designer dresses. A Carrie Bradshaw of sorts. Her perfume is captivating and it lingers in the ward long after she has gone. I have now asked her about it twice and have had a breast care nurse ask her in a meeting. It is now Chanel ‘something?’. With all the medication I can’t for the life of me remember what it is.
Her visit is always short. She assesses her handywork. She is thorough. She calls me darl and she will see me in 7 days time with the full pathology results from my mastectomy, the extent of nodal involvement, whether my nipple must come off after cells were question marked in surgery (after the inside of it was scraped and frozen and tested), and what the chemotherapy regime will be. I am dreaming about my breast surgeon. It feels like I have known her before.
On the mornings post surgery, my breast surgeon’s sidekick swings by. He is warm and his voice is slow and calm. He sits on the arm of the chair and talks to me at eye level. On the third meeting, he tells me he is a runner. Connections between runners are made instantly. He has no more time than any of the others, yet his approach makes it feel like a longer visit. He laments not being able to run four nights a week with the hours of his job. He reviews my charts, overall progress, medications and makes notes about an impending discharge date. I disrobe and I am poked again. We must free up the bed but only when I am ready. He smiles and makes eye contact as he leaves.
Outside I can hear the grand lady Melbourne waking. The sun is rising and there are rays of sunlight reflecting off skyscraper windows. I can see trams and joggers. It will be a long time till I am jogging again. One day at a time.