Tomorrow is my double exchange surgery. One thousand, one hundred and thirty three days after my first mastectomy. Finally.
Tomorrow has the weight of three years of expectation behind it.
I’m at sixes and sevens. Not sure how to feel, not sure what to expect.
Im scared. I’m scarred. My mind is scattered.
How will I look when I wake? Will I have surgical drains? How long till I can drive a car? I forgot all the details.
How long till I can hug my kids and my husband properly. Like one of those hugs where you squeeze so tight and don’t let go. Where it feels like two people might just possibly melt into one.
Will I be able to move forward from this breast cancer world I’ve been immersed in for three years and two months?
What would happen if I give myself permission to let go of this whole journey and try and forget about all this?
This will be surgery number five. It won’t be the last if I want to correct my disfigured breasts and nipples. What will come of the sixth? Will there be a seventh?
I’m a physical and mental mess today. See you on the other side of it.
Today saw two hours of travel (on this bright sunny and cyclone free day) to see my surgeon for the results of an ultrasound for the lumps in my side and armpit. It has been a long time between visits.
These “lumps” have grown since October when they were thoroughly assessed last year at my local hospital as scar tissue.
It’s hard not to be paranoid. So in light of the increasing size of these palpable lumps, and considering my oncologist is “da bomb” they were reviewed. Except this time this was done in the big smoke.
On arrival at my big smoke hospital, I waited another one and a half hours beyond my appointment time to be seen, which is the usual experience. Finally, I was called.
I entered the consult room and was greeted by a friendly registrar.
Today, my original surgeon who I have watched for much of the clinic time taking new patients into their consults happens to be too busy to see me. Sadly, the tide of newly diagnosed breast cancer patients keeps rising.
This not seeing my surgeon is supposedly a good thing. It must mean I don’t have cancer!
I am shown to a chair and the registrar begins.
“You were operated on Jan 2013 and also had a prophylactic mastectomy in August. Is that correct?”
It’s as though two years of torment can be neatly wrapped up into one teeny tiny sentence.
The registrar asks me how I am.
How am I? Does she really want to know?
I explain about the pelvis issues with Tamoxifen and my impending surgery. She asks me who is seeing me.
“Dr Claudia Karvin”.
She continues… “Well the good news is your ultrasound is unremarkable. It’s scar tissue!”
Bless me, I’m cancer free!
I strip off and my breasts are inspected. My armpits and the skin and nipples are checked since I don’t actually have breasts anymore. She runs her hands gently over the skin looking for lumps and irregularities. She palpates the lumps in my armpit.
“Oh good you’ve had reconstruction”… says the registrar.
“Yes I’ve got expanders” (I’m so lucky!)
I am supremely disappointed and I cannot hide it. The registrar can sense my displeasure for being stood up.
“I am a surgeon too!” she tries to reassure me.
“It’s not that, it’s about expectations and patient relationships. My surgeon and I… it’s been a long journey”, my voice wavered.
So I asked her … “Does it happen often that patients travel for many hours and then wait a long time and don’t get to see who they intended?”
“Yes, yes, all the time. It’s a good thing it really is!” she tries to provide further reassurance.
But I feel like I came all the way to the big smoke for lunch with an ex, and I got stood up, while they dined with someone else at the table opposite me.
I left the hospital feeling totally dejected.
I should be skipping down the street with this benign scar tissue news. But I’m not.
The total mind fuck of it all.
I contemplate that she didn’t want to see me. Or it’s not necessary to see me. She is simply too busy with other patients. My surgeon.
Deeply perplexed at what had transpired, I nearly walk in front of a moving car.
I don’t think anyone can understand what that feels like.
Letting go of one’s dependence on a medical expert who you viewed with such intensity, while they saved your life for well beyond a year is difficult. Releasing my vice like grip on my heroine.
Couldn’t she just look in for thirty seconds just to make sure I was okay?
Okay, so in the meantime, I will only be seen if I have the misfortune of presenting with a another tumour. If not, I will visit again in twelve months for review. I should have known it would end like this. It’s the way it plays out and I should be thankful.
I asked the registrar about the wait list for my exchange surgery.
The registrar said the list is now at two years from the previous estimate of eighteen months.
I’ve been looking forward to completing this journey in May. Now it could be November or beyond. By then, it will have been nearly three years with these painful, hard and ghastly things.
I sit and I watch women roll through this shittytittie journey. They have surgery, recon, chemo, rads. Whatever path it takes. It’s different for everyone. At the completion of their treatment they have reconstructive surgery if that’s the path they have taken. Some only have to wait months. Some years.
It’s hard not to get pissed about my own predicament.
Incredible friends have said go private! They would generously chip in. “Just go and have the pelvis and breasts completed so that you can get on with your life!”… they said.
But the idea of presenting the money to pay my way to a faster solution disgusts me. Healthcare (or the right to a good education) shouldn’t be about your financial position in life. It’s a philosophy I’ve always held dear.
So wait I will.
Today, I got put in a time out room.
Just. Like. That!
Don’t worry, I wasn’t channeling my inner toddler and there was no kicking or screaming or dropping to the floor. I was managed very discreetly with grace and finesse. One must not upset the other patients you know.
I had travelled to a gynecology appointment in a major hospital in the big smoke. I’ve been precariously teetering on the edge of despair, as I’ve not been living but merely existing through 12 months of pelvic pain of increasing severity.
The last seven months has seen…
- Five exciting transvaginal ultrasounds (also known as dildo cam) to monitor my ovaries.
- An elevated result for an ovarian cancer marker (which can mean quite a few things that have nothing to do with ovarian cancer).
- Two physical pelvic exams with an onco/gynecologist who has extraordinarily gentle hands and excellent bedside manner. But this still involves WHOLE HANDS INSERTED INTO SACRED BODILY PLACES!
- Months and months of abdominal pain, that at times feels like the onset of labour and at other times feels like my ovaries will explode from my abdomen in poltergeist fashion.
- No ovulation. Zilch, nada, nothing! Despite having enough oestrogen in my pre menopausal state to initiate a great coral spawning on the Great Barrier Reef.
- Fortnightly episodes of pain that is associated with internal bleeding which the docs think is either from my hemorrhaging ovaries or endometriosis being stimulated by Tamoxifen Tamoxibitch. This brings on pain when going to the toilet, pain when sitting down, pain when coughing, or standing, or hugging my children, or trying to make their lunch, or talking with the school mums.
It is wearing. me. down.
And I’m here sitting in a hospital waiting room, AGAIN. Reflecting on my life and how it came to be an endless train ride, stopping at all stations of overly cautious and expensive medical management.
How could I get cancer and be transformed so stunningly from pre cancer Lisey to Stanford Blatch from Sex In The City, a five-foot-four, bald, gay, guy who rocks a fedora or a diamante blazer? How did this happen?
I’m fat, I’m bald, and living in pain. Cosmopolitan cocktail anyone?
Why does it feel like my pelvis is trying to kill me, if not kill me then perpetually make me miserable and unable to function?
Did breast cancer treatment do this to me? Or would some of this have happened to me anyway?
Anyhoo, back to the waiting room today.
Where all of my hopes were pinned on finally meeting with the experienced specialist that I was referred to. Today was the day I would get some answers and a plan. There would be someone to review all of my tests, listen to me and reassure me that I would be okay and end my year long trail of despair.
So I, (aka Stanford) sat in a crowded waiting room which was comprised of 95% antenatal patients and 5% gynecological patients. For two hours I watched an abundant stream of pregnant women waddle into their appointments. I sat reminiscing about my own pregnancies and fertility, floated deep in thought about the miracle of life and the totally amazeballs job women’s bodies do at growing and delivering babies.
Finally, after two hours of waiting amongst the bellies, I was called. I gathered my belongings and made my way across the waiting room.
The doctor I had hoped to see was not standing in front of me. I would be seeing a totally different doctor who wasn’t really qualified to help me. He said my pain didn’t sound like any pelvic disease but surgery was necessary to try to diagnose. After fifteen minutes of discussing breast cancer, and fertility, and ovaries, and endometriosis, and pelvic adhesions, the replacement doctor offered to operate on me but recommended I return home and start Zolodex (and enter menopause). It might fix all my issues before the wait list for surgery shrinks.
I left the consult feeling like I had been dismissed. I didn’t feel I’d been understood. Was that the best advice? I felt lost and confused.
I’m not sure I even know what I want anymore? Can I even advocate for myself? I’m not sure what to do or how to proceed. My quality of life is deteriorating. It should not be like this post treatment. It just shouldn’t. By now I’m supposed to have hair, and be moving on with my life and I’m grappling with decisions about menopause and hysterectomies. About dumping Tamoxifen in favour of other post menopausal cancer therapies and there are severe quality of life consequences in all of these BIG decisions.
Back in 2013 the craziness of cancer treatment spanned four seasons. Summer hit and I was finally finished with active treatment. Just three months post chemo and (coincidentally?!?!) around the same time I started to take Tamoxibitch err, Tamoxifen, my ovaries decided they would start working again as some mutant one eyed deep sea monster, lurking in the shadows of my recovery. They would rear their heads at different moments and then dive deep again, but always with a menacing, shadowy presence.
In these last two years, everything that makes me a woman has been attacked. My body, my fertility, my sexuality, my looks. Bang! Bang! Bang!
I left the consult and returned to the waiting room. There I sat for another hour waiting for a pre admissions nurse to meet with me and take my forms.
2. “Have you ever had surgery?” Tick the box.
Yes, yes, yes.
3. “Please list the surgeries you have had.”
Blah, blah, blah.
5. “Any allergies to medications?”
Well there was this one time a nurses head turned into a granite boulder and rolled down the hospital hallway crushing theatre staff…
9. “Do you have any implants?”
Yeah, kind of. Are they important? Or is it only dentures, pacemakers and cochlear implants that matter?
11.”Are you on any medication?”
Let’s not speak Tamoxibitch’s name.
13. “Do you have depression?”
No and it’s a miracle I don’t. Really, it is a fricken miracle!
*this is not actually how I answered the pre admissions form. Would have been fun though.
It was back in this waiting room, with a new batch of pregnant ladies around me and whilst I completed my questionnaire that it happened.
Trickling down my cheeks.
I scoured the immediate surrounds for a box of tissues, there were none. I had to use my hands to wipe the tears away. I’ll also admit to using my sleeves to wipe away some snot. Not a box of tissues in sight!
I cried for what had been taken away from me in the last two years.
I cried because I’m sick of waiting in hospitals for doctors.
I’m tired of retelling the story with each new doctor I meet.
I’m tired of hospital cafeteria coffee.
Tired of pain and illness.
It’s no secret that my husband and I were trying for number three when I was diagnosed with breast cancer. And I remember that awful moment at diagnosis when I thought I was actually pregnant. How in the hell could I deal with being pregnant and having breast cancer at the same time? I shudder to think about the “what ifs” of that scenario. I never felt such a surge of relief as the one I experienced when my period finally came in the days after diagnosis.
When this whole fiasco began, the sole focus was on getting through it. It was clear to me that this would be the end of adding to our family. Having a hormone positive cancer would mean another pregnancy would expose me to elevated levels of oestrogen and put me at greater risk of disease progression. Even though the science doesn’t actually know if this is fact. It is a very complex thing.
With a grade three cancer, we just dived right into treatment. The decision was made not to have Zolodex to protect my ovaries. I had two kids, I was in my late thirties. There wouldn’t be a need to undergo IVF before chemo. I think I was sure.
But that doesn’t stop me grieving. It doesn’t stop me getting emotional in aisle five at the supermarket when I walk past the teeny tiny Bonds singlets or the baby wash.
And although I am incredibly happy when I hear of friends who are having babies there is grief still. And this grief is not just about breast cancer.
I think it comes from another place and time, I guess.
From the time I survived an ectopic pregnancy between the births of the two miraculous children I have. This ectopic was diagnosed at 12 weeks after a perfect storm of medical system diagnostic failures. Several rounds of poor imaging which missed it, combined with some sleepy doctors who didn’t arrange the right tests for me that would have picked it up weeks earlier.
As it turned out, I had 1.5 litres of blood in my abdominal cavity. Slowly rupturing over weeks and weeks and weeks.
“Ectopics are notoriously difficult to find,” they said. This, despite having several late stage ultrasounds that (apparently) showed everything (uterus, tubes and ovaries) was normal.
My doctor and I wrote a letter of complaint for what had transpired.
I was told the doctor who wrote my ultrasound imaging reports at the centre was moved on. Moved on to where, I wondered?
After the emergency surgery to remove my fallopian tube and a twelve-week foetal mass, I was sent to recover in the maternity ward. I remember coming to and hearing the sound of a crying newborn somewhere across the hall. I managed to pull the crying into my dream state, and there, I gave birth to a healthy baby girl.
When I finally did wake up, it was to the sound of a breakfast trolley being wheeled up the hall and a tray being delivered. I was empty. There was no baby for me. Just a sore abdomen with some new scars and one less body part. I was terrified by the threat to my future fertility.
For weeks after that, friends saw my swollen abdomen at the shops and congratulated me on my pregnancy.
Women have these “events” all the time in their reproductive years. These private losses with their private grief (as do their partners) and they soldier on silently. The last 12 months were supposed to be about regaining my health (and hair) and moving on, soldiering on in silence as all those brave women do.
And I wouldn’t even be writing about this now, if I hadn’t fallen into Cancerland and blogland a few years back.
But I guess these “events” fill us up over time. And it all overflows from me now in the waiting room of this crowded antenatal clinic.
Thankfully, a you beaut admissions nurse came and invited me into her room, and instead of just taking my surgical forms, she gave me a chance to express how I felt. She listened to my grief and my confusion about how to proceed. She arranged for a more senior doctor to be paged for me to see. I was then taken to wait for her in a time out room private, quieter room as to not scare the other patients. I was given a cup of tea and my own box of tissues. My very own box!
The most amazing surgeon and doctor I have yet to meet on this journey entered the time out room. This doctor was the splitting image of Claudia Karvin, the Australian actor. I’m not sure, when Claudia gave up acting to become such an outstanding gynecologist. But here she is sitting in front of me!
Dr Claudia read my file notes and reviewed all of my tests. She looked me in the eyes. She listened. She empathised. In contrast to the previous advice I had received, she advised me that if she were my mum or sister she would get me to have laparoscopic surgery first before making any decisions about menopause. Switching my ovaries off so soon would hide the conditions I have so that I might never be diagnosed and treated properly.
But I’m stuck asking the question is this a result of chemo and Tamoxifen, or would all of these issues be occurring anyway from my previous ectopic? It’s really hard to know. Perhaps this might have happened to me anyway even without cancer treatment?
It may be that Tamoxifen is not for me and Zolodex may be necessary after all in the months to come. Zolodex would switch my ovaries off to prepare me for a hysterectomy down the track. Hormone positive breast cancer patients cannot have (HRT) hormone replacement therapy. So menopause would be brutal. And it’s really about weighing up quality of life issues and carefully balancing the opinions of my oncologist to optimise my chance of keeping cancer away.
So I am scheduled for surgery within the next eleven weeks. Dr Claudia will use keyhole surgery and a camera to look for signs of Endometriosis, Adenomyosis, or pelvic adhesions, and the general state of my mutant Tamoxifen effected ovaries. She will fix what can be fixed.
This will then allow my trusted oncologist to make a more informed decision about hormone approaches to take with me going forward.
Despite sitting at this hospital for five hours, it ended well and my sanity has been restored.
Dr Claudia was so engaging and so supremely knowledgeable that I didn’t even feel the need to lower my gaze and look at her footwear.
It’s been a while since I experienced a crush like this.
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!
In late September, a dapper knight in shining armour (aka radiotherapy oncologist), galloped through the forest and across the fields and offered this damsel in psychological distress an immediate start to radiotherapy at a hospital in the big smoke. This act of kindness and generosity helped put my mental health back on track. After nearly ten months of active treatment for breast cancer the desire to get to the finish line had intensified and anxiety levels were climbing. News of delays to radiotherapy treatment were painful for all concerned; the patient, friends, family, medical professionals.
So, eleven weeks out from chemo and six weeks from a prophylactic surgery, I finally started radio and I am very pleased to write that my active phase of my breast cancer treatment is finally complete. I recently read an article in the New York Times which depicts what it is like to have breast cancer in a developing nation such as in Uganda. Of particular interest is the graphic a third of the way into the article which reveals the rates of breast cancer and death rates to the disease worldwide. There is also a video that documents Jesse’s story. I think anyone undergoing treatment should click the link above and read this article. This has put the high quality of the treatment I had been fortunate to receive since January into perspective.
Radiotherapy very gratefully commenced and every weekday for five weeks I arrived and was greeted by friendly staff. The small waiting room only ever had a few patients waiting, the wait was never longer than a few minutes. All facets of this radiotherapy process ran as a well oiled machine. I would arrive and change into a dressing gown kept in my own locker and make my way to the treatment room with some trepidation, where I would commence each speed dating session with Varian. I was thankful for this treatment opportunity, the genius physicists and engineers that created such a machine and the doctor geniuses that write and execute treatment plans for patients.
Varian was a tall, grey, imposing linear accelerator. The first time I laid eyes on him I was a little overwhelmed. The prospect of dancing with a linear accelerator is like having twenty five dates with someone you have no interest in dating. The daunting long road of treatment weeks ahead is overwhelming but in retrospect, it does move quickly.
For twenty five treatments I laid bare chested on my back with my arms gripped to handles above my head. The friendly and efficient human technicians would move my torso and hips into position to align my chest tattoos with the laser. Precision is everything in these circles. They would then leave the room so it was just Varian and I alone. Varian would spring to life and sometimes do a sweep over my body, with his arms outstretched he would complete a cone scan and send a fast and accurate visualisation of my bony anatomical structures in 3D to the techs computer screens outside. Then the techs would re enter the room and carefully place a bolus sheet over my chest. It was laid over my tissue expander to absorb the low dose of radiation and lift the high dose to the skin. Tissue expanders are complicating little things.
The humans would again leave the room and then it was just me and Varian, alone in each other’s company. Date, after date, after date. The one sided conversation between us was always the same. Eeeeerrrrrrrrrrrrrrrrr, click, click, click, then the industrial sound of thousands of volts of radiation being projected at my chest. Not at a specific tumour as that was removed long ago, but at an area where cancer cells could localise, such as the skin, the incision site and the chest wall near where my tumour was, as well as the lymph nodes up higher near my clavicle, these beams of radiation being of a preventative nature.
Varian was always in command while I tried to breathe normally and laid perfectly still for 10 minutes. Sometimes my mind ran free and I imagined my body floating in the ocean with a dolphin swimming and circling around me because Varian’s exterior was grey and shiny this conjured up the image of a sea creature. Then at other times, it felt like I was laying on production line in an automative factory. There was something about the way his long robotic scanning parts moved into position, I felt like a part being welded. If it was early in the morning, Varian had been sleeping and the technicians would wake him up by turning him on and he would lift his gigantic head from the floor. This was the only human quality he displayed.
Varian’s gigantic cyclops head would always rotate clockwise around me, stopping at nine different angles and injecting fifteen different doses of radiation into my chest and clavicle area. But his monotonous dialogue was always the same. While I laid still and as quiet as a mouse, Varian strutted and spun and spoke…
“Errrrrrrrrrrrrrrrr, pause click click, Neeeeeeeeeeeeeeeeeeeeeeeeeeee, pause,
Errrrrrrrrrrrrrrr, click, click, pause, Neeeeeeeeeeeeeeeeeeeeeeeeeeeee, pause,
Sometimes each of the “Neeeeeeeeeeeeeeeeeeeeeeeee” radiation firing sounds would go for five seconds and sometimes ten. Not that I was counting or anything. The monotony of the sounds made it difficult to count them, so by the end of the fourth week I gave up in my quest to count, and instead focused on recognising the nine different angles he stared at me from.
Varian’s enormous cyclops eye would blink at me with each beam projection. His columnar lead lashes moved with each pre programmed position to create a shape that the radiation is projected through. Interestingly, the final shape Varian would make, was a fairly accurate silhouette of the right side of my left tissue expander. Once I saw that shape, I knew that Varian had had his way with me. Then I would get up, get dressed and leave feeling ever so slightly violated.
At the very end of my five weeks of treatment, my skin began to redden and break down. The line of skin in the fold of my armpit began to split and peel, my nipple lost its top players of skin, but the rest of my breast (or tissue expander, I’m not sure how to to refer to them anymore) remained intact.
Before this breakdown of skin occurred, I had been religiously moisturising multiple times a day with a product called Moo Goo Light Udder Cream (see www.moogoo.com.au) A generous friend who also just finished her treatment for breast cancer mailed me some and this had been great for keeping the skin moisturised and taking the heat away. It definitely helped my skin. Different products work for different people. Some friends swear by using a leaf straight from an aloe Vera plant, though some practitioners caution against this because of the risk of infection. I also used cold compresses of flannels from the freezer, and have been bathing in saline solution (boiling water and adding 1 teaspoon to 1 litre of cooled water).
At the moment, the small areas of broken skin or open burns I have developed will require regular dressings each day. The radiation dose will continue to climb for another ten days beyond treatment and then my body should start to heal quite quickly thereafter. It is itchy and painful at times. When the burns begin to speak to me, it’s time for more Solugel. Showering also provides some relief and assists in the removal of any dressings that become stuck. The aim is to preserve the skin. I can’t help but think what it would all feel like if I hadn’t had the majority of my nerves severed from the mastectomy and axilla lymph clearance. There is a plus after all to mastectomy induced nerve damage!
Fortunately, I didn’t experience any fatigue that patients sometimes report with radiotherapy. I did however develop a sore throat in the early weeks which made swallowing some foods difficult. But despite that, there were no other effects.
My children really enjoyed their time with me in the big smoke. Despite having radiotherapy everyday for five weeks I was able to turn it into something positive for them. Life continued as normal and we were able to have some fun family experiences visiting landmarks and tourist attractions in the city. Last week, they created some pictures on our iPad to document some of the things they’ve been doing with me.
Somehow and rather hilariously, they imported a picture of a linear accelerator from my iPhoto library into a Play School Art Application and I found these pictures on the iPad. I had to laugh that Big Ted was chosen to have radiotherapy treatment.
This morning, my eldest said “Mum I wish you never got breast cancer, but I’m so excited that you’ve finished your treatment!”
Today I had the pleasure of a 2 hour radiotherapy planning session which included discussion and a permanent markup of my chest for when radiotherapy commences. Read this peeps, I will endure 5 weeks of daily visits to the hospital. That is 25 lovely barbecues to attend where the star protein is me! No potato salad! No beer and no tomato sauce! Big sigh.
Next I move onto sharing the excellent news that the vacant lot opposite my hospital (where parking for 300 odd cars including mine was always a guarantee), now has a massive blue fence around it with locked gates! Seems it’s time to build some long overdue, new, multi million dollar hospital or something. This means I will need to park half a kilometre away every day and will add another 30 minutes onto each treatment time. Obviously it’s not all about me though, the Sunom Bonum rule and all that… greater good for the community, new hospital yes! I’m just whinging about the timing. The chance of me getting a spot in the existing hospital carpark that has space for 25 cars is a bit limited. But you never know. Crazier things have happened. Wish I lived close enough to walk!
My decision to have radiotherapy has not been an easy one. I am in a group where the research is a little light on to clarify if the survival gains of radiotherapy outweigh the risks of a younger person having it. Remember the Supremo Trial I mentioned months back which was going to measure the effectiveness of the selective use of post operative radiotherapy after mastectomy for women with between 1-3 nodes positive? And I laughed at it in this blog because it sounded like it was named after a pizza? Well I chose not to be involved with that International study as I didn’t want to be randomised into getting radiotherapy or being in the control group with no radiotherapy. I wanted the decision to be solely mine. In years to come I want to own my treatment decisions and say at least I chose to take every treatment available to keep the breast cancer at bay.
Of course, I actually have a higher chance of a metastasis somewhere else in my body than a local reoccurrence or a new breast cancer starting now that I have had both breasts removed. But radiotherapy aims to (in layman’s terms) “sterilise” a large section of the left side of my chest and up to the lymph nodes near my clavicle. These daily doses of Xrays to my chest will take just around 4 minutes to be delivered and will essentially cook me from the inside out. How lovely! But given I was under 40 with young children, with a grade 3 aggressive cancer in 1 node, there is the potential that cancer moved past that one node and up to those nodes higher than my chest. Chemotherapy has supposedly mopped up the rogue cancer cells in the vascular system, radiotherapy is supposed to take care of the chest wall, the skin and those higher lymph nodes. So this was a no brainer for me after seeking several opinions.
My radiotherapist ever so eloquently explained the risks to me and I am handed a consent form which outlines all of the risks and side effects. Side effects may include feeling tired which is most noticeable in the second half of the treatment course and the tiredness can take months to resolve. I may become red, I may peel, I may weep, I may require special dressings for a short time. Shit I hope my tissue expander doesn’t fall out! I may develop a tan for some months. I may experience some chest wall discomfort. I may develop a sore throat on swallowing. In time I might develop tiny dilated blood vessels in my skin which is permanent. Truth is I’ve got a tonne of those buggers already!
More worrying side effects include the very rare possibility of developing inflammation of the lung that lies in the path of the radiotherapy under the ribs. The yellow consent form cheerfully points out that only 1 in 100 women having radiotherapy for breast cancer will develop shortness of breath and/or cough as a result of such inflammation, and some may be left with scarring of the lung under their ribs. Fingers crossed that isn’t me! I may develop weakened ribs which may lead to rib fracture. Please no! And… there is a very rare risk of permanent damage to the nerves that go into the arm, pain and or weakness from radiotherapy. I may also be at a even greater risk of lymphodema in my arm that has lost all the lymph nodes. Oh for heavens sake! Enough already!
But wait, there is more…
There may be detrimental effects on my heart because the left chest wall is being treated. There can be temporary inflammation of he sac that covers the heart and possibly a very small risk of a heart attack years later. The radiotherapist explains that the heart sits a little more forward in the chest cavity of younger people and this makes it difficult for the radiotherapy beams to miss it in breast cancers of the left breast. Shielding the heart is very difficult but todays’ planning and scanning session will show the radiotherapist how much of my heart will be exposed. There is also the delightful small risk of developing a second cancer at some time in the future as a result of receiving radiotherapy. Yay! Of course, none of these things may happen. Yeah right!
After all of this information, which I have had explained to me in several meetings and in the consent form, all I can hear in my brain is Freddie Mercury singing…
All we hear is Radio ga ga
Radio blah blah
Radio what’s new?
Radio, someone still loves you!
And I guess that someone is me because I signed the consent form and it’s all systems go! My reasoning is that cancer kind of trumps all of these potential risks and many of them are very, very, rare. Who am I kidding, it’s not like I’m not already high risk for heart disease anyway given my family history and penchant for Lindt chocolate. Though the radiotherapist points out that if I can stay active and stay in the healthy BMI range and NEVER EVER smoke I improve my chances. The radiotherapist also plays down the ramifications of heart disease as though any heart surgery is just a simple walk in the park and stents can do marvellous things these days. Obviously the radiotherapist hates cancer as well and rightly so. They must see some awful things in this line of work.
I say goodbye to my radiotherapist and return to the waiting room.
After several minutes of staring over the unfinished 1970’s jigsaw puzzle on a table in the middle of the room and avoiding the day time television or the instant coffee on offer or the pity head tilts that are firing at me from the room full of people over 70, I conclude that radiotherapy is largely experienced by people older than me. If it wasn’t, there would be free wi-fi on offer or there might be iPad’s for use. I feel like I have stepped into the recreational room of a retirement home.
After a short wait Mr Cool and I are met by a young technician who appears a touch nervous and a bit too enthusiastic at our first meeting. After polite introductions we walk through 2 doors and down a long corridor to a CT Machine. While walking I am briefed on the procedure in a way the US President is always briefed when being brought to the drama of saving the world in some Hollywood film. I walk this hall with steely eyes and just nod when the technician describes the scan and what to expect. I don’t even bother making eye contact now. Eight months into treatment and I am now either disconnected, professional at matters related to cancer, or simply broken. Perhaps a little of all three.
We enter the room and meet another young technician. They work in pairs to measure and cross check each other. I am given a blue gown to dress in which seems pointless as it is removed as soon as I lay on the scan bed and I am left bare-chested from then on. There is no time for modesty here.
My arms are stretched over my head and I hold two bars which is an excellent achievement after 2 breasts have been taken and replaced with rock hard tissue expanders as well as the removal of so many lymph nodes. The most recent surgical side from just 3 weeks prior is slow and tender as it is lifted towards the handles. I will need to stay still in this position for some time.
I am surprised in this day and age there is not a machine that can just scan me and calculate all of the relevant positions. I’ve seen this machine a dozen times in movies. But today, it all comes down to the judgements of two technicians with their eyes and marker pens and cold metallic rulers.
My head is fixed into position to the table with a wedge placed under my neck. I can only see their faces when they enter my very narrow field of view. With such limited field of vision I start relying on the other senses of smelling and hearing. I spend over an hour on the scan bed wondering and hypothesising whose breath might be the one that was so offending to me. Note to self… Anytime working closely with other humans, or professions where standing over or on top of other humans, check the status of breath, PLEASE!
This thought process is only broken by looking up at the rectangular tile inserts of the floating ceiling, I briefly imagine myself in an office. I am annoyed that some of the inserted rectangles sit crooked. These people work all day under a crooked ceiling. I hope they can mark me up accurately.
Freddie just keeps singing in my head as the minutes pass…
All we hear is Radio ka ka
Radio goo goo
Radio ga ga
One of the reasons the appointment takes so long was I had to have a special boob cast made which will sit on my chest every day. Because I have a tissue expander, it makes radiotherapy a touch more complicated. The bulk of women have reconstructive surgery at least six months to a year after radiotherapy with more complicated surgeries that take tissue from other parts of their body to recreate the breast. Radiotherapy can cause a lot of complications to implants, namely capsular contraction where scar tissue forms and presses on the implant which reduces the cosmetic outcome and can cause pain. Originally I was not having radiotherapy and an immediate reconstruction with an expander was decided on. We are making the best of the situation.
The breast casts role is to absorb the low dosage of the radiation and lift the high dose into the layer of the skin. Without it the expander will absorb the radiation dose so it acts as a reflector of sorts to ensure that any cancer cells left in the skin are sterilised. I’m so taken with this boob cast that I asked if I could keep it. The technician said “I don’t see why not, it’s not like it will fit anyone else.” My mind begins to wander towards all of the things I could use this breast cast for. I also asked the plastic surgeon if anyone had ever asked to keep their expanders. He laughed and said “There is a first for everything!” But I might have trouble getting theatre staff to release them next year in my exchange surgery when I move to silicone implants as surgical staff are a bit funny about releasing something that has had blood on it.
I’m intrigued by the way all of the technicians frequently mention the coldness of the alcohol swabs that will wipe away the marker pen from mistakes they make in marking my torso, or the warmth and wetness of the boob cast, but fail to tell me anything about how cold the metal ruler they keep pressing against my skin is. I swear I saw a tech get it out of the freezer at the beginning.
The whirring sound of the scanning machine begins as it rotates and spins. It’s a bit like standing closely to the station platform and watching the tube trains whiz on by my face. My mind then wanders again. It would be awesome if these scan machines played the music from the film “Close Encounters of the Third Kind”. You know the five tones the alien mothership and NASA use to communicate? Now that would be super!
Mid scan, a technician comes over and moves one of my marks. The radiotherapist is reviewing the scans from the radiation free zone of the adjacent room and is not happy with the alignments. I’m sure they turned off the radiation then, but I just wanted to scream at the top of my lungs… “Run, get away while you can!” This stupidity is motivated by those yellow radiation warning signs that are everywhere. Perhaps this would be touch inappropriate? I have learnt that my humour is rarely appreciated in these situations.
Finally, I receive 6 black tattoo dots across my chest. This thrills me no end given these tattoo dots happen to look like melanomas so I will have a permanent reminder of my breast cancer and treatment and skin cancer every time I undress. These will serve as a reference point for the laser beams every time I arrive for radiotherapy. Precision is everything or the treatment will be ineffective. I am cautioned about not losing any weight while radiotherapy takes place as this will move the dots and this planning session will have to take place all over again.
It turns out I have been white knuckling these handles for an hour and a half. I am asked several times if I am comfortable, but to be honest removing the hands would cause more pain for me than leaving them there. It is a long process being measured, marked, tattooed and scanned and I mustn’t forget the time that has gone into my snazzy new breast cast either.
When they finally lift me up, it is painful. My arms and chest feel like they are set in concrete and I have trouble bringing my arms back to my side.
The ongoing nerve pain I am having with my most recent surgical side has made me seek some early intervention treatment with dreamy hands again. Remember my physio? She broke down all of my scar tissue and lymph node remnants and completely fixed my cording issue giving me full range of motion again. Hopefully she can help with healing and moving forward again this time.
So there is just the small matter of this radiotherapy to endure. Unfortunately there is no fixed start time yet, as there are more people awaiting radiotherapy than time slots available. But I am told it should be within 2 weeks and if all goes to plan I should be done with active treatment around late October, 10 months since I started this crazy journey. Oh happy days!
My breast surgeon breezes out of the consult room and calls another patient in. Through all the heads in the waiting room she finds me and waves, and there is even a smile. She is obviously glad to see me again. You can call me delusional but I speak the truth. This is my second visit to her in the last 2 weeks after my second mastectomy and immediate recon with tissue expander. It’s breast inspection day and there will even be a saline fill from my bearded plastic surgeon after our consult.
In the 8 seconds she appears outside the consult door with patient file in hand, I drink in as many details as I can. Her hair is lightly tussled. She is dressed in a black tailored jacket with a very short cream frill layered skirt with black sash trim. There are those impressively elegant legs that are finished off with canary yellow stilettos with silver toe plate detail. Spring is here. Gone are the black tights and designer boots of winter. Simultaneously, the track below begins to play in my head like we are in a movie scene. Press play, go on, do it now. Okay, you can pause that at any time.
After a short wait I am called. As I walk through the door I nervously blurt out how fabulous she looks. I am greeted and inspected with the usual efficiency. The operated breast looks good just 16 days post surgery. She snips a stitch that hasn’t broken down. She has taken the cancer, 22 lymph nodes and 2 breasts. Her job is mostly done with the exception of a visit in 6 months and then annual reviews for the next 5 years. Simple.
Next my bearded plastic surgeon enters the room wearing a hospital fundraising, cancer charity, cycling jersey over his usual business attire. As he steps towards me his mobile phone rings with the opening chords of a “bad to the bone” ringtone. Mr Cool and I break out in laughter. He inspects his handy work looking at both tissue expanders that have been inserted six months apart. They are considerably different in size but he isn’t worried.
The exchange surgery next year may include using 2 different sized silicone implants to get visual symmetry. He is happy that the nipple looks like it will survive, making the same comment as the breast surgeon minutes prior. I hadn’t even given that a thought this time. As it blackened from the trauma of the mastectomy and was at risk of infection I just assumed it would be safe like the last time. Then he asks me if I would like a fill inserted into the new tissue expander which is noticeably smaller than the one done back in February. I nervously giggle and nod for I am about to get ‘a bigger one’.
He leaves the room and returns with a 1 litre bag of saline and an enormous syringe and needle. He asks me to lay down on the hospital bed bare chested. He uses the magnetic port finder to locate the port, marks a spot with purple texta on my chest which is still tender from last fortnight’s mastectomy and recon surgery. He then inserts the enormous needle on saline into my breast, piercing through the skin into the port. I don’t feel a thing and he proceeds to fill the expander. First 20, 40 and then 60mls and I begin to feel tightening and constriction in the pectoral muscle across my chest and just under my armpit. I wonder if I can breathe. So I take some breaths to test the vice grip that is tightening around my rib cage.
He says “Make sure you tell me when you are uncomfortable. I don’t want you to be a hero.” I nod conservatively. The sensation of filling fools me into thinking it is possible my chin might just hit my breast when I nod. Lying on the hospital bed I’m not sure what I can tolerate so I laugh. He keeps filling to 80 mls, and I exhale and say… “Yes, yes I think that is enough for now!”
As the pressure mounts it’s like a tightening in the pectoral muscle accompanied with knife pain extending round under my armpit into my back. Very, very painful. He backs off and takes out 10mls and there is instant relief. The volume of two teaspoons. Together we then decide to take out another 10mls which is more tolerable. When he withdraws the needle it feels like I am a rubber mannequin. The body isn’t mine. The needle catches and as it withdraws the expander holds onto the needle tightly, vibrating and pulling.
He has inserted just 60mls in total, the equivalent of 2 shot glasses or 3 tablespoons, depending on if you are a bartender or a baker. I think of those women who have fill after fill of half a litre in each expander and greater. And those women who go through this process for cosmetic reasons. Cancer brought me to this point so I feel a little differently. I am left with 144mls in my first expander from February and today I lay with 280mls in my right expander. Interestingly, the February breast is much bigger. He assures me the mathematics is not important. The final exchange will work out the symmetry.
After the procedure, I need help getting up off the bed and look at my chest in the mirror. The breasts now look quite even. Mr Cool helps me with dressing as my arm and chest are not sure how or if they should be moved. We very slowly walk out of the hospital as I experiment with new strategies for breathing. We dawdle to one of our favourite city lunch spots. On the way Mr Cool and I debate about who my plastic surgeon was speaking to when he answered his bad to the bone ringing mobile. I envisaged him talking to his daughter about his grandchild going to sleep. Mr Cool felt it was a patient going to sleep in surgery. It doesn’t matter who is right. We are hungry and I don’t know if I can even lift or move in particular ways or even eat with the sensation of just 60mls. I wonder how on earth I will make the 150km journey of bumpy roads home? For now, the breathing, is okay though. And I intend to return post radiotherapy for another very small fill in late October.
There has been 2 and a half weeks of post surgical pain and recovery. There has been a very conscious attempt not to get addicted to serious pain analgesics. There has been careful management of an Exudrain surgical drain which I am now free from. There have been daily nurse visits to my home, and persistent post chemo and surgical drug induced digestive woes. I have been fortunate enough to have had some wonderful visitors in my home including my mother and sister in law. They are now gone and life is moving forward.
Very soon I will post the retrospective blogs I wrote in the last three weeks. While high on Endone and OxyContin and suffering the after effects of five months of chemo, surgery and the dizziness of low haemoglobin, I lost my blog voice and could not concentrate for any length of time. But I am back with a clear mind. So stay tuned.