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.
It’s been nearly twelve months since I finished chemotherapy and thirteen months since I had a visit from Aunt Flo. I’ve always imagined Aunt Flo to be a slightly eccentric, slightly deaf, toothless, foul mouthed, shawl wearing, smoking, mad cross stitcher, with a hoarse voice that abruptly shouts at anything that moves.
Nothing about my menstrual cycles have ever made much sense to me. Painful, loathsome and life disrupting. So imagine my happiness when chemotherapy locked the door on Aunt Flo for over a year.
Everybody in the house shout “Yay to Cancer!” for Lisey.
In recent months I have been experiencing loads of pelvic symptoms. Cramping, sharp pains, dull aches at night that wake me. Whispers of pain of sorts. And all of this even detectable while my household went through the worst flu and longest recovery I think we have ever had.
Last week saw me get the news that I have cysts on my ovaries which tends to be common for pre menopausal women on
Tamoxifen, err I mean Tamoxibitch. The drug does not lower oestrogen in a women’s body but changes its ability to connect with cancer. Akin to changing a lock and having the old key not work. And this is rather important given my grade three tumour was 98% positive for oestrogen.
Well after nearly a year of sleeping, my ovaries are now working over time to get the show on the road. And it seems at present I have enough oestrogen to initiate a great coral spawning episode on the Great Barrier Reef.
Unfortunately one of the cysts is approaching seven centimetres in diameter and is “complex” in nature. Which means it’s got solid parts to it, and cancer cannot be ruled out. Rather than the simple, rounded, smooth clear fluid filled cysts that are observed on ultrasound, that women commonly get throughout their fertile years.
It’s not easy getting around with a seven centimetre complex cyst in your abdomen. Sitting, coughing, laughing, weeing and pooing hurt. Sometimes walking hurts too.
Normally, ovaries are the size of an almond or a walnut but swell to larger dimensions with cysts. Mine resembles a large lemon. Not that I have anything against lemons. I love lemons. I really do.
But the real danger of having a cyst this large is in having the cyst and ovary twisting on itself (torsion) and becoming necrotic which is a medical emergency.
It’s also not easy wondering if the cyst in your pelvis might be cancer. And it’s very easy to go to that place in my mind given where my journey has been since January 2013.
So to be honest, I have spent quite a bit of time in recent weeks and over the weekend wondering if I have in fact Ovarian Cancer or Breast Cancer mets to my ovary. The Dread Dragon paid me a visit over the weekend and even Mr Cool has been under his spell. The ongoing threats to my health are wearing us both down.
The Cancer Council of Australia lists symptoms of Ovarian Cancer as including one or more of the following:
- abdominal bloating or a feeling of fullness (when eating little).
- Loss of appetite.
- Unexplained weight gain.
- back, abdominal or pelvic pain.
- frequent urination.
The issue with such vague symptoms is that many women experience these symptoms ALL THE TIME. And some of these symptoms normally present when Ovarian cancer is advanced which obviously leads to a much poorer prognosis.
I guess the point again is listen to your body and see your doctor if things don’t feel right. Listen really attentively. Pick up on the whispers. Women are the best judge of their own bodies.
The only thing that has lifted this worry and uncertainty is the excellent care and prompt action of my awesome oncologist who gave me a referral to a superb oncological gynaecologist in the big smoke. And yesterday, I made the trip to see him at very short notice. (Must remind myself to take my oncologist a gift of thanks to our next appointment.)
At the end of an exciting week which saw an upper abdominal ultrasound, trans vaginal ultrasound and a pelvic inspection which included both vaginal and rectal exploration, (Imagine adult hand, glove, lube and small talk). Dr OG (that’s Oncological Gynaecologist) suspects that based on my hormone levels and bloods it isn’t suggestive of ovarian cancer at this stage, but he can’t rule it out without actually removing the ovary. He said I would be very, very unlucky if it turned out to be Ovarian Cancer which is more likely if you are over sixty or carry the BRCA genes, which I don’t.
So the plan is we will try the wait and see approach. Rather than expose me to unnecessary surgery now, when the odds are more favourable that the cyst is benign than not, we will look at it again in four weeks.
And that means I get to experience the joy of another trans vaginal ultrasound! Yay! If the complex cyst hasn’t resolved on it’s own by then, if it is still the same size or larger then it looks like there might be surgery to remove my ovary, or both ovaries and remaining Fallopian tube. I lost one a few years back and nearly died but that’s another story. There may also be a need to review my relationship with Tamoxifen.
Dr OG is betting that the complex cyst will resolve sometime soon, and given the thickness of my endometrium, Aunt Flo might be paying me a visit in the near future after all. And when she arrives she could be quite a doozy, if you know what I mean!
Better put the kettle on and see what the next four weeks brings.
Surprisingly, this new found situation of reemerging fertility actually caused me to think about having more children. For a few minutes yesterday in the car I found myself lamenting all of those perfect little eggs of mine that would never get to meet with my husbands DNA and become another of the most divine little creatures we already have. Maybe we could find a surrogate? No, no. Stop thinking about that. Then some tears. That part of my life is over now. It’s taking the potential return of my fertility to remind me of that loss.
After not having a period for thirteen months and thinking of myself as menopausal for a long time it’s a bit strange to be entering the fertile fray again. One thing is clear, I’m definately in no rush to go out and buy myself a nice pair of cream pants!
Hell, I might even throw myself a period party. Dress code… red of course.
Did I just type all of that? Why yes I think I just did!
A familiar scene for 2013. Lucky it’s a nice one. Back to the big smoke this morning for news of the next phase.
Why did I chose to start my cancer treatment in a hospital 200 kilometres from my city that has a perfectly good hospital that treats cancer?
My GP with the nervous, wry smile when announcing my diagnosis said… “You would be crazy to do that! Our hospital has great oncology and radiotherapy departments. I know the head of the team. He is a great guy. The surgeons are good. But you would be mad to go to Melbourne! Our city has better survival rates, and if you were my sister I would say you’d be mad to do that!”
There was criticism from others too.
Let me see, my breasts, my body, my mind, my life! There is a lot more to lose when you look at it from my perspective.
We had the roofs of our houses fixed last year and I stupidly accepted the first and only quote. So I have learnt the hard way. Why would I get one quote relating to something so important? This is a very serious matter and I didn’t want to look back in years time and ask the question would the outcome have been any different had I gone to a large specialist cancer hospital in a the big smoke? So I did some research.
In my future, the outcome of this decision may be no different. But I am happy with the decision I have made. I will have all of the surgeries in Melbourne, the treatment plan will be decided on by a large team of professionals and referred back to my local hospital where I will undergo chemotherapy and radiotherapy five minutes drive from home.
But the decision about treatment is a deeply personal and individual one.
In Australia, people have a choice to be covered by their own private health insurance scheme or the publicly funded government system called Medicare. Philosophically and practically, my husband and I have always been opposed to private health. Partly because we have never been able to afford it, living on single incomes as each of us studied or raised our family or paid our HECs debts, or met the expenses of our generation X living. We also, like many, got tangled in the large net of home ownership dreams that has been sold to many Australians. I guess it’s about priorities. But a user pays health system that gives greater healthcare access to people who can afford it just does not sit well with me.
I often wonder what would be my predicament if I lived in the United States and had the same living arrangements, but with the added burden of medical bills showing up in our letter box. Could I claim a redback spider living in the letterbox bit the hand of the postman and so prevented him for delivering such bills? Obviously not. Redbacks do not live in the United States! But seriously, to have to open a letter that says $1500 for the scan, $900 for this, and $450 for the specialist appointment that lasted 28 minutes would be devastating. Or in days gone by, I might have had to mortgage my house to have access to available medicines for breast cancer treatment (as was the case when Herceptin was first introduced in Australia). Heartbreaking stories. I just don’t know how my mental health would fare if this was my reality. It is true, treatment does not come cheap in either country. And if we had chosen private health insurance there would be the actual ongoing costs as well as the gap costs which also add up.
I cannot even begin to fathom what this whole experience might be like living in a developing nation where cancer rates are following similar patterns as here, albeit without the technology, supplies and the standard of medical care we take for granted.
So I am very, very, very fortunate.
Why should access to healthcare ever be about socio-economics? I have never been able to wrap my head around that. Feel free to call me an idealist. Friends have said… “But what happens to you or the kids in this public system if one of you needs a hip or knee replacement? You will have to wait for years in the public system and what if you have cancer?”
Cancer? Cancer is not a problem!
Yesterday, my results from the surgery where completed by the pathology team. They were printed and collated. I’m hoping the breast tissue and all of the nodes cooperated. The results were emailed to all relevant team members. Sometime in their busy day of rushing to patient clinics and ward rounds with takeaway coffee cups they would have taken a look.
Some of the members of my illustrious team work most of their week in the private hospitals nearby and they run through the parks to work at my public hospital. I’m not sure about it, but I think my breast surgeon runs in her stilettos across Fitzroy Gardens. One day I might go and sit there quietly under a tree on a park bench along the main path between the private and public hospital she goes between. I would need to be incognito, but it would help me confirm if she does in fact do this. That might be a bit obsessive and stalkerish? Hmmm, only if people find out about it, I guess.
So, this team, my team, met to review my case yesterday. In the room there were up to fifty health professionals who listened to the presentation and reviewed all the data. They might have debated and they hopefully reached a consensus on the best course of treatment for me. Patient is Lisa. She is 37, almost 38 years old, has two very young gorgeous children and an awesome husband, has a healthy BMI, is physically active, likes running and triathlons and chocolate, bloods results are good, comes to appointments well researched and asks lots of questions, doesn’t let much slip by her. Actually, probably none of this is mentioned, more like… staging scans clear so far, full pathology results are… cancer type, tumour size, grade, margins, hormone status, HER2 status, nodal involvement. The surgeons provide a brief, the plastics team representative says something, the nurse coordinator says something then the oncologists discuss my treatment plan. Discussion. Alternatives? Consensus reached? Great! Next patient…
So when I worried about getting a second opinion in the early days and stressed over my decision to go to the capital city because I really, really wanted a second opinion, I never dreamed I would essentially be given between five and fifty of them. One can never collect too many opinions!
I wanted to be there in this meeting. After all, it is me they are talking about. But the hospital has a policy of not allowing patients to be present. Apparently they trialled patient involvement in these review meetings recently and it didn’t fare so well. The outcome of the trial was that patients don’t like to see professionals debating treatment options. They don’t like to see time wasted on discussion about rounds of golf or a new restaurant that just opened in the CBD. Or flirting between colleagues. Patients don’t like to see uncertainty. They don’t want to know that oncological treatment options could go several ways based on research studies and differing opinions. They don’t want to see personalities and institutional politics or pecking orders at work. What if the bully oncologist wins the argument, not out of merit, but an ability to stomp on the views of others? What if they are tired in this meeting? It is someones life we are talking about isn’t it? My life.
This doesn’t worry me. Like all things, medicine is culturally constructed. It is the best tool we have in dealing with these matters. But I don’t prescribe to the notion that there is the best and most undisputed way. Our understanding of the world is changing all the time. And thank God it does. Cancer treatments evolve and change all the time. And it is through this dialogue between practitioners and their research debate that we know more and more. I am accepting of this whole process.
I would have really appreciated an invite but alas I didn’t receive one. So as would have it, my ears burned a little yesterday.
I imagined the room would have been full of crazy ties, business shirts, perfume and beards, spectacles, after shave and Audi key-rings. Clipboards, pens, iPhones, iPads and perhaps some egos. But most importantly the room would have been filled with (at the very least), a collective 500 years of medical knowledge and experience in both public and private healthcare and there can be no price put on that.
I have enjoyed the nurse at home visits. This week I met five awesome people who assisted me in the home with their bag of hospital latex gloves and Tegaderm dressings to see how I am faring and to measure my drain output. All of them work part time visiting patients in local homes and spend the bulk of their week in the emergency department, or paediatrics or other hospital departments. The home visits help them get out for a while and keep them fresh. One of the Exudrain twins has now been removed and the second will get to go on a car ride back to Melbourne tomorrow for the much anticipated results. Once it is out I will be free!
After a week of struggling with breakthrough pain at night time, I got on top of it yesterday. My awesome GP who isn’t so good at telling his patients about the cancer within them, is very good at writing a script to restock my supply of Endone. It would also appear he is great at checking my post diagnosis triathlon result online. So we are all cool again. It was never going to be an easy task for him, being the deliverer of such bad news.
Life is good.
I am home.
Mother’s guilt has been quietly bubbling away in the back laboratory. It started with the diagnosis six weeks ago. First it appeared as grief from the impact of my lost health on my children. A kind of lost opportunity cost is to be paid for all of the wonderful experiences in 2013 that won’t go ahead. It is not what I would ever have wanted for my kids and husband, or their grandparents. What was to be a year of healthy misadventures including play, travel, athletic conquests, my first time snow camping and skiing with my oldest boy, has been replaced with the possibility of 5 surgeries in Melbourne, 3-10 months of chemotherapy, maybe some radiotherapy for good measure, fatigue, pain, laying around and telling them Daddy will help, or Nanna can do that, or maybe my friends will do that when they visit. They will see me be sick, see me cry, see Mummy lose her hair, see Mum and Dad argue as they juggle the altered dynamics of home and parenting roles.
I might have to miss going to Port Macquarie in May to support hubby in his tenth Ironman triathlon finish. He proposed to me when he crossed the finish line of his first Ironman back in 2004. My Mum just happened to be there that moment. All day, he struggled through cramping and vomiting and every time he saw us he asked me if I would make sure I had his bag at the finish line. I never knew I had carried round the engagement ring with me all day. I have been at every one since and as our family has grown, so too have our children.
More annoying to me than the possibility of being unable to support him in this race, is the thought of missing the week of camping we had planned for our children. A week camping with their uncle and aunt and their three cousins in Northern NSW. I will make sure it does go ahead. I hope I can go, but the thought of me not being part of the experience is playing on my mind. Don’t worry about things too far ahead I keep telling myself. One day at a time remember.
To add to the dose of mother’s guilt, both children developed a bad throat and cough last week. Of course it was the night before I went to Melbourne for surgery. So not only did I leave, I left when they were sick. There have been nights when they haven’t slept. Coughing wakes them and they cry. Our youngest just wants to be held, so he has spent every night in bed, one night between Nanna and Grandad, and then the rest of the week between his Dad and his brother. He is not happy sleeping unless he is the filling between two pieces of sleeping pumpkin sourdough.
When I returned home five days later, my eldest son took it in his stride. My youngest not so much. It has been a week since he cuddled me with his usual affection. There are the physical barriers of ghastly drainage tubes that I carry round in a bag and the mental barriers as well. When the honest toddler came to visit me in hospital three days after I left him at home sick, he would not look at me, he did not want to be put near me. There was a bit of punishment for mum to be dealt out. She abandoned us last week and left us home.
Since arriving home there has been more of the same, Dad is the one he goes to for everything (Which at this point isn’t such a bad thing). Dad is the one to console him. I am like a stranger. I have been moved to the spare room as the marital bed has been taken over by two sick children and a squashed on the edge, contorted husband. Too much noise and movement in there for my liking. So the spare room it is for me.
Hubby is at times buckling under the weight of all this new found pressure of kids wanting him 24/7. As much as Mr Cool can buckle I suppose. I am sure he is also worried about the things he isn’t able to achieve at work. Then there is the missed sessions of training for the Ironman triathlon that is just eleven short weeks away. Training for these events normally keeps him in tip top shape emotionally and physically. He doesn’t know it yet, but I think we might benefit from some couples counselling once the impact of this journey becomes clearer. (I can feel his eyes rolling from another room as I type this!) What is it with men and their dislike for communicating about their feelings?
The flip side of the negative opportunity costs of cancer are some wonderful gains. There will be lots of positives in this experience. Though hard to see now, we might come out the other side of this much closer as a family, we might be grateful for what we have, the small things will mean a lot, we will cherish our time together. Other positive experiences will open up. It’s not what I wanted for my children and family, but it is what it is. We will try and make the best of it.
The other day in hospital I got a visit from a dear friend who I went to university with 14 to 17 years ago. In that time we shared a miners cottage for a while. It was built in the Goldrush days of the 1880’s. Back in this time men grew on average to 5’4″ in height. The door frames and ceilings were just above our heads. I remember us living off a student diet and I used to laugh at him when he used to eat a five bulk pack of two minute noodles out of a large bowl in one sitting. Across all of that passing time, our humour and conversations have not changed, racing along without even a second to catch a breath. He happens to now be a firefighter at one of the largest metropolitan fire stations and as a fluke, it was just two blocks from my hospital. So with schedules on our side, he was able to show my boys around the trucks and station. Something they will cherish for a long time.
Had cancer not happened to me and my family, I wouldn’t have seen him for another five years at least and my boys would not have had this awesome opportunity. So cancer initiates some wonderful opportunities and learning experiences as well. Then there was a visit from a student I taught when I was a lecturer 11 years ago. On her visit, she stole my children’s hearts and then told me some of her internet dating stories. Last week also brought my closest, long term friends in to see me as well. Very special moments.
The events of the last six weeks have opened my heart to just how many wonderfully supportive family and friends I have. Our doorstep has seen the arrival of not one, but two juicers weeks apart from the same people, (incredibly the first to try, and the second, a gift to keep) and I have been given my own pre-purchase intimate iPad demonstration. There have been so many flowers delivered our house feels like a florist. There has been an array of home cooked gourmet meals, get well cards, gifts, and lego mini-figurines for our children. There have been lots of gentle hugs, messages of support, offers to mind the kids (which is the most important job of all). A whole community has opened up that I shamefully never took the time to tune into before. Of course this also includes the hundreds of keyboard warriors who are following me and pulling me out of any dark places I might be heading towards in the coming months.
I am acutely aware of depression sneaking up on me. When it comes, it will be a ‘depression procession’ of sorts. I am also on guard for signs of it in my partner and loved ones. What is surprising about having cancer is once you are okay with it, you begin to tune in to how it effects other people. I was surprised to see one of my dearest long term friends upset when she visited me in hospital the other day, this is a friend who visits hospitals all the time for her profession. She said it was different when it is someone you know. It made me feel like I had been a little selfish holding onto it as only my experience or journey. The impacts are far reaching.
We have entered another cycle of waiting for results. There has been the waiting for diagnosis, waiting for the results of lumpectomy and sentinal node biopsy, waiting for the results of the bone and organ scans (which came back as ALL CLEAR, so nothing major lurking elsewhere at this moment!) and now the waiting for the results of the mastectomy, nodes and nipple scrape and freeze. In all of this you just want to have an idea of the treatment that lays ahead, especially with respect to the chemo regime. It has been one and half months and I, we are still waiting.
Friday. Friday will tell us.
As I type this, my youngest has come into my room to give me a cuddle because they are going out. Day seven and I am back in the ‘need to cuddle Mummy’ books. The oldest is very excited he is off to bush kinder this morning after missing the week with his cold. I have asked him to try and remember some of the details so he can tell me all about it when he gets home. Always, he has a great time, but he often says “I can’t remember what happened” whenever I ask him how it went.
Before leaving he took a photo of me on the iPhone. A portrait of me in these homecoming days. Drains, pillow and the little expander that couldn’t. The breast you can see is the unaltered version. The pillow is needed to alleviate any pressure on my chest or armpit.
When the oldest returned from kinder, he told me about the kid that pushed him over today. Last week, this would have been upsetting. But today, he thought it was funny. This afternoon, he asked Daddy to give him a haircut. He asked for a mowhawk style and Daddy obliged. He is growing up.
I’m hoping that throughout this whole journey, wherever it takes me, there will be no greater ‘flight or fight’ stress response than the one I experienced when I first waited for results between initial biopsies and being told by my GP with a nervous, wry, smile on his face that I have cancer. My fight or flight response went for sixteen days and I don’t ever want to go back to that dark, dreadful place.
Today, I have been totally surprised by my emotional response, or lack there of, to the news I received yesterday. I have gone into logical, planning mode. I even have the desire to clean my house and do some of the jobs I have been neglecting for the last year because I have been busy planning my next fun run, triathlon or sticking to my half marathon training plan. It’s akin to a kind of pregnancy nesting.
Yesterday, we got the early news from the surgeon that the cancer has made it to one of the four nodes removed from my armpit, and there are still cancer cells in my breast post lumpectomy, so yes, it’s back to the hospital in a few days for my second surgery in two weeks. I’m starting to worry about my enjoyment of anaesthesia in a way that Michael Jackson experienced it. To wake from a slumber with a totally relaxed mind and body is bliss. And then the reality and pain slowly come into focus.
This time, my visit to the surgeon with the nice perfume, and the room with the 1970’s wallpaper will entail a full mastectomy, and the removal of all of the lymph nodes under my armpit, and for good measure some reconstructive work done immediately. I hope I get to see the bearded nurses again. As I will attempt to back up my previous visit with some equally engaging chatter and some new comical material. I wonder if they will recognise my blue nipple again?
The surgeon was rushed in her consult yesterday. She had come to hospital just to meet me. There was a plastic surgeon waiting outside the door. On cue, he entered and after polite introductions we got down to the business of what I wanted to look like post mastectomy. I was shocked when presented with a box of breast implants. Oh the enormity of a ‘b’ cup implant. Those things are humongous and scary and my reaction made the plastic surgeon say, “It’s okay, we can also use some of the smaller implants made for ‘Asian’ women”. I still can’t stop laughing about that. All this talk of implants and cup sizes makes me feel like I’m in an episode of Embarrassing Bodies.
I only started to wear a bra in high school because every other girl in the PE change rooms was. Not because I needed any sort of support. And when my best gay friend, JRF, gently suggested to me that at 32 and pregnant, “Darlin’ I think you should be wearing a bra!” as I was, in his eyes, ‘bouncing’ down Chapel Street. I remember looking at myself in the shop windows, to see if his statement had any merit. He was right, I was bouncing and drooping. It never even occurred to me that yes, perhaps it was time for some support.
On a more serious note, the biggest shock in all of this was that the tumour was double the size of the initial tests. But this often happens and it’s more about the pathology process of measuring the way a malignant tumour messily branches out with its twisted and knarled arms. The pathologist measures the full length from branch to branch, through an array of finely sliced segments, not just the overall shape of the mass as ultrasounds and mammograms measure.
Also of shock to me was that my tumour was the fastest growing type one can have, graded three. This made me wonder how fast do these bastards grow? Did it start growing whilst I was out jogging one day late last year? Didn’t it like the music I was playing? Was it fed from my GPS tracker on my iPhone while I was using RunKeeper? The irrational thoughts came streaming, pulsating, coursing through my mind. But, after some initial tears and questions, I was able to pack these thoughts away by closing the the lid on the box. I very quickly returned to my calm, logical planning self.
There were some positives in all of this.
The cancer is very positive for the hormones oestrogen and progesterone, which gives me an additional treatment option of long term medications that block the cancer’s ability to feed of these hormones, and if the cancer can’t feed then it can’t grow. So there cancer, take that! Ironically, when we were trying for our children I often wondered if my body was producing enough of these hormones to make and sustain a pregnancy. That sneaky, selfish cancer has been using these hormones to benefit itself.
There will be years of hormone altering medications down the track. And this is quite funny as I have never remembered to correctly take the contraceptive pill. I am also the person who gets a panadol out if I have a bad headache and then forgets to take it. I forget to take my multivitamins. I forget to make the cup of tea from a kettle that has already boiled three times prior.
Apparently, fast growing cancers are also quite vulnerable to the formidable beast of chemotherapy. Rapidly replicating cancer cells shrink and shrivel to nothingness. Or at least that is what I am visualising.
I have also tested negative to the HER2 antibody which is a cellular protein which also speeds up the growth rate of cancer. So that is also a fortunate thing as I won’t need the medication to flick that protein off.
I can’t help feeling how fortunate I am. There are some who have what is called a triple negative cancer, which means these three factors, the two hormones and the HER2 protein are all negative. And these cancers only have chemo and radio as available treatment options. I am lucky, as I have this additional hormone therapy as part of my arsenal.
And the biggest positive of all, is that tonight, in light of more surgery, a lost and altered body part, the prospect of a long recovery, chemotherapy that has again been delayed, with a planned second mastectomy post chemotherapy, life goes on with cancer.
I am going to have a fabulous weekend, lunching, dining and running a 10km fun run with gorgeous, positive, intelligent and spiritually enlightened women. This weekend will be jam packed with many soul sister type experiences and these just fell into my lap today. A fitting way to farewell my 37 year old breast in the coming days. A bon-voyage breast festival of sorts!
And to top all of this off, tomorrow, my gorgeous husband is buying me an iPad!
There have been times in my life where results really, really mattered to me. From academic grades, sporting achievements, how family and friends receive a meal I have cooked, the outcomes of pregnancy tests.
At the age of 12, I missed out on getting dux of our year level because of one lousy ‘B+’ grade in a Metalwork subject. Yes, out of ten grades, I achieved nine A’s and one B+. The major assignment was to make a ring. But in the deep recess of my mind, I remember unsuccessfully using a machine to cut red plastic. I also remember developing a keen interest in boys that year, which may have contributed to that B+. I was so close to sharing the glory of ‘ten golden ‘A’s’ with four other girls. Those dux kids from school went on to become some of the most amazing teachers, nurses, pediatricians and forensic pathologists in Australia. I wonder what might have happened to them if they got a ‘B’ in Metalwork that year? (Insert facetious grin here.)
As a secondary teacher, I never experienced anything quite like the anticipation felt on the eve of the release of VCE year twelve results. My kids collectively achieved the highest results in our state in the Outdoor and Environmental Studies subject for several years, but more importantly they were passionate about learning and they worked really hard for what they wanted. It was always about the quality of their learning. Not their grade.
Tomorrow is an important day. The results should matter, but I’m not sure that they will. My Dad was told his cancer was stage two. I remember saying to him “Dad that’s a great sign! Stage two is okay.” He was gone just six months after his cancer was staged by the most advanced technology and some of the greatest medical practitioners. So I’m not going to get caught up in the stage or the results of my cancer. Instead I’m going to focus on eating and sleeping well, exercising, relaxation and appreciating relationships and generally being grateful for a rich life experience.
My surgeon will tell me that I can’t possibly get an ‘A’ with this. That would indicate my cancer was stage 0 and hadn’t yet spread from it’s initial cells. My cancer is already invasive which means it has spread through the cell structures. From the size of my tumours and their rate of growth, my cancer stage will be revealed tomorrow as a B+, maybe a B. Even a C+, a C or a D+. And I am okay with any of these grades even though I still harbour some bitterness for that Metalwork teacher from 1988.
This Metalwork result has never been what’s important in the scheme of things. What mattered was continuing to do better. Continuing to have a passion for learning and living, and having a desire to contribute and make a difference. So regardless if tomorrow brings a B+ or a D- on my cancer report card, I will be fine with it.
I visualise a network of busy tollways. Where the gatekeepers, the toll points sometimes malfunction and let cars through without charge. Sometimes, the toll attendant falls asleep. Sometimes the e-Tag device doesn’t register. Maybe some vehicles sneak through with no number plates and can’t be photographed and identified, and maybe, just maybe they have stolen number plates. What if the toll gate has been invaded or blocked by broken down vehicles?
I live in one of the only regional cities in the state that has to enter our capital city through a network of toll gates. So tomorrow, when I travel the two hour journey to hospital for my results, and drive under the toll gates and hear the beep beep of the eTag, it will symbolise so much more than just the usual reminder that I should have topped up our toll account. It signifies a system of healthy lymph nodes, filtering, catching, identifying, analysing, picking up each fragment that travels through it, stopping the rogue travellers.
I’m hoping the traffic is clear, the toll gates have been vigilant and are working effectively.