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.
I’m having a mastectomy tomorrow. My second one for this year. That will be more mastectomies than Coq au Vin’s for 2013.
Tonight, on the eve of getting my second breast removed, we have come to the big smoke to see a comedy show called “Laugh Your Tits Off”. If only it was as simple as laughing uncontrollably for a few hours. The show is at a theatre a few blocks from my surgical theatre. How could I not attend? Mr Cool and I booked a swanky hotel in the city, left the kids with the Grandies, and rallied 14 awesome friends to come to have dinner with us on a cold Monday evening in Melbourne.
I couldn’t think of a better group of people to share this night with. All of them have been key features in supporting me through this story. There are my “sole sisters” who came and ran a 10km fun run with me in the 14 days between my lumpectomy and before my mastectomy back in Feb. They have been incredible sources of inspiration to me this year as I have continued to watch them aim higher with their running achievements. This makes me want to get off my arse when my treatment is complete and work hard to getting fit and healthy again despite my starting place being a little different and the new hurdles that await me. Breast cancer with all of the changes that it creates is not going to defeat me.
There are my dearest and longest high school friends who have been with me right from the beginning. They were the first people I contacted when I got news of my diagnosis and they have offered so much emotional and practical support I am wary of wearing them out. There is so much love and meaning in our friendships dating back to 1987. I tear up just thinking about this group of people. Although we don’t catch up a huge amount throughout each year we have shared some wonderful and not so wonderful times and when we see each other it really counts. Our group has grown as we have met partners and had children. These people know me so well and respect me with all of my oddities unconditionally.
There is the sister I only became acquainted with last year before my diagnosis who turns up at my house with her humour and a week of home cooked meals. Sometimes she brings coffee. Sometimes she arrives with a 15 year old fruitcake that she has claimed from helping someone else organise their pantry. You know when you meet someone who just ‘gets you’? She is one of those. Often we Facebook comment when watching creepy body part shows and gross everyone else out. We connected before my diagnosis. She oddly has been in this position before, connecting a few years ago with another young mother who shortly after they met was diagnosed with cancer and was taken far too young by it. So the timing of us connecting and me being diagnosed with cancer is a little weird to her.
Strange how we are drawn to particular souls at various times in our lives. I am so grateful that these individuals were available on this night. The universe works in mysterious ways indeed.
So, there is nothing like a bit of laughing your tits off with awesome friends the night before a prophylactic mastectomy. Six months to the day between these two surgeries yet the first was filled with fear and was a hurried race towards the urgent removal of a fast growing cancerous tumour. The night before was sleepless, stressful and filled with worry. This time, it’s a meaningful celebration, shared with great people and great food. Tomorrow, breast tissue shall be gone!
So Mr Cool and I are walking to a pre show dinner to meet great friends when Mr Cool’s phone rings. It is my breast surgeon who has been trying to contact me. I had a missed call minutes earlier but had not been able to answer my phone as I had just painted my fingernails and couldn’t reach into my pocket for it. Mr Cool put on his best voice for the woman his wife has an intense one way relationship with and he hands me his phone.
I apologised for not answering the call the first time and my breast surgeon said “Oh it’s okay you were putting nail polish on. You know Lise, I always say to my patients if I can wear nail polish during surgery then they can too, but only if it is red.”
I looked down at my fingernails and my nail polish wasn’t red, it was mint green. I contemplated finding a late night chemist to purchase some red nail polish in preparation for our meeting in the surgical theatre tomorrow and then told myself to stop being ridiculous and listen to the point of the call. I would be taking my nail polish off in the morning as per the hospital pre surgical instruction pamphlet. The breast surgeon was still on the line and she continued… “Has your plastic surgeon called and spoken to you in previous days?”
“No, no he hasn’t.” I answered.
“Well, he was going to call you and discuss the prospect of not exchanging your first tissue expander in tomorrows surgery. After looking at the research literature, speaking with other plastic surgeons and considering your particular case he has decided it is better to radiate the tissue expander and then exchange it at least 6 months to give your tissue and skin time to heal from the radiotherapy.”
I had suspected this would happen. I too had been researching and there are not many cases of radiating silicone implants because of the risk of scar tissue complications so I was kind of relieved that they finally got around to making a decision. The damage to the skin and tissue from radiotherapy will be the same for expander or implant, the effectiveness of the radiotherapy will be the same regardless of whether a tissue expander or silicone implant is radiated. But it will be better to preserve the integrity of the implant if capsular contraction is to occur.
Of course, this now means a fourth surgery next year or whenever the public list calls my number to exchange the two expanders for implants. Damn these awful expanders. Tomorrow, I’ll have two and I hoped to have none.
I hung up the phone and Mr Cool and I continued walking. I was a little confused at the change of plans and took a few minutes to process the conversation. I rattled on to Mr Cool as we crossed major intersections, oblivious of where I was, my mind fixed back with the conversation with the surgeon. I respect my surgeon and plastic surgeon a great deal. They know what they are doing so on we roll. We met with our friends for some great food and then walked to the show.
“Laugh Your Tits Off” was a hilarious comedy show with some of Australia’s most loved comedians. All proceeds from the show were donated to the “Love Your Sister” project to raise money for the Garvin Research Foundation. Samuel Johnson is a much loved Australian actor, and his sister Connie has stage IV breast cancer and has been given a short prognosis time. Together they embarked on a journey to raise funds and promote awareness for cancer research. Connie has two little boys like myself and was diagnosed about 3 years ago with breast cancer. Incredibly, this is not Connie’s first experience with cancer – at age 11 she fought off a very rare and aggressive bone tumour in her leg. Then at 22, she overcame a tumour in her uterus. Then, at 33 Connie was diagnosed with breast cancer and this time it spread to her lungs, liver, pelvis, spine and knee. At the start of this year when I was diagnosed, Connie was given a life expectancy of between 6-12 months.
Connie’s legacy will be an incredibly meaningful one. While I sat in my hospital room a few days after having my first mastectomy, Samuel started his journey to unicycle around Australia departing from Federation Square in Melbourne. I remember watching his departure on my hospital room television screen and wishing I could have gone. Since then he has ridden nearly 10,000 kilometres crossing Australia through desert and past breezy coast, on bitumen and red dirt, past B Double road-trains. As well as riding the distances Samuel is stopping and doing dares along the way. He has raised over $750,000 so far, with the ultimate goal is to ride 15,000kms and hit the million dollar mark.
When I met Samuel pre show, he looked at me and with such sincerity asked me how my treatment was going. I blurted out it had been a crazy journey but was made easier in watching his attitude and achievements in spite of the hand that his sister has been dealt, and that the love he has for his sister is inspiring. We embraced and I wiped away some tears and everyone raced off to start the show.
After a few hours of hilarity Connie and Samuel took to the stage and received a huge standing ovation. There in a very raw moment, the laughter was silenced and I was reminded that through all the laughs and glitz and awareness raising and the “pinkification” of breast cancer, there is this brutal and unforgiving reality that people, mothers, sisters, daughters, lose their fight to this disease every day. In fact, thirty percent of women who get a breast cancer diagnosis will develop metastasis which will shorten and reduce the quality of their lives and this is irrespective of stage, grade, tumour size, hormone status, nodal involvement, or their treatment pathways. This figure has not changed despite all of the fundraising or awareness raising or screening for breast cancer.
Samuel left the stage and Connie cut a solitary figure in the spotlight on that large stage. There was another standing ovation. Once the clapping had settled she began to speak. She explained the aim of “Love Your Sister” was to ensure that “no young children have to lose their Mum’s to breast cancer.”
Tears streamed down my face. I could see some of my friends wiping away their own tears. And I heard my friend Bevan Lemon who was sitting next to me take a really long, slow and deep breath. A few days later he sent me a text…”I mean she just gets up on stage at the end and spoke and I felt all my stuff I was feeling selfish about, like my trip to the dentist where I felt nausea that day, and my cold, the kids feeling like crap, just fade and get normalised. Thanks for the invite.”
No, thank you for coming. Thank you all!
I think I am in love.
Today she listened to me. Smiled at appropriate times. There were even outbursts of laughter. I know she would have brushed my hair from my face if I had any.
For this consult she had researched some literature for my individual case. “I know that you like statistics so I’ve done some research for you” she said.
See, she is thinking about me even when we aren’t together. She even answered all of my questions in great detail. Time stood still.
There was an acknowledgement that going straight to implant with this next mastectomy might be difficult. “You fit types with strong pec muscles make it hard for plastic surgeons” she said.
Oh she does make me blush!
She again said “We want you to be around for a very long time.”
Let’s not kid ourselves. She wants me to be in HER life for a long time. That’s essentially what she meant. No illusions necessary here.
We lingered longingly, even though other women had already waited too long in the waiting room.
There was an apology about her criticism of my nipple position at our last consult. “I was getting ahead of myself” she said. She is just beginning to truly appreciate my uniqueness.
This was by far our most successful encounter yet!
I wouldn’t be surprised if I get a post date text message tonight. If only I wasn’t living so far away and wasn’t married, maybe, just maybe we would have a chance. Another life perhaps.
She is mesmerisingly and extraordinarily impressive and out of respect for her privacy, I’m not posting a picture of her shoes today.
Can’t wait for our surgical date! August 13th is just so, so far away.
The image below depicts installing a zip to the side of my breast, criss crossing it with black pen, and watching black arrows explode from my nipple. Well not really. More like location of the incision site, removing all of the breast tissue and scraping the inside of the nipple to test for cancer while still in surgery, and taking it off if it tests positive for cancer. That my friends is a nipple-sparing subcutaneous mastectomy right there.
On Friday morning, Mr Cool drove me 2 hours to the big smoke specialist cancer hospital, and despite arriving on time, I waited in the waiting room for another 2 hours for a 12 minute breast clinic consult. I was quite annoyed, especially since a friend of mine who had a later appointment was seen before me and I sat for another hour. Of course, when I went in my breast surgeon apologised for the delay and
I gave her a piece of my mind I didn’t mind, cause she is mesmerisingly impressive worth waiting to see. So all was forgiven.
In the small consult room we gathered, myself, the breast surgeon, the plastic surgeon and the breast care nurse.
After dutyfully stripping off, the plastic surgeon took a close up picture of my breasts with his iPhone doing my best breast pose. Naked from the waist up and with my hands on hips I nearly said cheese as he snapped away. Luckily I’ve been practising in the bathroom mirror for months.
I love the feeling of being photographed topless by a 60 something, hairy faced, balding plastic surgeon and this photo then sitting in his iPhoto collection along side thousands of other breast pics. I’m hoping he doesn’t leave his phone on a table in some random cafe. These pics I assume, will be safely guarded and used as a reference in surgery.
In four weeks, I will be having my preventative prophylactic mastectomy. Tests show no cancer in my right breast. But the risk of recurrence or new cancer is quite high and right from the diagnosis I made a decision to have the second breast off. If my tiny breast can have as much cancer as it did, then I don’t want any breast tissue on my body. Especially since the cancer is strongly Estrogen positive. This decision has not wavered since the January diagnosis.
At the time of this second mastectomy, they will put in a silicone implant and make a dermal flap to hold it in place and stop it from bulging out the top of my pectoral muscle which is pulled off the ribcage to make room for implants to sit behind. In the same operation, they will remove the tissue expander from my left breast that has been there for 6 months, and replace it with a silicone implant. I might ask if I can keep the tissue expander as a souveneir. Could be used as a paper weight or something. After a hostile start, we have become friends, the little Asian sized expander that was never expanded.
Working together, the breast surgeon will perform the nipple and skin sparing mastectomy and a possible sentinel node biopsy, they will turn the nipple inside out and scrape and freeze some cells and hurry them off to pathology and wait for the result in ten minutes. I’m not sure what they will do while waiting. A quick round of Candy Crush perhaps? If the result is negative for cancer I get to keep the nipple. The plastic surgeon will then take over and build the breast with my new implant and give me a bit of hollywood shoozhing. I will be in hospital for 3-5 days and will come home with Exudrains again. You can see a picture of what they looked like last time I had them here. And again a nurse will visit me daily to check the dressings and drains. For a month I will sleep sitting upright in bed as I can’t lay on my sides or stomach. And like last time, I wont be able to run for about 5-6 weeks, perhaps longer given I’m so low from chemo and I will have already commenced radiotherapy 2-4 weeks after this surgery.
They are very happy with the work they did on the left Shittytittie cancerous breast back in January and February. It has healed well and looks nice and perky and radiotherapy should take care of any cancerous cells that may have been left lingering.
With the exception of nerve damage to the breast and arm from the mastectomy and full axilla clearance back in February, I love my new breast, and am quite happy with the 3 o’clock nipple. (Refer to Diagram B below) But in this meeting the plastic surgeon and breast surgeon had a little conversation between themselves while I sat bare chested and listened…
BS : What are we going to do about that nipple?
PS : What do you mean? How far to the left side and how high it is?
BS : Yeah. We definitely need to fix that!
Me : Oh thats okay I have always had nipples that point sideways.
BS : No we really should do something about it.
PS : If she is happy we can just leave it and make the other one the same when we do the mastectomy and insert the new implant with a dermal flap.
BS : Or you could just move it slightly to the centre with another incision.
My Plastic surgeon nodded while closely studying my left breast.
PS: I’m more concerned with this swollen scar tissue at the surgical incision line at the side of the breast. It is very tight. We’ll need to free it up a bit. We could drag it round to make the side of the underarm more streamlined, and that would change the position of the nipple.
Me: What about the top of the breast? It’s very tight when I raise my arm.
PS: Oh don’t worry about that we will loosen that up in the next operation.
The plastic surgeon left the room.
- BS = Breast Surgeon with the amazing shoes and largest diamond I have ever seen on her ring finger.
- PS = Sincere Plastic Surgeon with the hairy face.
- Me = Me with the wonky arsed nipples.
So there is just this small dilemma of the nipple placement. For 37 years I thought my nipples were you beaut perfect. Turns out, the surgeons think they out of the ordinary. Extraordinary even. I have never had front on “beamers” (For those not in the know, Beamers refer to hard nipples, visable through one’s shirt) My lights have always shone out to the sides. Always. But with a lumpectomy and mastectomy and with a tissue expander inserted, my nipple is considerably higher than it once was and it points to the side – like to 3 o’clock if you get my drift. (Refer again to diagram B). The yet to be renovated breast has a nipple that currently points to 8 o’clock so there is considerable work to happen to achieve symmetry. Symmetry is everything in the plastic surgery world. I am a geographical person also, so another description of nipple orientation might include compass points. My left nipple sits east north east and my right nipple currently points south west and the perfectionist breast surgeon would like to see them even and centred. I’m not sure I even care.
For your amusement, below are some annotated diagrams outlining the dilemma. I’m a visual person and I like pictures, but I’m not putting photos of my breasts on this website. Just letting you know now. So below is as good as it gets.
Diagram A: Pre cancer nearly 40 something boobs that have breastfeed two children. These were my “Rocks in Socks”. But they were good rocks, in good socks and they were mine. Before cancer moved into the building.
Diagram B: Post cancer lumpectomy, mastectomy and tissue expander insertion. Here the left breast is perky and larger than the original even though it was never filled or expanded, with a 3 o’clock pointing nipple. Right breast (my right) still the original. I have always liked 3 o’clock, it’s a great time of day.
Diagram C: August planned prophylactic (preventative) right breast mastectomy with immediate reconstruction with silicone implant, making breasts the same with a 3 and and 9 o’clock nipples. Cue circus music. Hideous, someone cover her up! (I thought they would look great!)
Diagram D: August prophylactic (preventative) right mastectomy with immediate reconstruction with silicone implant, making breasts the same with extra incisions to move both nipples more to the centre of breast so that they look like beamer headlights (point forward). (Yawn, can’t be bothered, I thought I looked good already. Mr Cool will find other reasons to leave me than my outward pointing nips.)
Now I am left feeling a little confused by the options for my wonky nipples. Is it really a problem? I can’t have people sniggering at my high and sideways pointing nipples when I go topless on St Kilda Beach after all of this is said and done. Maybe I need a tummy tuck too? My stomach points to the sides as well. Can they do that at the same time? I’m guessing I’ve got two weeks to decide whether I want them touching and moving my nipples when I next meet them and sign consent forms for the surgery. These first world problems get more ridiculous as we ‘advance’ as a society. Advance being a highly debatable word.
For this fortnight, that concludes the great nipple position, freak show, circus saga.
On a more serious note, I will be back to the big smoke in two weeks to see a psychologist about undertaking my prophylactic mastectomy. Apparently anyone who has one must see a psychologist first. Not to approve or deny the mastectomy, but just to talk though the issues around the taking of a breast that doesn’t yet have cancer in it. Do I see it as an amputation of a body part? Will there be any adverse psychological effects of this decision? I had a breast removed already, and I am very ready to let the other one go as well once chemo is complete.
My pathway through treatment has been complicated. After I was initially not likely to require radiotherapy, post mastectomy pathology revealed I probably should have it (Multifocal, grade three, one node, tumour close to chest wall, want to live as long as possible, have young kids etc) which has put a bit of a spanner in the works for how we move forward.
I am presently unable to have an MRI on my breast because I currently have a tissue expander with a metal magnetic port in my chest. Being in a MRI machine would be a bit like sitcking a ball of metal in the microwave. I have had mammograms and ultrasounds of the second breast. They have come back clear. Yet the surgeon has twice raised the prospect of doing a Sentinel Node Biopsy (SNB) to be sure to check the lymph nodes. She said I would be very unlucky to have cancer in the lymph nodes of my right arm given I am on chemo at the moment , but it does happen even when no cancer is detectable in a mammogram or ultrasound. Once the mastectomy occurs, diagnostically they cannot do an SNB because that involves injecting the breast with both radioactive contrast and blue dye and imaging it prior to surgery and then removing the nodes involved to check for cancer (see my previous post “Blue Dye” for a description of this procedure), but there is a risk of lymphodema occurring in the right arm, and I’ve already had all of the nodes removed from the left arm. So having two arms at risk of lymphodema is not a great prospect. The alternative is to take a chance and do nothing with the nodes. So another decision to make as well.
Of course, I am wondering if the surgeon’s picture will be used in some hideous nipple placement photographic presentation at some plastic surgeon’s circus convention. Roll up, roll up to see the lady with the mismatched 3 o’clock and the 8 o’clock pointing nipples! To be fair though, someone who was wearing designer 6 inch fluorescent pink stilettos (kicking myself I didn’t get a picture) has created this uncertainty about my nipples in my mind and it wasn’t my hairy plastic surgeon. To move or not to move. It’s not like I have any breast sensation left post mastectomy anyway.
Just call these growing waves of unsettled thoughts I have to make decisions about my “Nipple ripples”.
Cue circus music now.
Driving to the big smoke this morn to have boobie two squeezed in the prized George Foreman grill. This will be my LAST EVER Mammogram! I can hear your jealous minds ticking over… “Lisey will be free of mammograms… wow wish that was me!” See, a breast cancer diagnosis has some merits. Wouldn’t want to squeeze implants in one of those things. They could burst like a pubescent zit! Ewwww!
Then, I’ll move onto a little cold lube up for my last breast ultrasound before my prophylactic skin and nipple sparing mastectomy surgery next month. Four weeks post last chemo infusion (this Tuesday peeps – mark it on your calendars!) I’m back under the knife, back in theatre with the bearded nurses and the drugs that make me hallucinate. Yee hah! Unless they find cancer today, and then I could drop the “prophylactic” term from my sentence. Which would be great cause that word is hard to type on an iPhone.
I can’t wait to do all of this dressed only in my undies and a hospital gown that opens at the front. Especially since I’m wearing a pelvic belt after Taxotere chemo has giving me the worst sacroiliac sprain and arthritic flare in my lumbar spine of my life and I’ve been hobbling around for 10 days. I spent a few days worried that breast cancer cells had moved in and metastasized. Just call me a “cancerchondriac”. If the mammogram lady asks me to contort myself like a Russian gymnast there is going to be trouble. Does anyone know any Russian swear words?
I visited the surgeon for a breast review 5 long weeks ago and we had conversation that went something like this… “You know Lisey, you can take photos of my shoes but I don’t want them to go on the Internet or anything.” So I’m guessing this will be the last one.
Wish me luck.
Goodbye, boobie two’s day, who could hang the blame on you… Girl I’m gonna miss you.
Since Sunday, I have spent time with three very important women in my life and I have broken down in tears with each of them. There has been a mental shift since the weekend of wonderful experiences with my awesome Melbourne friends.
I visited my dear Nanny who turns 90 in April. She never ceases to amaze me. She was 52 when I was born. There was so much living that went on in her life before I even met her and she is still with us. She has experienced her fair share of loss from cancer in recent years. But she is a strong and upbeat lady. Her sunny disposition and genetic luck has allowed her to live a long life, much of it without teeth. In the late 50’s she had a dentist in London remove her ailing teeth to prepare for dentures, except she immigrated to Australia on a ship earlier than anticipated and the dentures never became a reality. Her sweet sunken cheeks have always been the vision of the perfect Nanny to me.
I had a visit from my awesome sister in-law who played lifeguards with my children for hours, rescuing imaginary swimmers from imaginary sharks in our garden. With credit to “The Octonauts” children’s television program, the species of sharks were diverse. From the surf lifesaving tower on the deck they took turns at the command post talking into pretend walkie-talkies. This was to the delight of my eldest son who had not removed his lifeguard cap for three days prior. She cooked us dinner and cleaned our bathrooms before she raced back to the airport for her return flight to Queensland. My brother chose for himself an amazing life partner and mother for his children.
I also had a pop in visit from my wonderful mother in-law yesterday as I frequently do to see how we all are. She has the knack at turning up at the most perfect of moments. She has a kind of sixth sense of sorts which I am eternally grateful for.
There is something very powerful about embracing another woman that you care for when you have breast cancer. The disease is taken very personally. It sniggers at the qualities that make us mothers, daughters, sisters, aunties, nieces, grandmothers and granddaughters. It attempts to sabotage a bond between women. But cancer can never get in the way at that. An experience like this just draws people even closer.
Even as I type this the tears are welling a little behind my eyes. I’m thinking this may be the start of the depression procession of sorts, or it might not be. I just have to watch where this goes and act quickly. The breast care nurse told me not to wait, but to see my GP for some anti-depressant medication. I have never dallied with anti-depressants in my life, but I was given some post diagnosis and one of the side effects made me anorexic. So I understandably have some trepidation. I first would like to try my own ‘walk and talk therapy’. This is where I walk for an hour daily, and talk to as many people as possible about how I am feeling. I am now fit enough three weeks post mastectomy to get out and move again. I can’t yet run as I am still healing and the tissue expander is settling. But exercise has been so beneficial to my moods in the past. I think this might help me immensely. I might also see a psychologist to have a chat, though I think psychologists should have really great coffee machines in their rooms. Maybe even some biscotti or something. That might help too.
Part of me is wanting to rebel against the predictable pathway of the breast cancer experience. I am seeing this common journey that women take on forums and blogs and in the knowing looks of women sitting in hospital waiting rooms. Doctors and nurses are quick to try and solve the problems for you. Often with medication. But it is just going to take time. Emotionally I will fall apart. It is a given. But I will put the pieces of myself back together again. Of course it is easy for me to articulate this at present, as I haven’t yet been gripped by the effects of chemotherapy. But this needs to be ‘MY’ journey. I don’t want to be told I will get depressed. Or my hair will definitely fall out. Or my nails will turn black and fall off. Or my bowel will never be the same. A self fulfilling prophecy effect will have no part in this. I need to let the experience unravel itself.
It has been two months since this cancer wheel started spinning. It has been a bit like being on a spinning ride and the Royal Show. The Gravitron ride was a favourite when I was younger. It looks like a spaceship and you enter and lean against the wall. You are propelled round and round with such force that you just grip on as tight as you can. You can’t really move as the force is too great. And then as it slows and gravity takes hold, you see the people opposite pulling their dresses back down to a respectable place and wiping saliva from their faces. Slowly but surely, everyone is back in the land of gravity, or should I say reality and the dance music stops. Then everyone gets off and gets on with things. Suddenly, since the surgeon, plastic surgeon and breast care nurses dumped me, I have all of this time on my hands to think about what has actually occurred in the last eight weeks.
To add to this reality, today I met the geneticists from the Peter Mac Familial Cancer Clinic. There were two people. Geneticist One was nearly seven feet tall and wore glasses. He was an enormous graceful giant. His height may have instilled in him an interest in how genetics worked and this may have been motivation enough to follow this career path. He reached out with his gigantic hand and softly shook mine. We walked the corridor side by side and went into a consult room. As he stooped through the doorway to enter the room I expected to see a beanstalk and a golden goose. But there waiting behind the door was a genetics counsellor. A stunningly beautiful girl, fresh from university and dressed impeccably. She presented a set of perfectly pursed lips painted with a deep red lipstick. I so wanted to get out my iPhone and take a picture. A new obsession perhaps? For a while I found it hard to absorb what she was saying because of her lips. I kept focusing on how they moved. Then how her wonderfully styled brunette hair framed her face.
I had gone prepared with all of the dates and as much as I knew going back four generations. The information covered relatives from both Australia and the United Kingdom, many of which I have never even met before. Much of this information I compiled by trawling though the work my eldest brother had done on the Ancestry.com website. I am really grateful for his interest in genealogy. I also contacted distant relatives via Facebook, and got some information from my Mum. Armed with these pages of causes and dates of death and existing illnesses I marched confidently into the room. Impressed with the research data, the gorgeous red lips asked me if I was from a research background. I told the lips that I used to be a teacher and lecturer and I love to research. I thought I was just going to supply them with information about my family cancer tree today. Easy.
I was so naive.
I had not prepared for the level of emotional and intellectual drain this meeting would entail. The beautiful woman in front of me was full of information. But there was a deliberate tilt of her head which revealed a kind of pity to me. She obviously thought she knew where my journey was heading. Like she has access to a crystal ball or she has seen this journey many times before. Talking with the broken about their potential mutant genes as they are gripped by this disease, as they search for an explanation as to why they are afflicted. So I decided not to focus on the head tilt anymore.
After looking through the details of my family cancer history, there was discussion about gene faults that if found would put me at a higher risk of developing breast cancer in my other breast. Then they pre-empted a discussion that I might be having with my oncologist in weeks to come, this time about my ovaries. If I test positive for one of the BRCA 1/2 genes, breast cancer women under forty are advised to have their ovaries removed. There was also discussion about multiple potential gene faults merging to have created some crazy mutant genes that can cause young women under 40 to get breast cancer. I don’t really need to know about this. I can’t prevent what is done.
What does all of this mean?
The reality is that only 5 to 10 percent of tests come back positive for some genetic link. Many responsible genes and genetic mutations have not been discovered yet. Though there is certainly a chance that in 15 years researchers will have discovered more genes at work with this breast cancer disease, if genes are even a factor. It is such a complicated matter how diseases occur in some individuals and not others. The ‘nature versus nurture’ theorists are still pointing their fingers and arguing on the sidelines.
I am informed that my blood sample will be stored and will be used in the future by genetic researchers. I enthusiastically offered up litres of blood for this purpose and this drew some laughs from the Giant and the Beauty. One vial is enough. But I find this research to be positive. After all, this process is how the BRCA 1/2 gene faults were discovered and this has benefited many.
Today, genetic testing might assist some breast cancer women and their practitioners to make decisions about whether they will undergo particular treatments in favour of others. It is also a process high risk women (such as those with one or more close relatives having had breast cancer) might explore to assist them to make decisions to prevent breast and ovarian cancer from occurring. There are many women in Australia and around the world who have spent much of their lives worrying about the risk of getting this disease. There is a whole network of women supporting one another through a great organisation called Pink Hope. It can be found at http://www.pinkhope.org.au. These women cling to the results of their genetics tests. I feel quite guilty given I had never given breast cancer a thought and have been free of the worry these women have had to endure, and yet the disease found me anyway. Here I am, today, with a genetics counsellor talking about breast cancer genetics.
In my case, the decision has been made, given my cancer is multifocal and aggressive there will be a second mastectomy, so I don’t need the results of a genetic test to tell me what I should do. There will be post mastectomy radiotherapy and genetic testing is not a useful indicator for whether to do this. But it might clarify the ovarian issue down the track. If I am negative for BRCA 1/2, it is unlikely the ovaries will need to be removed. This is a really important decision, as removing ovaries prior to menopause can lead to a whole array of health issues in young women such as osteoporosis and heart disease. But if faced with having a BRCA 1/2 gene with a hormone receptor positive breast cancer and preventing ovarian cancer I know what I would chose.
After almost two hours of discussion about genetic testing, information, privacy issues, disclosures, pros and cons, ramifications of it moving forward, etc, I am clear that genetic testing will be a good thing for me and my immediate family, but I will talk at length with Mr Cool about this. I also like the idea that I am contributing to a research data bank.
There is just one small matter to be sorted. Before I can sign on the dotted line, I have to see what the ramifications on my existing life insurance policy are of genetic testing, as it can substantially alter or even void some policies. So I have to look into this before the signing and supplying of a blood sample. Some types of insurers don’t like the risk associated with someone who has tested positive for some genetic predisposition. Bastards! Luckily my ‘future self’ told me to take out a life insurance policy a year ago as I had no current coverage through my superannuation as a stay at home mum. I would be “up shit creek without a paddle” if I wanted to take out a new policy now. Thank you again future self.
Down the track, my family might like to know the results of this test. There is no urgency for any of them now. But if I have any genes responsible for this cancer, it might be beneficial for one of my brothers to be tested. If he has the same gene then as parents, they may impart such information to allow their children to make a decision to be tested when they are adults. Likewise, all of this applies to our own children, my cousins, and my cousins children. This is all irrelevant at the moment but it is worth giving some thought to future possibilities.
Genetic testing is a highly sensitive and deeply personal issue. It does have quite large ramifications for the future. People can use the knowledge about genetic predispositions in many ways. Some might live proactively and live a healthy lifestyle and be screened. Some might live in fear of developing a disease they have a gene mutation for. Some might chose a route of cowardly defeat and live a lifestyle detrimental to health as if they are saying “whats the point?” Some might not ever give their genetics a thought. Of course, there is also the possibility that one could have a genetic mutation for a particular disease and it is never activated in their lifetime. There are no guarantees with anything.
I was glad I had the opportunity to sit with the Giant and the Beauty for two hours. I look forward to my next meeting as it feels like I’m back in the dating game.