Imagine my surprise when I received a letter today that said “Your treating doctor requested that you be placed onto a surgical wait list to undergo BILATERAL EXCHANGE FROM EXPANDERS TO IMPLANTS”
Placed onto? What the fark???!!!!
The letter continued … “We aim to deliver the best and most timely care to all our patients as quickly as possible.”
Most timely? Quickly? Pfft.
I understand the issues with public health, I really do. But Pffft!
You see, I was PLACED on a surgical waiting list back on the 1st November 2013. True.
It’s been nearly three years since I had my first expander jammed in my chest. And 2.5 years since I met the second one. I was so appreciative of the work of my surgeons. They removed my cancer and gave me an instant chest. I went onto the surgical list a few months later. And there I have sat with these uncomfortable, lumpy, rotten things since.
For all of this time, its been too painful to lay on my stomach. So I’ve neglected visits to the chiropractor, the massage therapist, and bodyboarding with the kids.
I guess I’m supposed to feel lucky that I’m still alive and even need my reconstruction finished. There’s plenty who didn’t get this far. Plenty!
So after I mustered up enough strength to hide my disappointment at this letter and not get prematurely upset, I rang the hospital. Turns out, the lovely Elective Surgery Access Manager felt my pain and put me on hold.
When she returned to the telephone, she offered me an apology for having me wait on the phone so long. Then she gave me a Plastic Surgeon surgical consult date (I’ve had two of these already) and an implant exchange surgery date. I didn’t know what to say.
So I said “Wow! Thankyou so much!” or some similar drivel.
Now the question is, what will they look like when finished? I’ve spent so long in this body that doesn’t feel like my own anymore. My rock hard, contracted, scar effected mounds, with nipples that point in such grossly different directions will need a lot of work to look reasonable.
And what will be of the 28kgs I’ve gained through hormonal treatment and chemically induced menopause since these Asian sized expanders were inserted? At least they were in proportion when all of this cancer treatment lark started.
What I’m looking forward to most will be the delight for my children when they snuggle and discover my chest is no longer like hugging a concrete freeway bollard. That will be the best!
Happy 41st Birthday to me. It would appear I’m (actually) having exchange surgery!
I received a pap smear reminder in the mail a few weeks back. It had been three years since my last smear. Regular pap smears every two years reduce the risk of cervical cancer so they say, especially if you are too old to have received the cervical cancer vaccine. Whatevs. I’ve always loathed that word ‘smear’. I don’t know why? It rhymes with many other excellent words; dear, beer, career, cheer…
What’s the point of having my cervix scraped to check for abnormal cells when I’ve already had cancer and all the trimming and trappings of treatment; amputated breasts, gouged out lymph nodes, chemo poison, radiation burn, ovaries shut down, the humiliation of permanent hairloss, and all of the ongoing health issues I have from Zolodex and Tamoxifen medications, blah, blah, blah. I’m alive. I’m lucky. Surely I couldn’t get a second primary cancer?
Could I even face the scrape? Can I be bothered anymore? Why am I so despondant?
Then began a distant chant. At first it was faint. It sounded was like it was coming from the new mosque that hasn’t yet been built in our town but is warmly anticipated. Or perhaps it was from some far off place further up the gully. “Face the scrape! Face the scrape! Face the scrape!”… the chanting got louder and louder.
Then one restless night at 3am this chanting woke me. To be honest, I actually wake every night at 3:00am. Not a moment before, not a second after. I’ve dubbed this hour MI hour, which stands for “menopausal insomnia” hour. This is the hour that menopausal women all over the world open their eyes, throw off the covers because they are hot and sweaty and curse the Gods and get as far away from their partner as they can.
Anyhow, in the dead of this particular night I turned on my iPhone and read this article. “More cancer patients are hearing the words: ‘you have cancer – again!‘” (NBCnews.com, Aug, 24th, 2015). This is the story of the very lovely Judith Bernstein of suburban Philadelphia. Judith who has eaten more shit sandwiches in her life than anyone I know. Judith has had eight different types of cancer over the last two decades, all treated successfully.
Get the fuck out! EIGHT DIFFERENT CANCERS!
At one point Judy thought she had cancer in her little finger. Which is totes normal for any one-time cancer survivor. But eight times?!?!? Judy, Judy, Judy. Bless you Judy!
The article went on to highlight another tantalizing tit bit… “Nearly 1 in 5 new cases (of cancer) in the U.S. now involve someone who has had the disease before.”
So armed with this knowledge and the seemingly endless “Face the scrape” chanting, the very next day I made my appointment and later faced my fear of the scrape head on.
My excellent womens health doctor had a bucket load of information to catch up on regarding my health. Cancer – check. Ovaries turned off – check. Medications – check. Mental health – check. She is always incredibly thorough and I hadn’t seen her since the lump in my breast was diagnosed as cancer in January 2013.
After our lengthy discussion, I went behind the curtain and removed the bottom half of my attire. I lay quietly on the bed with knees falling gently with feet remaining together. A white blanket gave me some modesty. Women the world over know the drill.
Turns out the scrape is now more like a semi-automatic gun which rotates and bangs tiny holes into your cervix. True. Then my WH doc said, “Oh I can see the walls of your vagina are thinning and dry from your early menopause.”
Excellent. No really, that’s great!
That my friends, was the day my vagina got old. T’was a perfect spring day in our town. I have marked it in my calendar. I might even add it to Facebook as a life event. And the Queen might send it a birthday card when it turns one hundred. Which might not be too far away. I’m also assuming that there will be no more movie roles offered to my vagina either now that it is deemed ‘old’. <Insert sad face>
Now I really can’t wait for the narrative from my first colonoscopy.
P.S last months bone scan was clear. Sorry, I forgot to come and tell you the good news. I’m still having some follow up tests.
As a family, we are absolutely blessed with a huge team of supportive people from all walks of our lives and this network grows and grows; friends, family, work colleagues, running club, school, kinder, long term friends and new acquaintances. I am particularly grateful for this “team” of ours, especially at this time of year as Christmas approaches when it’s easy to reflect on and appreciate the great relationships we have.
Cancer points out in both a brutal and beautiful fashion who you can count as on your team. People help in any way they can, in different capacities with both practical and emotional support to offer. Sometimes those that you would expect to be of support aren’t able to for many reasons, and that is okay. But I am unlikely to ever forget the love and support we received last year, and still receive. I am richer for this lesson.
Through the horror that was 2013, Radical Man (self anointed) and another mutual friend of ours called Sharpie and their families, really astounded me with their support. I had only met Radical Man and his family about four years ago. And yet, together, Radical Man, Sharpie and myself carry on like siblings. We have joked that Radical Man is the oldest brother, Sharpie is the middle sister, and I am the baby.
There is loads of facetiousness in our interactions and that is perhaps why I feel so close to them. My own family and siblings thrived on facetiousness and sarcasm through our growing up years. So Radical Man and Sharpie have plonked themselves into the part of my brain and heart where the deep connections with people are kept.
They could turn up at my house anytime and make themselves at home on my sofa and it wouldn’t be strange, or they could eat the last of our hidden chocolate stash, or borrow our things and break them in an annoying sibling type fashion and that would be fine by me.
Throughout my ten months of active treatment when I was wallowing in the depths of Struggle City, my phone would ‘ding’ with a new text message. It would very frequently be Radical Man or Sharpie with something to say, sometimes stupid; sometimes meaningful; but always appreciated.
When I came home from hospital after having my first mastectomy and axilla clearance with surgical drains, Sharpie texted “be prepared for a front door deposit of an edible kind” and Radical Man would text “food at your door”. And without having to type any more words than necessary, the gourmet food would magically appear; fresh baked enchiladas; the best Italian meatballs with napoli sauce that was garnished with fresh basil; the most exquisite Massaman curry complete with toasted almonds and coriander; the heartiest family lasagne; a Sharpie favourite Chow mein, warm cookies freshly out of the oven; or an extra batch of cookie dough for the freezer so they could be baked for our kids again down the track.
My children would say… “Mum, that was the best spaghetti I’ve ever had. Even better than yours and Grandad’s”.
When I was halfway through chemo, ‘ding’ went my phone… “I don’t want thanks”, Radical Man texted… “But please tell me if you can’t be bothered cooking, as I’m not a good guesser”.
Along with all of the incredible meals we gratefully devoured, came more and more of the supportive texts, and those ridiculous Facebook message stickers, little out of the blue silly symbols; big thumbs and predominately smiling faces that are rather annoyingly easy to send to someone by mistake. Those would later become a bit of an in-joke between us.
Then Radical Man would message “We are on your Team!”
At the time I would laugh and shake my head. That Radical Man and his family are hilarious. Yet the “We are on your team!” messages continued to come. “We are on your team! Sounds like you need some lasagne” texted Radical Man.
There was also the time Radical Man sent me a picture he took of the shoes of a colleague on a course he was attending. Ever so thoughtful to feed my penchant for photographing the shoes of my doctors, I was delighted!
In my haste to start overcoming the impacts of my cancer treatment, I signed up for a half Ironman Triathlon. It had been a long term goal I had been working towards through running and doing some sprint distance triathlons. It was while having the best fitness and body weight I had achieved in years, that I found my lump and it was all down hill from there.
In February this year, Radical Man and I, along with another mate of his, sat glued to our computer screens, adrenaline filled and poised with trigger fingers to gain entry into an event we thought might sell out in minutes. With a blend of absolute terror and excitement we gained entry into a Half Ironman Triathlon which involves a 1.9km swim, 90km bike ride, and a 21.1km (half marathon) run. We immediately messaged “Can’t quite believe we just did that!” And “I’m still in shock!”
There were well meaning people who suggested I was being really unrealistic. That I was pushing myself too hard. But Radical Man never did. We believed that each other could achieve it and there was nine months of training to pull it together for us.
Then rolled round June and it became pretty clear to me that in light of my very slow, post treatment, fitness progress and my continued pelvic health issues thanks to Tamoxifen, I would not be able to pull it off this year. So I had to withdraw from the event, as did Radical Man’s other mate, and this left just RM to go it alone.
Late in November, my family and I took a 1700 km road trip to see Radical Man complete his first half ironman. It was a no brainer… ’cause “We are on his team”.
Congrats to Radical Man on his achievement and thanks for continuing to inspire me to persist at the times when I feel like giving up. Those stickers and messages of support meant more than he will ever know, and watching him run into the finish chute and stop to give Mrs Radical Man a big smooch brought a tear to my eyes. Like me, Mrs Radical Man also picked a good one! To be there cheering Rad Man on with twenty or so of his friends and family all dressed in orange made this an incredible weekend.
As Radical Man himself would say… “How lucky are we?”
Late on Friday I met with my GP to receive the ultrasound results of the lovely lady lumps that have cropped up near my mastectomy incision scar from 22 months ago. The last time I had a lump looked at by a medical professional, it turned out to be what Scorchy from the blog “The Sarcastic Boob” refers to as the “Death Star” from Star Wars, an ominous moon-sized Imperial military battlestation armed with a planet-destroying super laser. Love you Scorchy!
For a week I’ve been battling my Dread Dragon, wondering if the lump was going to announce itself as some insidious grade three cancer cells clumping together again, waiting to strike like the Death Star. I have been shaky and ill at the mere thought of having to get a biopsy needle stuck into it.
So, while my kids happily played with a small box of toys in the corner of the GP’s office, I heard the words “scar tissue”. My lovely little lumps ARE NOT screaming CANCER on the ultrasound!
It’s the first time in my life I have actually done a fist pump in a doctors office. Well, three consecutive fist pumps after I was handed and read the report that said…
“There is a tiny equivocal 6 x 3mm oval broad lesion of the deep subcutaneous tissues that is poorly defined with some smooth indentation of the underlying pectoralis muscle. This is thought to represent scar tissue. No suspicious lesion is seen.”
So there it is! Just a lump of junk that I’ve got my eye on. I’m still on guard scanning the galaxy though, as the omnipresent threat of the breast cancer “Death Star” analogy is never, ever far from my thoughts.
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.
Everything comes down to attitude. It’s the only thing anyone has any control over in their life. The rest is unpredictable. Health, relationships, circumstances. A positive outlook or attitude benefits everyone. So this is my positive take on today in point form.
Brushing your hair, pulling up your undies or taking a t-shirt off are incredibly difficult after armpit and breast surgery. I am learning to graciously accept the help of others in situations like this. So if you see me walking naked in the street (except for my t-shirt) please stop and offer assistance. Just gently and very slowly lift it over my head. Don’t be concerned about the drain coming from my chest and the bag of blood. Many thanks in advance.
The landscape driving through the granite country south of our awesome city and the apple growing region always puts on a spectacular display, with sunlight and clouds stretching over rolling hills which are either yellow or green depending on the season. I love this landscape.
All the time in cars we have spent in recent weeks without our children has been good for our relationship and for strengthening our communication. It is great to connect with my partner after many weeks of us just treading water. Little people do their darnedest to make it all about them (and rightfully so).
Melbourne has some beautiful parks and streetscapes and it is nice to be visiting her frequently after living regionally for fifteen years.
It is nice to see members of my medical team again. I like them, so much so, that I would arrange a dinner party if I wasn’t just another one of their 3000 patients they see every day. I could potentially get depressed, more from the finish of treatment than from having had cancer, as they won’t be a regular feature in my life anymore. So I’ve decided to throw dinner parties for random strangers just to fill this void.
Once you go through an experience of multiple surgical treatments for something like breast cancer, (and in a similar way the exposure and dignity loss accumulated from the experience of childbirth), pulling the curtain shut for countless adults at breast inspection times seems really unnecessary. It’s not like they haven’t seen my breasts before. Don’t worry, you won’t see me topless on St Kilda beach anytime soon (unless the implants look amazing).
My husband is really hot. The surgeon took a double take at his gorgeous, cyclist shaved, brown legs today and made comment on them. I pretended I didn’t notice. Unfortunately he did. As if I haven’t seen him admiring his legs enough!
I am really good at talking to the surgeon and taking pictures of her shoes at the same time. See…
After the initial cancer diagnosis and the crazy shock of it, results are just more of the same. Good and bad. They really are just results. A bit more news. I’m a bit numb to it. Even when there is good in it. This indifference is great as it stops me obsessing and stressing unnecessarily.
Why is the hospital cafe food full of the same stuff that is sold at airports? Every time we walk into this hospital I’m looking for a check in gate and wondering where I’ve put my boarding pass.
I might be a candidate to participate in an international trial called “The Supremo Trial” to see if there are any benefits of post mastectomy radiotherapy on breast cancer patients with aggressive cancer. I love it when they name these things after pizza.
I’m keeping the nipple so far. There was no cancer behind it. So that is one less body part to remove. Yay! Although I shouldn’t be too premature with my celebrations, as with the trauma from surgery my nipple may be at risk of tissue necrosis where the tissue dies from lack of oxygen. I have always wanted to visit Antarctica. So I’m viewing this as a kind of ode to frostbite and Shackleton. But so far so good. Breathe nipple, breathe!
If it does turn black, surgeons will remove it and it could be replaced with a nipple tattoo. (Cue music for Embarrassing Bodies, Episode 54) I’ve never liked the idea of tattoos. But if I have to have one, a nipple sounds way cooler than a tribal tattoo, a dolphin or misspelling my husbands name. Imagine getting a nipple tattoo on your bicep? Now that would be super!
A second mastectomy of breast number two, and another sentinel node biopsy of the other armpit is now a given. This will happen post chemo later in the year. Oh joy! The things a mother has to do to get her kids a tour around a fire-station! Hopefully the results of that won’t mean more chemo in 2014. Imagine the jokes I’ll have to create if I have to go through all of this a second time!
The removed breast revealed more patches of pre cancer changes (DCIS), not including the original invasive ductal carcinoma tumour (IDC) and the ductal carinoma in situ (DCIS) that was removed in the first lumpectomy operation. All of these acronyms make it sound like an episode of NCIS. It is hard for me to fathom all of this cancer activity in the space of my tiny 148 grams of breast tissue. On the bright side, at least with a double mastectomy, I will at some point have a set of matching breasts. It will be nice to have some 18 year old looking, perky body parts after all these years.
I think I’m falling in love with a girl called Endone.
‘Chemo’ and ‘dreamo’ rhyme. My chemotherapy might go for 6 months and this is so much better than 10 months! Ain’t no chemo gonna ruin my Christmas lunch. It will be of the ‘Third-generation’ variety which is a bit more cutting edge they tell me. I need some time to recover from these two February surgeries. It will start in roughly three weeks time. This means it won’t start till after the kids and my birthdays. Winner winner chicken dinner! So baldness might not be a feature till April or May now. ‘Bout time I had a new hairstyle anyway. We worked out in 37 years I have only been to a hairdresser 7 times.
The familial/genetics clinic is booked to help search for any potential mutant DNA and troubled genes. This excites me as I love family tree research!
In two operations there have now been a total of 21 nodes removed. Only 1 of these was cancerous. Which is great news but there are no guarantees. Breast cancer is a sneaky bastard and plucks off unsuspecting women at random, even with small tumours and no nodal involvement. Indiscriminate and unpredictable in nature. But in spite of that, 1 node out of 21 is really the BEST news we could have received today!
The Exudrain lady is unfortunately returning home to the country with me today. So a few more days of carting her around. Never mind, it is quite a nice floral bag she sits in. The glances at the shops have been interesting.
There were no tears today. Could have worn mascara after all!
People have offered so much practical and emotional support it’s awesome! We love ‘youse’ all (said in Australian bogan voice)!
There was definitely a silver lining on that cloud I photographed this morning. I just had to look closely enough to see it.
Don’t expect to think you know where you are going if you get cancer. One minute the path ahead is clear and the route is well defined. The next, the ‘Dread Dragon’ returns. So today’s lesson for me is to float with the current. Expect changes to happen as they most certainly will.
Today was supposed to be a day of pottering around, bush kinder drop offs and pickups, a nice lunch somewhere, some household cleaning, some packing for tomorrow’s big day back in the big smoke with the breast surgeon, the bearded nurses and the plastic surgeon with a box of ‘Asian’ sized, left sided implants.
At 11:30am while picking up my son from kinder the phone rings and it is my surgeon who I have begun dreaming about and she says “Hi Lise, how are you recovering? How is my breast going?”
I’m not sure when ‘my’ breast became ‘her’ breast, but she is quite welcome to it. I’ll even throw in the other for good measure! So I said “I’m fine. I ran a 10km fun run yesterday.”
“What you ran a 10km race? Why?”
She wasn’t really interested in my response because she quickly moved onto her next question. Surgeons are very busy people you know. But if I had time I might have replied something along the lines that I needed to feel like I can do this, I need to feel strong and fit, I need to feel like I’m not a cancer patient. I have seen and now experienced firsthand how a cancer diagnosis effects the psych. It hits you like a lightening bolt and brings on symptoms of anxiety, nausea, panic, that I would not wish on my worst enemy. It then sneaks behind you and makes you feel weak and sick. I had to be reminded that I was not dieing in those early weeks because I was acting like I was already stage IV. So why wouldn’t I run a 10km fun run with my beautiful friends when my surgical scars were healing nicely?
“What time did you do it in?” (She must be a runner to ask that question). “Oh wow! And you’re only, let me see, 12 days post lumpectomy”. At this point she put her hand over the phone and announced to another colleague in the room that I ran a 10km race yesterday. “Well Lisa you are shaping up to be my best patient yet! I suppose it doesn’t matter how (your/my/our) breast is, as its coming off isn’t it!”
At this point I felt a little chuffed by the 1400kms of running and 300kms of walking to the shops I had en-massed on Runkeeper since April last year.
And then she continued… “Look I’m also calling to let you know that the team met again this morning and we would like to stage your cancer today. So you have to head to two different hospitals immediately in your city to have a CT abdominal/chest scan and a full bone scan. Can you get to hospital in 30 minutes?
“This wasn’t mentioned in our Thursday consult” I said.
“Look, you have one node positive so far, and normally our hospital protocol is to only stage prior to surgery if there is at least three nodes positive. But we don’t want you to have all the treatment and then discover that there is possible metastases elsewhere or another primary cancer lurking. If there are more masses in your body, you’ll need chemotherapy prior to surgery. So surgery tomorrow could be cancelled. I’m not operating on you unless I’m confident”.
I hung up the call and proceeded to walk across to the bush kinder pickup point towards the waiting parents and children. It was here that the Dread Dragon opened his wings and blew flames and embers across the bush kinder carpark almost setting fire to the forest. At that point I saw my friend Catherine and I broke down in tears. Then I composed myself and I was right to go. Dropping off kids with husband, getting driven to hospital, picked up husband and children, getting to next scan at different location for more nuclear dye injections, then picked up and dropped off husband back at work, returned home with children, waited for dye to absorb into my bones, waited for the best Nanna in the world to come to mind children and finally returned back to hospital for scan number two. There was more nuclear medicine, more radioactive substances, more radiation and a litre of contrast to drink for the CT.
With all the time on scan beds today, laying inside two large plastic nuclear donuts, with the whirring and the smell of Kodak processing in the air, my mind had plenty of time to analyse the possible reasons for staging me one day before surgery as normally it happens at least a week before and a lot of the time staging is not required because the nodes tell a clear story. What if ‘the team’ where just being precautionary, that would be excellent! But what if I had two primary cancers at the same time? Or what if it is metastatic breast cancer. Could I be so unlucky? There are no guarantees.
Such news fills you with the memory of every little nerve fibre pain that has tingled or fired in your body in recent times. What if that time I put five beetroots, two raw squash, a tablespoon of spiralina and some chia seeds into my juice and got stomach pain was actually stomach cancer? That headache last week, a brain tumour? A change of plans can put you into a such a tizz.
Luckily, my CT scan experience provided me with enough entertainment to distract me from such thoughts. Contrast is injected into a vein to “highlight” internal organs such as the liver, kidneys, and pancreas and it helps to detect and characterise tumours. After a few seconds the contrast reached my chest and heart and I felt a warm fuzzy feeling. Then I got a metallic taste in my mouth. But the Pièce de résistance is that several minutes later, the warm fuzzy feeling reaches the nether regions and it actually feels like you have wet your pants and are then laying in it. I have read on some of the breast cancer forums that some women refer to this as the ‘ants in pants’ effect. Some even brag about climaxing at this point. Not me, I just felt like I weed myself.
Tonight I get a phone call from a friend to bring me the terrible news that a wonderful, vivacious colleague who used to teach art at a school I taught at, has passed away today, her battle with breast cancer began around eight or so years ago. Timing is everything.
So now, all thoughts of diagnostic results have been set aside. I’ve put the Dread Dragon to sleep outside with the dogs. I have had a laugh tonight on the phone and texts with people who are important to me. I am back off to the big smoke tomorrow for my mastectomy surgery and full axillary clearance as planned. Or maybe not!
My question is, of all the flavours in the world, why is it that the CT contrast drink is flavoured aniseed? What the hell were they thinking? It’s like something I drank out of a bucket with a garden hose, Corfu, Greek Islands, circa 1996.