I gave up on my childhood friend Melissa Baker back in October 2014. I had driven a few hundred kilometres to see her face to face after some worrying online conversations.
Mel was diagnosed with Hodgkin’s Lymphoma exactly six months after my breast cancer diagnosis back in 2013 and began writing the blog I Got The Good Cancer. We referred to ourselves in jest as Kylie Minogue and Deltra Goodrem, Australian popstars that shared our cancers. We joked that there was something toxic in the school playground we shared all those years ago.
When I arrived at her home and walked up the stairs to her front door, I glimpsed her through the window. Her skeletal frame took my breath away. With the spark gone from her eyes and plagued with respiratory infection after infection, Mel had no immune system and no further treatment options offered to her. I honestly started to grieve for her demise.
This 39 year old, brilliant forensic pathologist and single mum to two beautiful kids had so, so much left to contribute.
I cried all the way to her house and all the way home from that visit. By the time I reached my city, my eyes were so swollen I could hardly see the road ahead.
When Mel’s treatment team gave up on her she sacked them and moved to another Melbourne hospital. Her new hematologist was at the forefront of a melanoma drug trial to treat lymphoma and Mel ensured she was the first Australian on that trial.
Not content with this last attempt to save herself, she has worked tirelessly to advocate for other lymphoma patients who are in the same dire position she was. She helped recruit and connect patients to the trial who had been offered no hope, and has given them much more time with their families. She no doubt will one day be credited with being the integral link that alongside the drug and doctors, saved their lives.
Two years on, Mel is in remission, and as she approaches the last eight months of the trial. she doesn’t know what the future holds beyond it. The drug is so new no one is able to yet talk of it as curative.
Mel is unbeleiveably relentless in her quest to raise enough money to fund the first specialist lymphoma nurse for Australia’s fifth most common cancer in which 5000 new Australians will be diagnosed with the next 12 months. By comparison, The McGrath Foundation for breast cancer currently has 110 nurses nationally supporting patients and their families.
I’d like to sincerely apologise to my friend for prematurely losing hope. The lesson here is there is ALWAYS hope.
Love and hope always Mel,
Mel will host a fundraising event dubbed “Not Your Average Trivia Night” at Frankston RSL’s Simpson Room on Friday, November 11, from 7pm. The event includes live music, three course meal, raffles, silent auctions and more. Tickets are $75.
For details, email firstname.lastname@example.org
Read all about Mel’s courageous story in print here.
Thought I’d pop by and say hello as it’s been a while. I realised today that I finished active breast cancer treatment three years ago. What a ride!
I have thought a lot about the end of my world since my diagnosis. My ‘el fin del mundo‘ which is Spanish for ‘world’s end’, since 30 percent of all breast cancer patients will die of the disease no matter what their stage was at diagnosis or how successful treatment for their early breast cancer appeared to be.
Depression and post treatment anxiety are a part of my life now which I regularly need treatment for. And I’m continuing with the anti-cancer drugs for another seven years despite the hideous side effects I live with. The facial hair is coming along swimmingly.
To think, if I hadn’t had my life saved by conventional treatment, I would never have lived to experience the wonder of Snapchat filters, and that my friends would have been an absolute travesty!
I’m leaving my kids and Mr Cool in three weeks when I depart for Argentina. I’m taking a side-trip to South Georgia Island and a week of zodiac shore visits to the world’s seventh continent, Antarctica. Which truly is end of the world.
Visiting Antarctica has been a dream I’ve had since I was seven. I’d spend hours under lamplight looking at maps of Antarctica in atlases. Intrigued by the flux of ice shore lines and relishing the stories of the battle of explorers to be the first there or the earliest to understand her.
This trip will inspire me in so many ways and contribute to my future creative output. I will paint, write and soak in as much as I can about the ecology and the of these frozen landscapes.
Here’s to looking forward and living forward. Peace be with you amigos. x
A few weeks back, Mr Cool and I went to an informative session titled “Managing Kids Anger” and it taught us a great deal about what’s going on in our household at the moment and who is actually in the driver’s seat of our big red angry bus.
For a long time, everyone in my house has been angry. The dogs. Mr Cool. The kids. Even the mailman seems to be slamming the flap on our letterbox with some extra force.
Like most households with young children, there are many stresses that lead to angry outbursts, such as sibling rivalry, being told no, being tired, having a hard day at school, not being listened too. There are many presentations of anger in our house; slamming doors, stomping, hitting, yelling, swearing, breaking toys, crying or seeking to be alone. And that’s just me!
Some of this anger is just our kids expressing themselves when they feel there is has been an injustice and when they can’t find the words to express it.
But there are signs in both our children of deeper frustrations, fears, and worries that cancer-less households don’t experience. So I’m convinced that a fair chunk of this anger is the impact of me having been diagnosed with cancer when my children were just 1 & 4 years old.
A large part of our children’s childhood has been immersed in a deep pool of cancery poop and they are angry about it and so are Mr Cool and I. So I’ve coined a new term for survivors around the world, a term that they might find helpful, that might help them frame what goes on.
Cancer and angry = Cangry
You know, like when hunger and angry joined together and became hangry, which describes anger that is associated with being hungry.
Three and a half years on from my breast cancer diagnosis, I believe cangry is absolutely a real thing and I reckon it deserves a place in the dictionary. So here goes…
verb, can·ger \ˈcaŋ-gər\ (cancer related anger) Canger is a general word that applies to many different levels of emotion that may or may not be shown because of a cancer diagnosis. <She kept her canger inside herself>.
noun, can·gry\ caŋ-gry\ a strong feeling of displeasure and belligerence aroused by a wrong; wrath; ire from the effect of cancer.
transitive verb : to make cangry <she was cangered by the diagnosis>
intransitive verb : to become cangry <I canger with little provocation>
adjective : cangerless\-ləs\
I wasn’t cangry when I went through active cancer treatment. I never felt sorry for myself about the diagnosis. I never asked “why did this happen to me?” I simply settled on “why not me?”
It has taken 2 to 3.5 years after diagnosis for my canger to emerge. It made itself known once the dust settled and the
wreckage shitty legacy of cancer came into view.
Three and a half years on, I’m cancer free. But I’m still without hair and I’m 30kgs overweight. I have constant pain in my hands, forearms, feet and ankles from the medications I take. I suffer from insomnia. Depression has a constant seat at my table and sometimes, I feel that the anti-cancer medications are both keeping me alive and killing me at the same time. And I am cangry about all this. But it doesn’t just knock at me.
Just this morning, Mr Cool pulled up at the lights on his road bike. A ninety-five year old lady crossed at the intersection with her shopping trolley and a durry hanging out of her mouth and her packet of Horizon 50’s balancing on the top. Mr Cool thought why cancer for my wife at thirty-seven? Why our kids? Why our marriage? His canger simmers away and bubbles to the surface often, robbing us elements of our happiness.
Something as innocuous as listening to my girlfriends notice each other’s new hairstyle. BAM! Cangry! This “canger” (cancer related anger) can present itself in a plethora of ways. The feelings are broad and can appear instantaneously…angry, annoyed, bitter, cross, disturbed, explosive, frustrated, grumpy, hateful, hopeless, imposed upon, infuriated, irate, irritated, jealous, mad, obsessed, ouraged, raging, restless, trapped.
My friends, it’s okay to be cangry. For canger is a normal emotion for anyone who has been traumatised and transformed by a cancer diagnosis; their own or someone they care about.
It’s just really important to recognise it and introduce strategies for dealing with it. Don’t let it spew out into your relationships and poison your loved ones. Tackle it head on and stop it from persisting for years and impeding your happiness.
Let’s not allow cancer to take any more from us than it already has. xxx
Helping yourself or your children to manage their canger.
Listen to the cangry person with your whole body
- stop what you are doing
- get down to the persons level
- look at the person
- speak using a calm voice
Put your/your childs feelings of canger into words.
- “It looks like you are feeling scared/ angry/ sad about cancer”.
- “You sound pretty worried/cross”
Empathise with the cangry person
- Cancer is a horrible thing. It’s not fair. It just happens.
- If that happened to me, I’d feel cangry too.
- I’m always here for you to talk about your canger.
Help the cangry person solve their problems.
- What could you do about that?
- What could you do when cangry happens again?
- How can we make the best of this shitty situation?
- Can we focus on today instead of worrying about the future?
Things I find helpful to diffuse canger
- Listen to music
- deep abdominal breathing
- have a shower
- mindfullness meditation
- Use humour (cause lets face it, without humour the world is cray cray)
- Talk with other people going though it.
- Talk to a GP or a counseller/psychologist who specialises in trauma and grief.
Three years ago I asked my plastic surgeon if I could keep my tissue expanders when they were to be removed. He laughed, and discreetly filed that request next to a lot of the other stupid things I asked in our brief consults.
I’d planned to keep them and use them as paper weights, cause let’s face it, one can never have enough paper weights. I’d also invisaged I’d get them out at parties, or let the kids take them to show and tell. Can you imagine? Oh the horror!
Last night, as I rolled into theatre, I thought I’d revisit this request. My plastic surgeon mumbled something about infectious diseases and hospital policy.
Then grasping at straws I asked… “Would you photograph them on your iPhone?”
I waited for the “No!”, but to my delight he replied… “Sure. Not me, but I’ll get someone else to do it”.
I didn’t expect for him to follow through with his promise. Theatres are serious places with very rigid procedures.
As I drifted off to sleep under the cloak of Fentanyl and anesthesia pulsing into my veins in the theatre I’d already had three surgeries in, I remembered fondly the original bearded nurses I met back January 2013, and the familiarity of the weird 70’s vinyl looking wallpaper. I briefly contemplated how far I had come from the fear and dread of three years ago. Then before I knew it I was out like a light.
I don’t fear the cancer returning now. Because I’ve played that thought over and over in my mind a million times. It’s almost boring to think about. If the cancer comes back one day, so be it. There is no rhyme nor reason to who develops mets. Despite our best treatments and people’s health status at diagnosis, it just happens. Shit happens.
I’ve seen a lot of cancer in recent years. The worst of the suffering and the best of the love and compassion that comes. How profound and utterly terrible the disease can be at the same time. With four to a room at this hospital, you get to meet people at varies stages and types of cancer. You see a lot of cancery crap.
I will never forget the time an emaciated man laid opposite me when I had my first mastectomy. He had stage four bowel cancer and he looked and sounded like my own Dad in his own late stages of cancer. That was really confronting and I found myself having to escape the room and walk the halls of the small ward, carrying my surgical drains full of blood to get some separation from such a confronting association.
Then there was that lovely lady who I chatted quietly with through the depths of the nights after my second mastectomy. We spoke quietly about our children, careers and travels. There was no discussion of death despite it being the white elephant in the room. And in the mornings she conversed with the doctors and nurses so cheerfully and with such positivity, despite having endured two primary cancers. She was now facing her imminent death from the second. They gathered round her listening to her stories, almost vigil like. I was taken aback when a doctors voice waivered when discussing her predicament. In the whole week I was there, no family visited her.
It’s hard to be an early stage cancer patient and be present while all these devastating and heartbreaking conversations occur around you. Despite ones best intentions at privacy. The guilt is huge. Why am I okay?
Take for example witnessing the desperate play that happens on a daily basis in cancer wards, when nutritionists visit to try to make a difference to patients who are very clearly wasting away as their disease grips them so tightly. Or the look on family members faces when they visit and see their loved ones fading. Such heartbreak!
To think, it could be me one day? Or maybe not.
The new hospital will be set up with single patient suites which will avoid these confronting moments. But in a way, patients might miss out on the chance to share and connect over what they know of their disease. These moments in the middle of the night. Where sharing a room makes the experience less lonely.
Last night, my plastic surgeon did his best to make me feel more ‘normal’. But it’s been no easy feat.
Back in February 2013 my cancer side tissue expander began the process of contracting into my chest after a nurse accidentally closed one of my drains the night after surgery. That begun the inflammation and scarring that would form a capsule around the tissue expander and compress it. Radiotherapy later in the year further exacerbated this.
The plastics surgical team worked hard to cut out the scar capsule and try and restore the shape of my chest. As a result what should have been a simple “exchange” surgery from expanders to implants, has meant more trauma than anticipated.
I have surgical drains again and will have to stay in another night because the drain output hasn’t slown down enough. It feels like I’ve had a third mastectomy pain wise. The other side, is peachey creamy.
The wonky 2 o’clock and 8 0’clock nipples I’ve written about many times have almost moved to 3 o’clock and 9 o’clock. Down the track when my new teardrop implants settle in to my body, my plastics doc may look at some corrective procedures which may include injecting fat from my stomach into the radiated side. Apparently the stem cells in it can improve radiated skin so that it resembles baby skin. Remarkable!
My plastic surgeon visited me late this arvo. He came good with his promise and came to show me the images he had someone take.
So here they are… these expanders got carried around inside me for three years. They went to Indonesia and Hawaii and they weren’t used to smuggle drugs. There was lots of pain and not a whole lot of love for them. But I’m glad they are finally out of me.
Home tomorrow if all goes well to celebrate my kids birthday and Mr Cool and my wedding anniversary.
To end on a silly note to celebrate the completion of this surgery and the ridiculous nature of what me and my breasts have been through, here’s a lame tribute to Benny Hill.
My Dad loved Benny Hill. Rest in peace Dad!
Tomorrow is my double exchange surgery. One thousand, one hundred and thirty three days after my first mastectomy. Finally.
Tomorrow has the weight of three years of expectation behind it.
I’m at sixes and sevens. Not sure how to feel, not sure what to expect.
Im scared. I’m scarred. My mind is scattered.
How will I look when I wake? Will I have surgical drains? How long till I can drive a car? I forgot all the details.
How long till I can hug my kids and my husband properly. Like one of those hugs where you squeeze so tight and don’t let go. Where it feels like two people might just possibly melt into one.
Will I be able to move forward from this breast cancer world I’ve been immersed in for three years and two months?
What would happen if I give myself permission to let go of this whole journey and try and forget about all this?
This will be surgery number five. It won’t be the last if I want to correct my disfigured breasts and nipples. What will come of the sixth? Will there be a seventh?
I’m a physical and mental mess today. See you on the other side of it.
“I can’t believe it’s taken so long to get to this point!” said my plastic surgeon as I entered the big smoke hospital consult room this morning.
“Oh well, I’m still alive!” I replied.
“You are awfully cheery about this.”
“Yes cheery today, but there’s been plenty of frustration too.” I sat down.
Three years ago he inserted the first tissue expander into my chest immediately after my breast surgeon completed my mastectomy.
Way back then he wore a tie with a black and white feathered pattern that matched his facial hair. Six months later, with my second mastectomy, I missed his tie because he was already in his surgical scrubs when he came to mark me up with purple texta.
He shook his head and said softly “Just ridiculous!” as he opened up my file.
He went on with some sort of attempt to explain what had transpired…”it’s all left up to the bean counters you see! Category three should take up to twelve months, but there isn’t the same consequences for not meeting category three targets that there are for say category one and two. We’ve got patients with serious disease and they should be able to live out the final years of their lives feeling as normal as possible!”
The frustration at the system is thick all round.
“Okay, So what am I going to do with you? ” He scratched his head.
I take off my shirt, roll down my tank top to my navel and sit on the bed bare chested.
I’ve done this so many times it’s like I’m just being asked to simply take a seat.
“Hmmm, can I take a photo?”
“Sure!” I replied.
He reached back to the desk and picked up his iPhone and snapped a picture of both expanders. (I wanted to write breasts, but they are nothing like breasts). I smiled as if I was posing for a headshot.
“Can I take a photo of your tie?” I asked. “I love it!”
“Thanks! I got it from Russia” he said.
The passage of time has done damage to his work. By damage he means my road train weight gain, the lack of symmetry, the capsular contraction of the first expander and the poor blood supply to the radiated side.
He starts to formulate the plan…
“I’ll need to hack away at the capsule that’s formed. I don’t want to take the front off it though cause your skin is thin. So I’ll hack away at the back of the capsule and the other scarring that has formed around the original incision sites and try and free it up the a bit. How does that sound?”
Anyone who thinks this is a cosmetic boob job is an idiot. Mastectomies and radiotherapy are no picnic. The body is left tight and sore. There is scarring and fibrosis. There are lumps and tenderness and the nerve pain and pulling are a constant reminder of the trauma of having body parts amputated. Add to that the surgical clearance of all the nodes from your armpit.
This lack of any pleasant sensation from my chest weighs me down at times. The sensations are numb and painful at the same time. How is that even possible?
“What about the 2 o’clock and the 8 o’clock nipples? Can they be moved?” I inquire.
He is straight to the point. “Look, I can’t do anything about the nipples at this stage. Better to complete the double exchange and then see what we are left with. See what we can do down the track when it all settles.”
When he suggested he could probably get 200-300 cc sized teardrop shaped implants in my chest I nearly fell off the chair. I’m happy with small ones thanks.
In the beginning I had a minuscule 142 grams of breast tissue removed. There wasn’t much put back in. The one and only time he tried to expand me he put 80mls in, but had to take 20ml out because it was just too painful.
He says he may also do some sculpting around my chest to remove some body fat that wasn’t there when all of this cancer lark began.
I wont touch your stomach though!
“Drats!” I sighed, and again we laughed.
I will see him for the big op in a few weeks. Excited … yes, but acutely aware that this might not be the moment of completeness that I hope it will be. There is a lot riding on this process. For it is as if this reconstruction operation can wipe away the struggles and somehow make me whole again. Which is no easy feat after three years feeling broken.
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!