Smiling at Breast Cancer Scars: A Checklist

Jackie Scully’s body is a jigsaw of scars from her collarbone to her hipbones. A constellation of scars on her obliques, a straight slash from hip to hip, a scar over her right breast, a thick glossy scar on her collarbone, and criss-cross scars over her lower hip and the top of her leg. Jackie sees each scar as a trophy for living through whatever life throws at her.

She says, “Under my clothes, I feel like a bit of a warrior…I feel like I can take on anything.”

Last Christmas Eve, Jackie relaxed at home just outside London with her boyfriend Duncan. Leading up to her favorite time of year Jackie spent months preparing for the holidays: hand-making 200 presents for friends and family, decorating, baking, and shopping. And now she had a few days off from her hectic career in the publishing world. Time, she told herself, to take a breath and focus on her personal life. In hindsight, Jackie says the 32 year old woman sitting by the Christmas tree had lost sight of everything in her life that was important. She also says life didn’t believe she would slow down in the new year.

So life interjected on her behalf.

On Christmas Eve, in the shower, Jackie found a lump in her right breast.

On January 17, her doctor confirmed Jackie had stage 2 breast cancer. The tumor grew rapidly and Jackie was soon diagnosed as stage 3.

After living through major hip reconstruction six years prior, Jackie knew what had to be done if she wanted to come out smiling on the other side of treatment. It would entail listening to her doctors but just as important it entailed changing HOW she lived her life.

She asked herself, “What is it I want my gravestone to say?” In an instant, she transformed her life to make sure life improved despite breast cancer. Following are the steps Jackie has taken since January so she can keep smiling and beat breast cancer.

SEIZE THE DAY

Jackie says until this year, “I worked so hard I had many engagements with friends I missed. I was the one not at the barbeque. I was the one who almost always had an excuse for something. And now I realize there are so many things in life I’ve wanted to do. Simple things like watch tennis at Wimbledon which is just down the road.”

Within weeks of her diagnosis, Jackie wrote the Brighter Life List: an eclectic list of goals. She posted it online rather than tuck it away in a notebook as a way to hold herself accountable. “I’ve got all my friends calling me up and asking me what have you done? And challenging me and I am continuously adding to it.” In 2014 while undergoing chemo and radiation, Jackie ticked 5 of 45 items from the list.

BECOME A LADY OF LEISURE

Jackie and Duncan took a few days away from hospitals and work this summer; one night on vacation they played pool. Jackie says, “It had been so long since I’d played I’d forgotten how to set up the table. I realized then it’s not always about trying to achieve something and ticking something off the list, but kicking off your shoes and having a laugh because after that you’re ready for all the other stuff.”

Before Jackie’s diagnosis, she neglected her leisure time seeing it “as a waste of time.”

She now knows the only way to a happier existence is beginning with herself and only then as she emanates that happiness can she be in the right place to help others. Jackie says, “I allocate a chunk of time every day to reading and to whatever makes me who I am.”

TELL BAD JOKES

On Jackie’s blog, she jokes about taking her shirt off for the oncologist in the morning and her pants off for the fertilization specialist in the afternoon, hair loss, baking for strangers, and the surrealistic situations we find ourselves living through.

She says, “I’ve always used humor when I’m nervous and in a hospital scenario I’d joke around and the nurses would look at me like, “God, are you really going to say that? Humor puts me at ease and it’s like leading by example. If I emanate a bubbly, energetic personality, the people around me actually become that way and then I have people to bounce off when I’m feeling a bit sad.”

FIGHT FIRE WITH FIRE

Jackie hadn’t played sports since high school and she surprised everyone, even herself, when she decided to take herself on a run last spring. She ignored the voice that told her she’d rather lay in bed and she ignored her troublesome reconstructed hip; she ran despite the chemo side effects. She decided to treat her body with extra love by running around the park by her house almost everyday. The doctors asked her if she was an athlete. She said nope. But she committed herself to the challenge. Jackie says, “I said, right, I’m training for a 10 K and I did and it’s the BEST decision I’ve ever made.”

Coming through the finish line, not only had she found a new passion but she raised over £2000 ($3300) for breast cancer research. “Running clears my head, gives me real focus for the day, and keeps my weight down and now it will always be a part of my life.”

Her next race: Run To The Beat 10K on September 14th to celebrate the end of active treatment the following day.

REIGNITE RELATIONSHIPS

Over the last nine months, Jackie says, “It has been such a wonderful, wonderful period for reconnecting with people. I’ve seen people this year I hadn’t seen in 14 years.”

She started a blog to keep friends and family up-to-date on her treatments and daily life with breast cancer. As people read her words, she received overwhelming support: an outpouring of cards, messages, cookies, cakes, flowers, and gifts from friends and strangers.

In turn she reestablished closeness with family and friends strengthening it even further with her Pink Hearts Campaign. Jackie handcrafts and hand-delivers fluffy pink hearts to people who have touched her life, “be it a nurse, a surgeon, a friend.” Each heart is accompanied by a piece of paper with a generic message on where to hang it, what the heart means, and reminding her friend to seize the day. On the back she writes her reflections on her relationship with that person.

Instead of asking friends and family for pledges of money for the race in September, Jackie proposed something else to her friends. She asked for pledges of drinks rather than money. For each pledge from a friend, she will donate her own money to breast cancer research. And instead of having one big party at the end of active treatment, Jackie plans on visiting each friend collecting on their pledge of wine, cocktails, and cups of tea over the next year.

CREATE. CREATE. CREATE

Jackie’s loves to bake. Not only that, she loves to create original baked goods. Through chemo, she lost her taste buds which made everything taste metallic or like cardboard.

She explains, “Chemo day was always a sad day so I went in search of the ultimate ginger chemo cookie. Ginger is really good for nausea. I got people from all over the world to send me recipes for ginger biscuits and I’ve been baking them and testing them out on the ward.” The day of her last chemo treatment, she made a sponge cake covered in 450 little fondant tablets which as she says, “went over so well in the ward.”

GIVE, GIVE, GIVE

Jackie always wanted to take her lifelong love of writing and write a book; now with a new-found calling, she has decided to publish a book about smiling through serious illness. All proceeds go to breast cancer charities. With a passion for breast cancer awareness and fundraising, she says, “I’ve always been supportive of people but now I’m focused on four charities to help raise money, providing blogging strategy, and writing for some others. I’m using my professional skills in a charitable light.” She is also a ‘boobette’ – one of a team of women who visits schools to talk to young women about the importance and methods for breast examinations.

PULL IT TOGETHER aka GET SOME PERSPECTIVE

After diagnosis but before her first chemo treatment, Jackie underwent fertilization treatment. Women in their thirties often lose their chance to bear children because of the effects of chemotherapy on their ovaries.

Her biggest piece of advice for her future son or daughter?

“Think about: Who are the people that are going to stand by you? Who are the people that are going to make you smile? What do you want out of life? Just go out and find it.”

“And to think about your life in terms of “What do you want your gravestone to say?”

She says, “I’ve always hankered after the big things in life, the vacations, the job promotions but what I should have focused on is the smell of homemade bread and the smell of fresh cut grass because this is what my happiest days are made of. Life is about taking in what is beautiful in the simple way and everything else is a bonus. Keeping that in mind is where people find happiness.”

What are your happiest days made of, dear reader?

As always thanks for reading. For more scar stories about people who now look outward and upward, check out my book Who I Am: American Scar Stories

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Want to read an excerpt, read some Amazon worthy reviews, or find out how to own your very own personalized copy, check out the American Scar Stories page. Happy reading!

MuSCulAR Stories: Jacques Lopez

Jacques Lopez, 36

Virginia, USA

Jacques Lopez is covered in scars. Scars with stories. Which is lucky for me as although he is a man who doesn’t subscribe to outbursts of self-disclosure, whenever I ask about a scar, I learn a little more about him: his experiences, his reactions, how he sees the world. These scars allow me to start conversations and use my natural ability to interrogate…ahem…interview him to satisfy my curiosity.

  1. Right Eyebrow: 1993. High school student in Bangkok. Jacques threw a punch at the wrong guy. He didn’t know it at the time but the wrong guy was the son of  the local mafia kingpin. Jacques got lucky and regained consciousness in an alley, beaten up, bleeding, but escaping the signature mark of this guy: an external gunshot through the cheek.
  2. Side of Right Eyebrow: 1982. One of his first memories is sliding headfirst down the carpeted stairs in his home in Miami, FL. The chicken pox were so itchy and he knew he shouldn’t pick at them. Alas, there is only so much restraint a 4 year old can display and he now has the scar to prove it on the side of his right eye.
  3. Under Right Eye: 1994. Bangkok. With only a few Baht in his pocket, Jacques hopped on the cheap bus to head home one morning. He thought the bus stopped but as he stepped off the bus, the bus stuttered, then gunned it through the traffic light. One foot on the bus, the other on the road, Jacques bounced his face off the street and need stitches for the cut.
  4. Right Middle Finger Knuckle. Early 80’s. C’ote D’Ivoire. Living in west Africa, Jacques’s adventures as a lone boy on his bike left him with many scrapes and bruises but the scar on the knuckle of his middle finger is thanks to messing around with a knife. “My mom had given me a Swiss Army knife which I took outside. Across the street was a huge area of mixed grass and brush and a massive pile of dirt. I used the knife to stab a banana tree and tried to whittle pieces of it. I sliced off the top of my knuckle.”
  5. Middle Finger Middle Knuckle to Base. Late 80’s. Virginia. “I heard you could make teargas with ammonia and bleach so I mixed those two liquids in a mountain dew bottle. I brought it outside and shook it. Nothing happened. Then I put it down and just touched the bottle cap and BOOM. It exploded.”
     
  6. Back of head: 1982, Napa, CA. His first scar. “I was little. I was messing around with a broomstick in the playground by my grandma’s house.” He remembers bleeding from the back of his head but not much more than that. I guess there’s something to be said for faulty early childhood memories.7. Side of Torso: Early 1990’s. Rural Thailand. On a rented motorcycle driving around with friends. At the end of the night as Jacques took a turn on the road the gas caught, the bike went one way and sent Jacques headfirst the other way into a field of tall grass. His first thoughts were: “I’m not dead. Nothing’s broken.” And then he saw his side, one cut bleeding and pretty deep. Back at the hotel, Jacques convinced one of his friends to stitch up the cut with a needle sterilized with a lighter and a piece of linen from the hotel comforter. The carbon from the sterilized needle left black marks on his skin.
  7.  Left Knee: Mid 80’s. West Africa. Of the many invasive, disease ridden insects on earth, many of them live in the humid world of West African countries. Jacques traveled to a number of neighboring countries with his mom, dad, and brother when they lived in in C’ote D’Ivoire. A fly lay eggs on his knee most likely as he slept, burrowing the eggs inside his skin. The most common areas for nesting insects happens in elbow crooks and armpits: soft moist areas of your body. The spot above his knee become tender, red, and increasingly sore. Hot compresses were applied. What broke through his skin? A 1/2 inch larvae. “The whole thing came out. It looked like a fat white leech.”

Did anyone else just gag?

For inspirational portraits and short stories, check out Who I Am: American Scar Stories. You can also get daily mini scar stories from people I come across in daily life. Find these on my Instagram page or the American Scar Stories Facebook page.

And once again, thanks for reading.

MuSCulAR Scar Stories: Jake Evans

Jake Evans, 38

New Brunswick, Canada

Each of Jake’s four noticeable scars appeared after spring adventures. “It seems every spring I get all excited. And then something happens.” I talked to him late winter 2014 and he laughed when he said, “I’ll have more scars after this spring I’m sure.”

Head to Toe….

FOREHEAD

“The scar on my head has made me realize how close I’ve come to not being here. I don’t take life for granted and I will enjoy it while I’m here. I don’t sweat the small stuff. But then again I’ve always been like that so maybe that’s why I get into trouble.”

“Before I went into surgery, the surgeon told my parents there was an 80% chance I wouldn’t live and if I did live, I’d be paraplegic or brain dead. But the specialists saved my life. I went through 6 hours of surgery and at one point I flat-lined.”

Earlier that day in May 1999, Jake was out in the New Brunswick woods partying with friends on Victoria Day weekend. He ventured off with one of the dogs at the camp and didn’t see the 20 foot drop into an old concrete logging bin: an old type of dam loggers used to guide timber down the river. Jake hit the concrete and he was knocked out cold, his neck broken in two places, and his head looked like “someone pushed in an eggshell with its splits and lines.”

Eventually some of his friends wandered through the woods to find him. They didn’t see Jake but they found the dog whining at the top of the drop-off. They quickly climbed down the rebar lining the dam top to bottom. His friends could see Jake’s brain and his eyeball had fallen out of its socket so one guy wrapped a jacket around Jake’s head. Jake gained momentary consciousness and his instincts kicked in; he freaked out sure someone was attacking him. His friends held him down and Jake passed out again. His buddies carried him, climbing back up the rebar and driving him 30 minutes to the nearest hospital.

The doctor working that night said there was no hope for Jake so sending him to a larger, better equipped hospital for surgery was pointless. Jake’s parents insisted he undergo surgery.

“When I finally woke up, I had a tube in my head, my groin, my hand, my mouth and a trach in my throat so I couldn’t talk but the first thing I saw when I woke was my dad messing around with the tube in my head. I motioned for something to write with. Everyone was so happy I was awake.” Jake took the pen and painstakingly wrote a note to his dad, an accountant, a man he loves but feels has no business being around any kind of machinery. He wrote, “Get the fuck away from my head.” Everyone laughed. Jake was back.

STOMACH

Five years ago, at age 33 and now a realtor, Jake went into the office before heading to Grand Lake to show a house. “I didn’t feel good. The girls at the office told me I looked bad and I should just go up to the hospital but I drove out to Grand Lake to show the house anyway. But once I got there, I cut it short. I felt real bad pain. I felt like I was dying so I raced to the hospital.” Jake made the 77 km (48 mile) drive. Within an hour of reaching the hospital, he was prepped for surgery. “At first they told me I might have to wait but it just so happened a surgeon was there from Toronto so I got the surgery right away. It was my appendix. It almost erupted. I got there just in time.”

RIGHT KNEE

In 2002, Jake was pushing logs around at the Mactaquac Head Pond when he slipped and lodged a broken beer bottle in his knee.

RIGHT ANKLE

Just last spring, Jake rode motocross around McCloud Hill, a peaceful part of New Brunswick’s countryside. He fell the bike and ripped open his ankle. Instead of getting it looked at, Jakes says, “I screwed around on it for a couple hours.” The open wound became a major infection and left him with his fourth noticeable scar. The ankle scar sits a few inches above his mangled toes but that’s another story for another time.

For daily mini scar stories, check out my Instagram account and for a whole book of incredible scar stories and portraits, check out my book: WHO I AM: AMERICAN SCAR STORIES.

Idea Explosion: American Scar Stories

The number one question people ask me about the book is, “how did you come up with the idea?” Followed closely by “how did you find the people in the book?” When Leanne Sowul asked me to write about American Scar Stories, I figured I’d write about just that – the story behind the book idea for American Scar Stories; that and my interactions with people whom I didn’t include in the book. You can find that guest post at Leanne’s site. Thanks for subscribing and have a wonderful, adventurous week.

Wind Patterns Over Chernobyl: Leanne Sowul’s Scar Story by @sowulwords

Leanne Sowul carries physical scars from life’s twists and turns: in her case, cancer inflicted scars on her neck. Why do the things we live through happen to us? Read Leanne’s piece on what her scars mean to her now as a mother and writer. 

She is a writer and music teacher living in the Hudson Valley region of New York. She writes historical and literary fiction, and was most recently published in Confrontation literary magazine. In her blog Words From The Sowul, Leanne shares her philosophies of life after cancer and motherhood. Follow her on Twitter @sowulwords

Wind Patterns Over Chernobyl

There are many kinds of scars. There are inner scars, and outer scars. There are scars we inflicted on ourselves, and those that were inflicted on us, by accident or design. There are scars that cause pain, and those that meld peacefully into our skin. There are scars that mean everything, and scars that mean almost nothing.

 I have a scar that is all of those things.

My scar is on my neck. It’s two scars, actually- two parallel lines, marking where the surgeons cut me open four times to remove my thyroid gland, then multiple lymph nodes on both sides, in the attempt to rid me of thyroid cancer when I was a teenager. That’s only the outer scar, though. The inner scar is the four years I spent fighting that cancer instead of living a normal, carefree teenage life. The inner scar symbolizes pre-and-post surgical drugs, days of radioactive isolation, feeling different from all my peers, and endless fights with my (understandably) protective parents.

 My scars were inflicted on me by cancer. I don’t know where the cancer came from- God? Past-life karma? Tiny microbes? Wind patterns over Chernobyl after the nuclear explosion when I was a kid? (The last is the only theory with any shred of proof.) But they were also, in a sense, self-inflicted: I agreed to the surgery, and afterward I sometimes dealt with my inner scars in a way that cut even deeper. Toward the end, I also experimented with self-cutting, though thankfully, it was never deep, never embedded in my psyche, and I have no scars from such incidents.

 I have felt pain in my scars. When I woke up from surgery, the pain was acute; then, after a few days of hospital-grade painkillers, it simmered down to a dull ache. Now I don’t feel them at all- in fact, there are parts of my upper body that are still numb or re-wired wrong as a result of the surgeries. If you touch me on my shoulder, I feel it behind my ear. My neck is a parlor trick.

 What matters most about my scars is this: They used to mean everything about me. They used to be my entire identity: I was “the girl with cancer.” But then I went into remission- hopefully permanently, though you never know- and I was allowed to go on with my life. Like a poisonous relationship I was finally able to shed, it still affects me, but it no longer defines me. I became other things: a high school graduate, a college student, a certified teacher, a live-in girlfriend, a bereaved granddaughter, a homeowner, a wife, a mother, a writer. Over time, I stopped seeing my scars when I looked in the mirror. I’m hardly conscious of them at all; on the rare occasion that someone asks me about them, I have a moment of surprise before I say, “Oh, I had cancer.” Fifteen years is a long time, and there is a lot of truth to the adage that time heals.

 But even though they no longer mean everything, my scars will never mean nothing. These days, instead of a mark of pain, punishment, and suffering, my scars tell the world that I experienced those things and survived. I’m no longer a teenager desperate to fit in; now I’m an adult striving to stand out, and I embrace the parts of me that are different. My scars symbolize a past that I can always draw strength and gain perspective from. After fifteen years, I can look at my scars from the inside and out; I can be grateful for my past with cancer, and even for the pain. My scars tell the story of a defining moment in my life, but I still get to write the next chapter.     

[Tweet “Why? “Tiny microbes? Wind patterns over Chernobyl after the nuclear explosion when I was a kid?” http://bit.ly/TX53CS #cancer #scars“]

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Scar Stories: Helping Those That Hurt Themselves

Mark Gatland is a trained counselor living and working in Cambridge, England. In 2014, he gained viral-level attention for his post: A Letter to All the Great Dads Out There. 

Mark counsels a number of young men and women who cut themselves, often leaving scars for life. In Who I Am: American Scar Stories, I tell the story of a young woman who cut herself for years. Although Cathy now represents those people recovering after years of self-harm, her story reveals a hellish history. The following is Mark’s firsthand experience with people with self-harm and insightful advice on how to help someone who is cutting themselves.

Self-Harming: A Counsellor’s Perspective

Don’t Make Assumptions

“I just want to be heard. I’ve seen loads of professionals and most of them, because it’s their job, think they know me better than I know myself but it’s rare for them to truly understand. All they need to do is ask what it’s like from my point of view and then listen. I’ll tell them but they have to be willing to listen.” Amy, 20

There is no one size fits all. Self-Harm is different for different people. When parents come for counselling invariably the first thing they will ask is “can you explain why my son/daughter cuts themselves?” They always seem very disappointed when I explain I haven’t got a clue, that much like other areas of life you can’t possibly know unless you listen to them.

When addressing the issue it’s important to remember that what one person feels will be completely different to another and equally what one person does to cope will be different to another, no less valid, just different.

I remember asking a father how he coped when he had a stressful day and him responding that he would go home have a cigar and get drunk. Self-harm comes in many forms, we all have our own coping mechanisms and until you understand and accept that each person is different and equally valid then you can’t possibly hope to understand why they do something.

People will self-harm in different ways, for different reasons and as a response to different incidents. Don’t make assumptions. Until you’ve heard someone describe in their own words what’s happening for them you can’t hope to understand.

 Make sure you’re listening

“Before I started seeing you I had no one to talk to. My family were so upset that they didn’t want to hear anything I had to say. The most helpful thing has been you listening to me, knowing that when I talk you won’t interrupt, tell me what you think or what I should do.” Mark, 19

Most people think they’re good listeners. I can tell you here and now they’re not. Listening is a skill in itself, it takes practice and involves understanding what it means to actually listen. The saddest thing for me is the number of therapists that actually aren’t very good listeners.

Really listening requires empathy, it means caring about what the other person is saying and being able to recognise what they’re not saying. Listening can often be uncomfortable, that’s why most people will say something or break a silence but true listening doesn’t get uncomfortable, it doesn’t judge, doesn’t offer advice, it just hears.

People have said to me “I don’t really understand your job, all you do is listen to people, surely you must also offer them some advice”. Well this really misses the point, actually listening to someone is one of the most valuable things you can do for them, sadly it isn’t something that happens nearly enough in society and it’s one thing that I believe could genuinely change the world. Don’t believe me, try it for yourself and see the difference it makes in your own relationships.

Young people will overwhelmingly say “the problem is no one listens to me”. Giving a person the chance to describe their problems and tell you how they actually feel gives them self-worth and validates them as a person. With people that self-harm this is of vital importance as often they will have been faced with people that haven’t listened to what they were saying, instead responding with the usual clichés “stop being silly”, “cheer up it will get better” and “don’t overreact”.

Actually being heard can play a massive part in someone facing their problems and making changes.

If there is one thing you can do for someone that self-harms this is it. Listen.

You’re not in control. They are.

“When I think about harming myself I also feel like I am out of control. On the few occasions I’ve told someone what I was thinking of doing they’ve tried to tell me what to do or even worse to make decisions for me. This reduces my control even more and is so scary it makes me more likely to self-harm, not less.” Angel, 16

One of the most common things people talk about when they self-harm is lack of control and how that scares them. Self-harming helps them to gain some control back because they can control how they feel and this in turn makes them feel more in control of situations.

When working with anyone that self-harms it’s vital to remember that removing their control or their perception of it will likely make things a whole lot worse.

People often confuse self-harm with suicide but you couldn’t get further from the truth, self-harm is the exact opposite, a way of trying to stay alive and manage the feelings the person is having.

Some inexperienced therapists have made the mistake of trying to make decisions about self-harmers, assuming that they are a risk to themselves and trying to get help for them be it through breaking confidences and speaking to their GP or encouraging them to get medical help themselves. Of course there will be some circumstances where this is necessary (although I would suggest limited ones) but it is vital in these cases to remember quite how frightening it would be for someone who is already feeling out of control to have decisions either made for or forced upon them. There is every chance that these actions will just exasperate the situation and give even more reasons to actually self-harm.

Whatever course of action is needed the most important aspect is to keep people involved in the actions and to enable them to feel in control of the whole process.

 Who are you to judge?

“My parents think I self-harm to get attention. I don’t cut myself so people can see how I’m feeling, I do it so they can’t. I don’t want people to have to listen to me all the time talking about my problems so I cut myself to try and manage my feelings and to save the people around me from having to listen to me. Saying I am seeking attention hurts and makes me want to shut people out just that little bit more.” Rachel, 18

For a self-harmer talking about it is just about the hardest thing they can do. Imagine plucking up the courage to discuss it and being met with anger, judgement or disappointment.

We all have strategies for managing stress and pain, for some people theirs is self-harming. They’re not making a statement, doing it for effect or to gain attention. They are doing it because it is the only way they know of managing their feelings. In the short-term it can actually help and therefore if someone’s struggling and their strategy for dealing with it helps them then who are you to judge?

People don’t make deep, real changes because they’ve been judged. They make them because they’ve been understood and listened to. They need you to show compassion and to recognise that they’re trying to cope the best way they know how.  

 Change takes time

“Talking about my cutting was really hard. I was really scared. The more I thought about it the less I felt in control and of course the cutting then increased.” Nicola, 15

All relationships take time to develop but when someone is talking to you about their self-harming it can take even longer than usual.

Self-harming is important to the person and their ability to cope. They may be scared you will judge them or worse still try and stop them from doing the only thing that helps.

Relationships have to be built on trust and consistency. You have to be willing to give as much time as is needed and to understand that things could take a long time to get better. In a lot of cases just discussing it means in the short term it will get worse.

It’s very important to realise you can’t measure success against whether the person is still self-harming, there is no magic pill that will suddenly stop it and it isn’t a reflection on you as a counsellor or parent. Try to understand how the person is thinking and feeling and use this as a measure of whether they are moving forward or not.

Stopping self-harming can be a long and slow process, often with significant set-backs along the way, understand this is a necessary journey and support them with compassion and understanding.

Mark lives in Cambridge, England with his wife Joanna and son Harry. When he’s not busy seeing clients or building his business, Mark can be found studying psychology and philosophy, running in the early hours, indulging his passion for cooking or chasing his son around the park. To find out more about Mark or to read his blog, please visit www.thecambridgecounsellor.co.uk

A CEO’s Scar Story by @lacunaloft

Mallory Casperson is an experienced scientist. She is a salsa dancer. She is a creative writer. And now she’s the founder and CEO of Lacuna Loft – an innovative collection of resources, articles, and products dedicated to helping young people living with long-term illness and their caregivers.

Three months after her mother passed away from a brain tumor, Mallory’s own scar story unfolded.

Told in her own words:

Leading up to my scar…

  • I think I have to openly admit that there is more than one scar story found here.  In March 2009 my mother was diagnosed with a Grade IV Glioblastoma Multiforme.  Before starting her chemotherapy treatments, and after her initial surgery to remove as much of the tumor as possible, she had a port installed in her chest.  That port was a very outward sign, on the thin frame of my mother, that cancer had infiltrated our household for the first time.  She passed away in December 2010, just three months before my scar arrived.
  • In the years leading up to my own cancer diagnosis, I was a busy graduate student.  Days, evenings, and weekends were all spent taking classes and doing research.  I spent long hours in a basement lab studying the growth of cracks in metals at high temperature and even longer hours figuring out how to scheme, dream, formulate, and communicate this research with those around me.
  • I spent other parts of my day dreaming of travel.  As an undergrad, I studied abroad for a year and spent another 6 months on top of that overseas.  I wanted to live and breathe another language and culture…and not just for a day or a month, but for years.
  • Writing, for me, had always been an outlet.  As my mother’s scar continued to infiltrate my existence, writing became more and more painful and so I reached for my notebook less and less.  I filled my head with television and movies, work, running, and late nights out dancing.  I could salsa dance my woes away for hours.
  • Though life in graduate school can feel quite isolating at times, I continued hanging out with a few, good friends.  Through one of them, I started taking a salsa class and I met this fantastic guy.  He was cute and nerdy, athletic and loved to cook.  And when my life crumbled around me, as my mother’s health declined and I rode the waters through my own cancer diagnosis, he was always there.

 How my scar changed my life…

  • I have come to realize, that as part of this story I cannot omit the month before I received my port; that object which created my scar.  Before that port, some of the chemo drugs burned intensely when “pushed” (injected into my arm).  Another one burned so much that they would allow it to infuse very slowly, extending my time spent in chemo.  My second round of chemo lasted 11 hours.  One of the veins in my forearm was permanently damaged during one of these first two rounds of chemo and ached for months afterwards.  The port was then implanted on the right hand side of my chest.  It changed my life and the way I experienced all of my following chemotherapy treatments.
  • When chemo was over, I waited the six week period of time called for in the clinical trial I was a part of, had my last round of scans, and then had them remove the port.  The incision, along with the rest of my body, began the long healing process.  Being a young adult cancer patient and survivor is an interesting journey.  My mother’s death and my scar, bringing to light the life and death journey that I was a part of, was difficult for my peers to understand and they shied away from it.  I hid the scar from my work, pushing on and being as normal and full of energy as possible, and from my friends.
  • My own cancer and my mother’s, left me with some depression and anxiety.  Leaving the house, and my two pups alone in it, took significant extra time as I checked and rechecked appliances, lights, and all potential fire hazards.  I reveled in returning back to work but tired quickly and felt emotionally exhausted by the end of each day.  I learned quickly that my “push through and just do it” mentality was not going to work with this new scar of mine regardless of how much I had to accomplish each day in my graduate program and research.  I did not return to the late nights that salsa dancing required though I slowly began to run again and spend more time outside.  Every three months, I went through CT scans and received official confirmation that my disease had not returned…yet I felt very much still in recovery.  The world had become a very frightening place.
  • After establishing a work/life balance that quieted some of my anxiety and left me feeling less tired and worn down, I fought through another two years of my graduate program… and finally left.  Working with PhDs at NASA over the summer was something I could do quite well…my research was solid and excited people other than just myself.  People wanted to work with me and I wanted to work with them…but pushing through an academic work load to finish my PhD just wasn’t working right now.  While offers to work were extended at various places, my husband had a year and a half left in his own PhD program.  We had been to hell and back, and we wanted to stay together, living in the same place.  I would need to explore some other options.
  • Over time the incision on my chest has begun to fade, though it is still quite predominant and visible.  After almost a year of blogging about the weekly comings and goings of my household, I came to the realization that I could make a difference with my writing.  In August 2013, started a magazine and e-Commerce site called Lacuna Loft.  Lacuna Loft is geared towards young adults dealing with cancer or long term illness, either as patients or caregivers.  My scar is part of the story behind my voice on Lacuna Loft…no longer something that I need to try and overcome; it is the very thing which has led me to this brand new place.

Mallory is the Founder and CEO of a magazine and e-commerce site for young adults dealing with cancer or long term illness, as either patients or caregivers, called Lacuna Loft.  She served as one of the primary caregivers for her mother undergoing treatments for a brain tumor just months before receiving her own diagnosis of Hodgkin’s Lymphoma.  She has her MS and half of a PhD in Aerospace Engineering.  Mallory sees the beauty of everyday life and strives to help others find it too, even in crisis.  Follow Lacuna Loft on facebooktwitterpinterest, and instagram!

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