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Why I Became a Patient Advocate

Last year, I got diagnosed with breast cancer. My life fell apart. I lost my health, my energy, my job, my enthusiasm, my sleep, my appetite. My brain got sluggish. I was lost. Lethargic. Uninspired.

Then I started treatment. It was brutal. I shrank my sense of time to smaller units. I wasn’t thinking about what I would do after cancer. Or even making plans for the summer. I was just focused on making it to the end of the day. One day at a time. From my bed to the hospital. From the hospital to my bed. And again the next day.

Then, something happened. My body was still beaten up and shivering, but I started to see the treatment through new eyes. Amidst the misery, a new sense of purpose started to awaken in me. I realized that being a cancer patient also gave me an opportunity to be a proximate witness of cancer. I started to see the stress and trauma of treatment not as an inevitable dread, but as a design flaw that could be improved. I started to see that my pain could be turned into something positive. That I could leverage my first-hand experience of cancer, professional skills, and moment-to-moment awareness of my human experience to help oncology providers design a better cancer experience for other cancer patients. That gave me hope.

I decided to use my voice to give voice to the million voiceless cancer patients suffering in silence. I wrote a blog post about my cancer radiation experience and the distressing impact of stressful medical processes. A friend suggested I submit it to a medical journal to broaden its reach. I made improvements to turn it into an academic paper, and it was accepted for publication in the Journal of Patient Experience: Leotin, S. (2019). An Insider View of the Cancer Radiation Experience Through the Eyes of a Cancer Patient. This, in turn, opened doors to new conversations with medical providers. I was met by resistance by some and gratitude by others. I joined the board of the Stanford Cancer Center Patient and Family Advisory Council. I received invitations to speak at medical conferences.

My cancer experience made me aware of a gap in understanding the needs of cancer patients I had not seen before, and the unintended suffering it adds to the cancer journey. Cancer is a black box few people understand unless they’ve had cancer themselves. We need to bring to light the unseen needs of cancer patients to empower those who care to address them. Through writing, speaking, and the use of new technologies, my objective is to reveal the human experience of cancer and help improve the patient experience for all cancer patients.

I am thrilled to be joining the Lyfebulb community as Cancer Ambassador and look forward to meeting many of you, online and offline.

This article was originally published on my blog at sylvieleotin.com.

Twitter: @sleotin

10 Items You Should Take With You To Chemo

Repost from:  CrazyPerfectLife.com

By: Dara Kurtz

Going through chemotherapy can be challenging. Trust me, I speak from experience. Here are 10 items I wish someone had told me to bring when I went for chemotherapy. It would have made the experience easier for me.

10 Items You Should Take With You To Chemo:

1. A good attitude – You don’t want to be in this situation, but here’s the thing, you are. You need to have a good attitude. I know it’s hard, but try.

2. Layers of comfy clothing – The room will probably be very cold, kind of like an airplane (Maybe you could pretend you’re on an airplane going somewhere fun? Think of the chemotherapy chair like sitting in first class.). Even if it’s summer time, make sure you bring a sweater or jacket. The chemo can change your body temperature, so being able to shed a layer or put one on is helpful. Warm blankets will be offered and I highly recommend getting one, or many.

3. Warm socks – I always took my shoes off, snuggled under the warm blankets the hospital provided and put on cozy socks. Wear shoes you can slide into easily in case you have to go to the bathroom, which you will probably need to do. During chemo, a ton of liquids are pumped into your body and they’re going to have to come out eventually.

4. Something to keep you busy – Take your journal, knitting, crocheting, adult coloring books, crossword puzzles, reading material or whatever else inspires you or holds your  attention. The key is to try to distract yourself. Do not focus on any of the side effects. The nurses will watch you closely, and should you have a reaction, which probably won’t happen, they’ll know exactly what to do. If you start to feel strange or something seems off, don’t hesitate to tell your nurse, but don’t sit in the chair and worry.

5. Chapstick – Or something to put on your lips.

Take items to chemo to help you relax.

6. Snacks – Bring snacks such as crackers, bananas, sliced apples, applesauce, healthy muffins or breads. Don’t eat anything rich or bring foods with a strong smell. I also wouldn’t recommend foods that are too sugary. Don’t let your stomach get empty but don’t eat too much either. It’s kind of like being pregnant. Except it’s not. Peanut butter crackers became my best friend.

 

7. Technology – It’s nice to have earphones and your device so you can listen to music or podcasts or even watch a movie. Ask about Wi-Fi before you start chemo. You might not have access.

8. Something to drink – Take a large cup with either water or hot tea. I always took a large Swell bottle with my favorite tea. This worked great because it would stay warm during my entire treatment. I was usually cold, and having a warm drink was soothing. While your hospital will probably offer water and other drinks, it’s nice to have a large cup so you don’t have to keep getting refills. Make sure you drink a lot, even if you aren’t thirsty.

9. Mints – Or hard candy, especially peppermint.

10. Make sure you can see – Don’t forget your glasses. If you wear contacts, you might want to take them out if you get tired (you will get tired) and want to sleep (you will want to sleep). Your glasses will enable you to see when you wake up from your nap. If, or should I say when, the drugs they administer to manage the side effects of chemo make you feel sleepy, don’t fight it. Let yourself sleep. The time will pass by faster.

 

I Started Chemo On The Most Gorgeous Day Of The Year

I started chemo on the most gorgeous day of the year.  I had just gotten the full range of motion back in my arm post-surgery a few days before and was ready to take on the next challenge.  My dear friends came in town from Philadelphia to support me.  My girlfriends in Copenhagen gave me a series of gifts to be opened at each treatment.  My parents sent family photos.  Not a bad start.  After my first chemo session, I spent the day enjoying the sunshine.  I even met Seth Godin who was vacationing in Copenhagen.

In fact, aside from the needles, it was a pretty great day.

I was told the nausea would hit me 4-6 hours after the first treatment.  I didn’t want to sit at home waiting to be sick so, under Anders’ watchful eye, I didn’t.  And in the end the nausea didn’t come until four days later!  All in all I’ve been pretty lucky with the side effects though the fatigue is pretty hardcore.  I was sleeping 13-15 hours per day for the first handful of days after treatment and I’ve had a couple less than glamorous episodes involving me nauseous on the floor but nothing super grotesque or horribly unexpected despite the warnings.

The nurse attributes my “luck” so far to 1) drinking close to a galloon of water a day and 2) being pregnant which apparently gives me some special powers.  I would also attribute it to the super nice weather and my friends being in town.

My mind was focused on not wanting to be sick alone inside when there was sun and fun to be had.

So positive mindedness aside, what have the hardest parts been?

Trying to be productive.  The word ‘awake’ used to be binary to me; the exact opposite of ‘asleep’.  Now ‘awake’ has far more variance.  Often when I am awake I don’t feel fully awake rather like I’m walking under water, in slow motion or on autopilot.  And if I workout, I have to expect that a few hours later my body will suddenly feel like I’m sporting a lead suit.  Everything takes more energy.  When my goal is simply ‘to be’ I’m good.  When my goal is to complete a ‘to do’ list I am coming nowhere close.  Often I do 1-2 things and then take a 2-3 hour nap!

Buzzing my hair.  My hair is likely to begin to fall out in the next few days.  Rather than wait for big clumps of it to start falling out, I decided to take my new already short style another step shorter. Anders buzzed it for me.  As I sat in the bathroom with my eyes closed taking deep breaths, suddenly I felt faint and nauseous and started to sweat.  I guess it was a physical reaction to a very emotional experience.  It took me a while to regain my composure before Anders could begin again.  The fact is the Demi Moore/GI Jane look isn’t so bad, it’s knowing that it’s yet another step closer to bald.  And bald is a big (and long) step.  I had my new short haircut for a couple weeks.  I’ll have my buzzcut for likely a week at most.  See you again sometime in 2018 hair.

Demi Moore’s iconic 1992 Vanity Fair cover doctored to also have her GI Jane haircut Photoshop credits: Lone Illum
Going, going…almost gone!

 


Follow Nora on her blog: Reflections: Being Diagnosed With Breast Cancer While Pregnant

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