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10 tips for coping with cancer learned after a long journey

On January 19, 2012 my life changed forever. I got the call from my gynecologist that no one wants to get.

“We got the results of your biopsy and it is breast cancer.”

With those words, a terrifying journey through unknown waters began.

Four years later, after 15 surgeries and various procedures, hormone therapy and complexities at every juncture, I am still in treatment for another year and a half but have no evidence of the disease.

I have been very active in the cancer community and extremely proactive in my healing process. Through my experience coping with cancer, I have garnered a lot of knowledge and now want to offer some insight that I hope will help other patients, caregivers and friends and family of those going through the battle.

Let me start with some observations I have made. There seems to be some common themes that pop up as I speak with other patients. These themes exemplify how cancer is a very complex disease.

1. Learn about YOUR disease

Everyone’s cancer journey is unique. My “cancer friends” and I have all noticed this. People with the same kind of shutterstock_318321200cancer, and even the same kind of treatment, can have very different experiences. It’s important to remember this whether you are a newly diagnosed patient trying to learn more about your disease or if you are a caring friend.

There is just so much involved – surgeries, treatments, medications and side effects – and as similar as tumors may be, each person’s DNA and body chemistry is completely different.  Everyone’s experience is different.

2. Try not to have expectations

I was told that I would have a lumpectomy, recover from that after a few weeks, and then undergo 6 weeks of radiation therapy followed by 5 years of hormone therapy. Seemed simple enough – it all felt like it was “tied up in a bow.”

Well, that is not exactly what happened. My cancer proved to be much bigger than the MRI and mammograms had shown. I found myself undergoing a bilateral mastectomy – which led to complications of course, which then led to a whole new course of treatment.

As I meet and talk to other cancer patients, this is not uncommon. This seemed to be the norm rather than the exception. Cancer’s never as simple as you think.

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3. Be patient

It takes quite awhile after a cancer diagnosis to find out just what is going on because cancer can be very elusive to imaging. Many other tests may have to be done after the initial diagnosis. Patients are shuttled around from one doctor to another. What this means for friends and family is remembering that cancer is a marathon, not a sprint. Some people are very gung-ho about helping at the beginning but some treatments can last for years.

4. Find doctors that you’re comfortable with

Besides the diagnostic prowess of these oncology medical teams, it’s very important for the patient and their caretaker(s) to be completely comfortable with their doctors. This team will lead you through what will no doubt be a harrowing experience. You may be calling them late at night or on the weekend and you want to hear compassion, confidence and reassurance every step of the way.

The good news is that the doctors that work in oncology are some of the most capable and cutting edge. They have access to all of the latest studies and trials.

5. Remember you’re not alone

Another thing to remember is that cancer does not only touch the person that is diagnosed. Everyone is affected. Spouses or partners, families and close friends are all affected by cancer. It is brutally difficult to watch a loved one going through something so terrifying. It is important to realize that everyone needs support during this time.

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shutterstock_3073816436. Don’t discount your outer circle of friends

Towards the beginning of my journey, I actually found the most comfort from friends and co-workers outside my “inner” circle. People that I had gone to school with 25 or 30 years ago came out of the woodwork to offer support. Colleagues from work were very helpful with my workload (I was spearheading a major project when I was diagnosed).  Friends sent letters, packages, and texts.

Really, there’s nothing like getting an email or a text saying that they are thinking of me and praying for my healing. This is especially true when they’re not asking a lot of questions or putting any pressure on me to respond. I can’t tell you what a gift that was to receive as I was waiting in the lobby in a doctor’s office, lying in a hospital bed, or resting at home after a procedure.

Just knowing that someone took the time to do that was so uplifting. THAT is really where I found the most comfort. Again, my family and closest friends were dealing with their own part in this. They absolutely did their best to be there for me but I could see the fear in their eyes. For friends and family of the caretakers, these gestures work well for them, as well as the patient.

7. Don’t be afraid to put your needs first

While everyone in the cancer patient’s orbit goes through their own ordeal, the bottom line is that the cancer patient’s needs must come first. Keep in mind that those needs are not always so clear to the patient, particularly at the beginning. It is hard to know what the course of treatment will be and the effects of such.

Because of the complications that I had, a number of additional specialists were brought in.  I was going to a doctor’s appointment every day for the first 4 to 6 weeks after my mastectomy. I had a friend send lunch and dinner to me every day for 2 weeks after my mastectomy. This turned out to be a G-d send.

Little did any of us know that those days would be spent with me spending several hours a day in a hyperbaric chamber to help me get through an unexpected complication. We didn’t anticipate it but the fact that I wouldn’t be able to use my arms immediately after surgery meant I would need help with food.

8. Recruit a caregiver

Everyone would ask me what I needed and so many people wanted to help. I think it is so important to let friends and others help through this time. On the flip side, many people are on the sidelines watching someone go through this and really want to help. What I recommend is designating somebody to help organize the needs of the family and be the liaison to others who wish to help.

9. Start with the basics

In terms of specific help that might be needed, I think in general it is good to start with the basics – food, help with the children, rides to doctor appointments, and basic household tasks like laundry, etc. As a patient and their family are facing a shocking diagnosis, they may not be focusing on these things, although some may welcome basic chores as an outlet or distraction.

If you want to help someone going through this, be clear what you can give. Some people have no time to help but have money or other resources; it’ll be easier for them to send a meal or a taxi ride. Others may have kids to take carenote to self- of but could make extra food to take over to the patient. And again, I can’t describe the impact of sending a text or email or card or something simple saying that you are thinking of them.

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10. Listen to yourself

At the end of the day, I think the most important thing is to be aware of what the patient is saying through words or actions.  Don’t push your advice or opinions unless asked for and watch out for cues that the patient is overwhelmed. Pay attention, ask questions when it is appropriate, but most importantly, just be there.

About 
After growing up in Orlando, FL, Sara Flatow has lived and worked in the entertainment industry in Hollywood, CA for the past 25 years. Over the past 15 years, she has created behind the scenes content for many popular television shows and films. Her latest projects include Grey's Anatomy (2005—present), Scandal (2013—present), How to Get Away with Murder (2014—present) and The Catch. Sara is also the producer/director of Marching Beyond Halftime, the nation's first documentary feature film about the long-lasting benefits of music education. Sara was diagnosed with breast cancer in January of 2012. Although it has been a long and arduous journey, she has remained cancer free for the past 4 years. For more information about Sara and/or Marching Beyond Halftime, please visit www.saraflatow.com and www.marchingbeyondhalftime.com.

1 Comment

  1. Penny

    April 11, 2016 - 9:46 PM
    Reply

    Heartfelt, genuine, beautifully written, felt like I could see through your lens, and compassionate. Thank you for sharing.

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