Can Health Journals Save Your Life?

This is a sponsored post. I was compensated by Med-IQ through educational grants from AbbVie, Astrellas, and Genentech to write about communicating symptoms and treatment side effects with the healthcare team. All opinions are my own.

In 2006, my mother had a mole removed on her arm that ended up being melanoma. After testing surrounding lymph nodes, it was determined that the cancer had not spread and the cancer had been removed.

Then 18 months later, my mother was diagnosed with stage IV metastatic melanoma.

She was given less than a year to live.

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My mom with her 7 daughters, 6 months before she died.

What prompted my mom to initially call the doctor was not another suspicious looking mole. (After all, we all thought the melanoma had been completely removed so there was no cause for worry) She called the doctor because she had noticed her voice sounded different. My mom went in for a check-up and, without much cause for concern, she went on about her life. Being the mother of 12 children and 50+ grandchildren, there was always somewhere to go or something to do.

My dad recalls being out back working in the yard when my mom walked out to meet him. He remembers a grave look in her eyes. She went on to say that she had missed several calls and urgent voicemails left from her doctor on their home line’s answering machine. Something rarely checked as cell phones were gaining traction.

When my mom returned her doctor’s calls, she was told she needed to come into the hospital right away. The melanoma was back with a vengeance. Her voice had indeed changed because tumors had infiltrated both of her lungs, as well as her brain. No treatment would save her, but there was treatment that could possibly prolong her life by a few months. The doctors predicted she had 9-12 months to live…she died 9 months later.

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My mom and I while she was in hospice, weeks shy of her passing.

If caught early enough, certain cancers including melanoma can be treated with a decent survival rate. I can’t help but think what could have been done to prevent the cancer from taking my mother’s life. My mom was 77 years old when she passed away. In all accounts, she lived a full and beautiful life. But selfishly, I needed her to stick around for much longer. During those 18 months, what more could have/should have been done?!?

Why I Think A Health Journal Can Save Your Life:

Jotting down how you are feeling each day, both physically and mentally, can provide tremendous insight to your doctor as well as yourself. Is there a pattern? Was there any significant impact an activity or food or medication may have had? As I stated in my previous post regarding Cancer-Related Stress, managing your mental health is often directly related to your physical health as well.

If you have cancer or any serious health condition that requires treatment, journaling specific side effects and symptoms after starting a new medication is invaluable to your medical team. Starting a new medicine, particularly in cancer treatment, may require you to stay home for a few days. The last thing you need is to be at the mall when a nasty side effect you weren’t expecting hits.

If you are the caregiver to a loved one battling cancer or a serious illness, keep a log on behalf of the patient. You are the one with them most of the time, not the medical team. Being able to provide the patient’s doctors with an accurate log will prove to be extremely helpful.

If the thought of adding one more thing like a daily journal seems too much, the American Cancer Society provides the following:

  • Side effects worksheets, which allow you to note side effects of surgery, chemotherapy, or radiation. Include when they are occurring and on a scale of 1-5 how severe they are. Do this daily. Do not think that you will remember and retrospectively record this information at the end of the week or when you have more time. Factor this activity into your daily activity and do it religiously.
  • A pain diary, which includes a scale for rating pain and noting where you feel it, what it feels like, and what makes it better or worse.
  • A list of medicines, which allows you to track your medicines, vitamins, and supplements. And do not take any additional medicines, vitamins, or supplements without your doctor’s approval. Sometimes patients assume that there is no harm in taking over-the-counter products, but there can be. So full disclosure before you start your cancer treatments is key as well as telling your doctor that you would like to add supplements or other medicines to your routine care before ever beginning them on your own.

As I mentioned earlier, my mom was always on the go doing what most moms do…putting everyone’s needs in front of her own. Did she make all of her required follow-up appointments? Did other symptoms creep in that she brushed off? Could something as simple as keeping a health journal have alerted her to serious symptoms that would have made her contact her doctor sooner?

I will never know for sure.

It may be too late for my mom, but perhaps it’s not too late for you or your loved. I’ve been blessed to still have my dad with me. My siblings and I do our best to be health advocates for my dad whenever possible. We are doing our best to keep him around as long as possible!

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My 88 yr old dad with his 51st grandchild, my daughter.

Med-IQ has opened my eyes to just how important it is to mention every symptom and side effect, no matter how small or minor you think it might be. Bring awareness, be an advocate for yourself or your loved ones and don’t hesitate to ask all the questions!

What I mean when I say “all the questions”

  • Which side effects should I call you for?
  • When should I call 911 or go to the emergency room?
  • What number should I call after business hours?

Some examples of side effects that require immediate care:

  • A fever of 100.5ᵒF or higher
  • Difficulty breathing
  • Increased pain
  • Trouble swallowing
  • Confusion
  • Uncontrollable diarrhea
  • Swelling in the legs or arms
  • Bleeding

Health journals do not benefit only cancer patients or those with serious illness. They benefit everyone from those struggling with mental health to caring for a child to dieting and exercising to just wanting to be super in tune with what you feel and consume each day. After my daughter was born and needed open heart surgery, my husband and I kept a log of all her medications and side effects. We also logged every milestone she reached. I remember the thrill we felt when we were finally able to feed her at 11 days old.

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We have only one shot at this ride called life, let’s make it count!

Lucy Riles

Life of Mom Founder

Med-IQ is an accredited medical education company that provides an exceptional educational experience for physicians, nurses, pharmacists, and other healthcare professionals.

Resources:

[American Cancer Society] American Cancer Society. Chemotherapy Side Effects. https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/chemotherapy/chemotherapy-side-effects.html

Accessed November 13, 2018.

[American Cancer Society] American Cancer Society. Tools to Monitor Treatment. https://www.cancer.org/treatment/treatments-and-side-effects/tools-to-monitor-treatment.html

Accessed November 13, 2018.

[Cancer.Net] Cancer.Net. When to Call the Doctor During Cancer Treatment. https://www.cancer.net/navigating-cancer-care/how-cancer-treated/when-call-doctor-during-cancer-treatment

Accessed November 13, 2018.

[CancerCare] Cancercare. Talking to Your Health Care Team About Treatment Side Effects. https://www.cancercare.org/publications/335-talking_to_your_health_care_team_about_treatment_side_effects

Accessed November 13, 2018.

Links to external sites are provided as a convenience and for informational purposes only. They are not intended and should not be construed as legal or medical advice; nor are they endorsements of any organization. Med-IQ bears no responsibility for the accuracy, legality, or content of any external site. Contact the external site for answers to questions regarding its content.

Med-IQ is conducting a survey and would appreciate your input. The survey, which includes additional education on this topic, will take less than 15 minutes to complete. Survey responses are anonymous and will be shared only in aggregate.

Your responses to these survey questions will provide Med-IQ with important information about your experiences with cancer symptoms, treatment-related side effects, and your care team, which will help us develop future educational initiatives for healthcare providers to improve care.

Once you’ve completed the survey, you will be asked to provide your email address if you’d like to be entered into a drawing administered by SOMA Strategies to win 1 of 5 $100 VISA gift cards. If you choose to enter, your email address will not be sold, kept, or stored; email addresses are used only to randomly draw the winners and notify them of their prize.

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