Knowing When to Ask for Help

Growing up independent

My parents split up when I was around four years old. Dad went to prison for robbery. My mom would be holding my baby brother and me in the car while, unbeknownst to her, dad was “knocking” the place off.

After my dad ended up in prison, my mom was left to raise us on her own until she remarried. I was raised in a very proud family, and we were taught to work hard. If you wanted more, work more hours.

I remember my mom telling me a story about how she had to take one government assistance check for help. She was so embarrassed that she went to another town to cash it, and never took another. After that, she got a job at a factory and worked there until she retired.

When I was diagnosed with glioblastoma (GBM), I automatically wanted to just handle it by myself. I viewed asking for help so negatively because of the way I was raised. But eventually, I realized that it’s okay to ask for help.
 

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Reaching out for help

As a patient living with GBM, there are times I know I need help. As I’ve adjusted to using Optune, I’ve learned what I can and can’t do, what time of the day is best to do certain things, and when my next array change is going to be.

Before starting chemotherapy and radiation, my energy levels were on a gradual slope downward as I worked. Returning to work after those treatments, when my energy starts to get low, it’s like a sudden drop-off. When I am done, I am done.

I look at asking for help from the standpoint of, “I don’t want to ask unless absolutely necessary,” so I plan accordingly. I plan out my day, ensuring I have the necessary Optune equipment, making those times I need to ask for help rare.


Giving back

One thing I like to do is stay focused on helping other people. Just because I have cancer and use Optune doesn’t mean I can’t help others. Some people feel sorry for themselves because of the seriousness of GBM, and it is very serious. However, closing themselves off to anyone and anything can be a very dangerous way of living. My pastor had a saying, “Everybody needs help sometimes, and no person is an island unto themselves.” I have spent my entire life helping others, and now when I need help, people fall over themselves to come to my aid.

My caregiver Linda and her husband Dave have been my friends for more than 40 years. She has been changing my arrays for several years now. In return, I mow their half-acre lawn and help them with projects in their home. I do what I can, and they understand when I can’t do more.

I have two main caregivers trained by my Device Support Specialist (DSS). I have several others I’ve trained myself. Linda and my son, Justin, were trained by my DSS when I first started with Optune. My son and his family live 1.5 hours away so he only changes my arrays when I am visiting them. Linda, on the other hand, lives a block away, so she does it three times a week.

When I was first diagnosed, right after surgery when I couldn’t drive, my son would go get groceries once a week for me. One time I wanted some snacks, so I decided to ride my bike to the little store in our town. While riding there, I was attacked by a pit bull. He lunged at my face, and I dodged, but he landed on my front tire. I ran him over and almost fell, but the dog was fine and just ran off. I was terrified. When Linda and Dave heard about it, they told me no more bike stuff—if I needed something from the store, they would drive me.

Also, when I was first diagnosed but before I retired, I was doing an electrical job a few blocks away in our town. The job turned out to be more than I had expected, and I was completely worn out. I knew I couldn’t finish the job without help. I called Linda to ask if she could help me get the equipment back to the van. She came right away with her college-aged daughter to help, and they were lifesavers.

Another quote I like to live by is from a movie called The Kid, and in the movie, a news reporter tells Bruce Willis’s character, “Never be afraid to ask for help, you just might get it.”
 
Topics: Daily Life with Optune, For Caregivers
By Chuck, Optune® Patient

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What is Optune® approved to treat?

Optune is a wearable, portable, FDA-approved device indicated to treat a type of brain cancer called glioblastoma multiforme (GBM) in adult patients 22 years of age or older.

Newly diagnosed GBM

If you have newly diagnosed GBM, Optune is used together with a chemotherapy called temozolomide (TMZ) if:

Recurrent GBM

If your tumor has come back, Optune can be used alone as an alternative to standard medical therapy if:

What is Optune Lua approved to treat?

Optune Lua is a wearable, portable, FDA-approved device indicated for the treatment of adult patients, with unresectable, locally advanced or metastatic, malignant pleural mesothelioma (MPM) to be used together with standard chemotherapy (pemetrexed and platinum-based chemotherapy).

Who should not use Optune for GBM or Optune Lua for MPM?

Optune for GBM and Optune Lua for MPM are not for everyone. Talk to your doctor if you have:

Do not use Optune for GBM or Optune Lua for MPM if you are pregnant or are planning to become pregnant. It is not known if Optune/Optune Lua is safe or effective during pregnancy.

What should I know before using Optune for GBM or Optune Lua for MPM?

Optune and Optune Lua should only be used after receiving training from qualified personnel, such as your doctor, a nurse, or other medical staff who have completed a training course given by Novocure®, the maker of Optune and Optune Lua.

What are the possible side effects of Optune for GBM and Optune Lua for MPM?

The most common side effects of Optune when used together with chemotherapy for GBM (temozolomide or TMZ) were low blood platelet count, nausea, constipation, vomiting, tiredness, seizure, and depression.

The most common side effects when using Optune alone for GBM were scalp irritation (redness and itchiness) and headache. Other side effects were malaise, muscle twitching, fall and skin ulcers.

The most common side effects of Optune Lua when used together with chemotherapy for MPM (pemetrexed and platinum-based chemotherapy) were low red blood cell count, constipation, nausea, tiredness, chest pain, fatigue, skin irritation from device use, itchy skin, and cough.

Other potential adverse effects associated with the use of Optune Lua include: treatment related skin irritation, allergic reaction to the plaster or to the gel, electrode overheating leading to pain and/or local skin burns, infections at sites of electrode contact with the skin, local warmth and tingling sensation beneath the electrodes, muscle twitching, medical device site reaction and skin breakdown/skin ulcer.

Talk to your doctor if you have any of these side effects or questions.

Caution: Federal law restricts Optune Lua to sale by or on the order of a physician. Humanitarian Device. Authorized by Federal Law for use in the treatment of adult patients with unresectable, locally advanced or metastatic, malignant pleural mesothelioma concurrently with pemetrexed and platinum-based chemotherapy. The effectiveness of this device for this use has not been demonstrated.

Please click here to see the Optune Instructions for Use (IFU) for complete information regarding the device's indications, contraindications, warnings, and precautions.

Please click here to see the Optune Lua IFU for complete information regarding the device's indications, contraindications, warnings, and precautions.

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What is Optune approved to treat?

Optune is indicated to treat a type of brain cancer called glioblastoma multiforme (GBM) in adult patients 22 years of age or older.