Knowing when to ask for help
By Chuck, Optune® Patient Ambassador • 4 min read
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.
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.
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.”
Important Safety Information
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:
- Your cancer is confirmed by your healthcare professional AND
- You have had surgery to remove as much of the tumor as possible
If your tumor has come back, Optune can be used alone as an alternative to standard medical therapy if:
- You have tried surgery and radiation and they did not work or are no longer working AND
- You have tried chemotherapy and your GBM has been confirmed by your healthcare professional
Who should not use Optune?
Optune is not for everyone. Talk to your doctor if you have:
- An implanted medical device (programmable shunt), skull defect (missing bone with no replacement), or bullet fragment. Optune has not been tested in people with implanted electronic devices, which may cause the devices not to work properly, and Optune has not been tested in people with skull defects or bullet fragments, which may cause Optune not to work properly
- A known sensitivity to conductive hydrogels (the gel on the arrays placed on the scalp like the ones used on EKGs). When Optune comes into contact with the skin, it may cause more redness and itching or may rarely cause a life-threatening allergic reaction
Do not use Optune if you are pregnant or are planning to become pregnant. It is not known if Optune is safe or effective during pregnancy.
What should I know before using Optune?
Optune 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.
- Do not use any parts that did not come with the Optune Treatment Kit sent to you by Novocure or given to you by your doctor
- Do not get the device or transducer arrays wet
- If you have an underlying serious skin condition on the scalp, discuss with your doctor whether this may prevent or temporarily interfere with Optune treatment
What are the possible side effects of Optune?
The most common side effects of Optune when used together with chemotherapy (temozolomide, or TMZ) were low blood platelet count, nausea, constipation, vomiting, tiredness, scalp irritation from the device, headache, seizure, and depression. The most common side effects when using Optune alone were scalp irritation (redness and itchiness) and headache. Other side effects were malaise, muscle twitching, fall and skin ulcers. Talk to your doctor if you have any of these side effects or questions.
Please click here for the Optune Instructions for Use (IFU) for complete information regarding the device’s indications, contraindications, warnings, and precautions.
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