Ultimate Guide: Helping a Loved one with Brain Cancer

Ultimate Guide: Helping a Loved one with Brain Cancer

As a brain cancer survivor, sometimes I know I need help but I’m so exhausted I don’t know what to ask for. I know I’m not alone in feeling this way, so I’ve created this Ultimate Guide to Helping a Loved One with Brain Cancer.

It’s sharable, so the next time someone asks how they can help, you can just pass ’em the link. Easy peasy. Or, if you are the one trying to help but are unsure what to offer, this list can give you ideas too.

Article: 12 Tips for Long-Term Disability Recipients

Helping a Loved One with Brain Cancer

1. Buy groceries.

With the wonders of modern technology gifted grocery orders are possible—even if you don’t live close by. So whether you make a personal delivery or gift an online order, fresh meals and snacks will be handy for the patient and caregivers.

Ideas for your shopping list include: fresh food, fresh produce, prepared meals from the deli, hydration powders, protein shakes, favorite treats, bottled water, and bedside snacks.

2. Mow the lawn.

This is a no-brainer. Even if technically someone in the household can mow, it doesn’t mean their energy isn’t consumed by more urgent matters. If you can’t mow either, you can talk to local mowing companies or neighbors.

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3. Bake something.

Store bought baked goods are fine sometimes. But homemade banana bread and cookies are seasoned with love. Don’t overthink it too much. If chemotherapy and radiation make things taste weird, goodies can be frozen or shared with caregivers, family members, and visitors.

4. Send gift cards.

This is particularly helpful if the brain cancer patient has to travel or commute to treatment. Gift cards for restaurants and gas are ideal in that situation. Grocery store, Amazon, and big box store gift cards that can be used to order necessities online are also helpful.

5. Support your loved ones hobbies.

You don’t have to spend money on craft supplies (though that is certainly an option). Watching a movie, reading a blog, or simply spending time watching birds at the feeder can remind someone they are loved.

6. Read their blog.

Reading and commenting on patient blogs can help brain cancer patients maintain connection when that’s not otherwise possible for them. And, if the post frequent updates, it’s a way for them to keep people in the loop without having a million different conversation.

Blog: It’s Not the Cancer, It’s the Chemo

7. Send a package.

Not every gift has to be brand new. Some of the most helpful things you can gift a loved one with brain cancer are things you received during your own illness. were second-hand treasures. Getting a surprise in the mail can always brighten someone’s day.

8. Help make their home more accessible.

Not everyone can install a walk-in tub, but little fixes can be super helpful. Install a grab bar or reorganize a bedroom. If you can turn a screwdriver or move furniture, your services are so valuable!

9. Share, start, or donate to a fundraiser.

People, even strangers, can help by donating to medical fundraisers. But sending thank yous and sharing links are helpful to the patient too. Cancer is expensive to treat, especially in the US. If you know, you know.

10. Share a wishlist.

Setting up a wishlist makes it easy for others to give and receive. They can be shared through social media, and patients can get what they need easily.

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11. File taxes.

If you’re not confident doing taxes or the patient’s taxes are too complicated, you can always shuffle those piles of documents to a tax preparer so your loved one gets a reprieve from the unpleasantness.

12. Fill out forms.

Being sick and filling out paperwork for, well, anything is not an enjoyable experience. Whether it’s new patient forms or disability claims, it’s helpful for someone else to wield the laptop or the pen.

13. Become a patron.

Assuming, someone has a Patreon account, this can be a wonderful way to show support.

14. Leave a supportive note or comment.

You know how parents leave encouraging notes on their kids lunch bags? That. But on chemo snacks and in tote bags being carried off to the infusion clinic.

15. Visit.

Exercise caution here. Contagious illnesses complicate this one, I know. But an occasional short visit or an overnight stay can remind a brain cancer patient she’s living, not dying. 

16. Share what you create.

Whether you paint, make TikToks, or build furniture, sharing in-person or online can be a pleasant distraction from a long day of thinking only about the cancer stuff.

17. Offer a warm blanket.

For MRIs or infusions at the hospital, the nurse or tech always offers a warm blanket. But that can totally be done at home. Throw a blanket in the dryer for a warm and gentle little snuggle.

18. Complete a chore.

Maybe you can patch and repair tiles or take the garbage cans to the curb. Stuff that desperately needs to be done but patients and caregivers don’t have time or energy for actually make great opportunities to help.

19. Support a caregiver.

Supporting a caregiver is supporting the patient. Whether you can give someone a few hours off or send a little treat, it’s a great two-for-one way to show you care.

20. Give them weed.

Void where prohibited by law.

Recipe: Cannabutter Brownies

21. Get angry or swear.

This won’t be for everyone, but bad news and rough days are abundant when you’re living with a brain tumor. You can validate that by skipping the platitudes and keeping things real. Dropping an appropriately placed F-bomb can be loads more helpful than saying “at least you don’t have…”

22. Make a sign.

A woman made a loved one a sign that just said “tumor” when she was diagnosed. The patient flashed it anytime a full explanation required too much energy. Any shorthand is helpful though, it doesn’t necessarily need to be a sign.

23. Be forgiving.

Some meds make patients irritable, and a lack of sleep or the inability to do things like “before” can make tears come at the slightest provocation. Grace is always helpful.

24. Wear a mask.

Covid made people more aware cancer patients endure treatments that weaken immune systems. They don’t want Covid-19, the flu or the common cold. Wearing a mask protects cancer patients from a plethora of medical complications.

25. Get vaccinated.

See 24.

26. Schedule a game night.

It’s good for the soul to have some stress-free fun on a regular basis. Schedule an in-person board game or a standing online video gaming session. It’s good to have things to look forward to. 

27. Pet sit.

Treatment might be 3 hours away from home in the middle of the day or a weeks-long overnight affair. If you can fill the cat’s food bowl and take the dog for walks, you can be a huge help.

28. Research a major purchase.

Sometimes buying new, big-ticket items takes research. Making or researching recommendations for a big purchase—from a robot vacuum to a refrigerator—is a huge load off.

29. Assume the thank you is implied.

Sometimes life’s proverbial fires get in the way. Don’t take offense if something gets missed or just plain forget (because, hello chemo fog).

30. Enable a hobby.

If the brain cancer patient doesn’t already have a hobby to distract them while they’re feeling low, suggest one. Help them discover something new that they enjoy and you’re helping a loved one with brain cancer.

31. Vote.

This is specifically meant for a U.S. audience, but I’m sure it applies elsewhere too. Whether your views are liberal, conservative, or somewhere in between, it doesn’t matter so much. Nothing is more harmful to a patient than apathy.

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32. Drop them off at the door.

“Take the stairs” and “park farther away from the door” don’t apply. Some days and weather conditions require that a cancer patient get dropped off.

33. Shop for them.

Some people think shopping is enjoyable and returning items is no big deal. Those people are the best people when cancer has patients stuck at home.

34. Send cat photos and funny memes.

Does this need explanation? When you don’t know what to say to cheer up someone with cancer, try this.

35. Advocate.

You could go to an appointment with a patient or run a 5k with the patient’s name on your shirt. It all matters. Whether you know someone who lacks the resources to deal with the healthcare system or not, you help today’s patients and everyone who follows. And that’s really helping a loved one with brain cancer.

Brain Cancer Rant

Brain Cancer Rant

WARNING: Incoming brain cancer rant.

You know what I’m pissed off about right this second? I should be planning something fun to do with Dan before chemotherapy starts, and instead I’m fighting insurance to get them to pay for the roughly $10,000 in temozolomide I’m going to need.

This is seriously getting so old. I’ve had so many different kinds of health insurance during this years-long ordeal with the brain tumor: employer sponsored, ACA marketplace, Medicaid, and Medicare. And not one of them has ever covered all they claimed to.

I’ve lost count of how many times an “oh yeah, that’s definitely covered” has turned into “oops, nope, we won’t be paying for that” right at the buzzer.

And let’s not forget that year-long fight with Lincoln Financial Group that required lawyers and multiple appeals to get the company to pay my disability insurance like they promised they would. Being without that supplemental income for 12 months didn’t exactly do great things for my bullshit credit rating.

“Sorry, you can’t buy a new car to get to your cancer treatments because you got cancer, your health insurance carrier refused to pay for a lot of stuff, you have outstanding hospital bills, a laughably small income, and now we’re pretty sure you’re a high-risk for defaulting on a mortgage. Maybe if you were better with money and didn’t buy so many lattes.”

Guys, I totally should have done a better job managing all that money I’m not allowed to have. It’s true.

Anyway, I’d also like to get my house somewhat cleaned and organized before my day-to-day is just me throwing up and handing the vomit bag to Dan. But I’m right smack dab in the middle of Can’tlandia right now. The unsick will think I’m exaggerating and lazy. That I could fold the laundry if I wanted to bad enough. Fact is they just don’t know yet. They don’t know what it’s like to be physically and mentally incapacitated by Overwhelm™. What I characterize as executive dysfunction on dexamethasone.

That’s a whole other thing. Worrying about being put on dex again. Keeping my fingers crossed I don’t need it, because my legs will just buckle if I put on any more weight.

Okay, that’s all for now. Don’t let my pissy sarcasm distract from how grateful I am for the outpouring of support I’ve received since my announcement. Sometimes you gotta vent the Instant Pot. Know what I mean?

More info and/or ranting to come, I’m sure.

Brain Cancer Update and House Plans

Brain Cancer Update and House Plans

Before the brain cancer update, first things the first: Chapter 23 of Who You Gonna Believe is up for Patrons. Read it now.

The past couple of weeks have been eventful, just not so much in my online life. Mom came to our house here in Urbana to help us with landscaping. (And when I say helped, I pretty much mean she did everything because she is the best mom on the planet.)

There are plans in the works to get the shutters and trim on the house painted, but first: estimates. It really makes me happy to look at the prettied-up yard this year. Because last year during the pandemic, we didn’t have the money or motivation to do much of anything with the yard.

After Mom spent a few days here helping us out, I went back to stay with her for a bit. One of my brothers and I worked on getting more things sorted at her house. My Dad had a pretty ginormous model railroad thing going in the basement, so Ryan worked on that while mom sorted documents and I shredded the stuff that couldn’t be recycled.

It was hard work in that it tugged a lot of nostalgic strings, but it was good to get Mom several steps closer to a more manageable household. One evening she and I assembled a lateral file cabinet together. The instructions were terrible (there were no words, only pictures) but after two hours, we got it done and she made me a root beer float as a reward.

We also talked more about Dan and I moving to be closer to her and my brother and sister-in-law, and we are thinking the best idea might be to make a separate living space by finishing Mom’s basement. My brother the architect is willing to help us with plans. Also, because Mom’s place is only about 30 minutes from St. Louis, it would mean we’d be closer to Siteman Cancer Center if/when I need treatment again.

Speaking of the cancer stuff. I did have a consultation with a neuro-oncologist at Siteman last week, and the news actually brought me a little relief. The doctor said that it’s not clear whether the growth they’re seeing on my recent MRIs is cancer growth (if so, I’m a little ahead of schedule based on what they know about my kind of tumor) or if it’s radiation necrosis (if so, the timeline seems to fit).

At the moment, the only way to be certain is for them to biopsy the area they are seeing and look at the cells under a microscope. Having had one brain surgery already, I’m not really excited about the idea of another one. And because of the location (my medulla) doctors aren’t really eager to start digging around in there either. For now all the doctors involved in my case seem to be recommending another MRI in three months.

I think a huge factor in waiting is that I’m not experiencing new or worsening neurologic symptoms and the growth is small. With a little time it could become more obvious which treatment plan is needed, and in the meantime I can live my life knowing that there are treatments available for either scenario.

Anyway, I’m still a little uncertain when my next Zentangle video will be as I still have a lot of to-do’s that take priority. But I am feeling the itch to draw again and set up my bullet journal for May (I skipped April) so that I can keep things sorted a little better in my mind.

***

WELL FUUUUUUUUUUCK. It’s a couple of hours later, and I just heard that they want me to do low-dose chemotherapy again. I mean, it makes sense. I don’t disagree with their recommendation. But I was just starting to see some daylight after losing my dad, and now I’m preparing to be broke, fight insurance all over again, and just generally have no energy to even wipe my own ass.

Jumping Cancer Hurdles: Brain Cancer Diaries Interview

Jumping Cancer Hurdles: Brain Cancer Diaries Interview

Hello, everyone! In lieu of my typical written post today, I’d like to share a video with you. A couple of weeks ago, Rudy Fischmann of Brain Cancer Diaries and I chatted about what it’s like to live with a brain stem tumor for his vlog series.

We talked a little about my road to diagnosis, the hassles of insurance, and also about the things that keep us going and help us get over the hurdles that brain cancer has put in our way.

Take a few minutes to browse the other episodes on the Brain Cancer Diaries YouTube channel — there’s a ton of great stuff there. Rudy interviews other cancer patients (not just brain cancer patients) and gives you an inside look. If you live with cancer too, I promise you’ll find some comfort in the shared experiences of Rudy and his guests. And if you don’t live with cancer, you’ll gain an appreciation for all the ways the Big C changes a person’s life — for good and bad. Perhaps you’ll even be better equipped to support your friends and family staring down their diagnoses.

Anyway, I am in awe of the fantastic, creative job Rudy does editing his videos, and this one is no exception. The amount of time and energy that must go into the content he creates for the world! Support him and his channel by liking, following, and subscribing to Brain Cancer diaries on YouTube and Instagram. It’ll make you a better person.

How to Help: Fighting Brain Cancer and Lincoln Financial Group

How to Help: Fighting Brain Cancer and Lincoln Financial Group

As the news of my brain cancer and Lincoln Financial Group horror story garners interest, more people are asking how they can help—even complete strangers. I’m really grateful, but not always sure what to suggest. I figured if I created a list, people could pick what works best.

Donations and Financial Support

Affiliate/Ad Support

Social Media Platforms

  • Follow me on Twitter @EmilySuess
  • Follow me on YouTube
  • Subscribe to this blog using the form in the sidebar
  • Share this blog with someone
  • Follow me on Patreon (You can follow my page even if you can’t make a pledge)

Take Action

  • Contact me if you or someone you know has also been harmed by Lincoln Financial Group, Dr. Brian L. Samuels, Dr. Lee P. Hartner, Professional Disability Associates, or Reliable Review Services.
  • If your employer offers Lincoln Financial Group insurance policies and/or financial products, ask them to switch. Tell them you don’t want to be ripped off.
  • Send an email to Dean J. Larry Jameson. (Copy & paste, takes 30 seconds.)
  • Write a letter to the editor of your local paper.
  • Ask a journalist to cover the long-term disability industry.

Share Your Stories

  • If you work for (or used to work for) Lincoln Financial Group, Professional Disability Associates, or Reliable Review Services and have first-hand knowledge of business practices, contact me or reach out to ProPublica.org.
  • If you have a related story you would like me to share, whether you have brain cancer or another disability or illness, send me the link.
  • If you or someone you know has a story that needs to be told but need a place to publish it, contact me.

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