Is “cancer discrimination” a thing?

While in London, I had an experience at the hotel I was staying at that made me think about this question. Long story short, our 5-star hotel refused me any type of spa treatment because their policy is to only treat cancer patients (er, survivors?) who have been in remission for 12+ months. When I checked in, I booked an appointment and walked over to the spa the next day.  After filling out their standard health questionnaire, I was quickly told about this policy and was refused treatment. They also did this in the spa lobby, in front of other guests. I won’t share the name of the hotel on here, but here’s a picture of this beautiful but cruel hotel:

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When I explained that there is no remission for my type of cancer, they were awkward and simply apologized and said they couldn’t offer me a massage or facial. It felt like I had literally been booted out of the spa. I won’t go into details about what happened after I complained to hotel management, but it got me wondering – is cancer discrimination a thing?

What other areas of my life have I felt discriminated against because I have cancer?

IMG_2523When people learn I’m still on long-term disability, despite being off of chemo (for now), people ask why I’m not back at work. “Don’t you want to keep busy? Aren’t you bored? It must be nice to stay home all day and get a paycheck!” Yep, people really say these things! And trust me, it’s incredibly uncomfortable.

Sorry, but brain cancer doesn’t really show outwardly (aside from some awkward haircuts and a big gash from one side of my head to the other). I’d take going back to work over having a terminal cancer any day. I’m still on long-term disability for several reasons:

  • Headaches
  • Constant doctor appointments
  • Anxiety and stress that is out of this world
  • Trouble concentrating
  • Nausea
  • Fatigue
  • Trouble with depth perception

…I could go on and on, but although I might look fine, I am not ready to go back to work yet. And my medical team agrees. It feels pretty crappy when people judge me for still being home. (Also, I’m only 2 months off of chemo!)

I’m going to keep thinking about this, but for any fellow brain cancer fighters (or cancer fighters in general, for that matter), I’m very curious to hear your thoughts on this. Please feel free to leave a comment or message me.

Things that legitimately made me feel better post-cancer diagnosis

After an unsuccessful day of trying to catch a flight to Nashville (since our flight tomorrow is already cancelled due to the nor’easter headed our way), I can stay up late since I no longer have a 6am flight out. It also means I have time for a new blog post!

Packing for Nashville got me thinking about all the fun things I’ve done since I got my brain cancer diagnosis. I know “fun” and “brain cancer” in the same sentence sounds bizarre, but I’ve found myself living more now than I was before the diagnosis.

I’m in a much more positive head space these days, and I thought I’d share some of the things that helped me get here.

 

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Celebrating every little victory.

Stitches from surgery finally being removed. Final radiation appointment. First round of chemo completed. Unremarkable MRI scan. Increased platelets. Some victories are smaller than others, but celebrate them all! We usually have a fun date night or a nice bottle of champagne at home after a good MRI. After my stitches were removed, my husband brought home flowers. Even if it’s just a night in and you pick the movie, or if it’s something more extravagant like a spa massage, treating yourself when you have a victory will make you feel a lot better!

Joining a local support group.

At first I was hesitant to join a support group. Now that I’ve been to 6 months of consistent bi-monthly meetings, I can’t believe I waited as long as I did to join my group. And I’m lucky enough that my hospital has a brain tumor specific support group! Hearing other people with similar illnesses, and meeting people who have survived their tumor for 20+ years certainly helps me feel better! There are always a few sad stories too, but overall, joining a support group with people in an extremely similar situation has been enormously helpful. I’ve met some pretty awesome people, too!

Booking a trip. 

If you can’t fly, book a staycation! If you can fly (I was cleared 6 weeks post-surgery), plan a fun vacation somewhere that you love, or somewhere you’ve never been. My 30th birthday fell 4 months after my brain surgery, and so my husband and I went to my favorite place – Walt Disney World! We had a great time and for the first time since surgery, I felt truly happy and completely forgot about the hell that is brain cancer. Our little trip to Nashville that’s been delayed due to weather was booked on a whim. We’ve never been to Nashville together but both love country music, so we figured why not?!

Hitting the gym regularly.

I had to wait several months before I could get back into a gym routine (apparently after brain surgery, there’s a recovery period…who knew?!) but once I did, it made me feel normal again. It also made me feel physically stronger, which is something I desperately needed. Now, I get very agitated if I don’t have time to make it to the gym!

Picking up a new hobby (or getting back into an old one).

I’ve always been a creative person, and writing, painting and reading are all things I’ve always enjoyed. Prior to my diagnosis, I had been so caught up in the 8am-6pm working world that I didn’t have time for myself and I let those hobbies slide. After recovering from surgery, I started keeping a journal again for the first time in years, and also started reading again (I have some great recommendations if anyone is interested in cancer survivor stories). I’ve spent more time painting, and all of these activities are very soothing and are passions of mine. I’m also picking up a new hobby – blogging! It’s important to find hobbies to keep your mind off of the “cancer” (as much as possible, anyway) and to keep busy if you’re unable to return to work. Also, reading keeps your brain sharp!

 

Oh, and by the way – our flight has been rebooked so I think we will get to Nashville after all!

Five things not to say when someone you know is diagnosed with cancer

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I’m currently working on a fun blog post, but I wrote this one about a month after my cancer diagnosis (which is why it’s so negative) and thought this blog would be a good outlet for sharing it. Let me preface this by saying, there is no “right” thing to say when someone you care about is diagnosed with cancer. Everyone with cancer knows that. I know that. However, there are some things that you just shouldn’t say, even if you mean well (and everyone always means well).

Personally, I found the best thing for people to say was something along the lines of “Wow, that’s sh*tty news. If you need anything, I’m here.” Any sort of variation of that was always nice to hear and didn’t make me feel uncomfortable or awkward.

On the flip side, here are some things that I heard multiple times that were always uncomfortable and hard to hear:

A positive attitude beats cancer.

No, science and medicine beats cancer. Don’t tell someone who was just diagnosed with terminal brain cancer to “be positive”. We are going through a grieving process. Instead of grieving someone we care about, we are grieving ourselves. It is a strange experience, and coming to terms with a diagnosis like brain cancer is incredibly difficult. When someone who doesn’t understand what brain cancer is tells you to “be positive and you will beat it!” it is incredibly frustrating.

You need to fight this with all you’ve got.

Of course I will give it everything I have, but I can’t simply will this away. Me taking chemotherapy drugs is fighting this. Me going to MGH every single morning for 6 weeks straight at 7am for radiation treatments is fighting this. I’m sorry, but if I start to feel negative because I’m exhausted, sick, and in a bad mental state, telling me to “fight, fight, fight!” is not helpful. Trust me, I’m trying my best. Also, “fighting” implies that there’s a winner and a loser, and I don’t want to be a loser.

Stories of other people you know who beat cancer.

I can’t tell you how many times someone has told me their personal history with cancer after hearing my story. “I have a friend” or “my great aunt” or “my grandfather”…it’s super sad to hear these stories, but they always end with “and he/she beat it! You can too!”. Again, this is specific to brain cancer, but I wish I had something like thyroid cancer that has a high survival rate. Brain cancer is rare and is incurable. Hearing stories of other people beating cancer is definitely uplifting, but doesn’t make me feel particularly good about my situation. The one thing I’ve learned about cancer is every single case is unique. Someone with a grade 3 anaplastic astrocytoma (which is what I have) is battling a different disease if their tumor’s genetic makeup is different. There are SO MANY VARIATIONS of cancer.

Should you be drinking that glass of wine?

I should come with a warning sign… unsolicited medical advice is not appreciated. Trust me, everything I do, eat, drink, etc. has been run by my oncologist. You would be shocked at how often cancer patients communicate with their doctors. I have to notify them before a flight, before a long trip, if there’s any tiny new headache, bump or bruise…if I am doing something, you can be sure my oncologist knows about it. So please let me enjoy my glass of wine.

Well, you look great!

Thanks, but I don’t feel great. Brain cancer doesn’t really impact how I look aside from some hair loss due to radiation. I’ve had so many people say “wow you don’t even look sick!” …Not helpful. I’m tired, agitated, and my anxiety level is through the roof. So when you see me after a while and say “you look great!” when I feel like absolute crap, it’s just not helpful.