The taxi diaries

12:15 AM, Friday night, in a taxi

Taxi Driver: Are you coming home from work right now?

Steph: No, I was at a party.

TD: Oh.

S: I’m actually not working right now.

TD: Oh. What did you study in school?

S: English. Not very useful. Do you like your job?

TD: Nope.

S: Oh, that’s too bad. What would you rather be doing?

TD: I used to do something with pharmaceuticals. My old company X is being bought by company Y.

S: Oh yah, I know those companies.

TD: Really?

S: Sure. I’ve taken my share of pharmaceuticals.

TD: You take pharmaceuticals?

S: Not as many now, but a bunch in the past.

TD: Oh, what were you taking them for?

S: Cancer.

TD: WHAT?! Cancer?! Oh my goodness. You are so young!

S: Yepper.

TD: Sorry for asking you about this.

S: It’s fine, I talk about it all the time.

TD: What kind of cancer?

S: Breast cancer.

TD: WHAT?! Breast cancer!!! NO! WHAT?!

The taxi driver turns on his interior light and spins around in his seat to get a better look at the young cancer patient.

TD: Oh my goodness. You are so young! Wow. Wow. Wow.

S: It’s okay. I’m doing fine.

Steph marvels at the fact that she now has to calm down a taxi driver about her having cancer.

TD: So is there some kind of genetic thing?

S: Not that they know of. But my dad had breast cancer, so probably.

TD: Wait, WHAT?! Your dad? You mean he had prostate cancer?

S: No. Breast cancer. Male breast cancer. It’s rare, but it happens.

TD: Oh my goodness. Wow. I can’t believe this. Wow.

S: Yepper. That’s why I have this short hairdo.

Taxi driver spins around in his seat again… while driving.

TD: You had the chemo?!

S: Yep.

TD: Oh my. Gosh. So what are you taking now?

S: Tamoxifen.

TD: Oh, Tamoxifen. Okay. Did they give you antioxidants?

S: Uh, no.

TD: Okay. You have to eat berries. Lots of berries.

S: I eat berries every day.

TD: Good. Doesn’t matter what kind of berry. Black, blue, strawberry. Every day. You have to.

S: Sure.

TD: And tomatoes! Are you eating your tomatoes?

S: Yep. I eat a ton of tomatoes.

TD: But not raw. You have to grill them on the barbecue.

S: Sure thing.

TD: And you have to make sure you eat the seeds inside the tomato. That’s the important part. Every day, you need to eat the seeds.

S: Uh huh.

TD: And the other thing is bananas with milk. Our bodies are full of electricity. Like when you rub a comb on  your hair and it stands up.

S: Static electricity.

TD: Yes! That’s it. We’re all just electricity. So you have to eat the bananas in the milk. Not so many bananas every day. But just one banana with the milk.

S: I eat a lot of bananas so I think I’m good.

TD: Just do all these things and you’ll be fine, I promise. It’s really just about a lifestyle change.

S: Okay, yep, sure, thanks.

The taxi pulls up in front of the house.

TD: I wish you the best of luck.

S: Thank you! I appreciate it.

TD: And I hope to see you soon. Do the things I said and then you’ll see me again and tell me I was right.

S: Sure! Have a good night! BYE!

Cancer break

Lately I’m finding it very difficult to write about cancer stuff. I sit down at my computer, almost every day, feeling inspired to write a blog post or work on this “book” that I haven’t touched or really thought about in a long time. And then quickly, the motivation goes right out the door. I put on another episode of Scandal and instantly forget about whatever it was that I felt I needed to get down on paper (and by “paper” I mean “computer”… but that obviously sounds way less romantic and writer-ish).

I’m not sure why this has been happening, but I think much of it is due to the fact that I am majorly cancer’d out. I have not had one day where I haven’t had to think or speak about cancer in a very long time. It is exhausting thinking and talking about such heavy things all the time.

I keep trying to have a day where I don’t think about cancer once the entire day, but I have not come close to succeeding. People say that eventually the day comes where you realize, “Hey, I haven’t thought about cancer in a week!” Honestly, I can’t imagine that really happening. I might think about it less on certain days than others, but the idea of it being entirely absent from my thoughts just seems impossible right now. It is such a major part of my life. I didn’t invite it in, but there it is, and its presence is constant.

I read up on the “cancer news” all the time. It might not be the best idea, but I really can’t help it. This is my universe. You might work in marketing, or finance, and you probably keep track of what is going on in those sectors so you can stay up to date and feel in the loop. Well, it is the same for me. My world just happens to be a bit less flashy and a bit less “something to talk about around the water cooler.” But I like to keep informed. I want to know what’s going on. This is my life, and my health, after all.

Cancer is not just something I had, or something that is in the past. It has become a huge part of my life. I used to get emails from people asking me for movie or music recommendations. Now I get emails asking for advice about getting through chemo and radiation. This has become my new area of expertise. When people have a friend who is diagnosed, they send them to me. The cancer guru. The Dear Abby of planet cancer.

And really, I’m okay with it. I love helping people, however I can. I like reading about clinical trials and drug advancements and understanding a very complex world that until recently, I knew very little about. I am a passionate person and I become highly invested in whatever it is I am currently working on or learning about. And, as unfortunate as it may be, my “job” and my “work” has been cancer for over a year now. I am drawn to books and movies about cancer. I like talking to people about their own experiences with cancer. I suppose, like anyone, I want to feel like I belong. And as much as I want to just be a “normal” young woman, thinking about things like work, and social events, and all that regular-people stuff… that is not my life. It is part of my life, sure. But so is cancer. There it is, and there it will always be.

But all that to say that sometimes, I just need a break. Sometimes I am literally so tired from thinking about it and writing about it, living and breathing it, that I need to lie down and take a nap. Sometimes I just need to turn my brain off, from the research, the statistics, the drugs, the fear, and the reality. Sometimes I just need to turn on the TV and watch The Bachelor, which is pretty much the opposite of thinking about cancer. So that’s what I’m going to do. I’m going to watch The Bachelor premiere (and you should too, so we can talk about it) and I’m going to give myself a whole hour, free from cancer, free from the heavy stuff. You might need a break from your screaming baby. Or your beeping Blackberry. Or your cancer. Whatever it is… sometimes, we all just need a little break.

Oh lordy, now I really wish I had a Kit Kat.
Oh lordy, now I really wish I had a Kit Kat.

Helping a friend in need

I’ve often thought of sharing a list of “what not to say to someone who has cancer.” However, I’ve seen many of these lists before and I know they can be somewhat harsh and make people feel like there is not a single thing they can do that is right when someone they care about is sick. So instead, I think it might be more productive to do a “how to help someone who has cancer” list.

1. PRESENTS

Anyone who has been following along since the beginning of the blog knows that I loooooved getting gifts while undergoing cancer treatment. Presents are awesome even when you’re feeling great, but they’re extra awesome when you’re feeling lousy. Sometimes the only thing that would make me smile on a terrible day was hearing the doorbell ring and seeing a box waiting for me. There was one day when I had multiple delivery trucks lined up in front of my house, and I felt extremely important. It didn’t even matter what the gift was, if it was something small or large, useful or just entertaining. It was the thought, and the unexpected surprise on an otherwise gloomy day.

Nothing sweeter than the sight and sound of that magical brown truck.
Nothing sweeter than the sight and sound of that magical brown truck.

So if you know someone who is dealing with an illness, send them something. Show them you’re thinking of them. Oh, but don’t expect a thank you card, because they have cancer, and don’t have the energy to deal with rules of etiquette.

2. CALL/WRITE/TEXT/MAIL

I know some people feel like they don’t want to burden someone who has cancer and sometimes they think that leaving them alone is the best strategy. I can tell you that in most cases, this is not true. Sure, you might occasionally say the wrong thing, or you might write an email or leave a voicemail that never gets read or heard because the person is ill and exhausted and can’t keep track of anything. But I will tell you that silence or absence from a friend is a lot more hurtful than any dumb thing you could possibly say or do.

That about sums it up.
That about sums it up.

So send your friend a message to tell them they’re on your mind, and that they don’t need to respond. And don’t only reach out at the very beginning when you’re initially reacting to the shock of it all. Show that you’re still there, weeks, months later. Because that’s when it gets really hard. And really lonely. A cancer patient can never have too many friends.

3. SEND FOOD

There were many, many days where I simply did not have it in me to get groceries or make a half-decent meal. There were many days I couldn’t stand up for more than a minute, and standing is really helpful when grocery shopping or cooking. Apart from physical limitations, I also did not have the mental capacity to think about food and putting ingredients together.

Life for me and my husband was filled with stress 24/7 and there wasn’t a single second where we weren’t completely exhausted. People who sent us food were literally our life savers. We had some friends and family who would make complete meals that we could keep in the fridge and live off for an entire week. We had other friends send us gift cards for a food delivery service where we could order several flash-frozen meals and serve them up whenever we needed to. So if your friend is ill, send them food. Don’t ask what you can do. Don’t ask if they need anything. Don’t make them think. Just do it. Send food. And they will eat all of it. And they will love you forever.

This bib is kind of offensive, but also kind of awesome, no?
This bib is kind of offensive, but also kind of awesome, no?

4. LET THEM BE A BIG, WHINY, CRYING BABY

When I was feeling like I wanted to die, it was very helpful to be around people who let me feel that way. People who would let me cry, let me scream, let me blubber this is so unfaaaaair, I hate my liiiiiiiiiife, I hate everyoneeee, waaaaaaah JUST KILL ME NOWWWWW! I had a lot of these moments, and they were not my finest, but that’s just the kind of mood I was in while I was sitting around, bald, trying not to puke, staring out the window. The last thing I wanted to be told was to cheer up or keep a positive attitude or any of that bullshit. The best thing you can say is “this really sucks and I hate that you’re going through this.” Nothing you can say or do can make anything better. The best thing you can do is let your friend scream and cry and feel all the feelings they need to until they finally pass out from exhaustion.

I feel ya, Johnny, I really do.
I feel ya, Johnny, I really do.

I know, it’s not really fun being friends with someone who has cancer, right? But having cancer is actually worse, so suck it up, be a pal, and sit with your friend while she drips snot all down her face and makes morbid comments about death and funerals. Yay friendship!

5. DON’T OVERSTAY YOUR WELCOME

This one is pretty simple, and you would think obvious. But for some people, it’s not, so I think it’s worth mentioning. When I was stuck at home for what felt like a million years, it was nice having friends and family visit. But it would take about ten minutes of socializing for me to feel like I needed a nap most days. I never want to tell anyone to leave, because it makes me feel like an ungrateful person. So don’t make me say it. Just leave!

The best friends are the ones who come (only after asking if it’s OK first), say hi, stay for a short visit, and then say “you should rest, I’m going to go now” without making me say it. Because truthfully, no one undergoing chemo is listening to more than 1/4 of anything you are saying to them. For me, I spent most of my social encounters thinking, How long until I can crawl back under my blanket and watch Marry Poppins while I cry without anyone seeing me?

Know your friend’s limits and respect them. Or, if you’re my brother and his girlfriend, you can just wait until I scream, GET THE HELL OUT OF MY HOUSE, which happened on more than one occasion. But we’re all still friends. I think.

 

Steph’s Cancer Tips – Part II

Time for some more tips! To read the first installment, click here.

Entertaining Yourself

If your cancer treatment drags on for awhile, as mine did, you will find you have a considerable amount of downtime. You will likely think to yourself, “Great, this will be the perfect time to read those huge novels I haven’t had time for and finally watch the entire box set of The Wire.” WRONG! So very wrong. Here’s the thing: your “downtime” during cancer treatment is not fun. It’s not relaxing. In my case, most of the time I felt like absolute crap. There is no way I could have focused on a book. Even reading a tabloid was challenging for me at times. And stimulating television or cinema? Don’t even think about it. When you are in pain and can barely lift your head up, you don’t want to watch anything thought-provoking, intelligent, or heavy. There is a reason that I watched two entire seasons of The Real Housewives franchise while I was doing chemo — the show is complete garbage and requires a very low level of mental acuity to follow.

Good chemo movie
Good chemo movie
Bad chemo movie
Bad chemo movie

There were many films I thought I would watch while I was sick. Classics, documentaries, award-winners. WRONG AGAIN! I found the only DVD’s I wanted to watch were those I had seen a thousand times and provided comfort. Back to the Future, Edward Scissorhands, Big, Pretty Woman, Hook, every Disney movie ever. It didn’t matter if I passed out in the middle of the movie or just closed my eyes while I listened to the buzz of the TV.  I didn’t need to focus and pay attention to what was going on. The purpose of TV and movies was 100% distraction. A way to pass the hours, in hopes that the days would go a little bit faster. A small respite from reality.

So in conclusion: Honey Boo Boo = Good. Six Feet Under = Bad (although it is my favourite show of all time, but it’s about the last thing I’d recommend you watch while doing chemotherapy). Dumb and Dumber = Good.  Memento = Bad. Got it? Good.

Dealing with stupidity

If you have cancer, chances are, people are going to say some pretty dumb things to you.

People will ask you details about your prognosis, or say thing like “You’re going to be fine, right?” They will compare you to their 95 year-old great grandmother who had a small non-invasive cancer that was 100% different from the cancer you have. They will tell you stories of someone they knew who had cancer, that end with the person dying. They will make awkward comments about boob jobs, insinuating that a regular boob job is in any way similar to having your cancerous breast surgically removed. They will try to show you they know “exactly how you feel” by comparing your cancer to a very temporary, highly non-threatening malady they suffered from 5 years ago. They will say, “I know you are going to survive this” even though you are painfully aware that you might not survive this and that it has nothing to do with your positive attitude, or lack thereof.

I’m betting this lady has said some dumb things in her time.

Yes, people say some dumb things. This is because most people have no idea what to say or what to ask when someone has cancer. There is no guidebook. It’s understandable that people will say the wrong thing and mess up from time to time, as I’m sure I have many times in the past, pre-cancer. You have to give people a break. 99% of them have good intentions and have no idea that what they’ve said might be hurtful/anxiety-provoking/insensitive/ignorant.

Of course, if someone says something extremely stupid or blatantly offensive, you can always kick them, or take the high road and explain to them why what they’ve said has upset you. But all of that will get exhausting, fast. I just choose to smile and nod. That is usually the answer to dealing with most things: Smile and nod.

Using the Internet as a resource

Ooooh this is a tricky one. I love the internet. I love having information at my fingertips. But as anyone who has ever Googled a health issue knows, the world wide web can be a very dangerous place. So here is my advice to you: TREAD LIGHTLY. Seriously.

There are some great things you can get from the internet if you have been diagnosed with cancer. Friendly people on message boards sharing the tricks of the trade for dealing with treatment side effects. Reputable websites that can allow you to better understand your disease and your treatment options.  (Note: there are also lots of bogus, scammy sites out there, so you will need a basic level of media literacy to navigate online resources. Your hospital should also be able to provide you with a long list of reputable websites.)

However, you need to be careful with how you use this information and how far down the rabbit hole you wish to go. Just a few evenings ago, I was reading some article, that led me to search for more information, and eventually I ended up stumbling on some studies that provided some very upsetting stats on survival rates for young women with breast cancer. As I read more and more, I became more anxious and riddled with fear. I burst into tears and sobbed to my husband, “I’m… gonna… dieeeeee… it’s… not… faaaaaairrrr waaaaah bleerghhhh.” Something along those lines. And I had been feeling fine just moments earlier. But a simple click of the mouse here, and another one there, and I had stumbled upon some really depressing information, that was not helpful to me in the least.

You’re going to find some info on the internet that you don’t like. I mean, hi, you have cancer. People die from cancer, and there are many things on the internet that wish to remind you of this fact, at every twist and turn you take. You must learn to shut out the noise. Remember that what you’re reading is some study of some group of people, and you are an individual. If the stats say that 99 out of 100 people died, that still means one lived, right? And that one person could be you, right? Definitely. At least, that’s what I tell myself. I also try to remember that even the best studies have their faults, and even the most thorough researchers cannot be 100% accurate all the time.

I could spend hours reading expert opinions and numbers that tell me the likelihood that I will or won’t be around five years from now. And sometimes I do, because I can’t help it. It’s like stumbling upon a horrific car accident and not being able to turn away. But you know what? You really should turn away. Keep on driving. Keep on moving. Because, for today, you are alive. You are not a statistic. And you really should be making better use of your time spent on the internet, like watching dumb clips on YouTube.

 

Steph’s cancer tips – Part I

I have always been hesitant to offer any advice to those dealing with cancer, as everyone’s experience is so individual and unique. But I do feel as though I have gained a heavy load of cancer wisdom and it might be my duty to share this with others. I often turned to the internet and stories of cancer survivors to help me navigate my treatment and everything that came before and after. So I do feel it’s important to dispense what knowledge I might have, with the chance it could help someone.

The Canadian Cancer Society reports that about 2 in 5 Canadians will develop cancer in their lifetimes. That is an unsettling statistic, no doubt. And if you employ some basic logic, this means that you or someone close to you is likely to experience cancer at some point (sorry, I don’t make the rules). So here are some tips, in case you ever need them (and I hope you don’t):

Telling people you have cancer

This one is a toughie and one of the first real challenges you face after a cancer diagnosis. Suddenly it is not just about you, but it is about everyone else’s reactions to what you are going through. For me, it was important to have control over this aspect. I sent emails to my closest friends, so that they would hear it directly from me and there would be no false information. I also gave direct orders: Don’t freak out. Don’t ask me questions right now. Don’t call me because I’m not ready to talk about it. And they followed my instructions, each responding with their concern and love, but none asking questions or showing panic.

Telling people in person can be more difficult, as you have to watch their immediate reactions, and a role reversal immediately takes place, where you feel as though you need to console them and tell them everything will be okay. This can be a bit uncomfortable, which is why I tried avoiding telling people in person as much as possible. I hated watching people’s jaws drop. I hated all the questions that naturally followed. I hated seeing their fear that I would die written all across their face.

This is how people react when you tell them you have cancer.
This is how people react when you tell them you have cancer.

This was one of the reasons I chose to start a blog and be public about my cancer. To know that it was out there and that it wouldn’t come as a shock to every person I happened to bump into on the street. In this sense, the blog has been a tremendous help to me. It has given me a sense of control over who knows about me and what they know.

So really, it is up to you how you choose to inform people about a cancer diagnosis. If you want to keep it to yourself, or you want to send out an email blast, or you want to ask a family member to do it for you. It’s about you and what you need, in that moment. It’s not about other people and how they might feel. This will be your first lesson in how to be a selfish cancer patient. But don’t worry, you’ll find you’ll get pretty good at it.

Attending doctor’s appointments 

I am a pretty organized person, which often makes me wonder how the average patient deals with so many appointments and keeps track of so much information. When I first started with my cancer meetings, it was extremely overwhelming and felt endless. There were many specialists to meet and a ton of info was given in a condensed amount of time.

It is important to have some sort of system. For me, my iPad has been my savior and I love it dearly. (It has also become a running joke with my oncologist, who makes fun of its cracked and abused condition every time I see him, after I accidentally smashed it while waiting for my chemo one day.) Before each appointment, I organize all my questions via note-taking software, which I can easily access from the web, my iPad, or my desktop. I constantly add to my notes as thoughts pop up between appointments. When you are in an actual appointment, your time is short and your thoughts get muddled. This is why it is good to come prepared.

During my appointments, I go through all my questions. I also record the audio of these meetings, which is way easier than trying to frantically scribble every little thing your doctor says to you, which we attempted to do in those early appointments. These audio recordings have been lifesavers to me. They’ve helped me go back and listen very carefully to the opinions and advice of my healthcare team, which often helps me get a better grasp on my particular situation and the decisions I need to make. They also help me to face the awkward things I say and bad jokes I make while meeting with doctors.

Quick tip: Be careful not to delete the recording before it saves. I have done this. Do not recommend.

Dealing with unsolicited advice

Anyone who has had cancer has likely dealt with someone telling them what they should be doing to fight their disease. Many of these people have good intentions, and sincerely believe they are actually providing you with helpful information. Many may not realize that how you choose to treat (or not treat) your cancer is completely between you and your healthcare team. Maybe your partner, or your parents. Otherwise, no one else’s opinion really matters. But unfortunately, you will still get it. Again, and again. And again.

I think many people do not realize that offering unsolicited advice can actually cause more stress than good. It can make you wonder if you are following the right plan, or question your faith in your doctors and medicine. It can fill you with doubt and cause anxiety, as you wonder if it’s true that eating a cookie is going to make your cancer spread, or that modern medicine is just some big evil scam and you should just eat a pound of broccoli and you’ll be just fine.

For me, I had to learn to shut out the noise. To understand that although people had good intentions, their beliefs were not my own. To put my trust into my extremely accomplished and brilliant physicians, and to believe research and hard numbers, not speculation. Ultimately, you know what is best for you. No one else does. And I think this applies to many facets of life, not just to those with cancer.

Sometimes, we all just need to shut up, and let people do as they wish.

TO BE CONTINUED…