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…