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 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…