I wish I’d known about Facebook groups.
Getting diagnosed with breast cancer in my late 20s was extremely lonely.
I had to miss out on big family events like my sister’s wedding overseas because I was in the middle of my chemo treatment and too scared to catch a flight because of risk of infection.
So while my family was celebrating, I was busy stressing out about pumping up my veins so the nurses can easily insert the cannula on chemo day.
While my friends were busily going about their day at work, I was stressing out whether feeling breathless was a sign that I had a blood clot in my lungs
It totally sucked.
It felt like everyone in the whole world was living a carefree existence and I was the only 20 something woman that ever existed having to deal with breast cancer.
It felt like the whole world continued on living, while I got left behind.
I wished I had known there were other young women battling through breast cancer. Knowing other people were walking the same uncertain path - struggling the same struggles, feeling the same fears would have helped - ALOT.
There’s something to say about strength in numbers.
Last year Mark Zuckerberg announced that he was going to “Bring the world closer together”. His goal is to “bring one billion people to join meaningful communities” via facebook groups.
Having a community can make us feel less afraid, that there’s something bigger than just us and that there’s something to look forward to.
But 8 years ago when I was first diagnosed, I don’t even think Breast Cancer Facebook groups even existed, so I think you’re lucky that today, the technology has allowed us to come together in solidarity.
Everyone’s on Facebook
The biggest advantage between Facebook groups versus the traditional online cancer forums is the convenience and the number of users in the platform. Today, there are 2 billion people on Facebook.
You can access Facebook via the app so much easier on your phone.
Think about how often you would update your FB status and check your newsfeed?
Therefore, it’s extremely convenient for people to join and actively contribute to the conversations that are happening in Facebook groups.
Online forums on the other hand are usually hosted on a website that you need to register and login every time you want to connect to these communities - making them cumbersome, so you don’t go on it as often.
When I was diagnosed, I joined a small online breast cancer forum but because I was young and diagnosed with a less common form of breast cancer, I felt like I didn’t fit in to that particular online space.
Getting Started with Facebook Groups
So what do you need to do if you want to join a cancer Facebook group?
Firstly, you need to search for a group that is most important to you.
To figure this out, you need to ask yourself some questions. Some examples:
Is location of the people in that group important to you?
Do you have specific questions regarding your own specific breast cancer?
Are you struggling with a particular type treatment?
Are you apprehensive about deciding on a surgical procedure?
To give you some ideas of the types of breast cancer facebook groups out there, check out the table later on this post.
If you’re on desktop- You can search for groups on the left hand column in the “Explore” section.
If you’re on the facebook app - You can search for groups by clicking the more section in the bottom right hand corner of your screen and click on “groups”
All you have to do to get started is find a group you want to join. Because these groups are private, usually the moderator will set some questions that you need to answer to make sure that you really belong to that particular group before getting accepted.
Some cancer facebook groups can range from a few people to tens of thousands.
So what do people post about in these groups?
People can post about their feelings and thoughts in these groups. It’s a great way to vent and let out the emotional stuff that comes with being diagnosed with cancer.
In the bigger groups, with thousands of member from all over the world, you’ll get a response to your burning question within a few minutes after you hit post.
Wanna know if your weird symptom is normal after your first treatment?
Someone’s there to tell you they’ve experienced it too.
Going outta your mind waiting on the results of your most recent scan?
A reassuring message will pop up telling you “It’s all going to come back clear.”
Celebrating a small milestone in your treatment plan?
Someone’s there to give you a virtual hug and high five.
Finding People in the “same boat”
No one really wants to be part of the C-club.
But finding a group of people that can empathise with you after a life altering diagnosis can make you feel less alone - that you’re not the only person going through this crappy journey.
We all want to be heard and we all want to be understood.
However, your situation and your pathology is unique to you, and no one is going to be in exactly the same “boat” as you.
The great thing is you’re not limited by how many Facebook groups you can join.
Whatever challenge you’re facing, there’s bound to be a group for it.
To show you how much choice there are, I’ve listed a few breast cancer facebook groups as examples to the breadth of communities.
Check out all these different Facebook groups.
Hearing a Different Perspective
When we’re diagnosed we’re bombarded by information that we find confusing and medical jargon that we don’t understand.
Your private community can get you up to speed with the lingo, and clarify anything you’ve found confusing during your consult and even suggest further questions you need to ask.
I think this is fantastic as the more we’re able to understand our disease and treatment, the more informed and empowered we are of our journey.
Difficult decisions also need to be made along the way. Having an online community that you can use as a sounding board for your thought process can be helpful.
Hearing different perspectives from people who have gone through it all before, can suddenly bring clarity to your own decision making process.
But I think the most powerful thing Facebook groups can provide us access to cutting edge new information regarding testing or treatment. This includes such things like clinical trials that’s being conducted around the world. You’ll get clues to how people are responding to these cutting edge treatment.
This is even more critical if you've been diganosed with Stage IV metastatic cancer and you need to be thinking out of the box and look into more experimental methods of treatment.
It’s hard to keep pace with medical research and by the time results hit the news, it might be old news already.
Remember, it’s important to understand that we need to be getting the BEST medical care - not just medical care that your doctor is familiar with.
Some Things to Be Aware Of
Before you post anything to these groups, it’s important to realise that each group has a set of culture and values. This is usually set by the admin or the collective users themselves.
Read and try to understand the rules. There’s also bound to be some unwritten “rules”. Pay attention to what the admin and moderators of that group posts. This should give you some clues of the do’s and don’ts, otherwise you might run the risk of getting kicked out.
For example, one of the groups that I’m a member of don’t support the exclusive use of natural cancer cures to treat cancer.
So asking questions about natural remedies is a “no-no”.
Another big downside to joining Facebook groups is you get to see reality of cancer.
You’ll read stories of recurrences and members gaining their wings.
As you can see, there’s so many benefits in joining private facebook groups, however, giving back to these communities is essential for the whole group to thrive.
But ultimately you must do what’s right for you. If it all gets too much you can turn notifications off in these groups and come back again or exit the group permanently.
I personally joined these breast cancer facebook groups to let others starting this journey know there are long term survivors so they can feel inspired to keep moving forward.
If you found this post useful, please comment down below and let me know how facebook groups have benefitted you in your cancer journey.