Remember Alice and her “adventures” in Wonderland? She falls into this hole, knows no one in the new world she finds, and feels like she doesn’t fit in at all. That’s exactly what it’s like to be a young adult with cancer…and I feel like especially my type of cancer (head and neck…specifically tongue).
“It would be so nice if something made sense for a change!”Lewis Carroll, Alice in Wonderland
I’ve only been in this elite club for a little under 2 months now. However, it is REALLY hard to find supportive people close to my age who are going through the same stuff! I’m happy to have found a few through my Instagram account and Facebook, but overall we are kinda just floating around hoping to miraculously bump into one another. And it’s so rare, finding someone actually near my hometown is basically impossible.
Now, don’t get me wrong. I’m happy to have met warriors of other types of cancer in my age group. I’ve gained more perspective and wisdom from them than most people I’ve met in real life. But we all have different struggles and treatments so while we can discuss cancer being a jerk in general, we can’t connect in the same way as someone going through the same type if that makes sense. I know what it’s like to have half my tongue removed and replaced with my arm tissue, but no clue what it’s like to have my breasts removed. But we both understand that drains are the bane of our post-op existence and lymph node removals and the resulting issues are awful. So we can connect on some levels but not the same as someone who has the same course.
It’s also interesting to me that I actually feel guilty that I’m not getting chemo. I have Stage 3 cancer so the treatment is surgery then radiation. I’m incredibly grateful that I don’t need chemo at this stage, but part of me feels like I’m “less” of a warrior because I won’t lose my hair. I think this is partially a media thing and partially because so many of the more common cancers require chemo as a first or second line treatment. And again, most of the people I meet have other cancers. So I wind up feeling bad that I can’t relate at all to the chemo chats. I don’t want to say I feel left out, because again I’m grateful I don’t need it…but it does leave me on this sort of lonely island with my personal cancer experience.
Also, people tend to treat people with head & neck cancer like we caused this to happen. Maybe it’s the same with others as well, but it really irks me every time I tell someone and the first question is “do you smoke?”. No, I’ve never smoked cigarettes. I don’t drink very much at all. No, it’s not HPV+. My radiation oncologist offered genetic testing but it wouldn’t tell us much because as of right now NO ONE KNOWS WHY YOUNG, HEALTHY ADULTS GET ORAL CANCER. I get that people are probably just trying to protect themselves, the magical thinking helps them feel secure that this horror won’t befall them, too. And I try not to get upset about it, but it really feels kinda shitty when you know people are assuming you brought this on yourself somehow.
So I’m stuck in this world with very few guideposts and even fewer comrades to walk with me who understand what I’m going through. I’ve met the nicest, most genuinely good-hearted people but still feel alone in a big way.
If you’re like me and you’ve just fallen down this rabbit hole and are feeling lost, please reach out. Maybe together we an create a beacon for others in this boat. Also, for anyone going through any cancer but especially head & neck, I highly recommend checking out Elly Brown’s story and her videos at realellybrown.com. Also, I met a super rad woman who is a Speech Language Pathologist and also went through oral cancer. You can check out the awesome resources she’s put together at myoralcancersupport.com.