"I'm getting very tired of this cancer of yours"

(Originally posted in the Young Survival Coalition Metastatic forum 18 July, 2014)

So that's making the rounds on Facebook. It's a very important concept, as my partner suffers from mental illness (and most of us with cancer have developed depression or anxiety) and mental illnesses are just as real and difficult as visible physical ailments.

But the top one had me thinking. That's something I've seen others with mets complain about hearing, how friends and families get tired of dealing with the never-ending reality of cancer, especially when we're in a place of stability. We have fatigue, physical issues, aches and pains that come from cancer, and we might be surviving for years with this.

My mother in law doesn't think I'm dying, just because I'm stable at the moment and I'm in relatively good health otherwise. I'm not actively dying, but only because I'm in treatment. I'm still stage 4. People get tired of the New Normal of stage 4 cancer, and start complaining about this little cancer problem of ours, like we can't be surviving with it, like a chronic condition. It's like the only acceptable options for cancer are 1) getting cured or 2) actively dying.

I can't go back to work, if I do, I lose my medicaid coverage which is paying for the scans and drugs that are keeping me monitored and stable. This is not going to end. The only way I'm getting off Zoladex and Femara is when they stop working. Not if. When.

I woke up today and about an hour later I had to stop and think because for a few scary moments, I was so sure I had brain mets. I dreamt that the scans showed brain mets. It wasn't a nightmare, I didn't wake up screaming or crying, It just faded out in a normal sleep cycle like a normal, natural thing and it was so easily incorporated into this new normal that I had to stop and actively remember that it never happened. And even after that, there was still the lingering "I have brain mets now" feeling. I don't have any symptoms to suggest it, it was just something in a dream, but that's the kind of normal my life is.

I have The Cancer. I will never stop having The Cancer. Even if I get NED, I will have The Cancer. It just means it's not actively killing me at the moment. It's never going to go away. And my life has become something where I can dream I have new mets and it just feels so normal and easily absorbed into my life that it doesn't strike me as odd.

We're tired of this cancer of ours too. We don't want it to be our reality. So a hearty fuck you to the families and friends who tell us that they're getting very tired of this cancer of ours.

Mets sucks. We're not necessarily actively dying, but we'll never be cured either. We don't always look sick, even if we feel sick. It becomes a chronic, invisible illness that's killing us slowly and it feels like we fade out more and more with every year we survive. We're often not welcome in cancer support groups, asked to not share our diagnosis lest we "discourage people".

This is the purgatory of breast cancer, the in-between that falls through the cracks. I want to do more, I want to make people realize where their donations really go, get people to realize that mets research needs more funding. I want us to be more visible, to have a louder voice, and I look around at the women who are already doing that, donation groups like METAvivor which are channeling funding to mets research, and see that we're still getting ignored. How much more will it take, when will people start to listen, how will we become visible?

I'd like to think that it's the lack of mets funding that's been hurting Komen so badly the past few years and while it certainly plays a part, the big blow is the withdrawal of funding to Planned Parenthood for screening low-income women for breast cancer. It still goes back to "early detection" when women younger than the "accepted" age for breast cancer develop the beast. It still goes back to "early detection" when that really doesn't do jack for stopping anyone from developing mets. It's all about early detection and the "cure" which doesn't exist for ANYONE.

It makes me feel like I'm faking it. I get a shot once a month, take a pill once a day, my hair's growing back, I just suffer from hot flashes and that's it. I have cancer. But I'm beating it back and it's not harming me at the moment. I'm not cured, I don't have a "five year milestone" after which I'll be able to move on from cancerland. But I'm not "sick", and I'm not really doing anything either. I'm not faking it, but the Breast Cancer Awareness movement makes me feel like I am.

I'm sorry for this tl;dr full of feels that ramble all over the place. I don't want us to be invisible anymore.

And a few months ago, a store clerk, upon asking what kind of cancer I had (my partner and I were wearing shirts that said fuck cancer) and learning that it was breast cancer... her reaction was "oh, good" and a smile of relief. This is why mets gets ignored. There's no smile of relief for us.