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Monday, May 12, 2014

Let's talk about mental health

And about 4000 mg of Sam-E later, I'm getting back to normal. The shit works.

I've been taking it since my first visit to the nutritionist, towards the end of chemo. I was in one of those insidious depressions where you have thoughts like, "Everything is terrible. I should be depressed. Anything else is a lie." I scared Matt by refusing to get out of bed. I felt like it was the only thing I could control.

In addition to the Sam-E, I have kept myself running the last almost two years on a combination of therapy (my therapist is wonderful, and also had BC as a young woman, so she gets it), yoga, support groups, meditation, TV, and the occasionally prodigious use of Ativan.  I had been through cancer with Matt, and I actually felt like parts of my own were easier, having gone through his. And still, I consider myself moderately to sometimes severely fucked up by this. (Maybe that's completely obvious...?)

My therapist and I talk about the symptoms of PTSD I sometimes exhibit. Things like, I startle at minor, non-frightening occurrences. I gasp, sometimes scream, my heart pounds, when I do something like drop a can of cat food on the floor.

PTSD has been studied a bit in survivors of childhood cancers. And check out this Breast Cancer Social Media chat about PTSD.

We talk about anxiety about things like car crashes relating somehow to the tiny chance that I would get sick, and beating those odds. What's to stop other tiny odds from coming true?

Abstract of a study on YA women with cancer and their mental health. Bonus: refers to those without history of disease as "non-cancer females." Oh, what I'd give!

I can't, and don't really want to, imagine where I'd be if I weren't hyper-aware about the mental health implications of all this going in. If I weren't in therapy, if I wasn't seeking support constantly. It can be hard, especially in the midst of treatment, to even begin to think about mental health -- things like, do I really want to add another weekly appointment or another medication? I totally get that.

And our doctors are mostly focused on the physical. They see us for a few minutes at a time. They're not as plugged into this as they should be. It's unfortunate that, at a time when a person is most vulnerable, most tired, most not up for fighting for one more thing, that they must be their own mental health advocate. 

Check out the Resources page for links to some of the organizations that helped me a lot.

And, speaking as a caregiver, the fun doesn't stop with the cancer patient. Caregivers can actually end up with higher rates of anxiety and depression than the patient.

Speaking from my own experience, I felt completely and utterly responsible for Matt's health. I felt that if something happened, and he got sicker, or he died, it would have been because I didn't take good enough care of him. I know that's irrational, but at the time it felt like the truth.

So that is all to say, please please reach out to a therapist, hospital social worker, family member or friend (or all of the above) if you're dealing with a cancer diagnosis. I'm always here too. It helps so much to talk, to say things out loud. And we need all the fucking help we can get.


  1. I've never been skittish. While on tamoxifen (which I ended, against doc's orders, because my life was literally OVER with all the s/e!) I would scream every time something was dropped, I would have heart palpitations, I had anxiety up the wazoo. I'm so much more ME again now. And I find that I take such better care of myself because I'm not depressed, and I'm not thinking I have a safety net in the pills. Meanwhile, a friend who was on them for 3 years and hated them not as much as I did, but hated anyway, has been re-diagnosed with stage 4. So much for a safety net. I do worry about my husband, but he is super positive and strong. And my whole family is relieved that I'm back. Acupuncture and meditation have helped greatly. Best of luck to you! xoxo

    1. Skittish is so the right word. I'm so glad you've gotten things sorted out and you're feeling like yourself again!

      I'm hormone negative, so no tamo for me, but I have some friends with side effects like you describe.

  2. I am sorry for what you are going through, 9 months ago my husband passed of pancreatic cancer, so many questions I ask myself, did I do what was right, then 7 months after he had passed I was diagnosed with breast cancer, I had surgery then started chemo 3 weeks later, I often wonder Why, why me, is this a punishment for not being able to save him!! I do have a few people who are very supportive, but it's hard to explain to them the emotional impact this has on me, so often I just pretend I am ok, it makes the days easier to deal with. I just want to get through this treatment and get on with my life!! I tell myself everyday, I GOT THIS!!!

    1. I'm so sorry to hear this. What a crazy fucked up one-two punch cancer has given you. Are you seeing any professionals/visiting any support groups? Even if that's really not your thing, I would strongly encourage you to visit one. Just being in the same room as other people who "speak cancer" is so comforting. Even the toughest need support.
      Sending big hugs and cancer ass kicking vibes!! xoxoxo

  3. Cancer and PTSD. Um. Two such difficult subjects. BC is a thing I have to deal with, too. My experience is, that no-one wants to hear about that. Every so often even doctors are afraid of a young woman with metastasising cancer and her feelings of anxiety. But my friends are great! So I`m getting all the support I need. The rest is up to me, I suppose. Reading blogs and blogging myself made my life easier.
    Keep on writing and loving and living! All the best from far away!
    Hugs, Perdita

    1. perdita! I'm so glad your friends are being so great! i love your blog -- though I'm embarrassingly monolingual, your photos speak volumes. I love the wigs. Lots of love!