Treatment Ended But It Seems Cancer Hasn’t-What We Want You To Know

Ah yes, I’m still here. Even though I’m mostly done with active treatment and reconstruction (other than the pills that make me feel like I’m 90 years old and someone at work just asked me why am I limping…), I have more to discuss because breast cancer isn’t over. There are so many articles and posts about what not to say to breast cancer patients and/or survivors. I agree with most, not all. Usually the list of things that are a no-no are super obvious, like “you get a free boob job.” Seriously, people actually think that. It’s important to let the world know what types of comments are helpful or hurtful, but I want to take this idea one step further and let outsiders (not-diagnosed-with-cancer-people) know what we are feeling and will continue to feel for quite some time. I see new survivors feeling lost and alone instead of victorious. Maybe sharing the post-treatment struggle can enlighten the masses.

What I want to talk about is what happens after, once active treatment ends and you ring the bell, hold up the sign, or the fat lady sings. I see it over and over again in my social media cancer groups. People outside our world say “great, you’re all done! Now you don’t need to ever think or talk about cancer again and let’s go hike Camelback Mountain because you’re up for that now, right?” But for us, when all is said and done, i.e. surgeries, chemo, radiation, etc., it’s really not all said and done. What we are left with are shells of our former selves. Our hair is starting to grow back. It’s not cool, edgy, rock the bald anymore; it’s like male pattern baldness. I used to say mine looked like Bobby Hill from King of the Hill. Our eyebrows and eyelashes may or may not be growing back. Some of us gained weight during treatment, although there is a huge misconception out there that chemotherapy should make us look like starving children in Africa. Chemo brain, although not as acute, lingers just enough to make us feel like we have early onset Alzheimer’s. We will be suffering from the side effects of treatment for a year, or many years, or forever. If you are diagnosed with Stage IV or Metastatic Breast Cancer (MBC), treatment never ends, until your life ends, however long that may be. For some, that may be 2 years, for some it’s decades. We have scars like a roadmap. Beyond the physical pain is the mental and emotional anguish. We have PTSD. Yes that’s a thing with surviving cancer. Our world has been doctors, nurses, radiation technicians, phlebotomists, medical procedures and hospitals for a long-ass time. As much as we hate having cancer and going through treatment, when we are there it’s like we are safe. We feel confident nothing bad will happen to us once we walk through those doors. We are checking in to fight. Our nurses and techs have become our friends and our family. Then one day, we’re all done. Out through the doors we go, into the big scary world we used to navigate mostly without effort but now we do so without the security blanket of our medical team, and without any real knowledge of what’s to come, or what we can expect. We’ve had our safety net ripped away. We are different people. We are not the same confident women we were before breast cancer. We will likely regain this confidence, but not yet. We have probably lost friends and relationships along the way because cancer was too scary, or they were generally selfish people and couldn’t handle that this cancer wasn’t all about them. I see the term “this is our new normal” bandied about all the time. Truer words could not be said.

We have changed in so many ways. In my case, I truly believe I am a better person but it took quite some time to feel that way. Most of us are petrified because breast cancer can and does return in many cases. It’s not like some other cancers or illnesses where you get treatment and then you’re cured. We may have no evidence of disease at the moment but that could change at any time. It’s true nobody knows what the future holds. Anyone can be killed just crossing the street or choking on a sandwich but we breast cancer survivors have a target on our backs and we have to learn to go about our lives and cope with that. We don’t want special treatment, just understanding and awareness that as much as we would like to, we can’t just bounce back into our lives. It will take time. Please be patient. To us, a simple step forward may look like this.

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The Tortoise and the Hair

It actually felt like my hair was a tortoise the way it grew back.  It actually came back fairly quickly but it felt like FOREVER.  Especially for the hair on my temples.  For those just entering this phase of their cancer treatment here is what my hair journey looked like.  As I’ve frequently said in the past, losing my hair wasn’t nearly as traumatic as I anticipated.  I’m not going to over analyze it but all I can think of is that I’ve always been very adventurous with my hair with color, length and style.  I’ve cut my hair from the middle of my back into a chin length bob without a hiccup.  Dyed it from blonde to chestnut brown.  Maybe my mind looked at it as another style choice.  I’ve had it down to my butt as a kid and in a Jamie Curtis pixie (long before cancer).  One thing I noticed as my hair started regrowing was that IT. WAS. GRAY.  Yup, I don’t know what I was expecting at 49 but it wasn’t that.  Also the new hair after chemo was curly and baby fine.  My pre-chemo hair had a slight wave if I scrunched it but the chemo curls were pretty cool.  As most of my pink sisters are trying to grow back their long locks, I found that I like my hair short and I’m not sure I’ll ever want it long again.  Priorities – 20 minutes extra to lay in bed.  I’m also loving it red.  It’s been blonde for the past 10 years or so but I like this change.  It’s a new me across the board.

1-buzz before chemo

The buzz before chemo.

2-bald after chemo

Bald after chemo

3-trying to come back

Trying to come back 😦

4-male pattern baldness

Male pattern baldness

5-Bobby Hill

Bobby Hill

6-Giant Forehead

Giant forehead

8-curls are leaving

Curls but they’re starting to go