Sidestepping Side Effects – The Ones No One Discusses Part 1

So there are obvious side effects, like hair loss, that everyone knows about and thinks about when they contemplate what a cancer patient goes through. Then there is all this stuff people just do not like to talk about. Or it seems like at least talking about it is finally starting. For example, loss of independence, financial stress, loss of control, depression, anxiety, and lost time doing activities you enjoy to keep yourself emotionally healthy. I feel like I have done a good job pretending these don’t affect me, but they do. That Guy and my mom see it the most, followed closely by That Little Girl. It’s awful. And that is coming from someone who tries really hard to just suck it up and get through this.

Months ago a childhood friend and fellow cancer survivor and I were talking about how exactly it feels. There are not many cancer patients in my demographic when I go in to the doctor’s offices. Being diagnosed while pregnant is another special thing. Even having little ones at home makes me somewhat of an oddity when talking to the care team. Dealing with any or all of our own special circumstances changes how we cope as a family and patient. It is a rather lonely feeling no matter how many people we have loving and caring for us as a family, in the end it is all in me and on me.
Somewhere along the line in talking to my warrior friend, it came up if there is a PTSD type disorder for cancer patients. It turns out there is. In my experience, cancer diagnosis and treatment all happens so fast and you get your heinie to treatment and you do everything they tell you to do and you show up with a smile and you become friends with the people treating you because you see them more than anyone else in your life really and you just do it. Seriously, showing up for treatment, for me, is the easy part. It is the not being able to independently take care of my kids, and some days myself, over the last eight plus months, that has been some of the hardest parts. Since there is quite a bit of emotions in this, I’m thinking this is part one of a few. I’m going to start with the lack of independence side effect and what being sick can take away from a young patient during treatment. And it’s not just being able to go here or there alone or do this or that, it’s that I question my ability to do or figure things out.

Here it goes:

That Baby has had a lot of people taking care of her. We are so very fortunate to have a support system that showers both of my girls with love and support and steps up and helps out. That said, a friend was here when we were putting her to bed and couldn’t believe the “routine”. As in, That Baby goes to sleep with little hoopla. There is no nursing, rocking, singing lullabies, etc. Trust me, I have tried. She screams and reaches for her bed saying “Ahhh! Ahhhh!” She wants no part of that loving snuggling quiet time. And really, she is just so low maintenance and adaptive, which is so helpful given our circumstances. I shouldn’t complain, but humor me? Much like her mama, That Baby loves her bed. But she also won’t fall asleep on my chest. She’s happy and healthy, so take all this with a grain of salt (or drop of whine), I just wish she had more baby needing her mama in her. Truth is, I have not been able to be her primary caregiver and bond with her and do all of those things mommy does. I am grateful on days I can hold her after not being able to for a bit from surgery and a complication. So I try and change my perspective that I am here. And that is better than not. Even she has no idea who mama is some days. I’m just that lady who shows up with a fuzzy head, hat, glasses sometimes, a wig sometimes, etc.

So here is the crazy back story. I’m a worrier and anxious person by nature. Having a baby takes all that and makes you forget to enjoy things that are wondrous during your child’s first year. Being a working mom, you miss things in your baby’s life, but you know that going in. When That Guy and I decided to have another baby, one of my reasons, although not a big one, was so that I could really, truly, take it all in. Big fat HA! I have missed That Baby’s first year so far. And we are so not having any more children (doctor’s orders at this point). So on top of being pulled away for treatment, unable to really care for her when I was physically there, and chemo brain making my brain useless, my memories of her first year so far are swirled up and tied in a knot and non-existent. So maybe I should have listed anger as a side effect no one talks about up there, right? I am pretty angry about that one right there. I want a do-over of this year with That Baby.

That Little Girl has become so accustomed to there being someone here with us, me not being able to carry or lift her or her sister, and my sofa surfing evening status, that she actually scolds me if I try to do some things. Even being the one to get her ready for bed and read books was not always possible during the height of my treatment, so doing those types of things have been fun again!

There is a lot that I can physically do for myself, but I can’t do all of the things all of the time in a row. So for example, I can get some errands done, help with the kids while my mom is around, and then tackle a few phone calls, but then I’m done. Those same tasks become impossible. I’m drained. And I am draining, or feel like I am, everyone around me. There were days any one of those tasks would have been too much, so I’m just speaking of right now as I’m on the upside of things (I hope!) and find this all the more frustrating.

For a big portion of the first six months, between feeling awful from chemo, having the symptoms of SVC Syndrome and undiagnosed, then after the SVC Syndrome caused me to pass out and be in the hospital, I plain old didn’t drive. Myself or with the kids. Once I did start venturing out behind the wheel on my own, I went only a few blocks so I could get to gentle yoga. Can I tell you how good it felt to drive! That was like meditation for those few blocks and put a balance in my life. I always felt like that goofy mom at preschool pick up and drop off that has her mom drive her and the kids. Plus it was like a parade to get to any appointments or a juggling all hands on deck party to get coverage for the kids and a chaperone for me. Again, so thankful to have the support system, but just wish I had been able to do things by myself.

With any support system though, as you take people away from what they need to be doing when they give up their time to help you, eventually their things need to get done too. And when this system is needed for such a long time like we have needed, it can be ugly to balance it all. I hate feeling like an obligation someone has to help. At the same time, I hate feeling like people are acting like this is something I am choosing to need help with. Obviously, That Guy and I know that most of the times the difficult part is having help with the kids or caring for the kids, and they are OUR kids in the end so up to us to do so. No matter how much I appreciate and love these people, it is hard on everyone and even harder to neeeeeeeed all the time.

Since I am on the upswing, and I want to return to normal, or a new normal, or whatever the cancer survivor community wants to call it, there seems, at times, to be people who don’t understand why the cancer free status doesn’t necessarily equate to an instantaneous all better back to normal. Dude, can I tell you how awesome it would be if that were true. There is still a lot of mental, physical, and emotional healing and ramping back up to normal to do. There is no magic wand. There is no switch that they flipped in surgery. I am still very physically tired and weak some days. So instead of even a moment to breathe and bond with That Baby, it’s suck it up and move on time, or so it feels. Part of me is anxious to get that normal back and regain the independence and all of the good that comes with that, but part of me just wants a minute to breathe, enjoy my girls and being able to do things at all without help, and really absorb what has happened. But what amount of time would allow that?

The loss of independence is a real issue for young cancer survivors, I think. Again, everyone has a different definition of independence in their pre-cancer diagnosis life. But can you imagine being a young twenty-something finally out on your own and being thrust back into the position of being dependent on your parents? What if you were single, in a new city, without that built in support? Who would be your extra set of ears at doctor appointments? Who would make sure you ate when you were too icky to make yourself something? How much financial stability do you have at that point in your life, typically not much when you are first starting out. And starting out in your career, how much of a set back will that cause when you are able to get back to work if you are forced to stop for a time. If your parents are able to assist financially, how does that make a person feel? On the flip side, what if your parents aren’t in a position to help, then what? If you have to move back home, do you have the support from family and friends aside from your parents if you have been out on your own?

In so many ways, I know I am very lucky. But losing independence. Losing this time with That Baby and That Little Girl. The strain on relationships while people helped us. These are just not things that I can ever get back or undo to how they were before. Cancer stole them. Simple as that.

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