Can you imagine being handed a hospice pamphlet? Like, for more information because your medical team thinks you need it? Imagine that for a minute.
Last year at the end of February I had my first appointment with a new doctor at the pain management clinic in my cancer center. At the time I did not realize it was actually the palliative support clinic, it wasn’t made clear to me. To be totally honest I didn’t even know what palliative care even meant then…
The appointment started out like any other appointment. It was my understanding that this doctor was going to work with my oncologists and take over the medication aspect of my treatment, which included painkillers, symptom management meds and anything else I might need to support me through this new diagnosis. Made sense to me, I had a team of doctors and they all had their lanes. It has always been on me to manage the lanes – but I knew who belonged in what lane and who to go to when I needed something. This wasn’t my first rodeo, but this was my first time at this clinic.
The conversation with the nurse started off ok, but there were a few comments that didn’t sit right with me. I could feel myself begin to get overwhelmed, but I’ve always had a handle on my emotions in appointments and my nurse was just doing what literally all people do when they talk to me – try to say something to help a situation, meaning well. It’s not their fault they don’t know what to say. Deep breaths.
Next came the doctor, who I was meeting for the first time. It was a lot of the same conversations, going over everything I was experiencing, going over my needs, what to expect, etc. Nothing crazy. In passing I mentioned my kids, and I told them I was on the hunt for some kind of therapy or help for them to make sure they had all the right tools to cope with my situation – which is also their situation. They told me they had some information for me, they’ll give it to me on my way out of the appointment. Cool.
I made it through the appointment, and was on my way out when I reminded them I needed the information for my kids. So, they left the room to go get it, I put on my jacket and met the nurse in the hallway outside of her office.
Casually in the hallway she handed me a hospice pamphlet.
A hospice pamphlet.
Suddenly I couldn’t breathe.
What the fuck was this? Why the fuck was she giving it to ME?
I froze in place and tried not to act like I was in complete shock. I stood there while she opened the pamphlet and showed me the information inside, explaining things I honestly don’t even remember… But I do remember when she showed me the back of the pamphlet where there were programs listed for kids. She took a pen and circled the name and phone number of the programs she thought I should look into, and told me how they were great for kids like mine.
Kids like what? Mine. Kids whose parents are dying.
I walked away and I tried to hide the fact that I was starting to cry. I had managed to hold in my emotions for the entire appointment, because I am a professional… but this was too much.
Then the anger.
Ohhh the anger.
Up until this point I was never angry. Not once. I never thought ‘why me’ or ‘this isn’t fair’… never. I just didn’t feel any of those things. Right from the beginning it was just always the way it was and I moved forward. I took everything in stride. I cried, yes. I got upset, of course. But I never got angry.
This was different.
I’m sure my memories aren’t completely accurate, because it’s hard to remember the details of everything when emotions are so high – but I know that everything changed for me that day. For the first time I was thinking ‘why the fuck is this happening?’ and ‘this isn’t fair’. It felt really unfair that day, and on many, many days since then…
I stuffed the pamphlet into my pocket and made my way to the parking lot where I’d get in my car and make the same drive home I’ve made a hundred times before. It’s amazing how many times I’ve had to collect my thoughts along this particular route. Making sure I have my shit together by the time I walk into my house and face my kids.
‘Mom! Mommy’s home! How was your appointment mom?’ is how I’m always greeted. They’re so mature asking me how my appointments are. That day was no different.
I took off my shoes, smiled, walked to the kitchen, removed the pamphlet from my pocket and tossed it quietly into the garbage as I answered. ‘Really good my loves, thanks for asking.’