Most of our cancer centers and hospitals are shit shows. Let’s be honest here. They are usually complete clusters. Our lives during and post treatment are also shit shows, so fasten your seatbelt and welcome to the shit show. Here are a few tips & tricks from an OG cancer patient that knows the ropes, so get your pen out and take notes!
Triage Nurse Line. One of the most important things that I can emphasize is to have the triage line on speed dial. It’s crazy how many patients don’t know that there is an actual triage line, and end up calling the main line for the hospital any time they have an issue. During your doctor’s appointment make sure that you get the triage nurse line and add it to your contacts! You need this. If you can’t get through the triage line and have an emergency or a break down, try to casually drop the terms “night sweats” or “fever” on the voicemail. I’m not telling you to lie about your symptoms but I am telling you what will get you a call back if that’s what you need. Leaving a voicemail saying you have a “question” about night sweats or fevers is a guaranteed call back. You’re not saying that you have these symptoms, you’re saying you have a question about them. The nurses often don’t call you back if they don’t think it’s an emergency.
Scans. This may also seem like a no brainer but a lot of people don’t realize how important it is to book scans with follow up appointments the same day, until late in the game. You must always try to strategically book your scans the morning of your doctor’s appointment or the day before. Do not let the office staff book them the week before or days before. Your life will be one big paranoid binge the time up to your appointment waiting, freaking out, making scenarios up in your head, worrying. Even if you can get your scan in the morning and your doctor’s visit in the afternoon, the doctor can usually pull up the scan and see what’s going on. If anything is going on. Hopefully nothing is going on!
Radiology. Become friends with Radiology. Every single person. This will make your life easier when it comes to getting scans, waiting in line, etc. A little friendliness will go a long way. We all hate waiting for scans (I had to wait a few times for almost 7 hours before I learned how to finesse the system and it was absolutely horrible) Bring the check in lady a coffee from the cafeteria, a cookie, anything. Keep in mind that he or she is probably getting screamed at all day long by patients and families because the wait times are so long. Yes, my mom was once that person yelling at everyone because of having to wait so long. If you’re wondering what ended up happening, I always had to wait longer. Don’t be the angry patient roasting the radiology staff. They are the gatekeepers and bees are caught with honey not vinegar. Hehe. Also, always ask for your contrast before hand. See if you can pick it up the day before, this saves a ton of time with drinking it when you get to the center, waiting, etc. Get that contrast. The staff usually has the power to give it to you before hand. All you have to do is ask!
Nurses. Be friends with your nurses! Especially your Oncologist’s NP! My doctor’s first NP I didn’t vibe with, but his second is one of my favorite people ever. If you don’t vibe with your NP, see if you vibe with any of the other triage nurses. Again, I have my favorites and they make my life so much easier and more pleasant. Appointments are always anxiety ridden, even years post treatment, so it always helps to be able to chat with friendly faces that know you and get you. Try to get cell phone numbers, but understand that you can’t nag your nurses. A few questions here and there are okay, I think.
CTU. Be friendly with your CTU nurses! A simple thank you will go a longer way than you’ll ever realize. I had a horrible experience with my CTU including nurses busting my port and almost giving me the wrong chemo once. As you can imagine, when I pass by CTU, I don’t get a warm and fuzzy feeling. There was one nurse that was so sweet to me that I loved. She would always check on me and help me out when she could. I think it’s important to make an effort in this department as well.
Respect your Heme/Onc! He or she is trying to save your life. Don’t get caught up in other people’s opinions, especially when they don’t know your doctor. During treatment, I had a harsh, crazy treatment. I was also Stage 4, and was in horrible shape when I met my doctor in the ICU. People on social media and support groups for some reason love to tell you to get second opinions, try homeopathic crap, essential oils, etc and half of them never even had cancer! Mentioning alternative homeopathic treatments to your doctors ends up pissing him or her off, and doing more harm than good. Unless you have a serious issue with your doctor, don’t listen to the peanut gallery. Respect your physician, his time, and his knowledge. I’m not telling you what to do, but I am telling you for a fact that if you seek alternative treatment because of cancer muggles on the internet, your chance of dying is much greater than if you listen to your actual doctor.
I hope these tips help! As always, sending you lots of love, good vibes, and good cells!
Your Former Lymphoma Barbie