I am gathering my best tips for the newly diagnosed or friends/family of those undergoing cancer treatment. I will update it periodically as I get more savvy:
- Food. Experiment with eating the day of chemo. Some people find eating the day of chemo upsets their stomachs. Others find they do much better with a moderate breakfast or lunch in them. Try different things to see what works best for you.
- Mints. Use them to keep the taste of saline out of your mouth when getting your pre-meds/hydration on.
- Dress code. They will need to access your port the day of chemo and it’s easiest if you wear a shirt with buttons. Also, it tends to be cold in there and while they will likely give you warm blankets, it’s not a bad idea to dress warmly and bring a blanket if you have one you really like. A long-distance friend sent me a blanket for chemo and it made me feel like she was with me when I was wrapped in it. That helped a lot.
- Entertainment. You will be in that chair for a while. Bring a book, audiobook, podcast, movie, etc. to take your mind off the worry and the wait. By the way, you’ll be okay, just so you know.
- Speak up. If something doesn’t feel right, even though almost nothing is normal in Cancer Land, be sure to ask questions and speak up. My experience is that most professionals who chose to work in oncology are amazing souls. They will be patient and kind with you. Help them help you by asking the stupid questions and raising the ridiculous concerns…because they aren’t either.
- Hair loss. It’s hard to lose your hair. It just is. I did in phases, cutting it shorter and shorter each round. Eventually, when my hair started to fall it out became very uncomfortable. It was essentially pulled out little by little by anything that touched my head- especially my pillow at night. Consider a pre-emptive shave (when you are ready) to save yourself a few sleepless nights.
- Stay active. Your idea of “active” will need to adjust, but even a little walk around the neighborhood sometimes does wonders for relieving nausea and fatigue. Plus, consider giving your body the movement it needs to stay ahead of this disease.
- Heating pad. Invest in a good microwaveable or electric heating pad. Heat can help reduce pain from headaches or joint pain and it feels good to be wrapped in some warmth.
- Making friends. It is likely that you will be scheduled the same time as some other “regulars” whose rounds mirror yours. I love seeing my trench buddies every week. We check in with each other and it is immediately comforting to know you are not alone.
- Notes. I got myself a cancer notebook and tried to write down everything any professional told me. It helped to have everything in one place. My notebook also had a sealable pocket where I could keep business cards, prescription slips, and other information. Handy.
- Partner up. Use the buddy system and try not to go solo. The information you will be taking in is new and overwhelming. There is so much new jargon (latin anyone?) and each piece of information usually provoked an emotional reaction. This resulted in me not being very effective on my own which meant this was a great place to use those friends who were so wanting to help out. Also, my experience is that there is no such thing as a “mundane” appointment. Information comes at you fast and out of nowhere. So grab a buddy and go!
- Questions. To the extent possible, write them out in advance. It’s a lot easier to get a doc’s attention and care when he/she is sitting right in front of you.
- Research. Talk to other patients and physicians about what worked/didn’t work for them. I strongly recommend you stay off google but talking to other patients about which providers they preferred and why has been incredibly valuable for me.
- Keep track. I struggled with this at first, but in your journal keep notes on what is supposed to be happening and when. Things can fall between the cracks even with the best team and you are your best advocate. Know what medications you take, when and what doses as well as what treatments you are supposed to be (or more importantly not supposed to be) receiving in any given day.
- Local organizations. Most areas have a cancer center or cancer community to rely on. The resources in these organizations are astounding. Make a trip in your first few weeks after diagnosis to see what services are available to you. Normally, things like counseling, exercise groups, massage, acupuncture, educational classes, and even activities for kids are part of the offerings. Scout it out early and often. You’ll be glad you did.
- Friends. Let them help. There are some really helpful websites that can help coordinate everyone’s efforts. Pick a close friend and let him/her organize things for you. It will save you from having anyone’s efforts go to waste and will allow you to communicate exactly what you need and when.
- Plan ahead. If you haven’t already done so, update or establish your estate planning and medical directives. I know, it’s not what anyone wants to think about but if you have your things in order it will free up some stress and worry in your mind. A lot of law firms, like mine, will provide this service for a dramatically reduced rate or free. Just ask.