Coping with a new cancer diagnosis: Part II
First and Foremost, Keep it Clean
“We are what we repeatedly do. Excellence is not an act, but a habit.”
If you have already started treatment, then one of the first discussions your care team should have had is your increased risk for infection, and what that means in real life. The problem most of us run into, is that the information gets buried in the overwhelming amount of discussions about your diagnosis, treatment options, and a million other things.
With that in mind, I decided to include some basic information and resources that will hopefully repeat or overlap a lot of the information you’re seeing from your oncology clinic. This information can also be helpful to share with friends and family members who might be wondering what they need to do to help keep everyone safe.
The Centers for Disease Control (CDC) has several helpful tip sheets including “Basic Hygiene Practices During Chemotherapy.” The title may say ‘basic,” but there is actually a lot of information there, including some videos. This article from the Leukemia & Lymphoma Society (LLS) does a great job breaking down the difference between cleaning and disinfecting. Because their information is geared towards those with blood cancers whose white blood cell counts can go much lower than other types of cancer treatments, the recommendations are very conservative.
All of these resources have some version of the same information, and they are all a good start. In my experience, the best practice is using that information to build a realistic maintenance routine and sticking to it. In fact, that is the theme of the day.
Now, Let's Build Some Structure
If you’ve already had to cope with a chronic illness, managing multiple medications or caregiving of any kind, then you already know how quickly things can get out of control. The goal here is to give you some tips on keeping your home and supplies safe and easily accessible.
The focus here is to set up your space and routines so that you don’t have to stop and think before you do anything. This is especially helpful when you’re up in the middle of the night looking for nausea medication in a daze or if someone new volunteers to step in as an assistant.
When clinical staff are trained to handle emergencies, we drill over and over again to perform steps the same way every time. That extends to day to day training too. When I started as a Bone Marrow Transplant nurse, I was taught to arrange IV medications in a very precise order so that any other nurse could step into my patient’s room and know exactly what was where in case of an emergency. In your case, I hope that is far too extreme a mentality, but a real life version of that thought process will help you decide on a routine that works for you.
In my experience, the routines you set and follow will save your sanity on days you are stumbling through the motions from fatigue.
Step 1: Set the Stage
Depending on how complex managing your treatment at home gets, you might end up with just a few new medications and supplies or whole new pharmacy supply shelf. Either way:
- Keep all of your supplies and non-refrigerated medications in a single place. My favorite option is to keep them on a tray with raised sides that can be cleaned with a bleach water solution.
- Make sure the tray has enough room for a clipboard and bottle of hand sanitizer. Best case scenario, the tray will just live in its usual spot, but putting everything together on one means you can move it to where you need without fuss.
3. If you have medications that need to be refrigerated, keep it (or them) in a washable box or tray on a shelf at eye level. It will be tempting to put them in the door, but depending on who lives in the house, you’ll want to avoid that if the door tends to get slammed.
Step 2: Set a routine & write it all down
Your oncology clinic has probably given you plenty of instructions, including things like “monitor your weight” along with keeping an eye on your skin and temperature. Unless they’ve given you specific instructions that say differently, then here are some suggestions on how to do that
Do these things at around the same time everyday. Set a reminder on your phone and leave it there. Most days you won’t need the reminder, but the 1 or 2 days you do, you’ll be grateful that it was there.
For example:
Instructions from your oncology clinic say to monitor your weight.
Set the routine: Weigh yourself 1st thing in the morning, every morning, after going to the bathroom. Like with most of the numbers your care team is monitoring, they are probably looking for trends (is this number going mostly up or down) or sudden big changes. A weight first thing every morning means that you are more likely to be comparing apples to apples.
- Next – write everything down, in the same place and use what works for you already.
If your 1st instinct is to look for a new phone app then go for it, but you might find that keeping a log in your regular notes app works just as well as most of the options in the app store. If you’re a pen and paper person, now is probably not the best time to try and force yourself to learn some new tech. How you track information is less important than keeping track of things consistently.
**Write it down goes for tracking your symptoms and your medications as you take them, both your everyday medications and the as needed variety. If you’re not sure how to do that, here’s a Sample Tracker that I’ve put together to get you started.
Step 3: Write your routine down & post it
If all goes well, this step will be overkill but it can be very helpful in a variety of situations. If your lifestyle and household are particularly busy, then this is a great way to keep everyone on track.
More often than not, though, keeping up with the tasks related to treatment fall on you (the patient) and whoever your main support people are, although often a single caregiver ends up being your main partner. That means that writing out a routine/schedule can seem unnecessary, but having it there to reference is especially important if someone new needs to tag in as your support person. Think of this as part of your “what if” plan if your main partner comes down with the flu or has another situation crop up and can’t do their usual part. It’s also helpful for you, as the person going through treatment, since you might find that your memory and focus start to get less reliable as things move forward – something you’ll hear called “Chemo Brain.”
Under normal circumstances veering off a schedule isn’t that big a deal but during chemo treatment, the consequences are a bit more worrisome. With your routine written out you’ll stand a better chance of keeping up with all the day to day parts of your new “job” and keeping the whole team on the same page.
How you write this out depends on you. I love checklists, so a To Do list with my tasks for the day listed in time blocks works well for me. I tend to do this on the computer, then print out copies. This has the added benefit of having something simple to keep on your supplies tray or to post on the fridge for easy reference. I also find it very satisfying to check things off, but that might just be me.
For day to day tracking, using a shared digital calendar with items listed as repeating tasks or events might be the better option. Especially if you already use a digital tool this way or you want something you and your loved ones can see from anywhere.
Wrap Up
There’s a lot to juggle when navigating cancer treatment, so its important to build a strong foundation. That means creating routines that give you the kind of structure that lets you respond to changes and new needs without having to recreate the wheel every time. Hopefully, the information and suggestions I’ve shared here are a helpful start to building your own foundation. Part of build that structure is to keep the basics in sight, like the cleaning and infection steps in the start of this article. All of the ideas I’ve listed are based on my personal and professional experience and my hope is that you’ll take all of the information and tools I’ve shared and make them work for you.
My best advise? You’ll see a lot of tips and tricks so, take what works for you and leave the rest. Please don’t get caught up in trying to do things “perfectly,” because there is no perfect. What matters, is finding what helps you get through the day as well as you can. If you made it through, then you did it perfectly enough. Now, more than ever, getting through the day is a victory you should savor.
