Earlier this month, I attended the Blood Cancer Conference put on by the Leukemia and Lymphoma Society. It was such an incredible opportunity to learn more about the state of cancer recovery from doctors and experts in the field.
From all the incredible speakers there, it was a topic that Dr. Saro Armenian brought up that really stuck with me:
Healthcare is moving away from a doctor centric system.
Our healthcare system is changing. For decades, we have been operating with the responsibility of care placed solely on doctors and clinicians.
However, with changes to our healthcare system and medical information being so accessible online, patients are having an ever-increasing role in their treatments. We are moving to a system of care that will more equally share the responsibility of treatment between doctors and patients.
Because of this, I wanted to bring up some key points to help you manage your cancer treatment as we patients begin to hold more ownership in our care.
1. Stay Educated & Engaged
It is super overwhelming to process everything going on in treatment. From the long hours in the clinic to the fact that every medication makes you question whether dyslexia is another symptom, it can be hard to manage everything that is going on. However, it is so important that you take the necessary steps to understand what is being done to your body.
First off, research what’s going on in your treatment.
You should know what prescriptions you are taking and what effects they will have, both intended and not.
Learn about how to best take care of your body. If you have a new port - make sure you are fully educated about how to clean, maintain, and protect your line.
There’s a lot to take in…so, ask your doctor a lot of questions!
Never be afraid to bring something up to them. Your doctor is your greatest ally in your treatment and they have your best interest in mind. Trust their judgement and make an effort to fully understand your treatment plan.
Another great resource are other patients and survivors.
Talk to them about what to expect with a new drug or how to best remedy some side effects. The cancer community is incredibly supportive. While no treatment plan is the same we’ve shared similar experiences and can give you a few tips & tricks.
You are not alone, so connect with other patients! We are all here for you so don’t be afraid to reach out!
2. Recognize your emotions
Living with cancer is an unbelievably turbulent emotional journey. It is filled with exhilaratingly emotional highs and some truly debilitating lows. Because of this, it’s normal to experience fluctuations in your mood and outlook.
I’m going to say that again.
It is totally normal to feel an entire spectrum of emotions during cancer.
Fear, uncertainty, anger, denial, hope, relief, and determination all come with the diagnosis. But with all these feelings dancing around your emotional state, it’s important to recognize that they are just that: feelings. Try to maintain a level head and not let them interfere with your decision making in treatment.
3. Ask for Help When You Need It
Treatment is hard. There is nothing about this process that’s easy. But you do not have to carry this burden alone. Never ever be afraid to ask for help when you need it.
Most people would love to support you, they just don’t know how.
So, let them be a part of your cancer journey and give people the opportunity to care for you.
Most people want to help but as patients it is our responsibility to pull people in. Whether it is asking a friend to keep you company during chemo or going to a nonprofit for counseling, give others an opportunity to show love for you.
Just don’t be afraid to ask for help when you need it.
One more thing...
You need to recognize when you need help.
This can be really hard.
As patients we always have the term "warrior" associated with us. While I'm all for the association of strength and power, it can sometimes feel like we have to have the brave, stoic independence of an actual "off to battle" warrior...all the time.
But thats not true at all.
We all have days where we will need assistance, but you need to recognize that you need it. Then you can ask for help!
4. Monitor your body
A diagnosis means your body will undergo changes.
There are the obvious ones like losing your hair and feeling nauseous. Then there are the ones that are less talked about – fluctuations in your weight, skin irritation, sensitivity to light, a compromised immune system.
There will be A LOT happening to your body through the course of treatment. Because of this, you should stay vigilant about the changes your body is experiencing.
The first step is to be in tune with your body.
Study your body and constantly be checking for any changes – discoloration, swelling, stiffness, tingling, lethargy, etc.
The next step is to track these changes.
There will be quite a few and it can be really easy to forget what happened when. Whether you keep notes on your phone or go more traditional with a journal, it’s a good idea to monitor these changes.
Why, you might ask?
Every week, there will be a different cocktail of drugs in your system. With them rotating out, it can be difficult to ascertain what symptoms arise from each drug. However, the more detailed your monitoring and recording, the better equipped your doctor will be in diagnosing the cause of your new symptoms.
So there you have it - 4 actionable ways to manage your treatment!
Regardless of how our healthcare system changes, they will all be important for you to keep in mind through treatment.
Here’s to patient empowerment!