Patient Centered Design.
When it comes to a cancer diagnosis, timing and organizing are of the upmost importance.
Cancer can rock a family's foundation. Cancer can change a person's life forever.
Yet when you or a loved one are newly diagnosed it's important to get organized and to get organized quickly. You will feel sad, angry, frustrated, anxious, and more. You might find yourself thinking "Why me?", "Why us?" but we are here to help you put these emotions into an action plan.
To help you get organized and in the right frame of mind, let's use the analogy of our solar system:
- The patient is the sun: everything revolves around the patient.
- The family / immediate caregivers are the Earth: their existence as caregivers is directly dependent on the patient.
- Everyone else, all other friends and distant family are the other planets / stars in the solar system: some closer, some farther away, some shining brighter than others. Just because you don't see them, doesn't mean they aren't there.
THE PATIENT: AT THE CENTER
At the center of your team is the patient. It's important to remember this. Their health, their well-being is crucial. Research suggests nearly 70% of cancer patients are depressed. Some patients have trouble being selfish. A patient often needs to be selfish and can't worry about everyone's wellbeing, even if accustomed to. Each day, the patient may need to focus on their own well being and this sometimes means the patient's energy is best suited when directed internally: resting, exercising, meditating, or simply taking their mind off of everything.
Listen to the patient, talk to them, be present with them. It's not always about "doing" something for them, but about "being" with them. Listen with the intent to understand what they need and how they are feeling both physically and emotionally.
THE CAREGIVERS: SOURCE OF ENERGY
Caregivers exist because their loved one is sick. You might not even know you are about to become a caregiver. As with many of us, it might be forced upon you. But there are many things you can do to be proactive, stay organized, and remain positive.
First, as a caregiver it is important to note that you may need to protect the patient from certain information or statistics. They might not want to / need to know certain things.
Second, throw cancer survival statistics out the window. Forget them. They are 10 years outdated, don't account for top level of care, factor in the very unhealthy and the very old, and they don't factor in a positive mentality. Be your own statistic!
Third, know that you might start to feel very overwhelmed and quickly AND THAT IS OK. (Note: this does depend on your type of cancer and severity and could vary) The doctors will be giving you a lot of information, family & friends will be calling, emailing, and texting you wanting to know information. It is ok if you start to have these feelings - we are here to help.
Start to assemble your team. Knowing who else will be aiding you in your fight against cancer, what roles they can play, and how to assign roles is critical and will help you be proactive and keep the wheels turning.
Finally, don't forget to take care of yourself. Everyone will tell you this, but it's important. Think of it this way: if you get sick from lack of sleep or stress, you can't be the caregiver you will want to be. Especially when a patient is undergoing chemotherapy - with a weakened immune system, you won't want to come into close contact with the patient out of fear of getting them sick.
FRIENDS & FAMILY - SHINING STARS, SOME BRIGHTER THAN OTHERS
When you look up at the night sky, some stars shine brighter than others, right?
Friends and family from across the country, perhaps even world, may offer to help you and your loved one in their fight. Some may rise to the occasion, some might fail to meet expectations. However, if you are lucky enough to not be facing this fight alone, remember that it is important to help your friends and family direct their support in the appropriate manner.
Some will offer to cook meals, some will offer to drive to treatments / doctors appointments, others will offer their input, suggestions, guidance. And many will say, "Let me know what I can do to help."
Take a look at your support network and figure out everyone's strengths and weaknesses. Perhaps there is someone on your team that is an amazing cook. Have them make some meals and coordinate / liaise with everyone else who wants to bring over food. Let them take ownership of meal scheduling.
If there is someone in your family good at research, give them a list of topics to research. If there is someone good at writing, have them help you set up your blog. And so the list continues... but remember to delegate.
There is a very subtle but important distinction between, "Let me know what I can do to help" and "I know you have a lot on your to-do list. Why don't you give me something I can do to that you know I'll be good at." If you prepare for the former, it will save everyone time and energy and empower your support network accordingly. For more on this topic, read our blog post.
In order to help you get prepared, organized, and quickly, we have put together our first list of five resources, our 'First Five'. Take a look at the resources and the explanation as to why they are important and get moving. We'll be by your side.
TOO LONG ; DIDN'T READ (TL;DR)
It's important to keep the patient at the center of your attention, care, and focus. By remaining organized & informed you can be proactive - even as a caregiver. Link to our First Five resources.
Access, save, and connect with all resources listed on our site (and more) by creating your CQ Dashboard personal account. Your personal Dashboard account allows you to create notes, save links, access the latest research, and connect with others who have similar experience.