By: Leah Taylor
An interesting blog post caught my eye over a month ago. I did a quick read over it and went on. It was a list for newly diagnosed cancer patients and caregivers. Far be it from me to say: “Excuse me, I have issues with your list.” But, I guess I really am saying: “Excuse me…” After some mulling over things, I want to issue my list. Warning: mine is different.
My Recommendations for Anyone Newly Diagnosed
1. Stop. The tough reality is that anyone hearing “You have cancer” needs a bit to process and internalize what you just heard. Very rarely is a cancer diagnosis a medical emergency. In the odd case it is, make the necessary decisions to get through the “emergency” part and then: 1. Stop.
You might need a week. You might need a few weeks. Just let yourself get through the initial shock of things and really digest this new information. If you give yourself this time, you will be way ahead of the situation from the beginning. Not accepting the diagnosis can make for a harrowing beginning for the patient, caregivers, and healthcare team. Obviously.
2. Get Educated. On my list is as important but much more involved than #1. After understanding and processing what your new reality is: get educated. The level of education you need or want is simply your choice. But, at least get the basics on your type of cancer. Prior to my first breast cancer diagnosis, I was clueless about the types of breast cancer. Or, even the implications of the types of breast cancer. Why was it important to me to get this education?
This leads me to #3 on my list.
3. Drive Your Own Train. I want to be the leader of my health care team. I want the buck to stop with me. Some people are not willing to have that responsibility out of fear. Some people want to be told the next steps to make.
Let me be very clear, being the leader of my team does not mean I overstep my bounds and force health care decisions. Being the leader of my team means I want to know what my team is thinking. I want to know what the positive things I can do to help them do their job effectively. What do we do next if this step doesn’t work? And, I always know as the leader, I can stop them and say: “This isn’t working for me right now. Help!” Trust me, in a situation with little control, knowing I am the leader helps me feel a little control in this tough situation.
This next step can be the toughest.
4. Don’t burn out your caregivers. Some people are very dependent on their caregivers and wear them out in the first month. And, yes, I have literally seen this happen. And, it’s every bit as dismaying as it seems. Wearing out your team in a few weeks guarantees you will be very lonely as time goes on. Just sayin’.
Conversely, some of us are so incredibly independent that when things crash, it causes problems as well. A recent situation has had me backtracking to get my caregivers back up to speed as I operated with the “Things are fine, so no need for extra information for now.” That works well as long as things go well. When things unravel, catching caregivers up can cause hard feelings when they realize they are months behind the curve. Getting them to understand this was to keep them from unecessary worries can be a bit taxing. Once everyone is on the same track again, it is ok. So, I have learned, from experience: finding the balance to keep caregivers in the know without stressing is difficult. Each patient and group needs to find their best way to operate, however that might look.
The last item on my list for cancer patients…
5. Don’t leave anything on the table. Some people are so overwhelmed with their diagnosis they forget to go on living. It’s an easy thing to do. But, realistically speaking: we are all guilty of forgetting. Life is short. Live it well. Living well is the best any of us can do.
My Recommendations for Caregivers
1. Stop & digest this new information. If you are having trouble digesting this information, chances are good your family member is as well. Never, never fail to ask for help, if needed.
Here is a good spot to point out that many cancer centers offer free counseling for patient’s and caregivers. If needed: ask. If available: use it. Cutting out issues ahead of the game is one of the easiest things that can happen to make everyone’s life easier.
2. Get educated. The level of education you need as a caregiver will show itself as time goes on. You need enough education to discuss things competently with the medical team. But, you obviously don’t need a medical degree. Finding the comfortable spot will be evolving. Be patient.
3. Helping your loved one drive their train. If you help copilot that train, you are helping give your loved one a small amount of control in a nearly uncontrollable situation. That is a huge gift in such a tough situation. It’s not possible to achieve the desired amount of control. But, giving someone that small amount of dignity can be incredibly gratifying for everyone.
4. Help your loved one without burning them out. Helping your loved one without a “bull in china shop” approach can avoid hard feelings and help build a solid team that works together. Nobody wants their autonomy taken away. Making sure that you, as a loved one, are being the best caregiver you can be without taking away that power is a tough rope to walk. Again, be willing to adjust.
5. (Should be on all of our lists, lifelong). Help your lived one to live their best quality of life. And, oddly, as you are helping them, my guess is you will be living closer to your own best QOL.
As you see, my list is very condensed. But, I think that’s the best way it will work. I think by understanding there should be flex in the list allows for the best way to make things work for both patient’s and caregivers. Is my list comprehensive? No. It’s not meant to be.
I hope you find my list helpful. Feel free suggest better options. I’m here to learn also.
As always, thanks for reading. Let’s all have a great Christmas season!