One of the very first things we recommend that patients do upon a serious diagnosis is to buy a new empty lined journal, preferably a leather bound journal that will hold up to heavy use, but even a 50 cent composition memo pad will work. This is for collecting all the information you are about to gather. If you are computer savvy you may want to set up a spreadsheet to log information in with page tabs such as professional contacts, treatment centers, and medications. With emotions and questions racing through your head, many important details can be forgotten unless you write down everything! A journal will become the central place where you keep information and manage your strategy, so you should carry your journal with you at all times in case you think of something important to note or ask.
At the top of each page write the date that you begin the page so you can easily and quickly refer back to everything. Immediately start writing down every question you think of so that when you visit a physician or medical provider you will not forget what you wanted to ask. Write down all new medical terms and their definitions, as well as any information on medicines and treatments that you find. Collect business cards form every doctor, provider, or facility you visit and tape these cards right onto the pages of the journal. This way you will always know right where to find them. Write down notes from every visit as well as the answers to your questions.
With these answers will inevitably come more questions, and this journal will serve as a reference for you to fall back on when you cannot remember every detail of your meetings and conversations. Every time you meet with a medical professional of any kind, get their card and tape it onto the current page so you will always have it handy. Take notes on everything! You never know when a specific contact or small piece of information will become important or lead to a breakthrough.
My sister who is a Physician Assistant at the University of Washington Medical Center bought me a journal when I was diagnosed and began taking notes and taping business cards in it for me. I kept it up and I use that same journal to this day. In the search for the cure for my leukemia, I often referred back to information I had written down long before. It was and still is an essential tool for my survival.
Announcing Your Diagnosis
“We get by with a little help from our friends”, the Beetles.
How true this is! Reaching out and involving others in your journey, and letting others help, is the primary theme of CrowdHealing. Alone, we struggle! Together, we heal!
Involving your friends, family and colleagues can not only give you support and motivate you conquer your illness, it gives you the extra resources and possibly access to important contacts. It was about all the people who were supporting me.
Eric Drew states, “Without the undying support of my family, friends and community, I would never have survived the leukemia. Withdrawing and trying to take it all on by yourself will definitely minimize your chances of success. Do not be ashamed of your diagnosis and don’t be afraid to reach out!”
Now is the time to call in your favors and cash in your karma points. You will be amazed at the love and support you will receive if you are open to receiving it. By the way, allowing others to give and help out and participate in your struggle can be one of the greatest gifts you can give back to them. As I have seen, It can literally bring whole communities together.
By the way, is OK to admit that are scared and that you need help, because we all do. Ask and you shall receive. The people that care about you will want to help.
One idea is to set a time in the evening after work or maybe on the weekend. Invite all the family, friends and neighbors that you can. Ask everyone to bring a snack or dessert and Let them know you have an important announcement to make. Speak form your heart and let them know that you may soon need assistance with things like grocery shopping or errands, shuttling kids, watching your home, rides or treatments, or even advocacy and fundraising. You will be amazed at how sharing your journey will create an incredible amount of support. Please take time now to Share your Journey on WeHeal, and join the appropriate community of other patients dealing with the same issues you are.
It is very important to prioritize and be clear about what is most important, your life. Some people worry more about their job, finances, paying their mortgage or ability to work than their health and well-being. Some people are ashamed about their diagnosis, and are more afraid of what people may think and the social stigmas associated with their disease than they are about survival itself.
With a new diagnosis, it is now more important than ever not to let yourself get caught up in the minor things and stay focused on the bigger picture!
Some people will choose cheaper treatment options because they are concerned about finances, but what good is your house or your savings if you are not alive to enjoy them? I once had the father of a 17 year old cancer patient justify keeping his daughter at a local hospital where she was receiving terrible treatment, as opposed to a specialized cancer care facility 45 minutes away because driving her there 3 times a week would be “inconvenient”. Remember, the most important thing, the only thing that matters, is your life and your health! Everything is secondary to that.
Continue working only if it is less stressful for you to work than not to work. Advocating for yourself or another, depending on the situation, can be a full time job and you do not want to overload your plate.
In order to focus it will be important to simplify your life. If you have been diagnosed with a potentially terminal or serious chronic disease, nothing is more important than finding the cure or very best treatment possible. In order to focus on this 100% you will need to simplify your life as much as possible. To achieve this you may want to consolidate your credit cards and bank accounts, postpone club memberships, and shed unnecessary commitments in any way you can. You can no longer do it all, and it is important you don’t take on too much!
Part of not trying to do it all is learning how to delegate and have others take care of things for you, while you focus on the most important thing in your life! Ask and you shall receive! You might be very surprised at who steps up to help!