As a caregiver of a cancer patient, I have only ONE patient. I know him inside and out. I am with him everyday and know his medical history better than anyone else anywhere. This is important because his doctors have MANY, MANY patients and even the best doctors don't know him like I do. Of course, I don't have a medical degree of any kind so we need to rely on the good docs for their knowledge and experience---but sometimes they are wrong.
Being a caregiver means more than seeing that his basic everyday needs are met and that he gets to where he needs to go....
- It means holding the doctors and nurses accountable to do what they are supposed to do....making sure that the proper medicine dosage is being given and prescribed (really they make mistakes a lot - this is scary!) or making sure they remember his medical history. Doctors and nurses are human too so they make mistakes too - they need someone to double check them and this falls into a caregivers roll.
- It means researching the latest medical cancer breakthroughs so that we can ask well educated questions at the appointments. This includes researching trials, finding out when drugs are newly FDA approved and showing promise for specific cancers, consulting other doctors and institutions. It takes time but it is crucial.
- It means connecting with others in the community that are going through similar situations so that you can learn from each other. This can be done through fundraising organizations or online support groups. I have met so many people who have helped me and who understand the battle.
- It means learning how to read scans and medical reports so that you can stay on top of the care that your loved one needs and deserves. And asking questions and taking notes so that you have accurate information and plans.
- It means letting others help out - no one can do this alone and no one should have to - let others help. They want to help, they need to help.
- It means trusting your intuition...if you think the doctor is incorrect, get a second opinion or a third opinion. Remember you know your loved one BEST and you have a better read on them than anyone.
- It means never giving up but knowing when to slow down.
Thank you to all of you who are helping with meals, picking up groceries, driving my children, providing a listening ear, and so many other things...it allows me to spend more time being a caregiver for Scott, my kids, and still work full time.
Lastly, Scott has 2 appointments on Monday - one with the surgeon and one with the oncologist so we will be spending the day at MSK in the city.Today I pray that Dr. Mellinghoff has a plan for Scott because although I know about some new drugs that I may like him to try next and I've researched the clinical trials, there is so much I don't know and I hope he has taken the time to get to know Scott and make a good decision specifically for him.
I'll post more next week....stay well and enjoy the weekend! :)