Okay, I’ve received a few call outs on some very important subjects in the war of Myeloma, and thought why not prepare a simple reference to be mindful, as you take on your new journey in fighting multiple myeloma…. or any ailment
Here are the top 3 for 2016
To tell the truth my time with Myeloma and handling other family health matters- I feel like I should sign up for a position as a Patient Advocate because there’s something to be said if you don’t speak up for the most important person in your life in this moment in time… and that is YOU!
Learn to Listen… Then Speak
Newbies- You”ll be bombarded with a lot of details about your present position. I’ve been there – it will be very overwhelming and at times frustrating.
Seasoned- I know it- you know the routine and want to get on with the technicalities. You’ve been through the routine with Social Workers, Oncologist, Nurses, Insurance Claims for a while now.
Well no matter if you’re new to this game or adjusted to the protocol- know this….
Learn to listen first then react. I know for some this is hard to do, at times I’ll jump in when the flow of conversation is happening between parties; However, what I’ve noticed is that you may tend to miss some important details while a doctor or nurse is giving that bit of details that may mean huge things in your treatment. Now that’s not to say you can’t ask these people to repeat it, but by listening the first time you can prepare to come back with a sharp reply to what they’ve just said, which just may pivotal in your journey. Basically this is basic communication 101- listen then speak – speak then listen. We get so caught up talking when someone is else is speaking we miss some important details, or details are repeated when other areas of the conversation are missed all together. Missing details on a myeloma diagnosis is not good!! Especially in today’s medical realm of getting a doctor for a good 10-15 minutes if you’re lucky. We have the time ensure we spend it reasonably and wisely when we get this doctor one on one. Now if your Oncologist doesn’t say much- well that’s unfortunate and may be time to seek someone who is a bit more involved, or in this case you may have to be the one to get the conversation going. The bottom line is the terminology and process is so complex and confusing, but by really tuning in and letting things process before reacting means a whole lot in the long run.
Be a Kind Nuisance
It’s funny… but they know me in my clinic… my whole team knows I don’t play that ^#%%@
I want to know:
-What are you doing?
-Why are you doing this this way today?
-Who said I have to do that?
-Who is this person?
-Uh Uh is that a new nurse?
Though we laugh about it, I’m in the know who my team is by name. Let’s face it if you see these people every week like myself, they should be like your second family to some degree. You want to nicely express what is going to work and what is not. I always tell them when it seems I’m a bit much with the questions- Look I’m an advocate for me. I know some of you may not have the strength to be bothered, but if you’re lucky that’s what your caregiver is there to help you with. Don’t just go with their flow… they must go with your flow!! Which leads to 101 C
Make sure They Know You Mean Business
I’m not the one…. if you know me well you know that’s my signature statement. “You’re not the boss of me.” The only boss in this scenario is my Lord and Savior and Me- period! I take heed to 101 A,
but best to believe this is a partnership and if I’m not feeling what you’re handing me- then the conversation needs to be revisited. Take notes if your confused and come back to it later. I tell you you will get respected when you’re part of the team and fully involved in your treatment. At times you may have to be a bit strong, so they don’t forget about you- quite frankly. It’s human error I suppose, when the team is looking at hundreds of myeloma patients a day, they are not going to remember somethings about your situation…. unfortunately. Oftentimes, we can’t just lie back and let them handle it…. do you see how many times you have to give your name and date of birth to ensure they have the right person? It’s needed but very scary and detrimental if you’re given Dex that was supposed to be Krypolis…
Be alert and Safe my MM’s