Tuesday, October 7, 2014

Hurry Up And Wait

I was told at the beginning of my diagnosis that this "journey" is full of waits.  You are told some information and then you wait to hear more or wait for test results or wait for another appointment date or wait for a consultation or wait to be accepted or wait to be heard or wait to be seen or wait for remission or wait wait wait...  And I have found this to be true.  While I am not complaining - the last six months have overall gone quickly and my medical team is very diligent - some days it does seem to take forever to get to the next word or step. 

Two weeks since the thyroid results, and still waiting for details and a surgery date. Though last week I was told surgery cannot wait until the new year, it has to be ASAP. 

In the meantime I am kept occupied with the everyday stuff that comes with recovery from major surgery and having a young(ish) family and medical therapy treatments. There are good days and bad days, just like everybody has, they are just different. (For the record, there aren't just my ailments to deal with around here, there are ear infections and permission slips and teacher meetings and scuffed knees and phone calls and paperwork and appointments and the list goes on LOL  Lots of which I have help with, but some stuff I still have to do myself, and thankfully, I am still here to do it)  

These are unpredictable days; one day I can clean the laundry room AND cook supper from scratch, and other days I can hardly get out of bed.  It is very frustrating, as I cannot plan in advance which day will be which.  A crystal ball would be vastly helpful!  I rarely commit to plans to get together with people and I appreciate friends' flexibility and understanding with my unpredictable behaviour.  I have been known to abruptly bail from a visit and though I know my company understands, I still feel badly afterward.  

I spend a lot of time resting, but of course it is a daily struggle to give myself permission to take this time to rest.  I want my life back, I want to be normal and to go to work and to not have these ridiculous conversations about some crappy disease that has changed my life.  I don't want to be a burden to others, my family and friends.  I don't want to wait and to wonder what is next, what I should do about my future, or really what I can even do about it.  

Everything is so uncertain, there does not seem to be any good or concrete answer with melanoma.  There is no remission, nor definition to it's being gone, no measurement of the success of the therapy treatments.  There is just waiting, waiting for the next CT scan to see if it shows up anywhere else, waiting for the results every three months. Woohoo have another three months under my belt, as my cancer-survivor friend cheerfully reminds me.  

Stay positive everyone says... I assure you I am trying to do that, and I appreciate your positive sentiments and I am listening! (And most of all I need you to stay positive for me when I claim I can't do it) But the reality is that no amount of remaining positive alters the fact that my future is changed. The way I view my daughters, my family, my career, my finances, retirement? travel plans - everything! is different.  I am still trying to figure it all out and more than ever I am painfully aware that there is no single answer, no correct solution, and no plan.  Just wait..? Live for "every three months" for the rest of my life?  Better than the alternative I guess, but certainly makes me feel uniquely restricted.

I am trying to remain calm and follow my own advice to take one day at a time.  But the control freak in me is just plain freaking out.  It's all part of it I know, and maybe that is the lesson I am to be learning to take from all of this, maybe I am supposed to just chill and allow others to take care of it for a bit.  Thanks... but I was okay with how things were before. Just sayin'!  I'm not good at waiting, I don't like it, and I don't want to do it. 

1 comment:

  1. Thank you for being brave enough to share the frustrations that you are going through. Love you!!