Howdy all! As you see the title is different tonight. Bear with me, because in the past 12 hrs. I have managed to enter pretty much every emotion known to human kind (or people kind).
Living in a world dominated by the big C word, is pretty much the hardest thing I have experienced, sadly more than once. It is an absolute rollercoaster of emotions, of which one has little control. Most of the time fear is front and center, but sadness, is a close second, depression is fairly constant, concern , self pity, exhaustion, all ride continually on ones shoulders. Those emotions can only be held in place with Hope and faith, and sadly very little trust. Hope, however, is the most powerful positive emotion. It is absolutely necessary to make one's way through this horrific train wreck, far too many of us find ourselves. Hope is what allows folks to grab onto a tiny glimmer that they pray will lead onto sunlight. Hope is all that allows one to get through the times of fear, and sadness, it is all powerful when everything else has been stripped away.
I have survived all these months with that tiny glimmer, some days it is really hard to find, but I dig through, and there it is, buried under a pile of sh*t that often is so deep it takes all day to find it, but it is always there! I promise, if you ask anyone going through this journey, they will tell you, it is impossible without Hope.
I remember my sister in law telling me how much she hated her video calls with her oncologist. How she would finish the call, and feel wiped out, worn out, without any hope. Well this seems to be the goal of some.
3 weeks ago I started getting this uneasy take during the Dr. Appointment. It was full of the reality, stage 4 , no cure, just doing this to help with quality of life for as long as they can..blah, blah, blah. O.K . we have had the reality check, we read Dr. Padma's little blurb on the consultation paper she claimed she had informed us the prognosis was poor and it was palliative care etc etc. We then had a meeting with a nurse practioner, who explained there is no cure, but it can indeed be treated. We had a face to face with an oncologist who specialized in Chemo care, who also explained not curable, but there is a specific treatment that focuses on the type of cancer cells Chuck has, and if that didnt do the job there were many other options. When I asked for a prognosis, he refused to offer one, as he stated until Chuck had treatment and he was able to see how it went, he could not say what side of the Spectrum Chuck was on, so even with his decades of experience, he was not going to offer a prognosis. Well that talk and long chat answering all sorts of questions for us, had us walk out the door with Hope, lots of it!! Also a chat with the director of the Northern Cancer Clinic stated more of the same, palliative did not mean end of life when used in this case, it was palliative to shrink the tumour that was causing him difficulty eating, so he could continue on in other treatments.
Todays appointment attempted to remove all of that Hope, his tumour causing cells (cant remember the medical term, but these are the nasty cancer cells that come off of his tumour and attempt to find new places to settle and grow) had at his last blood test 4 weeks ago, dropped from 240 to 54!!! Not a Dr. but this was clearly an enormous drop, and huge positive. OOOps...don't you dare grow that hope, this will not continue, at some point the treatment will stop killing them off, and they will settle throughout his system and they will not be able to kill them off!!! Holy crap folks, is it time to give up? This is NOT what folks attempting to stay positive need to be told after a drop like this, we need to hear that maybe today's blood work will show another drop, because that is Hope. Clearly this may be a sign on where he is going to head on that Spectrum?
So, it has taken me into the evening to decide the appointment today was a total waste of our time and energy. Everything we heard beyond a certain point, has now been thrown to the wind. The treatment is clearly doing a damn good job, he feels pretty good, is eating normally, has put on weight, and now is able to work a part time job that gives him moral support. We do NOT need a monthly dose of negativity, dealing with a disease that feeds on the negative.
To stay positive is not easy, to give up and focus on the dark side is possibily the ultimate worst thing to do in this battle. We are in this to win, and today our tiny glimmer got a lot brighter. We will NOT let the words we heard today dull that shine. We know there are folks surrounding us with their prayers and positive thoughts and we are standing in the middle watching the shine. Thank you all, we are walking towards the sunshine, slowly but surely.
