Prince George's Serial Killer Part4

 This will be a very tough one to put out to the world, but I made a pact, I will put our journey out to the world, so those who follow in our footsteps are never as shocked and disheartened as we have been. Tonight as I walked in the dark, I wondered...Are we the ones who will pay the price so this insanity can be stopped? I hope not, but something has to happen soon, before more people have to suffer through the nightmare we are in.

  so you have heard everything up until this point. I put down the play by play of our "consultation" with the Radiology Oncologist Dr. Padma, you will know how little we were told at this meeting, and how we were told she really could not tell us anything as radiation treatment was something that was not tested after treatments ended, in fact we were told Chuck would be the only one to know if they were working because he could tell if there was a difference when he tried swallowing. I need you to keep my statement in regards to this meeting, it is extremely important in context to what happened today...

  So he is into radiation treatment number 4. We woke up this morning at 4AM, because his treatment was just after 8AM.He has been very nauseous the past 4 days, and his food intake has dropped dramatically, we came up with the plan to use his feeding tube 4 hours before his treatment (no food or liquid allowed 4 hours before treatment). The dietician suggested a high calorie protein powder, called Mutant Mass, she said this would provide the calories needed to help him bulk up for what was to come(remember I asked her if she knew something we didn't when she mentioned this, and she said she had mixed him up with another patient). We woke up at 4, I made up the drink, and he had no issue when this was put into the tube. Back to sleep for a few hours, and he felt pretty good when we woke up to get ready for the appointment. That is, until he took the anti-nausea pill (cost of this prescription was $250) 20 minutes after the pill he was very nauseous, a little dizzy as well, kept feeling like he might pass out. Did the treatment, stomach still very queasy, decided to try and see a dr. regarding the medication, as he mentioned his issue with it the very first day, when he saw an aura in his peripheral vision.  Nope, no Dr. available, we can see a nurse. So Chuck explains his issues, ah Nurse has to contact Dr. Padma, who is on her very last day in Northern Cancer center, and he will call us later.I then ask the nurse if Chuck is getting a higher dose of radiation in his treatments, because as I have mentioned, everyone else here told me they are getting 30 treatments. I told the nurse, we are curious as to why he is only getting ten. He said not to be concerned about palliative radiation it can work very well, and continue to work after treatments stop. I admit the word palliative was lost in this conversation. He also offers to show us where we can get all of Chuck's medical records since becoming a file with the Cancer center.

  Hold onto your horses folks, this is when it gets absolutely bizarre. The lady in the office has Chuck sign a paper stating himself as well and me, can request these papers at any time, and prints all the records off!  Back to the lodge we go with our little pile of records. Chuck is still feeling sick to his stomach, so he lays down, while I dig into the records. OMG..My stomach drops reading the consultation records the Dr. wrote. I am going to put down the small section that blew our minds, it will likely make you shake your head.

  Here goes, her dictation for the record.In summary, Charles with stage IV  esophageal cancer presented with severe dysphagia will be a candidate for Palliative radiation to control his symptoms. Made them aware that it is not curable, and has poor prognosis.Palliative systemic treatment will be the primary modality of treatment, and will be discussed by his medical team oncologist shortly.

Just let that sink in folks. We have been dealing with this radiation woman for a while now, we have been dealing with a dietician, nurses, and a social worker, and radiation technicians, all of whom apparently knew the prognosis, but we didn't have a clue, and no one would answer all of our questions because that is not in their line of command. All must have assumed the Dr. had indeed told us this shit!

  So I leave it to your imagination how you think we took this f*cking news, I can tell you, the devastation did not match the absolute anger, total loss of trust  and faith in this cluster F*ck of a system, and feeling like his life was just shoved out the door, because either the Dr. was too busy and did not do her job properly, or..do you think we should be looking at the race card? Hey sorry, but there has to be some reason this nightmare of an error occurred. Our thoughts are all over the place, we are suppose to trust these people to do their utmost to keep us alive, this woman decided he was simply not getting anything besides the bare minimum palliative care.How did she come to this decision? We don't know, our surgeon told us to have faith, treatment has come a long way, apparently not long enough for this Dr. 

  Now I will tell you, at least one of the horror stories I have heard from a lady at the lodge, will stay silent, She told me I had best wait until his treatment is over before speaking up, she was going to wait to tell her story, because she feels if she speaks up, she will somehow lose her safety in getting her best care.  I do believe that is why so many disappear with their nightmares. I can't wait ..because clearly he is not getting his best care right from the get go.So..now we wait until Monday, and we have an appointment with the social worker Tuesday, although I emailed her this afternoon with our story, so perhaps we will meet sooner. 

  Now after reading these records, the phone rings, it is the very nice nurse we spoke to regarding the medication. He apologizes , he was unable to arrange a meeting with the Dr. but she did say Chuck was to stop taking the pills, and had mentioned another anti-nausea  pill, but she had not left a prescription. Thats when I told him Chuck had decided he is not taking any pill, and that we had read her consultation record and she had lied about telling us any prognosis or palliative treatment or anything beyond stage 4 that had spread into 2 nodes and his liver (remember she said spine, as well, but we straightened that business up). He was very shocked and offered to have us meet with a counsellor, told him we did not want to meet with anyone right now, we were trying to grasp what we read, and that I had emailed our social worker right after reading this pile of crap. He was very nice. told me he had planned to contact the social worker when he hung up, I told him she was off until Monday. Some staff is still kind and compassionate, he is one of them.

  We have decided we will demand a second opinion and after reading our rights in this matter,it has to be a Dr. not connected to this one..hummm..think we can only find one of those outside the province of British Columbia, so, I will keep you posted on what sh*t hits what fan, or if we will not get a non biased Dr. as our second opinion. We were ready to fight this disease, but now it seems like we have to fight the system before we are allowed the needed weapons to fight for his life.

  This seems so surreal to us, like we just don't matter in the swing of things, trying very hard not to feel defeated before we even get a decent chance to do battle. More to come, I am so hoping it will be a bit brighter, as at the moment it is feeling pretty damn dark!