One more slap in the face by British Columbia's Cancer Care

I imagine some folks are a wee bit tired of the ongoing saga, regarding Chuck's nightmare journey through the B.C. Cancer  Care system. At this point, I need to continue putting down the continual hurdles we now face, trying to make changes, so others do not find themselves without a life jacket in an ocean of crap!!

  I spent yesterday, last night, and this morning getting everything in order for this call that was supposed to be a qualified Dr. going through his file , and giving us a "second" opinion. As we had previously been told, the legal risk management folks in the agency had said "No" to this request, but then that changed or so we thought. It didn't change, although this Dr. did state she had gone through his file, as well as read some of my blogs. So, a step forwards in some respects, except she was not a Medical Oncologist, and she was not in Northern British Columbia, but in Vancouver or Victoria. 

  We had planned to record this zoom call, but, as B.C. law requires us to ask permission, we did. OOOps...yeah no, not possible as the legal department had given her the word she was NOT to allow this, she was under strict rules from that slimy group. Thing is folks, up to this point the only contact we actually have a record of, is a letter from Provincial Health, which has many discrepancies(not facts). They cover their butts with phone calls, or closed meetings, no evidence to hold in one's hand. 

  We were given 1 hour for this call, however we did go over that hour because, I can say without hesitation, we ended up with more questions than we started with. I realize I am writing for those who followed this journey, and read all of Chuck's experiences, and have some clue as to what our questions were, the answers we received today were totally unacceptable, and we need to pity those who end up on the same road as he did.

  Today the fact of the time delay in him starting treatment, was explained as  pretty normal. However, we refuse to accept this, as it was explained part of the wait was because the file went to Vancouver instead of Prince George, so there was a 5 day delay! 5 days was a drop in the bucket of the wait time, then we were told a Dr. will pick up the file and review it, and decide what is the best course of action. This did NOT happen, as I explained I called Prince George for over 2 weeks after the file arrived, and no one had reviewed it, let alone touched it. 

  Once again, we had to listen to someone tell us that he was stage 4, it was in his esophagus , his liver and his nodes, not curable. Once again, we knew this fact. Dr. Padma's mistake on claiming his previous broken back was spinal cancer , clearly showing she did NOT read his file, with the excuse that sometimes Drs. will miss things in the file???Would you feel comfortable with this statement if your life depended on the correct amount and area that was going to be subject to radiation? The false statements in her consultation report, well perhaps she didn't make things clear to us in the meeting, it was simply an issue of her not communicating well. Long story short, on all of Dr. Padma's errors, she is no longer with the agency, so we will never know the facts.....

  According to this Dr. MRI's and Petscans would not have made a difference in his case, the continual repeat of the original CTscan was proper procedure in his case. As we learned, Esophageal Cancer seldom goes to the brain, for all we know he had brain cancer before the esophagus, again, we simply have to accept because of course he never had a full body scan. 

  The one and only meeting with the Oncologist, who wrote his perception of the consultation, which trust me, is far different from my lengthy blog, because this consultation was far more important in my world, than his, and his decision when a return on cancer was suspected to sit back and wait 8 weeks, was absolutely on point, apparently! The refusal of a prognosis well that made total sense, and in truth I agree, however, the promise of contacting us 1/2 way through the chemo cycle, in fact never contacting us again, we should have accepted the fact that the GOPs (Cancer Drs.) were doing his job for him. And then he retired, so..like Padma, we will never know his side of the story, as he is no longer with the agency! 

  I am missing a s*it ton of information on the meeting, here. It was extremely difficult to hear his case did not allow for the same tests, etc that others recieved, when I did bring this up, I was told she could not comment because although the others were also stage 4, she didn't know what type of Cancer it was, and for some reason she focused on the fact that the cancer showed in Chuck's liver, it did, and then surprise, it didn't!! Maybe it wasn't even Cancer, but again we will never know because no biopsy was ever taken! 

With all the issues I have blogged about, apparently nothing was done wrong! We should have known, according to the letter we recieved from Provincial Health, how this was going to play out, we should have known from the beginning according to the statement made by the Head of medicine in the Cancer center of the North,during our so-called "Healing ceremony" how this was going to end. Thing is, Chuck and I questioned the word Palliative more than once, and were reassured more than once it was NOT used in the way we assumed, that it is used in many different contexts in the medical profession. So apparently not a single person we questioned in this matter was willing to tell us the facts, or maybe they were not really the facts, they just became the facts because they decided to limit what he was entitled to in regards to tests and treatments.

I am going on a bit because this is still so fresh in my mind, and I want to put it down, as best as I can. I will leave with this last tidbit, although there is much more. One question asked (which we have struggled over quite a lot) "why did he not get a full body CTscan at least?" I know the answer was given too quickly, and likely why legal did not want this call recorded, but we all heard it...A full body scan comes with expense, and would take a longer time, so likely other patients would not get their scans done...Did you catch that as quickly as we did? I am certain she did not mean to bring up expense, but the cat was out of the bag and we all jumped on it. As I explained to her. we deal with Smither's imaging, they are very organized, folks can get CTscans very quickly there, and it is almost absurd to say the extra 15 minutes or 1/2 an hour would have made someone lose their place in line. The expense remark, well I think we all must come to our own conclusion in that matter

 At this point in time, with all the mentions of legal risk management, legal department, etc. And the offer for us to write them a letter with our reform ideas, and they will do their best to implement these, this is not getting any where! As I stated to her in that regard, they move far too slowly to make any changes at all, none of this will be done in my lifetime, and I don't have time to wait. Cancer patients do not have time to wait, Chuck certainly didn't have time to wait, all those close to me that have passed on because of the flaws in the system,lost all their time. 

  These people have got to be held responsible, they are NOT doing all they can for the poor folks relying on them to keep them alive. It has become a business, not a medical issue, it is understaffed, top heavy, and focused on the budget. Bonuses are handed out, and medical staff are left with the crumbs. British Columbia is so far behind with their Cancer Care, it is shameful. We are just ordinary citizens who have been through extraordinary experiences that one would not wish on their worst enemy. What the next step is, we don't know yet, but this is just the beginning!

Fighting British Columbia's nightmare of Cancer Care

I know, it's been awhile..but  still learning to adapt to a different world.

  I have not stopped the "fight" for change within the BC Cancer care, but I will say, my head is very sore from banging it against the walls surrounding the system. If it was a matter of even baby steps forwards, one would feel some sense of accomplishment, but this is definitely not the way things work. 

  The problem with this extremely important Government program is, it is government!! The tiers are immense, to get from the bottom to the next level is like tryng to rescue the princess in a game of Mario bros. when you suck at games. The hurdles are unending, and clearly put into place to cause one to simply give up. Management is definitely top heavy in this nightmare, they have rigged things so that you wait and wait again, to learn of yet another procedure you must follow, no different than actually struggling with the medical side of things. 

  To accomplish the most simple thing, requires far too many steps, that are decided by a whole team of management folks, who surround the system with a dome of steel to protect it from any questions at all. That folks, is where much of their budget goes, not to the care of citizens, but to cover the butt of those who have screwed up! When you are told things, in regards to requests, that the Legal Risk Management team has advised they are NOT to provide , average folks like myself wonder exactly what they are hiding. 

  In all of these months, we have got one "meeting" with Cancer Care, this meeting was cancelled without notice , and changed to a "healing ceremony" in which terms such as "you", were NOT allowed, so absolutely NO answers. Now, keep in mind, because this "fight" was a promise made to Chuck , we have absolutely NO plan to give up. His wish was to make the care for those who end up going through the Cancer care system, clear of the massive cracks he fell through. They are horrible cracks that are ignored by everyone involved, from Cancer Drs. to Oncologists. These cracks actually kill patients, but no one is held responsible. 

  Are you aware that no one actually reads a patient's file? Well, maybe there is one person, in the very beginning, but from then on, all the history a patient must give is simply buried in behind everything else, and afterwards it is usually just the most recent procedure, test, whatever, that is actually read. I learned this very early in Chuck's experience, and this is the most important thing that we want changed. This was the first and, sadly the biggest crack we discovered. Reading his file could have made all the difference in the world to his care! Is it because we now live in the world of computers that has allowed folks to ignore so much? To have someone in charge of your survival simply click on a screen to the most recent page and perhaps the second page, and assume they know it all, is this due care? To miss the fact that a patient had a massive brain bleed in the past, because you didn't have the time to read their file, acceptable? To be ignorant of a previous broken back, and assume the old fracture is cancer because it shows the same, is that alright? All of this is on file, because a nurse sits and takes a history..then it is covered up with everything else, keeping the past secret because the professionals cannot stoop to read past the page. 

  I have had a professional admit she did not read his file because she did not (I am unsure today of the word she used as an excuse but believe it was something like "initiate" ) him. Basically she did not put him into the system, so she had no need to read his file! Would this make you feel comfortable? The reason this was admitted to me is because, I questioned why he had not had a CTscan since his inital diagnosis in September. She missed this lack of CTscan , his Oncologist missed this lack of CTscan and whoever else was on his medical team, missed it as well! No one was even glancing at the file! So how can they do their jobs properly if they don't even have a clue of his history back to the beginning of being under their care? 

  I will share the other requests of reform we have at a later time, and reasons these reforms are desperately needed in this absolutely disaster of a system, however, today, I need to pull out all my notes and blogs and relive this journey once again. We have a zoom meeting with a Provincial Cancer Care Dr. on the 16th who is suppose to go through his file from start to finish with us , and explain things, I think...Because one is never sure exactly what it is they are offering, and I know that Legal risk management stated we cannot get a second opinion on the way things were done, so I just need to be ready with our facts, because I am certain our facts and theirs are not compatiable. I really do not want to relive things again and again, but if that is the price to pay to get this killer system fixed so others do not lose loved ones long before their time, so be it!!