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!!

Been a Lifetime

 Well folks, it's been a lifetime since I sat down and chatted. Suddenly felt the urge to bring you all up to date, and let you know the journey is long from over, regarding the loss of Chuck. 

Cripes it has been over 1/2 a year without him, and I am no where near adjusted to my life as a widow. However, I am surviving, and all the animals are still alive, so must be doing something right.

I am not going to write about my true feelings at this point, as I honestly don't know from moment to moment what they are. I still wait for his phonecalls at night, I still think of all the things I need to tell him, when he comes in the door, and truth is, I still think I will put certain jobs off, that I need his help with till he comes home. So, reality really has not hit me fully yet. 

A life change is never easy at any age, but, after over 39 years with a loving partner beside you, this is truly the hardest change imaginable. When we got the brain tumour diagnosis, I knew this would be my future. It scared me to death. I always imagined I would leave Chuck first, with the age difference. He even told me during one of our hard conversations at the end, that he believed he would be the one caring for me, if only. 

Last weekend, we had his Celebration of Life. I stressed for months before this day. I have no control of my grief, it pops up totally unexpectedly. Most of the time it is OK, because I spend almost all my time alone. The thought of talking about him with others, was scary. I hate to show my emotions in public. When the actual day came, I had my whole family, along with 2 women whom I love dearly , beside me. It turned out to be the best day I have had in years. I was stunned by the folks who came to celebrate his life, on a day of a total downpour. There were sides to Chuck that I did not know, not many, but some, like his work, and I met folks I never knew that day. To see he had so many that cared about him, was heartwarming. To have my friends beside me, allowed me to enjoy being myself, before all of this happened in our lives. I forgot I could laugh, and my day and evening were full of laughter. I realized how very lucky I am to have the best friends in the whole world, I was missing one in the group due to sickness, but I had a theory that was proven that day. See, my friends are from totally different times, and places in my life. If you did a survey on them, they would have little in common, but to me, they are all very important, and I would talk about each of them to the others, although they really did not know each other. There was a reason I chose them to take up so much of my heart and my theory was proven. Because I was busy at the begining of the day, my two besties spent the first while together without me. By the time I joined them, they were like sisters. I believe if the third had been able to come, it would have been the same. There is something very special about these women, something that connects, it's not me, but somehow, maybe through me, we have a common denominator(school math finally coming into play) that is extraordinary, and it is beautiful! BTW, both these women were mutual friends of Chuck and I, he loved them almost as much as I did, as no one could love them as much as me.

Now, for the journey part of things! We promised to do our best , so no one would go through the nightmare Chuck suffered. The lack of tests, the lack of communication, the mistakes, the massive waiting periods for treatment, etc. Our family friend began our complaint before Chuck passed, as we were concentrating on trying to save him. Both of us knew this would not be dealt with while he was alive, so it is only beginning now. 

Chuck's sister , along with my oldest and her hubby, and our family friend were invited to attend a meeting last month in Prince George, at the Cancer center. We were offered a "Healing ceremony" after the meeting. Trust me , it was not easy entering the doors of that building without Chuck. The pressure to ensure we had our say was intense. I had files, and my blogs all printed up in my case. I had statements and facts all in order, I knew speaking was going to be difficult, so Chuck's sister had agreed to speak in my place. The meeting was set for lunch time, which seemed strange. We arrived on time, and went to reception to ask where the room we were told was. Instead of a room, we were taken out side the back of the building where there were some Gazebos and benches. This was the beginning of April, and it was pretty darn chilly! No one was there and our family friend went back inside to figure out WTF was going on. Surprise!! The whole thing had been changed to a Healing ceremony!! We followed the staff back inside to a room, where they had refreshments, you can imagine our confusion, this was definitely NOT what we expected. After a bit of sitting and discomfort, in the fact that we had no idea what was happening, we went off to the healing room. I had brought along framed pictures of Chuck with our family etc which we placed in full view. I am all for following Chuck's culture with ceremonies, and I felt a healing one would probably give us some comfort after a meeting, but this was NOT what we were ready for. We were seated in a circle, Outside the circle was the Elder leading the ceremony. Within the circle was Chuck's family, our friend, along with the Administrative Executive, the Head of the Medical department, and the representative of FN Health. The rules of the ceremony were such that we could not use terms such as "You" we had to use "I" . We could not speak unless we had the feather in our hand. It was more about feelings, and not about facts, questions or answers. We heard from the Dr. that we should have been told the truth about Chuck's condition at the beginning, there was nothing they could do for him, and this was going to be the outcome no matter what. He stated PETscans would not have made a difference, however there was no reasoning behind his statement. He also admitted Racism had a bearing in this case (Dr. Padma, at the very beginning of radiation), and that we needed to understand this Dr. was from another country???? Dr. Padma was the first step in this process, the remaining mistakes, and we fully believe there were many, happened afterwards. According to this Dr. the very same one who called Chuck after the brain tumour diagnosis and was upset that protocols had not been followed correctly even with this, we should have known this would happen back in September 2023?? This ceremony was probably one of the hardest things our family has gone through, it was devastating, and left us with even more questions than when we started. To hear excuses that Drs. never have enough time to actually read files completely, because they are overworked, is not acceptable! Their jobs hold lives on the line, to feel one has died because of a lack of time spent on their file, is nothing less than criminal! This whole "ceremony" was a waste of our time and energy. The stress leading up to it was intense and physically wearing, to relive the hardest time we have ever had was so very painful for all of us. 

So , now you know, we have simply begun a process. 6 Months down the road, we still have no answers, just more questions with the dirty little word Racism, added to the mix. They asked us what changes we need to happen, do we really believe this will happen? My utmost change is that patients files be read throughout their treatment, if I had not researched the fact that right off the bat, Chuck had not bee given a CTscan before starting chemo, so they would have a "baseline" and asked the Dr. about this, how long would it have taken to do so, without reading his bloody file? The waiting game at the very beginning of 11 weeks after diagnosis of stage 4 cancer, is that acceptable, or does it need to frigging change? Oh so very many changes, would have allowed us more years with our loved one, but in our world it is far too late to make things better for our family. Sadly, I know it is not just our family that has fallen through the cracks of the disgrace of the Health Care system in British Columbia. 

We are not medical professionals, this whole thing is well outside our purview, however, we know for certain, what happened with Chuck was wrong, in so many ways. For the next little while, we will continue to work with these folks who claim they want to make changes so this does not happen to others in the future, but how many are going through the same lack of care he did, right now? How many lives will be lost because of unread files, and long wait times living with a deadly disease?  If this does not bring answers and resolve ,within an acceptable time period, we may have to look in another direction. Someone needs to be held accountable!