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!

What If's

I have truly stepped way over the line regarding my comfort zone. It has been strangely cathartic putting this out to the world, and since not one moment of this journey has been comforting, I may as well continue to spew my personal feelings to the world.

We have now stepped into the world of Palliative care, strange, isn't it? The very first lie we were told was that palliative does not have the same meaning medically, as it does in the context we thought. As I think back through all of this, I believe we have been on a palliative course right from the beginning. Why do I think that? Well, mostly because. for some reason specific procedures and tests were not allowed to him, and what is even more troubling, these same tests were not allowed for my sister-in-law.  My life today is made up of a million "what if's" that clearly, at this point, do me absolutely  no good!

  Now I must accept what is. I debated a long time with myself, whether I share my "what is" with folks who I do not know, and of course, those who are close, and decided I might as well continue the journey to the end. I have friends and family who have reached the fork in the road where they head in the opposite direction from their loved ones, alone. I have done this too many times before, myself. I know what emptiness lies ahead, and I am so afraid of it, sitting there, just waiting for me. It grows daily as time passes and the distance diminishes, that fear. 

Like those who left before, the choice we have made is to travel these last miles at home. This works for us, we are lucky, we stay in the place of comfort surrounded by all that is familiar, we can chose to have privacy, or company. I have experienced both sides of the choices and I understand how it is better for some to be in a hospital, we made this decision long before we ever came to this place, and so, it shall be. 

I ask myself sometimes if I am being greedy with my time beside the person who has been my constant companion for all of these decades, but truthfully, I don't care if I am. He has been the center of my universe longer than anyone else, and I am going to feel his loss more than any other, so , as difficult as this process has been, and continues to be I embrace it, because many do not get the chance to be beside the one they love right until the last moment.

I have heard dementia called the long goodbye, and I am grateful that he still knows I am with him, but this is our goodbye and it is painful. It is painful to watch someone fade away, some days more than others. Some days are the same as the one before, then you get others that are harder, when you notice fingers, and legs suddenly so very thin, not the body that only weeks before, was unchanged. You get days when they are awake and having conversations and suddenly the voice becomes quieter, and they say less and less, and those days, once they begin, become always. You get a boost when your loved one seems to get the will to try, and they are awake in the morning, and have a coffee at the table with you, and they eat their meals, and you have hope, just maybe the Dr. was wrong, and maybe the care folks who have explained they will teach you how to deal with pain medication given by IV when the time comes, they were wrong. See even though I accepted the future, as difficult as that was, I accept the denial far easier, but that is a mistake that causes more pain when reality hits hard. I have been hit hard many times in the past weeks, no matter, as I said, I claimed to accept the facts. Human nature grabs at hope, although common sense knows it is fruitless. 

Ours has been far quicker than most. One minute we were on the upswing, things were looking pretty good,and the next devastation. The words of the Oncologist are blurred right now. I can't remember if she told us one month without chemo, or 2 months, and 3 if he chose chemo. The "what ifs" are seldom on my mind now, because again, they no longer make a lick of difference, they never happened, and without a doubt if they had, our lives would be much different right now,not just our lives, but those of others who have recently been thrown into the cess pit of what is called Cancer Care in British Columbia. 

There is much available in the line of Palliative care in British Columbia, all sorts of assistance comes out at you when you reach the point of no return. We have a wonderful group of care nurses who call every single day and pop by to deliver med's etc. So much different than when one is actually going through treatment, or waiting for treatment, when you sit by the phone day after day, week after week, waiting for some communication. One can only assume from this, that, British Columbia Cancer Care is lacking a great deal. When folks wait 3 months after a CTscan after warning signals of returning cancer scream out, when folks diagnosed with an enormous stage 4 tumour in their esophagus that is causing them the inability to swallow even water, wait 11 weeks for radiation, when folks go 6 months without a single phone call from the Oncologist, when folks are suddenly left without an Oncologist, when folks have to walk down stairs in the hospital  to ER to be diagnosed with 3 large Brain tumours, after their IV appointment in the Cancer Clinic, when CTscans are missed completely because files were not read and no one in the "Team" thought to look at page 1! When stage 4 Cancer patients apparently do not qualify for PETscans, or scans that go beyond the original cancer area..my sister in law asked for a PETscan, in fact she was trying to get one that she was willing to pay for, we tried that as well, but surprise, even if you pay for it, you need a Dr. referral. Oh, and that promise of everyone being entitled to a second opinion, Hah! a battle we had to give up on, as the replacement Oncologist gave us the one and only prognosis we ever got! Getting a second opinion is a lost cause. 

 However, we have all sorts of equipment here to make dying a bit more convenient, we have all the medication one could imagine at our fingertips, we have , as I said, a group of wonderful caring compassionate folks a phonecall away, we have instant Dr. communication through the care folks, everything set up neat and tidy to run smoothly as the end nears. The end is the only organized part of this whole journey, the beginning and middle are just a cluster F*ck! The part that is controlled by the British Columbia Cancer Care organization that holds all power over a Cancer patient is a nightmare and I won't even hazard a guess as to how many folks who walked into this insane asylum with the ability to have many years added to their lives through proper treatment and care, ended up where we are today, I personally know 5 of them, and although I am not a medical specialist, each one of these people fell through cracks that took away all of their "what ifs"! 

My days now are not to be wished on my worst enemy. The days of the most important person in my life, are absolutely heartbreaking to share. I say I accept the future, perhaps that is wrong, I acknowledge what is to come, and have no choice, and no control, I have been here before, and each time I prayed I never had to watch a loved one fade away again,it sucks the life out of those who care for the dying, it changes a person, it is not beautiful, and peaceful. It is filled with pain, suffering, heartache, helplessness, frustration, and anger.

I had hoped as I wrote this, I could put down the words that explain what this is like, as I read it over, I didn't manage to do this. I think perhaps it is impossible to do so. It is unimaginable, and I hope that no one else has to travel this path and reach that fork, but I know some will. I know that my life will never be the same again, and I will never be the same.I have already made up my mind, my bubble will shrink even more than it has. I do not have the energy to deal with those who are not close, I have become somewhat anti-social throughout the past 10 years, and found I enjoy a small circle far more than one I need to expend energy on. I am losing a huge piece of my life which will not be filled by others, so my plan is to keep those important to me close, and shut the door to all else. I am so done with drama it has stuck it's head into this nightmare one too many times. MY family, and MY friends, who I know I can reach out to, those who do not judge, and have offered, not asked, throughout this know I love and appreciate each and everyone of you! 

Harsh Reality

Not really sure if I am ready to share this part of the journey, but I will try it out, and see.

We traveled to Prince George for our appointment with his new Oncologist. This was a first time meeting, so we had no clue what the next treatment was going to be. As usual, we were taken into a room by a nurse, and he had his blood pressure taken and his weight, then we waited for the Oncologist. Lots of questions, about his energy level and activity, of which both were seriously lacking. She spoke about putting him back on the same chemo as before, as she suspected the brain cancer began when his chemo stopped (this is all an assumption, as we all know, he never once had a body scan, or even a head CT). She also mentioned a different course of chemo, however....because of his energy level he would be classed as a 3 and needed to be a 1 to qualify for this chemo, so perhaps if he took a lower dose of the first chemo, he might get to a 1. I mentioned all of the new treatments I had researched in regards to brain cancer, each one she said he did not qualify for. I now regret not asking WHY he didn't qualify. Once again, we had to listen to the fact that many mistakes had been made throughout this trip into hell. I have to say, we know mistakes were made, we know right from the very start he fell through cracks which just continued throughout the year. The admissions of mistakes do absolutely nothing to help, in fact, they hurt each and every time we are reminded of them. See, we cannot reverse what is happening to try again without mistakes. Those enormous cracks have denied him the ability to a fair fight against this horror. Those enormous cracks took my sister in law away from her family. 

If cracks in a system mean a little more hardship, or perhaps a day without internet, or cell phone, one can easily survive, and the effect is over and done with. The cracks in the Cancer Agency, are far from survivable. Those cracks are absolutely deadly, wait times, files not read, lack of staff, lack of care, lack of communication, all cause death!! To cause death to another through carelessness, is Man slaughter, and it carries a prison sentence.the crime of killing a human being without malice aforethought, or otherwise in circumstances not amounting to murder.. The Northern Cancer Agency does this on a regular basis. They often use the excuse of lack of staff, well they are responsible to the people of our  area to provide us quality care, I heard their advertisement on the radio just the other day, claiming they are giving this to us. That is a crock of Sh*T!! They do NOT have the staff to cover the number of folks needing this agency, they do not have a system of communication that is without faults that cause gaps, which in turn, cause harm, they do not have the ability to offer the newest treatments, and they don't even keep proper medical records. I say the last, because I have requested all of Chuck's medical records, and if what I recieved is indeed all of it, there are massive gaps not recorded. Proof of this was when I informed his Cancer Dr. the Oncologist had told us if the first chemo did not work, there were 2-3 other treatments he could try. She had no clue about this, and I can understand, because there was absolutely NO record of our meeting with the Oncologist to be found in the ones I was given. In fact, the only records of anything from the Oncologist was the cc'd CTscan reports, and one paper stating his concern over the swollen lymph nodes stating they would simply wait 3 more months for another CTscan to see if that showed anything!!! The headaches began long before the 3 month waiting period, no surprise in some respects, no cancer showed in the continual procedure of taking the same CTscan over and over, and not even thinking to perhaps do a body scan to find out where the suspected spread was. See, they admitted they suspected a new cancer, so Why TF didn't they look for it? OOps. perhaps this was not within the guidelines..well, it was't within the guidelines apparently, so I guess the guidelines were to sit back and wait 3 months for an agressive cancer to settle in, and have an ER Dr. call for a CTscan to find it was really settled in, so much so, we received our very first prognosis on Oct. 2nd. With the smaller dose of the same chemo..maybe 2 months!! Absolutely NOTHING can be done at this point beyond a few months with chemo.

So, the choice was, maybe a couple of months dealing with chemo again, or..hoping the radiation had done some good (it is impossible to tell from scans exactly what the radiation has done at this point) and taking a gamble. 

This was a choice that our family left to him, this is not something anyone else has the right to speak of. We respect his wishes and he has chosen to go without chemo. 

We have a complaint in with the institutions responsible. It has not been easy to push this to where it belongs. We have a trusted friend who is doing this for us, because like most folks who are dealing with Stage 4 cancer, our time and energy is completely taken up. I have to wonder if this is why nothing changes, folks are so caught up in this mess they are unable to deal with red tape, and there is a ton of it! Maybe they think people will be so overwhelmed with grief they will accept the disgraceful Health Care system in British Columbia? I am focused at this point in time with the man I love, however, I also know, no matter what the future will bring, I have another fight ahead, that will become my life, and that will be ensuring no one else has to worry about the mistakes, and cracks while battling Cancer. 

Communication Break Down

Ahhh...I had hoped I would not be writing again, until after the Oncologist meeting Oct. 2nd. but..here I am. 

No, things have not been easy. Chuck has been medicated heavily since the radiation, and sleeps most of the time. He has been headache free, until yesterday. Started his day late, I made him a usual breakfast of cream of wheat with peaches, and toast, and a cup of coffee, plus a couple of sunny side up eggs. His appetite has been pretty good, likely helped by the steroids. I knew something was off when he just pecked at things, he also is taking what he calls Happy Juice that provides gut stability and energy. Barely swallowed a few mouthfuls. Then he started vomiting heavily . That was very wearing for someone who is weak to begin with, and he was back in bed for hours. I gave him the medication he had been prescribed at the beginning of this for nausea, he had not needed this up until this point. 

Now I am always researching, so I went in to see all the side effects of the steroids he was on, including withdrawal symptoms. Headaches, fatigue, mood change, taste change, vomiting, all listed. I went into this further, clearly been on them for over 3 weeks is more involved, more side effects as what this does is provide cortisone , to help with inflammation, but while doing this, one's adrenal gland stops producing it's own cortisol, we all need it just specific levels, so when your body is getting it "artificially" your gland just takes a holiday. Clearly his system is out of whack and it needs to reset.

Now I was concerned as he did attempt to eat something later last night, it went down, but came right back up as soon as he laid down. 9PM is a little late ,plus being a Saturday ER was the only option, but, wait....There was the nurses' Hotline, you know that number each and every phone call to a Northern Health clinic suggests one calls with questions before going to the ER. I gave that a try, we were informed the wait time would be approx. 1 hr. Hey, I was up for that to get some sort of answer, 1 hr. passes, 2 hrs. pass, ahh 3 hrs later I finally have someone on the phone. I kind of knew what reply I would get, as this is a nurse answering, and not a Dr. and I was right, she suggested I call 911 and have him taken to ER. Perhaps instead of RN's answering these numbers, a Nurse Practitioner would be a better idea? They are not as limited on issues as an RN, and I do believe in this screwed up system, our Health care folks should utilize practitioners a whole lot more. I digress...I woke the poor man up out of a very sound sleep at midnight, to tell him what I was told. He was wide awake and told me we could wait until morning. He knows himself better than me, so I agreed.

Much better this morning, however still weak and extremely tired, he had a breakfast of Cream of wheat and toast, and off we went to our local ER. 

The waiting room was pretty full, however when I registered him and explained he was a Cancer patient, he was immediately given a bed because he is immunocompromised. All good, my youngest and I thought, that was until the nurse decided to do up her chart. Now, it is very apparent he is tired and weak, and that folks is why I go everywhere with him, as I am his advocate. This is the first lesson one learns in the Health Care system in our province, I am not a medical professional, I am not a legal professional, however, my job is to make sure he gets the care he deserves, as well, I give him his medication, and keep track of what is going on. Instantly she starts on his chemo , explaining vomiting and lack of energy are common.That is when I spoke up, trying to explain to her he has not been on Chemo since May..the reply I got made me sit back in shock...I was told, " I am speaking to him, he is an adult, and he knows best what is bothering him. The Dr. will see everything when she opens his chart,"I am not kidding folks!! So I listened to him tell her stuff that was confusing at best, but hey, she clearly knew better. She went on and on about his cane..WTF has that got anything to do with why he was there.."did you get it from ER?" "where did you get the cane?" My daughter and I just kept rolling our eyes, and she kept looking at us doing it. I had the medication names written down, I had the date of the radiation written down, I had the medication I had given him when he was nauseous written down, she was not in the least interested. When she was done speaking with him, she did ask him if any of his family members had something to add..I simply told her "not at this time" why bother???This was a prime example of what is wrong, this person did not want to communicate in the best interest of the patient. I had plenty of information I could have given her in his regard, but  she was not open to it at all. 

Now thankfully Dr. Kim was on ER duty. She had absolutely no problem speaking with all 3 of us. I explained the dosage of the steroid and side effects he had , and she took the time to listen, and told us this was normal and not to worry. She said he is doing extremely well under the circumstances and we are just to continue without worry of the withdrawal as it is proceeding as it should. The vomiting was simply something that happens sometimes. Go home, try and ensure he eats and drinks, and wait until we see the Oncologist to see what she decides to do next. 

This nurse assuming his charts will tell the whole story is out of the loop. We have all his medical reports since the beginning of this, they are full of gaps, therefore it is more than likely his chart has some of these gaps as well. She is the reason mistakes happen, because she assumes she knows it all. This is our life, we keep our records of every day, pretty much, we recognize changes quickly, because we are focused on one person. Dr. Kim over the years has clearly learned this, and uses it , rather than trusting a chart alone. 

I am done letting mistakes happen, today I allowed this person to feel she was in control, simply because I knew Dr. Kim would follow. Perhaps this nurse feels it is her job, but it is our life, so I hope she watches the Dr. and learns communication skills are very important in her line of work. 

Please folks, if any of you are on this same road, do not simply stay silent, you know when something does not seem right, speak up. Quality care is what Northern Health claims to offer, we know this is a lie, so our job is to insist on it, even when you get so tired of dealing with the cluster F*cks that happen on a continual basis..they need to be responsible for their lack of care and most importantly their communication gaps that abound in a place that mistakes mean life or death!!

Retraction

 This will be short and sweet. Sometimes I do get things wrong, and as hard as it is to swallow crow, I try and admit my mistakes.

In my previous blog I made mention of an End of life meeting we had for today from Chuck's family Dr.  I stated she seemed excited etc. and apparently had all sort of goodies to offer for End of life. I have to retract my comments that were actually made in a rather nasty frame of mind I have been dealing with for some time. I was actually terrified of this meeting, as I think most of you will understand. My emotions are pretty raw and there is very little covering them at this time, and I made a mistake of directing my anger, stress, and frustration unfairly.

The meeting was rather pleasant. Our youngest came with us, more in support of myself than wanting to be a part of this, and it was appreciated. The Dr. actually did have something to offer us, if NEEDED, because of the way the wheels work in cases such as we find ourselves in, it is best defence to starts things in motion before, or if , they will be needed. There is palliative care offered, just a nurse who specializes in these cases, that will pop out (after notifying us of a visit) and check in to see if we are in need of anything medically. This nurse will have direct communication with the Dr. so if pain meds are necessary they will inform her, etc etc. This is great, because where we live, often an appointment will be a month, if not months after a request, so huge bonus! 

Talking about such a possibility is incredibly difficult, but we have been touched too many times by Cancer not to know it is necessary. We do speak, not alot, but we have covered what we feel are the main things, in fact it has offered me the ability to make my wishes known, as well. Now we are done! Sadly legal stuff is a part of this, and we still have a few things to get in order, but we have been procrastinating for decades in this regard, probably like many others. It is time to get off our butts and do what has to be done, so we can simply focus on extending life which is the road we have decided to take.

Today I realized that writing all of this down for everyone and their dog to read, is a hundred times easier than speaking about it. So I guess I am grateful I made this decision, as this part of Cancer is a reality and a big part of the journey. I am actually somewhat relieved making my wishes known, as I have aged, the fear of spending my last days in some long term care home alone is now not a worry. Funny, although not faced with a dreadful disease,I think many of us (oldies) do give thoughts to this, we just don't speak it out loud. We've just sort of been backed into a corner so we can't really ignore it. One more thing that we have ticked off the to-do list. 

So again, to this Dr. who today showed concern, and compassion, I apologize. It was actually a pleasure to speak with someone professional who cared, something very lacking in this journey!