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!

The Swiss Cheese Cancer Care Syndrome

I honestly didn't know if I would be able to sit down and write this "story". It occurred at 9AM and basically blew us out of the water.

Now you will recall my previous blog explaining we had an appointment on the 19th for him to have an IV treatment. We were unsure if we should go to this, but I made a point of listing it in the questions I wanted answers to on our Friday appt in PG, We were told by both the Nurse who spoke to us on the Wed. and the Cancer GP that spoke to us Friday that is was still on his chart, therefore we had best make the appointment.

As it is about 1.5 hrs from our house to Smithers we left at 7:15, keep in mind Chuck has been prescribed some pretty harsh steroids to reduce swelling on his brain, and he does not sleep very well on these. Most mornings he is up about 4AM and then has a nap about 8:30 -9 he is always tired. Getting out the door at this hour was not pleasant, but off we went. I think I might have gone a little over the speed limit, as we got there 40 minutes early. 

Now I am not sure how other "Satellite" Cancer Clinic are set up, but here, it is upstairs and is completely separate from the rest of the hospital, so patients must pick up a phone and call to tell reception they have arrived. Chuck did this..only to have the person on the other end say he was NOT on the list!!She was very pleasant, and told him she would have to check things out. She came outside into the waiting area and sat down with us (well I stood, I was pi$$ed) She explained to us that one of the Cancer GPs had put his treatment on hold, he had to wait for an echocardiogram that was scheduled for the 11th, and then a CTscan we had not received a date for. So clearly we had spent time and money driving all the way out to Smithers for absolutely NOTHING!! Apparently, technology does not include the phone, because both of us have cell phones, both numbers are on file, and neither of us got a call informing us he was not getting an IV. 

We have been dealing with this system for almost a year now, and we are well aware those folks who often end up dealing with most of the crap that happens in this incredibly dysfunctional system, are those who are not part of the medical profession, just like this poor woman who had to give us this news. Maybe this is a plan, they have no part in the mistakes, so folks don't want to blow up on them, we certainly don't, however, they have to face us, and hear our frustration those who have a part in it, are never around. They don't need to face any responsibility, and we don't get any apologies for thoughtlessness, and no communication. 

The system is full of holes like swiss cheese. No one contacts anyone else, things do not pass from one department to another, if they are ever sent, they are never received. One hand never knows what the other hand is doing, or has done, departments assume information has been given where it is needed, but this seldom happens, it simply disappears into the twilight zone, never to be seen again, and then mistakes happen, serious mistakes, life and death mistakes, criminal mistakes! Problem is, because these things are floating about in limbo, there is nothing resembling a "paper trail", is this on purpose? I have to wonder. I have requested Chuck's medical files from both Northern Health and the Cancer Clinic, the amount of correspondence is minimal, which is frightening, because this is someone who has been dealing with Stage 4 Cancer for a year now, where is all the communication between the Cancer GPs and the Oncologist ? Trust me there are reports after each CTscan, with the Oncologists name cc'd, but nothing really from him to the GPs, in fact not even a medical record of the meeting we had in December. Is this right? I can't think this is proper. In fact, when he had his last scan that showed there was a pretty high likelihood the Cancer had returned somewhere in his body, the oncologist apparently simply wanted to continue the same treatment, and wait 3 months to do another CTscan? WTF!!! I am not a Dr. I am not even very intelligent, however, I am smart enough to realize that a fast growing cancer, such as he has, will grow pretty frigging big and move incredibly quickly if left 3 months! And then BINGO he is retired, and we are left holding the bag, no where to go except, yep you guessed it, to ER to find out those nasty little lymph nodes were indeed screaming cancer not in his chest or abdomen, which was the limit of the CTscan, but in his frigging brain!! Trust me folks, this is not something I would ever wish on my worst enemy, let alone the man who has been beside me for 39 years. 

Oh this is a long one, sorry, just have to vent it all out. When we got home, Chuck was just as Pi$$ed as I was. He had been told over and over, how the Drs, could not request any tests, could not change any treatment etc etc. without the specialist (Oncologist) ordering them. However today, to us, it appeared this Dr. had made the decision to stop treatment. It took us all day to find out the facts. We called our trusty councilor, who has had to listen to our complaints over and over, and has always tried to find answers for us. She was NOT surprised, our issue happens often. NO communication! Clearly something had happened and someone forgot the main characters in the show (Us). She promised to try and dig out what had happened. The Cancer Agency listened to Chuck and promised to get him answers. Hours later we did get the answer. Apparently his new Oncologist, who we are to meet October 2nd. had been in contact with the Cancer GP in Smithers, and they had decided to stop the present treatment, as clearly it wasn't working and we will hear what the new course will be when we have our meeting. I am guessing one assumed the other would have contacted us, but that didn't happen. 

I am also going to tell you about another royal F*ckup. I might have mentioned over 2 months ago, he had been to the optometrist in Smithers (Chemo patients often have damage to their eyes, so exams are needed upon completion). During the exam, it seems they found something concerning, and sent a referral to the neuro opthamologist inTerrace. He was told it may take up to 2 months to get a call. I emailed the optometrist the other day, telling him the system was broken as he had already been diagnosed with brain cancer and we still had not received a call. Yesterday, as we were shopping in the local health food store my cell rang. It was the optometrist. He explained he had indeed written the referral that afternoon, but....wait for it...It never arrived in Terrace!! He apologized, and actually told me he had suspected the cancer had moved to his brain!! Now the concerning exam was indeed mentioned during a Dr, appt. but must not have rang any bells. The optometrist apparently did not think the concern was enough to actually pick up a phone and call the neuro-ophthalmologist instead he sent a fax or something that never arrived. See this shit is everywhere folks!!

So tomorrow, we get to go to the family Dr. who appears to be very excited to have us in for an END OF LIFE meeting. She clearly got the latest CTscan report and wants to make sure we are all set up for the worse possible scenario, because clearly the medical system has all sort of goodies to offer us in this regard.  

Now our complaint has been sent, originally it was sent to Northern Health, because...many of the papers have this stamped all over them, their reply was quick about 24 hrs. stating they were NOT responsible, our issues were with the provincial Health agency, so off it went to them. They actually had the balls to say perhaps we should sue the Drs. involved????Again WTF!! These Drs. are not private clinics, they operate under the British Columbia Cancer Agency, this is who pays them, therefore the Drs. operate under their "umbrella". It is not easy dealing with complaints and cancer treatment therefore we have given a trusted friend authority to act on Chuck's behalf, because we need to concentrate on him getting better. I think this is why more folks do not complain, as they are so focused on the Cancer and the criminals continue to murder innocent folks with their lack of ethics, morals and professionalism. Thanks go out to Caroline for taking this task on for us, I say again, my goal is to stop this criminal activity, so others never have to deal with what we are going through now, and what my beloved sister in law went through with her family, and what my Quesnel friend is going through now, and what Dear Shelley, long passed went through. With an election on the horizon, I ask everyone to think very carefully before you vote, who is going to fix this mess? I can tell you it is NOT NDP, they have created a nightmare for all of British Columbia, and like us, you never know when you might be in our shoes..time for a change!!

Cancer disillusion

 Today was emotionally draining, as have been most days lately.  It started on a high, my Kordyban lodge buddy had an appointment at the CClinic this afternoon so we arranged a quick coffee visit.

Chuck's Radiation treatment was for 1030, things must have been swinging in there this morning, as he was in and done before 1030. Then we have a nurse appointment. This is basically a visit with a nurse who checks his symptoms, "any nausea", "any seizures", "any headaches", etc etc. The poor woman, she was very new, and of course I started with 20 questions,because...she is the only medical person we have had a meeting with since last Friday. I wanted to know what was next after his last treatment on Friday. Here it is folks, we were suppose to get a call from a medical Oncologist Oct 2, actually we were suppose to go to Smithers to the Clinic there and have a zoom meeting in one of their rooms! By now, you will know, Zoom meetings are NOT acceptable to us. Cancer is NOT impetigo, it is something that deserves a face to face appointment, one in which perhaps a physical check is needed? I just do not understand why they think this is acceptable, it was basically put in place to help  folks who need to travel, so instead of our government providing patients the ability to actually meet the person in charge of their lives, they can simply sit in front of a computer getting less than those who live close to medical facilities . The lovely lady did not know how to go about putting the meeting in gear but she is going to find out how. We will get a call from the radiation Oncologist about the week after the medical Oncologist. See, you do not have to travel this road very far to see, communication is a massive issue! In places that do a great deal of Cancer care, they speak of Cancer Teams, because this disease requires a group of different medical specialties working together to fight this nightmare. It does not work well when no one seems to know what the other is saying or doing.In between treatments there are large spaces where things are missed, and because no one sits down with a full file on a patient, they are unaware of many things. This has become clear on far too many occasions, and it is extremely disturbing. I feel very bad asking people like this nurse questions that she has no real answers to. She simply has a computer screen with some stuff that she can access, such as the ability to click about to see when we can expect calls from Oncologists, but there is very little she can speak about. One question I had was,"what do we do in regards to the scheduled IV cycle on the 19th of this month, in Smithers?" Ahh there is an "answer" On August 27th there is a note from the Smithers Cancer Dr, stating he is to continue his regular cycle,, well that was 2 days before the head CT was done, and 2 days before we were informed he had brain cancer!! It appears we will head off to Smithers on the 19th to do something that clearly is not working anymore, since there is nothing else on the list. Again, absolutely NO communication..just a bunch of different folks with no clue what to do in regard to what is happening now. 

He has 2 more treatments, we have tomorrow's listed with no extra note such as a meeting with a radiology oncologist, so guess that is it for us. Head home after Fridays treatment , drive to Smithers on the 19th for IV,and likely have to listen to someone there tell us their take on things (more doom and gloom), the same people who told us the total opposite of what 2 specialists told us should have happened when he got the brain cancer diagnosis the floor below the Cancer care place . So trust me, questioning everything becomes impossible to stop, no trust in anyone anymore! 

Now we go into the next mental twister! Yesterday he got a call from our local hospital informing him his family Dr. wanted a phone call today with him. It was suppose to be 10 to 12, so Nurse appointment over at 11:30 and he decided to stay at the Cancer center and wait for the call instead of getting our cab back to the hotel. We waited 20 minutes, nothing, so I called the cab, yep, you know it, the call comes as the cab pulls up. He could not put it on speaker (thank heavens) so he did the call in the cab and I could not hear. It was all about what the Cancer business seems to relish..END OF LIFE!! this seems to be what the whole lot of them just do up big time. He needs to get things in order, we need to plan home care, plan if he is to die at home or in the hospital, they must arrange someone to come to the house to ensure he takes his medication, etc etc. Now my Lodge buddy is going through exactly the same thing, seems to be so much in place for end of life, but so little in place for extending life. His Dr. has not seen him in months, she has no clue what he appears like physically, as he said, he is not sitting on the edge of the bed drooling he is ready to start on his next treatment in hopes it extends his life m but you get all this shit that one wonders is to have you simply give up and crawl into a corner, or maybe..take that lovely MAID offering, and let them put you to sleep.

It was after this call, my lodge buddy and her family showed up for the visit. I went down to meet her without Chuck, he was just getting up from his lunch. She was my lifeline, The hug was what I needed, we have shared so much over these last months, I think we have kept each other semi sane, neither of us have come through this cluster F*ck without major damage. We have both become totally disillusioned with this useless system, and the lack of any consideration at all. She was here to see the pain management team, she had still not heard from her Dr, after reading her test results herself on Health Gate last week. She said what we think, she believes this was all decided way back in December for both of them. The word Palliative in Chuck's case seems to have limited him to certain procedures that likely would have caught the spread of cancer to his brain (like a simple CTscan that went beyond his chest area), maybe an MRI, or a PETscan, his specific cancer has a 50% chance of moving to the brain, but some research papers I have read state they don't check for this because they feel it has no bearing on morbidity. I have also read that HERS2 brain cancer responds to specific chemo treatments better than other cancers, so ????

He is NOT ready to hand in the towel, his headaches have all but disappeared with the steroids, his speech has corrected itself since radiation treatment #1, he feels his balance is better, his appetite is unchanged, he is more tired than normal, however that is to be expected with radiation, we just have to hope that the medical system has not simply put a line through his name. So we know radiation did amazing things to his esophageal tumour, far more than expected by everyone, he has beat cancer in his liver in his lung, so lets give him a chance to do the same, or at least keep the tumours at bay, before we send home care to our door!

I feel so very sorry for those who have stepped onto this road. It is nothing one expects, do not be frightened to open your mouth, you HAVE to speak up, otherwise you are forgotten. Yell if you need to,I have! Just the most emotionally draining system one could imagine.

Cancer Rollercoaster

Well, here we are ..2 days into radiation.  I am so hoping this is helping someone, as it is one of the most difficult things I have done, way out of my comfort zone. I have already come to realize keeping the record of our experiences has been good in one way, and that is the fact I can reread every step of the way. I can understand that our disgust, our discomfort, and our lack of trust in the system has bearing, lots of bearing! My need to question absolutely everything has been with reason, we have not been difficult we have simply expected the best of care, and found the care lacking in so  many ways.

This whole experience has been a mental rollercoaster, with tiny little highs, and deep,dark lows . It has been mentally and physically exhausting, we have changed, along with our whole family.  I have been lucky to reach out to the woman who was given the job of personal counciller to Chuck, and thankfully myself as his partner. I have abused my friends with calls full of break downs, I have cried in front of more people than my entire life before this.  When I tell you this journey is one of the lonliest ever, I am not exaggerating. Those who hold all control are not our friends, nor our families, they have no connection to us besides their pay cheques. We are simply a couple that has entered their area, like thousands of others, and they do their small part of Cancer Care, and go onto the next. 

Is it just us that have fallen into this horror show? No! This past week has seen my Kordyban Lodge friend read her most recent test results on the Health Gate app. They were less than positive. No medical professional who has dealt with her case bothered to call with some pretty damn serious news, she had to find this out all on her own, amidst phone calls explaining how to deal with advanced care, how to talk to her family, how to have a end of life plan. So much help flying through the phone and mail at her, after sitting at home waiting for a call from those in charge of her care, that just didn't come. This is NOT acceptable!! Can any of you imagine this scenario? Thankfully the two of us will meet up here in PG tomorrow, as she has an appt. after the fact. We were all to meet up when herself and Chuck had managed to beat this F#cking thing, abd celebrate. We won't be celebrating tomorrow, but you know what? We will just regroup , we will share our strength, and hope, and fill each other with enough power to kick Cancer's butt.

Two radiation treatments done, 3 to go. He has taken them well. Tumour pressure does strange things to the brain. He has balance issues, much like those suffered by stroke victims, same with speech, and of course intense headaches. The headaches disappeared quickly with steroids, as they reduce swelling rapidly. The speech seems to have improved as well, he says the balance is better, but he has a ways to go with that. What today brought, was the intense tiredness. He came back to the hotel after treatment, he ate,and has been in bed since except for a quick walk down the block for supper. This is a repeat from before, basically expected by us. As this is 1/2 the treatments as last time, we are not sure how long this will last, but exhaustion with radiation is almost a given, it will take weeks maybe months for him to get his energy back, sad, as he was almost there when this hit us.

Tomorrow he has an earlier appointment, 1030 radiation and an appointment with a nurse who will discuss his side effects etc at 11AM.So glad our dear friends from Hudson's Hope were here yesterday and this morning, as he was able to enjoy their company before this exhaustion kicked in. 

Hoping we get an meeting with his Oncologist  before going home, but we understand it takes a very long time for the effects of radiation to end. we were told this sometimes goes on for about 2 weeks after the last treatment, so updates to follow.

Thank you to all those who are in our corner. Your words and thoughts are appreciated, even if I don't always comment. 

Day of Desperation

Tuesday, the beginning of absolute desperation.

Now as you know the brain cancer diagnosis happened on the Thursday. Try and imagine getting that type of news, and then going home with no idea what was to happen. Then waiting the Friday before a long weekend, with no call from anyone. Of course Cancer takes the long weekend off, so you sit for 3 more days, just hanging onto a string for Tuesday to arrive. Tuesday, you know someone is going to call and let you know what they are going to do to help. Surprise Folks!!! No call, no one, no Cancer care team who you know got this information the very day it happened from the floor below them, no call from your family Dr. who had also been sent the information, no call from the Cancer agency (but that was never ever expected). I gave them plenty of time, and by the afternoon, I was going insane. 

Many suggestions ,some from the wonderful Locum we saw, yes I called Tuesday morning for an appointment at the walk in his headaches were keeping him awake, he was in pain, and his walking was becoming very unbalanced, something was needed. We had an 11:20 appointment, I sat hoping someone would call before this, but nope. The Dr. was extremely caring and compassionate, and very understanding of the lack of communication from the Cancer agency. He prescribed some pretty potent painkillers for Chuck, something to help him sleep and something to help him relax, and then asked if he could hug us.  Now I am pretty good at holding it together for short periods, but the hugs..well they just open up the flood gates.Felt pretty good leaving there, simply because we had spent time with someone who cared (that is so important at this time).

Back home we go. He was not interested to take anything immediately, because he was set on butchering our meat birds. Things he felt he had to do..however we did talk him into it. Off to bed he went.

\Now sleeping was continual he would get up have a coffee with his eyes closed because of the pain, and head off to bed right after, I would be lucky to get him to eat some breakfast. We were all so worried and hated watching him suffering.

I decided to contact one of the few people with the Cancer Agency in Prince George that had been in our corner the last go round in PG. She had listened to our complaints, and stepped up to the plate to take our concerns to the folks who were in charge. She was pretty much answering our concerns on a steady basis, as if you remember back in December we had so many issues, and as the Aboriginal Liason ....AND  personal Councillor to pretty much everyone (I think there is one other councillor at the PG Cancer Clinic), she is stretched to the limit, but somehow always there.I can't remember if I gave her Kudos in the past, but,she gets a truck load now. See I was absolutely desperate, no one seemed to give a shit..here it was 5 days after a horrific diagnosis, and no one was calling. I was in tears, and figured why not send her an email just asking for a moment, maybe she would read it the next day and get back to us?

\I felt a tiny bit better knowing I had actually done something that might work, but again, the twilight zone of just sitting at home with nothing happening, and no one there for us, drove me nuts. I picked up the phone and called Laura. I figured I would leave a message as well as the email, to my surprise she answered! You know that feeling when a weight is lifted off your body? It was instant, I knew I was talking to someone who cared. She must have a ton of folks she helps throughout this nightmare, but somehow she remembered us , in fact, she was just about to call me! How can it be that a person who is dealing with the massive number of folks from Northern B.C. who are sent to PG,can be so quick, and everything else takes a lifetime?If that place had 3 more Laura's , patient care would improve 100% from what it is now!

She listened to Chuck's story, she knew his past story, somehow, she started to ball rolling within minutes. She was going to contact an Oncologist for us, she was going to look into things for us, and basically, open the door to the walls of silence. She promised to call us back on Thursday with all the news. Honest to goodness folks, again, sometimes I do not realize how heavy a weight I carry around all day, every day, dealing with this Agency, and of course my beloved's cancer. I don't think I have even mentioned what was happening in our world before the Thursday. Maybe I will put that piece of personal life in, so understanding the pressure may become a little clearer.

Chuck and I have been together about 39 years, in fact we started to live together in September 1985. When all this began, we needed something to brighten things a wee bit, and also to give the kids something to look forwards to. We (he said I) decided to actually commit, and September 7th was to be our wedding day. It was going to be small. Just our immediate family, with their children and grand children, and some dear friends, some of which were going to travel quite a distance to share our day. I was actually stressing about this when he was in his IV treatment, as there was so much still to do, and he had been so short tempered, and so tired, I didn't even want to ask him to do anything(brain cancer does some pretty serious shit with personalities). When he was told the CTscan results, and I kind of lost my temper in the ER because I could not believe after 11 months of treatment and Ctscans, no one had even considered doing a scan beyond the original area, even though they were telling us the lymph nodes were hollering the cancer was back somewhere, I told him we would cancel the wedding. He was insistent we continue on with the plans. One day of enjoying time with those important to us, a day to laugh and remember. So...I agreed. 

That brings us to Tuesday afternoon, I can't remember what time, but the phone rang. It was the specialist from PG. He asked Chuck if anyone had spoke to him about the scan, yes, the ER Dr. had explained the results, so....he mentioned something about Vancouver, we thought he was saying he could have Chuck in Vancouver the next day, but it was a misunderstanding. he was explaining the Oncologist was in Vancouver and would be calling us at 9AM the next day, I asked the specialist how quickly Chuck would be getting treatment his answer was "very quickly". Ahhh a little breath of relief was beginning. 

Wednesday morning the girls were with us when the phone call came right at 9AM. The Dr. asked Chuck a whole whack of questions on his symptoms, explaining that he had 3 large tumours and each of those tumours caused different disabilities. Apparently, SHOCK, one of these tumours is situated right in the area he had a massive sub dural bleed many years ago causing him to have 2 burr holes drilled into his skull to drain the bleed off. I am NOT a medical professional, but would that perhaps be a weak spot for this evil disease to take up a home? He explained that there were 2 options for radiation, one was the new clinical trial (I had actually read about the previous night, knowing the Oncologists name) that was a one time heavy dose of radiation, it was untested, and the effects had a fairly large amount of risk to it, the other was the tried and true one of 5 doses of radiation to the brain, this one was proven to help stop more tumours from growing, as well as shrinking the ones there. Radiation was not going to kill these suckers off, that will once again be Chemo's job, but this treatment was going to help him regain 50% of what he has lost so far within a month or so. Now there are side effects, his memory may very well be affected, not sure how, but it is likely. There are other risks and side effects as well, but we have been given a handfull of hope ...Then he tells Chuck he wants him in PG that afternoon, treatment to start the next day!! Holy crap, folks...Big rush up the stairs to start packing, organize everything else with the kids, thankfully they are there . Grandson in charge of all the poultry. Just insanity but joyful insanity, this was what we wanted.  I was honestly just coming down the stairs when the phone rang. Chuck answered and put it on speaker. It was the PG Cancer Agency...That is when the day turned into the absolute worst since we began. The woman informed Chuck that she knew his Dr. wanted him out there that day, however...she did not have a spot for him, they did not have a Dr. so..he would have to wait until Sept. 11th!! That was pretty much the end of me, and Chuck. All the air in our bodies just exhaled, we were completely deflated. My legs were like rubber, my back bent, my head dropped, and there was absolutely nothing left inside me. I might have said some things in the background while he was on the phone that were not nice. I had to leave the house as I have never had a panic attack before, but I knew that was what was happening. I feel bad now just going out the door and leaving Chuck,but I could not do anything at that moment to help, I had lost it! I did some serious crying, this appeared to be a repeat of the last bout with the Cancer agency that took 11 weeks for him to even see anyone! I calmed a wee bit called a friend, did more crying, and my girls called our Liason, Laura and left a message with the specialist in PG. I don't think we have felt so crushed before, like he did not matter in the least, and we were out of luck. 

I have no idea who worked the magic, but within an hour or so, the phone rang again, and surprise..it was PG Cancer agency, and they had found a spot for him for the next day!! I am going to say, this mental rollercoaster is cruel. It is one of the worst things to deal with, the ups and downs, the waiting game, the loss of control of every moment in our lives. \

We have made it to PG, our liason was waiting for us when we arrived at the clinic, we had a consultation with Dr. Jiang's fellow oncologist, a very pleasant woman, Dr. Cua who tested his loss of field vision, his balance etc, and told us that Dr. Jiang would be in from Vancouver soon to speak with Chuck. Feeling pretty good, He was taken in for his CTscan, and fitted the creepy goalie mask thing for his head. It is much like a 3D goalie mask except it is a plastic mesh, they heat it up and then mold it to his head to ensure no movements during radiation. First treatment is tomorrow at 3 in the afternoon. So we have tried to spend the last 2 days just relaxing and resting up for the week to come.

LOL the easiest past of all this was the decision to cancel our wedding. It was not a hard choice. We were , of course, looking forwards to having our family and friend together for a nice visit and lots of laughs, and I felt badly telling those folks who mean a lot to us that they would have to cancel all their plans, those traveling long distances, those cake bakers, those brother's who were going to walk beside me (that is singular and he is the best brother ever!) those kids who had planned everything, those friends who were going to stand beside Chuckie, Cindy Lynn and Archie, doing up those lovely wedding cups that will now need a new date, Caroline, who is gearing up to do battle for us, Ginny for her offer, Nick for his de-maleing our little piggies, Joe for all he did,and for simply being his normal calm self,Lizelle for her help and smiles, Jordan for doing bird duty, Kayle for all she did, Naida for the beautiful memory box that we look forwards to sharing with folks in the future. Dawn Kyle and I think Paul? for doing the meat bird end of days finale for us.This would be twice as hard without those dear to us and our kids who keep telling me to stop saying thank you..but I am not going to stop.

So you are all up to date on things, I know I have a bunch to thank still and I will continue as I go along. We shall see what tomorrow brings, I have a happy moment to look forwards to as our friends are going to visit from HHope, and it has been far too long since the two old bats sat down for some coffee and laughs.

I pray no one ever has to follow in our footsteps, and I will do all I can to try and have those cracks filled in this cluster f#ck of a health care system. I hope when the time comes, and it will , we will not be alone in our hope to stop this insanity!!

So this has brought things pretty much up to date, I will keep the blog going, and hope it has a happy story , because so far, we have been thrown in the lions den over and over...Fingers crossed a change is on the way.

The Business of Cancer

I did not want to be back so soon, I certainly did not want to fall into the pit of despair, and,  if I didn't feel the overwhelming need to put this down fresh as only hours ago, I would not be here.

Now you remember, it was only Tuesday, 2 days ago, we had our Dr. appointment. Concern about the swollen lymph nodes was the main focus, along with the "any trouble swallowing"question that had me asking why it was asked. Apparently the last CT showed some swelling in the esophagus, but they were assuming that was scar tissue. Again folks, it is exhausting grabbing onto every word spoken, to ensure what is being said is understood. We were told they were simply going to continue on with the same treatment, until such time as he got another Oncologist, no time mentioned when that would be, however because of the swollen nodes, it may be time to try another medication, perhaps this one was not working?

Well here we are on Thursday, did I mention he has had some pretty harsh headaches lately? Today the head ache was bad. Years ago he had a sub dural bleed that was pretty serious, he had to have neurosurgery to drill 2 holes in his skull , the headaches were as bad as they had been when this happened. I tried to get him in to see his family Dr. sadly, he would have to wait until October for that, even after speaking to the assistant, it was suggested he go to the ER. He wasn't having that. So off to the treatment in Smithers. Now folks, this is when I wondered WTF was going on. 

The nurse did the regular questions (been through 12 treatments before this) but once again "any problems swallowing?" So I tell her, his esophagus has been cleared of cancer he swallows fine and dandy. Hummm..she answers that is NOT what Dr. Saltzman had in his notes, the esophagus is not cancer free. I was pretty touchy today, so I blurted out we would not know what was in his notes as we saw him once in December, and he never bothered to call, zoom or even put his notes in the papers we requested from Northern Health, we were told different!We were told his liver is cancer free as well!!Again sometimes I get ticked, and this ticked me off. If that was true, then someone has been lying to us all along, and we know it was certainly not the surgeon who did the bloody biopsies, then she proceeds to ask Chuck if he needs a counciller to speak with, the Cancer Clinic in PG offers personal councilling.Of course Chuck tells her, I am the one who needs someone to speak with about all of this, so she gets me a card, now we are 11 months into this, why the offer?. He tells her about his headaches, she suggest we head down to ER after the treatment. FYI because I am sure you folks do not know this, The Cancer Clinic does not do anything beyond deal with the Cancer issue, any other issues must be dealt with by Family Drs. or ERs, totally separate and apart. I can tell his head is really bothering him, so once the treatment is done, down stairs we go to ER. 

As far as wait times go, it moved very quickly. He was seen by the ER Dr. who was very nice, he mentioned the head aches, mentioned the previous bleed, CTscan was arranged and done. All we had to do was wait for the report. 

Now I have shared all our private shit on here, against my nature and his, but I did it in the hopes that it may help others, and maybe , just maybe somehow get out to the world, how disgusting the whole system is. It is simply a business, money is poured into it, folks get the feel good feeling when they donate, numbers of donations are put up for the province to see, and no one really knows where all that money goes. As I said last time, Big Pharma is rolling in mega billions with the business of Cancer, CEO's are making major dollars running "charities" yes research is funded, but Pharma funds most research. Those folks who are suppose to be keeping an eye on your case only have a minimum amount of time for you, so....things just slip through the massive cracks, huge wait times allow cancer to grow, and if it is a fast growing one, weeks can make a huge difference, and we know that, big time. Procedures are missed, holidays mean treatment stops, Staff shortgages mean wait times. Treatments are doled out over periods of months and months, with checks continuing on as limited as possible. Chuck's checks are every 3 months a CTscan, well, today we realized they simply scan the same area, over and over again, not checking beyond the original problem area with Stage 4 Cancer, (that means it is moving around, folks! )This same old routine is a huge mistake, and today we found out how huge it can be. 

The report came back, and it was beyond what we ever imagined. Chuck now has cancer in his brain!! Not one CT scan of his head in almost a year, not one body scan, not one MRI, not one PETscan, and now, not one, but multiple metastasis.. 

So..we have an ER Dr. having to give us this absolutely devastating news, I pretty much lost it in the ER, and sadly took it out on someone who had done their job properly, I ranted about the Cancer Clinic and I was loud, I ranted the fact that in all this time, those people never looked beyond his chest area, I had to walk out of the room because I was so livid. I did return and apologize to the Dr. and the nurse, I told them I knew this was not on them. The Dr, had checked his file during this time, to see if they had ever done the head CT, and they had not. Now, we go right back into the nightmare of the Cancer Agency, the results are sent by the ER Dr. to PG, and she hopes that she will be put in touch with the Oncology department (remember he does NOT have an Oncologist) and we will once again have to wait until they contact us, remember 11 weeks last time! This agency is criminal, as I said before they murder people. They weld all the power over this disease, it has been given to them, ordinary Family Drs. ER Drs, folks who attempt to cure, have no part in this. It is a medical hierarchy with inadequate staff, and piss poor service. The longer you wait (a file marked urgent sits for 11 weeks) the more time that deadly cancer grows. 

I am hanging onto my anger, it has only been a short time since I watched my sister in law fall through the Cancer Care cracks, and lost her, now those cracks are swallowing another, and we have absolutely no control over the insanity that surrounds this system. This power has got to be taken from them, they are not capable of doing their business, they remove certain procedures from specific stages of the disease, not allowing all to have the same, giving them the same chances. They play God, and answer to no one, leaving grief in their wake. These people must be held to account because they are indeed killing people, perhaps not with weapons, but definitely with absolute lack of care and consideration. I have to make this my focus, I abhor the thought of other  families suffering through this nightmare . 

Sadly the ER Dr. believes a specialist will call us tomorrow, I have very strong doubts this will happen. But maybe I am wrong? 

Cuckoo's Nest

Well, as promised, I am keeping the world up to date on the latest happening, along our journey through British Columbia's Cancer system. I am somewhat grateful I decided to make this public, as some days I simply cannot figure out WTF is going on! Now is one of those times.

First, let me tell you all, we have decided to grab hold of anything and everything out there offering any possibility of destroying cancer cells. Both of us spend hours on-line researching and checking out Mother Nature's medicines, along with, yes, the famous "Horse" medication. At this point Chuckie has his very own pharmacy to swallow down capsules, tinctures, etc. No, we are not stopping his actual medication, but check to see if any of the other stuff counteracts with the IV medication he is given every 3 weeks. 

The past few months, we have been questioning his diagnosis, and, of course this whole process, which has pretty much baffled us. Since I have let you all follow this from the beginning, perhaps you can offer us some answers, as something so life altering should come with specifics, and one would certainly hope due care and consideration. 

So, as you will remember, in September last year (yes, it is almost a year, but seems like forever) Chuck was diagnosed with an enormous tumour in his esophagus, so big, he was unable to swallow without water to assist food down. We had no doubt this was indeed cancer, as his surgeon did biopsies, along with a CTscan. Please keep this infamous CTscan in mind as I continue. The Ctscan also showed other spots , some on his liver, some on his back, some along his lower side. This was classed as Stage 4 esophageal cancer. Scary, yes, but as I have mentioned before , the surgeon who explained all of this to us, offered us the statement, Chuck had a very long road ahead of him. When speaking about Cancer, a very long road, actually sounds pretty positive, he spoke of radiation to shrink the massive tumour, and surgery to remove it, and then of course, Chemo afterwards. 

Following my blog, you will remember the length of time it took to begin any course of treatment,  late November he started, 10 days radiation, and December he began Chemo. We had a meeting with the Oncologist in December in PG before starting chemo cycles in Smithers, we were told this Oncologist would call us 1/2 way through the cycles. 

In March I became very concerned , as no one called for a CTscan after the first in September, it became clear then, no one was actually reading his medical file, as the professionals had not caught this fact. This error caused a baseline to be pushed back much farther than it should have been, it was impossible to tell exactly what improvement the radiation had done, and what almost 3 months of Chemo had done. The CTscan was done in March, before this scan he had been to see his surgeon who did a Gastroscopy, and was thrilled, the tumour had disappeared, the biopsies he took were all negative, but then the CTscan. Apparently he had spots on his liver, and suddenly a spot on his right lung, this is when we were told it was simply a matter of time when the Cancer cells explode and take over his whole system, there was no chance of remission etc etc. 

Now technology is incredible, but in some cases not incredible enough, as we learned in the beginning when the cancer in his spine, was actually explained as old fractures showing the same as cancer (he did NOT have cancer in his spine). So, could these other spots be something else, as well? At this point in time, we are beginning to believe this is indeed true. Clearly as he is listed as Stage 4, some things within the Cancer system in British Columbia are no longer available to him. CT's, blood work that gives tumour marker numbers, and maintenance medication are basically what he is offered. No MRI's, no PETscans, no biopsies, his stage 4 is based on one CTscan back in September and we must simply accept that any and all spots are indeed cancer. 

So since March his esophagus is cancer free, but we have been following his CTscans that he gets every 3 months, and up until yesterday, they all mentioned spots on his liver. Now, that spot on his lung the nodule that had us so concerned, well that disappeared a few CT's ago (big relief). Yesterday, there was a student Dr. in the room for the appointment so we had a much longer time to ask questions. I asked about the liver cancer, because I was going to see if they would consider a biopsy to confirm it was indeed Cancer. SURPRISE!! We were told that had disappeared, no spots on his liver, apparently that had happened a couple of CT's ago????However, he had some enlarged lymph nodes they were concerned about in his chest. We had decided before this appointment we would request a second opinion, as pushed into the twilight zone of just existing waiting for the inevitable time when the medication stopped working and faced with the end, we wanted a clear evaluation not based on the medical report of Dr. Padma who clearly lied and did not do a credible reading of the CTscan all this has been based on. So Chuck asked about a second opinion. This was when we learned this Dr. had never gone through his file! She explained she was not the one who initiated him, therefore she had not seen Dr. Padma's report , or in fact anything before he began chemo. Does that worry anyone? Sure made us sit up and wonder. We were told Chuck does NOT have an oncologist yet, his retired July 31st, so at this point the clinic is simply going to continue this maintenance therapy until such time as they find one for him????? That will constitute a second opinion, right? WRONG!! That will simply be more of the same we have been getting, someone who simply picks up the file and begins where we are at right now. 

This folks, is how deadly mistakes happen. When a person listed as Stage 4 is put on a treatment plan that is Palliative. (of a medicine or form of medical care) relieving symptoms without dealing with the cause of the condition.

"palliative drugs"  .  

What they have decided is, there is no hope, but they are doing what they can do to offer more time and comfort. No one is going to attempt to actually biopsy, remove, radiate,or chemo, just continue on with medications until they no longer work. Again, all based on a CTscan read by a radiation Oncologist who did not do her job properly! Then put on the desk of a medical Oncologist who never once checked in with us, and has since retired. At this point, this means that from now on, no one will/ actually have a clue about the history of this file (besides the surgeon and his family Dr. who have absolutely no say with the Cancer clinic).We do indeed have someone professional on our side who is going to attempt to get us a second opinion, but with our medical system I imagine they will have a very difficult time doing this. 

So, we are going the route of non pharmacy. We have researched natural remedies that fight cancer cells, we have products that regenerate good cells , we have products that kill off parasites, cleanse the liver (seems to have helped with those spots) we have products that increase energy levels, what harm can this do? Yes, we totally understand that these may not cure cancer, but in some cases they have indeed done so, perhaps they will do the same with Chuck? When you have been placed in the position that medically you have been diagnosed as no longer offered a solution to your condition because you have reached a specific stage, you have to try that that science has not researched because Big Pharma doesn't make an enormous profit from what Mother Nature provides. 

For folks who end up in this nightmare I have pity, I understand this becomes your whole world (like us) your focus, your battle, like us, you walk in believing the specialists have your best interest in mind. Sadly it does not take very long to understand, you are simply a number, not worthy of a full read through your file, not given any more time or effort than a big stack of others in the same boat as yourself. Your voice is your only weapon, never stay quiet, always question, and never forget, you are NOT their family, you are NOT their loved one, you will possibly be momentarily missed on an appointment day, but you will quickly be replaced by another, that is the reality. They simply deal with you for a short period of time, and then they go onto the next. This is their job, they see you as a statistic, you get to a place that they decide you are no longer worth giving extra effort to, and you are on your own. It is a very tough lesson to learn, you can simply give up, or you can speak up. Science is ever changing, Cancer is a huge business, no matter how you look at it, yes it is a disease, but it is a disease that is making many extremely wealthy , cures for some cancers have indeed been found, but at the rate we are going, business will continue for decades into the future. When specific medications that cost very little suddenly become extremely difficult to access, one has to question facts. They are not dangerous medications, no where near as toxic as Chemo drugs(you would be blown away at the costs of some chemo medications) but governments have made them difficult to access, why? Again, we continue with the medically prescribed stuff, we took the pause from all the vitamins he was taking, as requested during radiation and chemo, because NO studies had been done in regards to effects of the vitamins during treatment. One wonders why this is so? All we were told was they were antioxidants and he had to stop taking them. So again, clearly he has reached the end of medically proven cures (apparently) so we are heading down another road with renewed faith and hope, something we have lost with the Cancer Care system!