Prince George's Serial Killer Part 6

Back again. Yesterday was a big milestone in this journey. He had his 10th, and final radiation treatment!Our son and his girlfriend drove out to Prince George to bring us home (yes, we are very lucky parents). 

  It was a very busy morning, treatment at 8:30, meeting with the Director of the center at 9, and an appointment with the dietician at 9:30. Chuck was a wee bit disappointed that his favourite Rad Tech was not there for his last day, as I will go into later, as bizarre as it may sound, sometimes in this darkness, you will find people who stand out, people who somehow give you a little candle of light, and become hope in what seems like a pretty hopeless time.  Radiation is over and done very quickly, just minutes, so we had to wait to meet with the director.  Dr, Miller, was not what we expected. She was a very friendly woman, just sat down with us and offered to answer any questions we had. As I mentioned earlier, the nurse Practitioner Eunice, had done an amazing job of answering those questions that were hanging on us. the 15 minutes or so with her, had allowed us to understand so much, and Dr. Miller told us she would make a point of speaking with Eunice to acknowledge this. We were able to explain the crap we went through with Padma, and as she said, in the best of times, it would be nice to not give a Dr. who was leaving, a patient a month before that time, but...as we now know, these are not the best of times, and staff is limited. She explained the oncologist we will see on December 4th, is a specialist in chemotherapy, which is reassuring, he has been in practise for around 40 years, so clearly he will know what he is doing, right? She also explained that radiation continues to work about 2 weeks after the last treatment, and then a patient needs some recovery time for inflamation to disappear, so that is the reasoning for the waiting time before beginning the next step. Dr, Miller did not make us feel like we were taking up her time, it was all in all a pleasant meeting, and again, we left feeling pretty positive.  Minutes later, we were in the dieticians office. Now, at the beginning of his last week, Chuck did lose weight, maybe about 4 lbs, that was when we started pumping calories in with his feeding tube, and by the end of that week, he had turned the corner, and his appetite came back full force. We spent the last weekend, splurging at WhiteSpot, and he enjoyed a huge Bento Box Sunday night. He managed to gain all the weight lost back over that period, and the dietician was pleased. She told us she had never had a patient show such quick results from radiation before. She even mentioned that perhaps he could speak to the oncologist about removing the feeding tube! Happy, Happy! So now we are home, waiting till the 3rd of December to drive back to PG for our face to face meeting with Dr. Saltzman. 

  Now, as promised, I am going to go on to an unexpected experience throughout this step of our journey. We have actually met folks who clearly enjoy their jobs. The nurse practitioner...Eunice, somehow she has the ability to bring calm into a room, you get the feeling she is totally focused on the patient, and speak in a manner, us ordinary folks understand, forever grateful for her ability to lift a massive weight off our shoulders, her explanation of palliative, and her take on statistics, and not curable were so comforting. I need to put down the words she used in regard to not curable, because those were the words we took to heart. She explained simply, say you had high blood pressure, they cannot cure that, but, they can offer treatment that will control it, not curable but hey tons of people live a full life with medications treating something that could kill them. There is always a spectrum with cancer and statistics, a patient could be on one side or the other of this spectrum, so we simply cannot focus on the negative side, as of course we now know he can indeed be the person who gets the right treatment and we simply adjust to an added medication in our world, we know we still have a very long road to travel, but the light is getting brighter at the end, thanks to Eunice. Now I have mentioned James the nurse, who hails from Smithers, maybe it is because he is fresh and new, but again, when he sits to speak with us, he exudes care and compassion, so lacking in the system today, and so refreshing. Those random people who make one feel like they are the focus, make all the difference in the world. I will be bringing him one of my Da'Bees honey jars when we go back on the 4th. Then there is Derick, the Rad tech. Chuck says he is the topic of conversation in the Radiation waiting room. He has the ability to bring smiles to all who must go through this treatment, which is not always easy. I have to wonder how one can do such a job, and spend the day uplifting his patients, but somehow he has the gift. I am glad we had the meeting with the Director, because we were able to acknowledge these special folks, and now she knows which of the staff have made their marks with us and others.

  Oh, Oh, this is getting long winded, but..I must go on.  My family always jokes about how unsocialable I am. I know, those friends from back in the day probably find this strange, as I know I was always surrounded by my "homies" growing up. But as time went on, I became extremely selective on folks I allowed into my bubble. I was so upset when we found out we would be staying at the Lodge surrounded by a bunch of sick people. Silly me!! Cancer is a pretty huge, scary word. Before we decided to put this journey out to the world, we immediately decided we were going to travel it alone with only our dearest and closest . But clearly that has changed, and somehow I found new friends. My disgusting smoking habit is actually how I found these folks, we of course, were banished off the property to perform our daily dirty rituals, so we bonded within our tiny group. This is where I learned the stories of others along the same road. Not trying to make myself look special, but facts are, unless you travel this road, you really cannot understand the enormous ruts along the way. To speak with the ones who have been saddled with the diagnosis, is actually a benefit, you no longer feel alone. That is huge! In some ways it adds a bit to the burden, because you join their journey as well, they become important to you, and their down times you tend to share with them, as they share yours. So, no matter that I decided my focus was just going to be solely on Chuck and nothing else, now I have these special folks who suddenly have come into my little bubble, and I am ever so grateful for these strong amazing wonderful new friends. Diane, wow, she has a story that is absolutely unreal, and perhaps one day she will share this medical F*ck up with the world. Ray, who is at the Lodge with his daughter Lynne, who has moved her world around to hold her 81 yr. old Dad's hand through their journey. See, we are not alone, and our journey is not the hardest, oh there are others at the Lodge who I know some of their stories, but thing is, these 3 folks somehow connected with me, and have become one of the expected positives in all this crap. My family is shocked that Debbie Downer, the most unsocialable person on earth, managed to allow herself to make new friends ..but it is true. And I am ever so grateful I went out of my comfort zone to do this. 

  Alrighty, I need to stop now. Made Chuckie a huge breakfast, and he is on his second coffee, so far, life is semi-normal in our house.

Prince George's serial Killer part 5

 I know, been gone a few days, most have been pretty routine. Radiation treatment, usually between 8-9 AM, and then Chuck has been sleeping. I will admit since reading the medical records, we have been in a bit of a funk, palliative has been hanging over our heads, as we all know folks who have been put into palliative care, and understand what that means.

  Well today, was a bit (actually huge) bright spot. First off, we got up early so I could pump 600 liquid calories into him, 4 hrs. ahead of his treatment. After his few minutes in radiation, we had an appointment with a Nurse Practitioner.She took his vitals and weight, and then asked us how things were etc. then, she wanted us to ask her any questions we had. Well, of course I blurted out the dark word palliative, and asked why that was the radiation treatment he was being given.

  Lovely lady...she said it is too bad we had read this, and thought it was used in the same context as what most folks would think. It is simply stating the radiation treatment is to attempt to shrink the tumour, allowing him to be more comfortable while going through the next stage of treatment. Yes, it is not curable, but, it is treatable, and we will still have to wait to speak with the oncologist on the 4th, but that is when we will find out the battle plan. Like many cancers we can hope with treatment this goes into remission. It is not going to go away, with a simple surgery that removes it, that IS curable, but with the right chemo, etc, we can put a wall around it. Prognosis may in the Drs. eyes, be poor, but she is also the same person who said he had cancer in his spine, and full out lied in her consultation report, so don't take her word for diddly.  

  Our complaint about that Dr. Has gone to the top, however, we have not had any communication, as yet from the director. Again, as I mentioned , we will not have to deal with my sister-in-law's oncologist, and will indeed have a face to face meeting with one from Vancouver, who will review all the records again. Feeling far less stressed about this meeting, not sure if I would have been able to be in the same room as Dr. Ho.

  I will also at this time,once again state, what an amazing place the Kordyban Lodge is. I do not understand how a place like this can be filled with the most positive staff ever, but it is!!Not only is it comfortable, it is peaceful and relaxing. Convenient to the Cancer center with a covered walkway behind the building that takes you right to the door, in minutes. Free laundry facilities with detergent and bounce, so you don't have to pack stuff in and out. Delicious meals 3 times a day and snacks whenever you want. Places like this, that are free for those who have to travel for treatment, and caregivers are only $31.50 a day, that takes a whole lot of stress off folks who have to leave home.

  I will also take this time to thank our kids. Due to unforseen circumstances our oldest was unable to spend the few weeks at our house (she is on pins and needles waiting for our Great Grandson to arrive, and will have to drive from FSJ to PG for the delivery). So our youngest has been able to work from home these weeks as she takes care of the dogs, cows, chickens, ducks and turkeys. Our son and his better half, spent the weekend working on our car, doing the brakes, etc. so Chuck doesn't have to lay out in the cold. They have allowed us to simply focus on the most important matter, and for that we are grateful. We are also grateful to those family and friends who have called, messaged, spoiled us with treats,and been there to listen when I need to talk. I cannot imagine going through this alone, as I know some have to. I do not wish this experience on anyone, still hoping someone will pinch me,and I will wake up to find it is just a nightmare.

  But today, Chuck took a nice walk, had some more calories pumped into him at lunch time, took a nap, and..woke up hungry! He had a sandwich and a Guiness, went down for supper and had some Butter chicken, rice and veggies, wolfed down some tasty  nougat from our wonderful friend, and is thinking swallowing is much easier. So..fingers crossed!

  Thinking positive again..will update when we hear any news.

Prince George's Serial Killer Part4

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

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

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

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

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

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

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

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

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

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

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

Prince George Serial Killer part3

O.K. Bear with me, using a lap top, so my old eyes and fingers may screw up a wee bit. 

  I honestly don't know how I am going to put this all down, it is just a little too much for me to accept, and in truth, absolutely  frightening! Yes, we know our medical system is screwed, but I doubt anyone knows exactly how pathetically screwed it is!

  First lets put something positive down, before I head off into the dark side. We are staying at the Cancer Lodge in Prince George, Kordyban Lodge. When we got the call we were going to be staying here, I was mildly upset, mostly because we love our privacy, and also, who wants to be stuck 24/7 surrounded by a bunch of other folks fighting their own battles? Sure didn't take long to change my tune.What a wonderful place this is, filled with the most positive staff, welcoming, caring, and with the clear goal of making a person comfortable.  There is everything you could need within a beautiful building, laundry, library, games room, TV rooms, lounge, and a dining room that provides 3 meals a day, plus coffee, tea, snacks etc.There is a covered walkway connecting the building to the Cancer center, so we are able to get to appointments within minutes. No rushing about, meals can be set aside if appointments require missing them. Everything is done to try and make this experience calm and stress free. I cannot praise these folks enough, they are amazing!

  Now to enter the nightmare that is British Columbia's Cancer care!!!Folks , I am so shocked I am sick to my stomach. Like I said, the goal at the lodge is so folks talk to each other, and surprise, I will admit I smoke, so we bad people, must go off the property to do our dirty business, and this, well, this is where I heard some pretty nasty horror stories about some of the other folks here. Last night I met a couple that have been here since May, off and on.Guess when the person with cancer was diagnosed with prostate cancer? You will sh*t your pants when I tell you. October 2021!!! Go ahead do the math  October 2021 to May 2023, when he was able to see any treatment.  .Wow,good thing those nasty cancer cells simply hibernate for the waiting period. Thank goodness the prostrate cancer does not decide to run amuck hitting other body parts while a person sits by the phone waiting to hear that someone is finally going to address the problem. I am being totally sarcastic, in case you thought I was foolish. We all know, Cancer does not take holidays, and given the chance it likes to head off in all directions, so in 24 months one doesn't have to be a Dr. to realize things will be far worse than they were when cancer was diagnosed. Also, in case you don't know, stress can mess up one's life dealing with this disease hanging over you like a sword on a thread.  Oh, these folks have been through some massive hard times, I have to wonder, and they do as well, how much easier things would have been if they had started treatment back in 2021! Speaking with them, I mentioned I am trying to post our journey so others can learn from our experience, the husband said he wished he had kept a journal of his own nightmare, so others would know..you have to hear this crap! I have listened to many other stories just as disgusting, seen scars on folks who have been put through the wringer, because of misdiagnosis etc. So, back when I began this and asked the question "if this is how slow things move for someone with URGENT marked on their file, what happens to those who do not have the URGENT?" Guess I know now, they wait almost 2 frigging years!I am simply blown away! 

    So, lets get on with our own story. See, it's good I write this stuff down, I can go back to what we were told at anytime, and wonder at things we are told now. The rude confusing Radiology oncologist, informed us that Prince George had 6 oncologists, of which she was one.  Alrighty, so if you are like us, you assume they are all right down the hall at the Prince George Cancer center, because that was how it was put across.  Knowing that Chuck will end up with a medical onocologist, we figured the chances of us having to deal with the same impersonal depressing one  our sister-in-law had was not likely. Yesterday, after his third radiation treatment, we had an appointment with the dietician. Lots of talk on weight loss and tips on what to do to try and bulk him up, and a comment on how he needs this badly because he has a long rough road ahead after radiation. Huh? So , you know me, I hang on to every word. I blurted out"what do you know that we don't, all we know is that he has 10 radiation treatments, what do you know that is in the future?' Ooops, she claimed she is the only dietician doing the work of 3, and she got him mixed up with another patient. Then she clicks on her screen, and up pops the list of his radiation time scheduled, he gets a note on a card every day with the time of the next days treatment, however clearly there is a list of all the treatment times somewhere? Then, we get hit with the ultimate..she tells us that he has an appointment with Dr. Ho (my sister-in-law's dr.)on the 29th. Going to be honest here folks, although this is out of my comfort zone, I broke down in tears. It was like getting punched in the gut. Chuck explained our issues with Dr. Ho, and we were offered a social worker to come to this meeting with us to ensure we had our questions answered etc. O.K. I know some of you are thinking ask for a different one, well, I will explain how that really isn't an option in a minute. See, his treatments end on November 27th, last one in the morning of that day. So, realistically we could go home that day,but look Dr. Ho has booked us in November 29th..geez 2 days sitting here when we could be home. Are you getting any twinges? hey, we did. See, we are from out of town, that is 2 days sitting in PG , what are the chances we will decide to just go home and have a frigging Zoom meeting with this witch? pretty good, right? O.K. This is when things get really interesting....Message the social worker, asking if we can have a chat with her, because, as you can see, we have some questions.

  Up this morning, poor Chuckie, no food or water 4 hrs before appointment, since they have all been around 8'ish, this is day 4 without a coffee to begin his day, weight loss is proceeding very quickly, and Radiation over in a few minutes. Then we have a meeting with the nurse. His job is to ask how things are going, and if there are any issues, etc. In the midst of this meeting the social worker comes in. 

  She is very helpful, but..surprise, she is over worked, they are also in short supply. One would think in a Cancer center there would be a nice staff of these folks, because this is really a time people need someone in their corner getting answers to all types of questions, but guess what..she has a massive work load, and is stretched thin. However, we discussed the issue with Dr. Ho..now here comes the facts...See we could get another Dr. however, Dr. Ho is the one and only oncologist in Prince George, the rest of them are in Vancouver, and..just available by phone call or Zoom!! 

  So, in Northern B.C., all of Northern B.C., there is ONE medical oncologist for all those folks who have cancer, trust me there are an awful lot of folks in our position, and Northern Health offers a face to face with ONE !! The system is beyond broken folks, it is shattered! What kind of service do you think you could get from one solitary dr. who is dealing with a huge patient load? How easy would it be for that Dr.to make a mistake, maybe trying to get through a pile of files after dinner, and a wee bit tired? They are indeed human..so, I believe the chance of a mistake addressing something like Cancer, would be statistically high. I wonder if anyone above in administration(which seems to be staffed to the hilt), is keeping tabs of how many mistakes are being made, because there are no where near enough medical professionals.So, here is our choice, one meeting with the dreaded Dr. Ho face to face on the 29th, with our social worker sitting in, a Zoom meeting with said Dr. on the 29th..or requesting another Dr. with no idea of when they would be available for a Zoom meeting! Is this the description of Catch 22? 

   Next question I ask is "we have 10 radiation treatments, we have had a few tell us Chuck has a long road ahead. What is suppose to come after the 27th?"  Well, apparently Dr.Ho will likely tell us what her plans are, however, we will be sent home for 6 to 11 weeks ,before we begin the next stage, and will jus have to wait for a phone call.  Now, I have been doing a ton of research. Most folks who do radiation treatments, have an average of 30 treatments to attempt to kill off the big bad cancer cells. Chuck has 10!  That is NOT going to kill off the bad cells, clearly he is getting this to attempt to shrink the tumour so his esophagus does not close up. In 6 to 11 weeks, one has to wonder where else those cells will have travelled, this is totally UNACCEPTABLE!  We have no issue fighting this disease, but we can't do it without some frigging weapons, so from the looks of things, now we wait till next y.ear, and see what sh*t they throw at us...Short staffed everywhere, lovely Cancer Center, lots of excellent tools, but...NO People. Where is the medical health budget going? We are losing folks to the States because they pay so much better, and offer many benefits. There is an awful lot of tax dollars in the kitty, can we not use those to sweeten the pot to fill our health centers with staff?  No, we will spend money on questionnaires asking what pronouns one wants used in regards to them, and advertising up the ying yang on all the services offered to select diversities. Stop the useless crap,and hire enough people, no matter what dent it makes in the budget. Don't give management bonuses for jobs definitely NOT well done. Give that money to the ones who actually provide medical care, not the ones doling the money out to where it does not need to go.

   So now we are trying to figure out what option we go with, do we want to sit here in PG for 2 days waiting to have a face to face with someone we will not likely see again, as, we have also been informed Chuck will not be getting chemo here, his time at the center will end on the 27th, then he will have to deal with Smithers or Terrace..3rd party care..info passed back and forth between Smithers and Dr. Ho,nothing can go wrong, can it?

   My rant for today

Prince George Serial Killer Continued

Alrighty, I promised to continue this, and so I will. However, I need to begin with a few words on the fall out that occured as a result of my first blog in this "series". We knew putting things out there was a huge step, and likely would take away something very personal, as I said, we decided the price was necessary to allow others to see how the system was killing people, I just want to stress how very uncomfortable this has made my family, and I totally understand why I have not seen anyone else open the doors to such a trauma that comes with the dreaded diagnosis of Stage 4 Cancer. We just wanted to come together in our tiny bubble, build each other up, and start our fight to win. You need to know those in your corner are there, you need to have love and trust, and you need to understand each of us in this bubble are focused on the same thing. We are going through a process we have been through before, and we have set our sights on the light at the end of the tunnel that may have been flickering a bit these last weeks, and we may have wavered a little, however, we begin each and every day, with the determination this is short term, so, it is extremely difficult to suddenly have to hear the "sorrys" and hear the fear from folks who we know mean well, It is wonderful to hear from those who offer their strength through their prayers, and trust me, we do appreciate those words. What I am trying to say is, basically, I am sorry this news comes as a shock , but we have been adjusting, and coming to terms, and getting ourselves geared up for the new road in front of us, for weeks. We are done with the shock, and perhaps we may be a bit nervous, but this is what we have been handed, and we are positive once we begin, we will work our way back to normal, well as normal as our lives have been. Again, it has been uplifting to know we have so many that care, and it is nice to hear stories of others who have been where we are, and found their way out, I am not trying to be rude, I know I put this out there, but I am hoping by putting down our story through this, we can still keep our lovely little bubble apart from the rest of the world.

  Something changed this last trip to the Prince George Cancer Center. Now, since you know Chuck, you also know he is First Nations. I almost feel guilty telling this part of things,because I also know what happened to him, does not happen to everyone, and it should!! Before our appointment with Radiology, he recieved a phone call from the Aboriginal Liason person. She asked him how things were going to this point, and he explained our experience much the same as I wrote in the first part of things. He explained the weeks upon weeks without any communication, he explained how his surgeon had done all that he could to ensure speedy treatment with a file marked URGENT. He explained the horrible experience during the so called "Consultation" , and having to call time and again while the file sat untouched. She listened to it all, and surprise , she agreed it appeared they had dropped the ball. She promised to be there for us, and while we waited in the lobby she came and sat with us. When he was called into Radiology, I asked if I could go along, absolutely, no problem ...she came with us. What was to happen during the appointment was explained and after each explaination the technician stopped and asked if we had any questions. It was wonderful! We did not feel anything we asked was stupid, and he answered everything clearly. There was one question we did ask, and he was not sure and offered to call the Dr. we both answered immediately, "NO!" Then we were told they had his appointment card and brought it to us. He was scheduled to begin radiation treatment on Thursday. Now that was a shock, as we told the technician the Dr. had explained to us it would be a week to 10 days, because they had to build a mold. We had no idea treatment was to begin in 2 days, no time to go home, certainly not ready for 10 days of treatment. However, although we were not ready, we explained we were more than willing to begin immediately. Ahhh he had no idea about a mold, there is no mold for his treatment. So off we go into the room. During this appointment, he was placed in the CATscan machine. They used laser beams to map out the area the radiation would be directed to, placing stickers in a triangle, from where the tumour is in his esophogus and on either side where the affected nodes are. then I , along with the technicians left the room and he was given a scan, which they saw on the monitor in their room. After the scan , the technician came and asked me for the appointment card back, and then went and tattooed 3 tiny blue dots where the radiation will be directed on all his treatments. Chuck was done for the day. We were given the card back, no appointment on the Thursday, the Dr. had called and said she needed more time for her mapping, and suddenly the treatment will not start until next Tuesday after the long weekend . We were also informed that this onocologist would be leaving the center the end of the week he starts treatment. Clearly not someone who gives a rat's ass about this patient. In truth , that is possibly the best news we have gotten yet. I don't think we could have dealt with that woman again! She likely has some packing to do on Thursday and Friday.

  So we are on the road to the light, This will likely be a bit bumpy, and on top of everything else, it is a shit time to be starting as we will likely be dealing with all the Christmas and New Years holidays when we begin the next stage, since this is over on November 27th, then he will have to take time for the inflammation to settle before we actually get to see a medical team and the onocologist who will decide when and what comes next. We have been warned this will cause nausea because it is centered near the stomach, and a lot of fatique, as well as loss of appetite, so we will play it by ear. 

To be continued......

Prince George's Serial Killer

 It is 3:AM, fell asleep about 12'ish, wide awake, and my mind will not shut off. 

  I am beginning the first of what will likely be a long series of life lessons I need to share with the world.My family has been put in the position no one ever wants to be in, again!!It is a position , like many folks, as well as ourselves, generally attempt to keep private, well usually among loved friends and family.That was our decision in the beginning, however, it is such a horrid position, I can no longer keep it quiet. Perhaps, keeping it quiet is the reason it has continued and grows progressively bigger? If so, maybe my words will make a tiny difference, and maybe someone who can make a difference will read these words, Lord make it so!

  Earlier this year, I lost a dear friend, my sister-in-law of over 4 decades. My brother's wife, my nephew's mother, their children's grandmother, and a beloved friend to us lucky ones. What a cluster F--- her journey was with the dreaded disease Cancer. She was a far nicer person than myself, she started out thinking she was in good hands, with the Prince George Cancer Clinic, little did she know, she was just a name and number to them, and clearly her life simply went into a slot that she had to accept the treatment she was given without question. Yes, folks, this lesson is one learned immediately upon entering the hallowed halls of this Center, DO NOT QUESTION, you are in a system, and you must be silent, and follow the directions. She accepted the "new and improved" ZOOM system. I need to explain what this is, as it may work with business meetings, and school work, but keep in mind, we are talking about Cancer. This sytem was set up to help those of us in the north, save on travel, every once in awhile the center would set up a meeting, in which the patient would likely go to a room in a hospital with a computer, sit down, and have a virtual "meeting" with her medical Onocologist (the person in charge of trying to cure the cancer). I put the word meeting in quotation marks because these were not meetings, they were basically the Onocologist speaking her words, and no questions answered. Every time my sister-in-law had a Zoom meeting she would spend days upset, because she was not heard, and made to feel foolish if she asked anything, each time she would be told something totally different than the last meeting, but..when she questioned she was told the previous statements were not made, easy with a Zoom meeting, right? So, because she agreed to the Zoom, she was basically stuck as a third party person. The hospital she had treatment at, was the closest larger hospital to her home ( 3.5 hr drive on a fairly isolated highway) so, the Onocologist at the Prince George Cancer Clinic would get test results from the Terrace Hospital, and make her decisions with what she saw. Then she would contact the staff in Terrace, and tell them what levels of Chemo, and how many treatments and how often. Do you see how problems may occur?Don't you think that the person involved with filling you full of poisin should perhaps be involved just a little more? I ask that, because..my sister-in-law lost her battle, because she was given too much chemo and it burned her grey matter. Yep, so much chemo that her brain cells began to die, and the prognosis was , they would continue to die and not come back because she had been burned. O.K. there is likely a better medical explanation, but this is what we gleaned from what we were told. Would that have happened if the Onocologist had been keeping tabs on her patient? What are patient files for? Do they actually read the file, or just some highlighted areas (I ask this, because when I begin our story, it will become clear they do NOT read files). So patient lost, wife lost, mother lost, grandmother lost, and friend lost, because clearly someone did not do their job properly! Now, one has to ask, do you think the loss of a scheduled ZOOM meeting made a lick of difference to the person who was suppose to try and save or at least prolong my sister-in-law's life ? My take on these ZOOM meetings, is, would you rather try and come up with the money to actually have a person to person meeting with someone who is suppose to attempt to save you, or save a couple of bucks, and talk to a screen? Ultimately I think perhaps, and it is a small perhaps, they would feel a little more human if they had to look one in the eyes, and maybe they would be just a little more responsible , again, this is a small maybe. 

  So now I take the leap, and put something extremely personal out for all to hear. First let me say, those near and dear to us know this already, and it was suppose to remain with them, maybe making it public will allow them to talk openly with their friends for some support through this nightmare, but it is far too important and far too awful to not hold those doing a very shoddy job to the fire.

  Last month, my beloved started having difficulty swallowing. He found he would have to drink fluids while eating to help the food go down. He knew something was up, but trying to get an appointment after his family Dr. left town was a pain in the butt so he let it go for a few weeks. Over 7 WEEKS ago while having supper at home, he suddenly could not swallow, not even his own spit. Thankfully he could breath fine, the food and fluid just came right back up. Off to ER, he was lucky Dr. Kim was on duty. She checked him over and decided he needed a scoping, and that was done in Terrace. Our youngest drove him out and the surgeon called me to tell me he was in surgery so it was going to be awhile before he could do the scoping. That was done early the next morning. I drove out to pick him up, and while on the road got a call from the surgeon's nurse asking when I would arrive, because the surgeon wanted to speak with both of us. You know that is not a good sign, right? When I arrived my honey was all ready to get dressed and come home, but again, we were told to just wait until Dr. Youssef spoke with us. I think we knew then it was not good. Our son and his girlfriend had stopped by while we waited and came in to hear the Dr. speak. It was not good at all. He had a huge tumour in his esophogus, the Dr. said he would lay money on the fact it was cancer, from the pictures he took while scoping. He spoke of possible thorastic surgery to remove after radiation treatment, all the time treating us gently, and answering all the questions we had. Hearing news like this is never easy, however Dr. Youssef made us feel like he was there for us,and promised to call when the biopsy came back. He did, it was indeed Cancer, in fact mestastic cancer, as it appears to have spread to some nodes, and the liver.Scary, right? But again, this Dr. promised to be there , and offered my honey the ability to call him any time he wanted to talk. So...He sent the file off to the Cancer Center in Vancouver marked URGENT. He told us to wait 3 days for them to call and to call him back if we didn't hear anything by the Monday. Monday, comes, Tuesday comes, Wednesday comes, this has been over a week. So I make my man call the Cancer Center in Vancouver. Surprise!! They sent it off to Prince George Cancer Center, and I will say, Chuck spoke out loud the words to the person on the phone, "Oh great, the place where people go to die!" They gave us the number,and we started to call, getting voice mail time and again. I tried calling later, and lo and behold a very nice lady answered. I gave her the information, she checked, sure enough his file had arrived 2 days ago. So..my question was, when will we be contacted. She told me I would hear from her the begining of the next week, Again, Monday comes, Tueday comes,no call back keep in mind this file has been marked URGENT, keep in mind we are very anxious to get things moving to fight this battle, it is on your mind 24-7, your world has now flipped and everything is going to be different for a long period. On wednesday, I called back, the nice lady answered. I explained that I was sorry but hope she understood the stress, and she did, then I asked the question,"what is happening with his case?" I could not believe what the answer was, apparently his file had NOT been looked at by anyone!!! I was shocked, I told her I knew it was marked URGENT, it could enlarge a little more and he would not be able to eat or drink. I will say I was a bit pissy, but cripes, WTF?? She said she would email the Dr. again. I also informed her that we would NOT be doing ZOOM meetings, we would travel to meet face to face, we were NOT going to have a third party treatment plan.Fast forwards, we are now into 6 weeks. Dr. Youssef calls us, he has been on the phone with the Cancer care team in PG and they have come up with a plan that has Chuck getting a feeding tube inserted (just in case) and the nice lady calls as well to say he will be booked in a week after the tube is done. Again, bless his heart, Dr. Youssf books Chuck in on that Saturday and puts the tube in. We wait the week, nothing, two weeks later, he gets a call for a consultation meeting with a Dr, Parma...O.K. some of you know me, Off to google I go, because after this call, we actually had ameeting with Dr.. Youssef at our local hospital, and I mentioned the Drs.name, he had not heard that name, his contact was a totally different radiation Onocologist.He also was shocked that Chuck was NOT in PG the week after he had inserted the feeding tube. I found her name, she has been in practise in Canada for some time, so...O.K. The appointment in PG was for 8:15 in the morning, so since it was snowing, we knew we needed to go the day before to make that early appointment. Did I forget to mention, we have 3 dogs, 5 cattle, and a shit ton of chickens etc? So our youngest worked from home and took care of the snimals, and we packed for the Friday appointment. Thursday afternoon he gets a call from the center informing him he had an appointment for radiation mapping Monday afternoon! O.K. folks, we go for a Friday, on a Thursday, and now we have to be there on a Monday. It is a 5 hr. drive from here to PG, so we now have to go on a Sunday, yes today, so we can make the appointment on Monday..Hummm..So, lets talk about this "consultation" Again, yes, quotation marks.8AM we are at the Cancer Center, I have my book with me, because I am keeping notes on all of this. We were told it would be a 2 hr. consultation, so we assumed we would find out what we had ahead of us. The first hour was sitting with a nurse who took a full medical history, height, weight, BP etc. He had to tell her what meds he was on, what vitamins he was taking ( I read up on T-cell boosters, so he has been taking Vitamin C Vitamin D, Zinc, Elderberry and echinacea) oops, going to have to cut out those vitamins because there is no study on how they will affect radiation.Questions such as have you been anxious, depressed, concerned about finances, etc. he told of all his medical history, such as his sub dermal bleed, and breaking his back into 34 pieces . I need to put this down, because you will begin to see why I know files are NOT read. Then comes the question "what do you identify as?" Huh????? I said First Nations, because now forms often have that on them..Oh no..she means what are his pronouns!! Really and truly folks, when a human being is dealing with Cancer, do you think they would be offended if you didn't call them "they" "it" "kitty"? he just told the nurse I think that business is stupid, so end ot that section of "consultation". Finally the Dr. comes in. She has two pieces of paper with her, and begins. This is were it starts to scare me, not because of the Cancer, but because of the lack of history. She tells us he has cancer stage 4 (when it has spread) it is in some of his nodes, his liver, of course his esophogus, AND..in his spine! WHAT!! This is news to us, Holy Crap! Threw us both for a loop, she explained from the CAT scan photos she had, that she would be doing the radiation from the point of the tumour in his esophogus to his spine. HOLA, that is a pretty large area. Somewhere in this conversation he mentions that he takes CBD for the pain in his back.She asks what that is from, and he states as he has stated many times on his file, he broke his back years ago. "OH!" she says, that is good news for her, as fractures show the same as Cancer with the scans!! WTF!!! Again, what if he had not mentioned that during the conversation. Oh it gets better..(worse) We get onto the feeding tube, he mentions how he has lost a fair bit of weight. "Ah: you are not getting enough nutrition through your feeding tube" O.K. seriously worried now. The feeding tube has not been used, we simply keep it clear in case the radiation causes the tumour to enlarge in the beginning. I also understood my sister-in-laws issue with questions ..because I did ask some, and..I was told that I need to let her continue on her line of thought till she was finished. WTF??? She could not tell us anything really, as she was just the radiation Onocologist, and we would have to wait until that part of things was done, before he could speak to the medical team. During our conversation, she mentioned that her department was down to 1/2 staff. They had the machines, but not the technicians. Folks, I know this is an issue in all hospitals, but due to the seriousness of this disease, either this center finds a way to ensure the people of Northern British Columbia have a chance to be cured, they either need to send people elsewhere that can indeed do the work quickly, or not play waiting games with their lives. She admitted she was the reason we had to wait longer than the week promised. She felt she needed to allow him to heal after the feeding tube, so he could lay still for the mapping. Again WTF! healing time was 2 days, but she made us wait, could someone have perhaps called to see how he was doing and make the decision based on fact? So..he goes for mapping romorrow, then there is around a weeks wait while it is all set up, O.K. by the time he gets into treatement we will be 11 weeks with a cancer classed as URGENT!!You tell me is that acceptable, would you want your loved one waiting that amount of time? The center itself is beautiful, however buildings do not provide diddly when someone is battling Cancer, we deserve fast effective treatment, like former provincial Premier John Horgan, s*it his treatment moved along far faster than what we are dealing with. Again, if this center cannot do it job efficiently, send people somewhere that will! This is not a hernia, or knee surgery, that folks have to bear pain for long periods, this is CANCER it doesn't stop on it's own, you simply cannot and should not have to wait 11 weeks to begin treatment. I have heard folks speak of the delays that become deadly, we don't care if we have to sell everything we own to pay to travel somewhere decent, but at this point we are in British Columbia, and we are at the mercy of the sh*tshow we are offered . Just take a moment to imagine waiting 11 weeks , and clearly longer, because as she explained to us, she will do 10 radiation treatments, which they do not do any tests during the two weeks, and then he will have to take a couple of weeks for inflamation to settle, and then he will finally , maybe, actually meet with the medical team who will inform us what the next steps will be, Oh and we were also informed no treatments on long weekends or holidays,lol, plus she would be leaving the center, maybe even before he is done his treatments. Yes, feeling pretty confident this is someone who gives a sh*t!

  I am going to keep spewing this nightmare as we travel through it. We just cannot keep this cluster F@ck to ourselves, because this can happen to anyone, you will live in limbo like we are, trying to keep faith in a system that is so very flawed it is criminal. Cancer is not a fair player, and sadly the loss earlier this year weighs very heavy on all of us, making this just that much harder. Someone or someones have to be held responsible for gambling with peoples lives, because that is what they are doing, I have to wonder what we would be going through if the files was not marked URGENT!!

  To be continued........