I Am Apparently Privileged

Alrighty, this is something I have held off putting out into the world, for some time. The hold back, is not because I am in fear of a great debate regarding my words, but the fear that a label will be placed on this blog, without the abilty to debate. It seems the way of the world in the past few years has been to cease debating one's opinion, and simply deciding it is politically incorrect, because it does not follow the herd mentality. This is something , as a elder in todays society, I never imagined would happen. 

I am of an age, that my schooling required debate, folks of my generation had various opinions, and we were more than able to stand up for our convictions, with the only reprisal being the  knowledge that a friend sitting in the next desk did not agree with my stance on something, be it politics, religion, or what the latest fashion was. Unless our teachers showed us evidence, and this would be unmistakeable evidence, our view may be incorrect, allowing us the ability to do our very own research on both sides of an issue, and deciding in our own minds, perhaps we had not looked far enough into a matter,  we kept our opinions without fear!

 I remember politically, in a very small town, we had our steadfast Liberals, our overly vocal NDP, and because it was a mainly blue collar town, the majority Conservatives, and we all knew who they were, because opinions were personal. Now, perhaps there were plenty of arguments over parties, but that was because our town, and our country was democratic, you did not have to worry about racism, discrimination , or white supremacy, labels being placed on you. You could faintly figure out where your teacher stood on matters, but, never did you feel the need to accept their opinion.Their goal, in those times, was to teach you to form your own opinions, by reading facts in trusted newspapers, that always showed 2 sides of a story, or digging out the encyclopedia and doing some study. See, that is what has suddenly disappeared in our society, the two sides. Now you are labelled with some very horrific titles, if you do not follow the single side shoved down your throat by media and politicians, and educational institutions now.

 So, after almost 68 years on this planet, I am suddenly charged with genocide, colonialism, racism, discrimination, and the bizarre label of White Privileged! WTF!!! 

 Firstly, I am a first generation Canadian, I was born in a tiny little town in Northern B.C. I may very well (if you follow the belief of reincarnation) have been a settler in the 1800's , but as far as I know, 1956 was the year I began my life in Canada. I was a post war child, so the horror of the Second World War were still pretty close, and I knew many who had lost Husbands, and sons in this war. I knew about the autrocities committed towards the Jewish people, and I was grateful that our countries had not fallen to Hitler, and we were not surrounded by White Supremists. Perhaps this is why I grew up with the belief that race, and religion had very little bearing on who a person is. Those things were personal, and we lived in a free world, thankfully! I have never, ever, been in a position to discriminate, as the only large group I have been a part of is the Canadian Armed Forces, and...we were, at that time, all equal (except Officers). I also grew up with the knowledge that you cannot control who your parents are, as well as your siblings. They are their own person, and you are not responsible for their actions! So these labels placed on new born "White" babies, as colonialists, or Settlers, are absolutely disgusting, and make no sense whatsoever! That child is in no way responsible for things that occurred a hundred years or more before they entered this world, just as I am not!! To stick me with the label "Privileged" is also insane. Do you know my life story? Throwing that word at me, simply shows a lack of common sense, as it does to that little " White" baby. To believe, in this day and age, that being White, is somehow a privilege is asinine. 

The jobs listed now exclude those who are a whiter shade of pale. Universities proudly list positions with the caveat "NO WHITES ALLOWED." Benefits from the Government of our Country also single out races, and religions for extra treats, not given to those labeled "Privileged". Suddenly to be "White" is to be placed at the bottom on the barrel, with the extra kick in the face of listening to how "Privileged" one is. 

Don't get me wrong, I am not angry, at where we have come as a democratic country, I'm not. I am so damn sad at what our society has become. I feel I no longer belong in the country called Canada, the only home I have known. I no longer belong, simply by the fluke of fate, born to parents who were "White", living a life considered "Privileged" (if only). My beloved and I raised a family, who, surprise, are "Privileged", as well, because clearly our children look "White" . That folks, is when others should stop and take heed! They look "White" , but they are really bi-racial. So does this mean they are semi;"Privileged"? For crying out loud, it is time to take more than a single step back from this lunacy! This divide concocted by Government and media has got to stop! If we are truly attempting to become a country that does not dicriminate, the road we are traveling is NOT going to get to that goal by stating one is better, or less than another, because of the inabilty to chose who your parents are!! That is impossible, as common sense tells you. Lets try and get back to using our brains, and the knowledge that we need to look beyond race!!

The Twilight Zone of Cancer

Tried writing an update the other day, just not worth posting, as I couldn't put down my thoughts the way I intended. trying again...

This past month has been a series of confusing news, that just goes to show the ups and downs folks dealing with the B.C. Cancer Center go through. Dealing with this entity is in truth, just as hard as dealing with the disease itself. 

Before I get into our travel marker on this journey through the Twilight Zone, I need to speak about my friend's trip. The walk along side of her, has been an absolute rollercoaster mostly going to the pit of hell. As I mentioned previously, she has a very rare form of cancer, one that is unimaginable, I am going to let it go at that. So , as it is rare, treatment is really a guessing game. She has gone through surgery, and when we met, she was beginning her 7.5 weeks of Chemo and radiation. She finished this at the beginning of January, and was sent home to "recover" until April. Keep in mind, no tests on the outcome, just sit at home for 3-4 months and cross your fingers it is not growing like crazy..Because, folks when this is inside of your body, that is where your mind goes, no matter who you are. Come the beginning of April, off she goes to PG and is told, the treatment did nothing!! What a blow, right? Her records have already been sent to Vancouver, and she gets a call from there, telling her the next step is for her to travel to Kelowna for a PET scan, and then they will decide what surgery they will do, both types requiring her to have all sorts of parts removed and bags to do bodily functions, plus a prognosis that is pretty grim. She also must go into her local hopital and have 4-5 biopsies taken (very painful) . Well it turns out on a Video cell call the vancouver specialist wants them to do 18 biopsies many of which are "Punch" biopsies, all while the cell phone is up to her tumour. This is done. Then more recovery time, and only weeks later, a phonecall informing her she is now in remission! No cancer detected, all biopsies negative! Her treatment for the very large dead tumour, antibiotics and vitamin E to help heal. Just let that sink in...can you even imagine getting two completley different reports , one basically saying you have no hope, and the next saying surprise..you are cancer free? Please don't get me wrong, I am ever so greatful she has won her battle, however, the toll the rollercoaster has taken is intense. Mental health fighting any disease is of utmost importance, hers is in tatters. This is what the system does that is so very wrong, there is absolutely no consideration for one's mind, and the body can not heal when the mind is not assisting. 

So onto our story, keep in mind, as we travel our road, I walk beside my friend on hers. We have shared a large part of our battles with each other, we question each other, we lean on each other. She is in the fight, I am beside a fighter, so she can help me understand what my beloved doesn't speak. 

Chuck finished cycle 6 of chemo, cycle 1 started in December. We were told we would hear from the Oncologist around the middle of this cycle..Not a peep! In the midst of this cycle, he had a CTscan, and a echocardiogram. We had an appointment in the book from his last chemo IV for the Tuesday in Smithers to see the Dr. Off we go. She came into the room after reading the CT report. OOps forgot, during this cycle he also had the feeding tube removed, a gastroscopy, and a colonoscopy, by our very favourite surgeon who did the orginal diagnosis back in September. After the procedure he came out to speak with me, and was very excited. He said he could not have imagined the improvement, and explained her had taken biopsies as he scoped.  So back to the Dr. She explained the CT was very positive, all biopsies had come back negative as well. No cancer in esophogus. The nodule on his lung had disappeared. The spots on his liver besides one were gone. There was a lesion in the opening of the pancreous but not worrisome. She also said there were some lymph nodes that may be questionable. So, it was decided he was done Chemo! Now he is on something called maintenace therapy, he will simply get an IV infusion every 3 weeks of the targetted medication he has been on since December. He will do this until December and then we will see what is decided afterwards. You say hallelujah? Well, in additon to this, we find out the next day during the IV, that he will no longer have Dr. appointments, nor bloodwork, simply every 3 months he will get a CTscan. His cancer is a very agressive type, it moves quickly, in my little mind, 3 months is simply NOT acceptable. Now I have to attempt to get in touch with the Dr. next treatment date, and request he at least gets blood work once a month, there is no way in hell we can manage to go along for 3 months at a time wondering if the medication is still doing it's job. You have to understand, we have had to deal with Dr. Gloom and Doom, who at each appointment stressed the medication will stop working at some point, and the cells will become immune, taking over all his organs, till his system shuts down. See the importance of Mental Health????So, I personally cannot manage to sit and wait 3 months knowing that perhaps the cells have become immune, if the blood work that he gets to show the tumour markers is continued each month, we will be able to tell if they are multiplying and something can be done before too much damage occurs. I hate that I have to insist on something that seems so common sense, but not going to accept anything less than. I would have felt a bit better if we had spoken to the Oncologist but that does not appear to be happening in the near future , so we continue on...In the twilight zone of Cancer. 

Cancer Care Questions

I should be cleaning my house and collecting eggs, but this has been weighing heavy on my mind since yesterday, so...here I am.

 As I wrote the title, I realized there is not enough time in the world to put down all the questions in regards to Cancer care. It is a very lucrative business (and yes it is a business). Over 40 years ago, I lived through my first experience with Cancer Care, sadly it did not have a positive ending. It was a shock back then, however 40 years later, it is a far bigger shock! One would think ,over time things would have improved greatly, but instead it has appeared to go backwards!

Alright, I will agree that chemo treatments have found ways to decrease the nausea factor greatly, that means an awful lot more pills, and an awful lot more costs. Again, folks, someone is making a shit ton of money, but there is no cure! The business of Cancer is growing enormously, it seems every second person one meets has the disease , either living with it or has had it in the past. This is insane! However, I digress.. I set out to put down my latest questions, as I think that is what this journey has been all about, a continual series of questions without answers, and more specfically any common sense behind them.So here goes my attempt at putting out the most recent insanity.

By now, you will know I was lucky to meet some amazing folks along this journey. They all helped me in different ways, and I hope I have been able to do the same for them. One of them is an amazing woman who has a very rare, and absolutely horrible type of Cancer. She is younger than Chuck, but she is a loving wife, Mother and grandmother who up until June of last year, worked at a job she loved, enjoyed life to the fullest, with friends and family, and like most folks I know, managed a middle class life with mortgage, bills, groceries and the little pleasures that come along with a double income. Now she knew there was something wrong, and did like she was told in all the commercials one sees from the government etc. She was at her Drs. many times, and each time she was told to go home it was just a normal "woman's problem". Thankfully that Dr. went away and she was in to see the replacement Dr. who instantly knew there was something very wrong, and that is when she started her nightmare journey. The first question is simple..perhaps if her Dr. had done their due diligence when she first started going in, she would not be at the point she is right now. Actually that isnt a question, as my experience 40 years ago, began the exact same way, it was a "woman's problem" go home and douche with yoghurt (sorry, but this was what my Mother was told when she began her journey with Uterine Cancer). Careless is the word that comes to mind in these cases. One wonders if these Drs. ever stop to think they made serious mistakes? One hopes they do, and in the future they will take better care, but I have my doubts.

So lets catch back up with my friend. We met when she was in the Kordayban Lodge, beginning her 7.5 weeks of radiation and chemo. Now she had been off to Vancouver for surgery, off to Kelowna for scans etc. before getting to the lodge. Her family had been by her side through that. Her husband had taken time off from his job, she had left her job, they had expenses throughout this period, and as I have learned, one can never catch up in Canada after losing pay cheques. So she finished her treatments the first week of January, and went home until the 27th of Feb. when they travelled back to PG for a Dr. appt. Please keep in mind, like Chuck, no CTscan, nothing after this rigorous  course of treatment. She gets to her appt. her Dr. does an internal, and informs her the treatment did nothing, she is also told that her case was transfered to Vancouver the week before her appointment!! The Dr. told her she was to make an appointment with her OBGYN for a biopsy, and to have him arrange a CTscan????? WTF! So, from a simple internal check, this person knew that all the radiation and chemo had not done anything, they must have Superman xray powers, or something. My friend knew the treatment had improved her life, she was able to do far more after recovery than before, so one can imagine the disappointment, but here is the next question..how did the Dr. know all of this the week before the appointment when she sent the case off to Vancouver? Why did this Dr. not have a Scan done before the appointment? Why did she expect the OBGYN to do things she should have done, after the fact?Two days after her Dr. appointment she recieved a call from this Dr. informing her that she needed to get to Vancouver ASAP , they would be setting up a PET scan in Kelowna, possibly doing surgery right away and handing my friend a really devastating prognosis, out of the blue. Imagine that folks...just take the big C away from all of this, a call telling you that you have to drop everything right now, find a way to get to Vancouver, and normal life will cease for yourself and your family.

 Now, my friend went though her treatments on her own, she insisted her husband continue to work, because bills do not stop for Cancer. She was close enough to PG that she would go home on weekends, but holy cow, she went through all the shit this treatment causes alone mon to Friday, for 7.5 weeks. Now this family must make a decision to attempt to struggle without an income, and pay expenses in Vancouver,and risk losing everything they have worked for, or my friend must go it alone.What would you do? No one comes out of the wood work when a family is struggling with this devastation from the Cancer society, arranging for a way to assist. Truth be told, folks are left on their own to try and figure out a way to suvive. Both myself and my friend have folks who have stepped up to do what they can to help, and trust me, that is so appreciated, however, the Cancer "Company" has not been on the phone once.I have no qualms about all the donations going to research, trust me, the greatest thing would be to have a cure for this, however, I know this is not the facts. There are some folks who are getting very wealthy off the misery of others. Yes there is places for folks who have to leave their homes to get treatment in the cities, and they are indeed free,but truth is, these free places are often subsidized by businesses or private citizens, or fund raising by citizens,  not the Cancer Society. I think you will find a large percentage of folks who have lost loved ones to this disease, will state they do NOT support the Cancer Society because like us, they never had any communication with them! Now that said, I will go on to question the government..

.Little play by play, average working class British Columbian (yes I know this is a politically incorrect term) under the age of 65, working pay cheque to pay cheque, because that is now the reality in our country, gets diagnosed with Cancer. Put on medication that plays havoc with their system, so they have no energy, and often in a fog, no way they can work. Their only option is 26 weeks of what our government calls Medical EI. So suddenly, instead of 5K a month usual pay, give or take (mostly take) a family is suppose to manage on 2200 a month. Now this illness often last far beyond 26 weeks, especially the way the medical system wait lists are insane, so suddenly the 26 weeks are up, and lo and behold the stipend disappears. Next option CPP disability, wait for it, that is a whopping $1300 a month! Absolutely impossible to survive on, so clearly Welfare is the only other way a person can survive. Right now, our country is sending sh*t tons of money to other countries, and tax paying Canadian Cancer patients are suppose to manage on poverty level government assistance? Oh Oh, I have gone off on another tangent, sorry. So many questions!

Here is my last one for today, how is my friend suppose to do what is necessary to fight her battle? Everyone posts different resources for bits and pieces of assistance for her, but like so many fighting the Cancer battle, along with the stress of the disease, the overwhelming stress of paying for day to day living lies heavy, and suddenly having to find a way to add travel and loss of income seems insurmountable.Our country is touting M.A.I.D to those with disabilities, mental illness, loss of hope, what is there that they are offering to those who are hanging onto hope? Perhaps the Cancer business can come up with some resource to help those British Columbians caught in this nightmare. I would be first up at the plate to volunteer for that saving grace

So hey, if you have any answers to any of my questions , send me a message. Life is no longer full of simple questions like what to mae for supper, now they are the ones of how to fight the battle of your lifetime!

A "Smaller" Crime of Cancer Care

Howdy all! As you see the title is different tonight. Bear with me, because in the past 12 hrs. I have managed to enter pretty much every emotion known to human kind (or people kind). 

  Living in a world dominated by the big C word, is pretty much the hardest thing I have experienced, sadly more than once. It is an absolute rollercoaster of emotions, of which one has little control. Most of the time fear is front and center, but sadness, is a close second, depression is fairly constant,  concern , self pity, exhaustion, all ride continually on ones shoulders. Those emotions can only be held in place with Hope and faith, and sadly very little trust. Hope, however, is the most powerful positive emotion. It is absolutely necessary to make one's way through this horrific train wreck, far too many of us find ourselves. Hope is what allows folks to grab onto a tiny glimmer that they pray will lead onto sunlight. Hope is all that allows one to get through the times of fear, and sadness, it is all powerful when everything else has been stripped away. 

I have survived all these months with that tiny glimmer, some days it is really hard to find, but I dig through, and there it is, buried under a pile of sh*t that often is so deep it takes all day to find it, but it is always there! I promise, if you ask anyone going through this journey, they will tell you, it is impossible without Hope.

I remember my sister in law telling me how much she hated her video calls with her oncologist. How she would finish the call, and feel wiped out, worn out, without any hope. Well this seems to be the goal of some. 

3 weeks ago I started getting this uneasy take during the Dr. Appointment. It was full of the reality, stage 4 , no cure, just doing this to help with quality of life for as long as they can..blah, blah, blah. O.K . we have had the reality check, we read Dr. Padma's little blurb on the consultation paper she claimed she had informed us the prognosis was poor and it was palliative care etc etc. We then had a meeting with a nurse practioner, who explained there is no cure, but it can indeed be treated. We had a face to face with an oncologist who specialized in Chemo care, who also explained not curable, but there is a specific treatment that focuses on the type of cancer cells Chuck has, and if that didnt do the job there were many other options. When I asked for a prognosis, he refused to offer one, as he stated until Chuck had treatment and he was able to see how it went, he could not say what side of the Spectrum Chuck was on, so even with his decades of experience, he was not going to offer a prognosis. Well that talk and long chat answering all sorts of questions for us, had us walk out the door with Hope, lots of it!! Also a chat with the director of the Northern Cancer Clinic stated more of the same, palliative did not mean end of life when used in this case, it was palliative to shrink the tumour that was causing him difficulty eating, so he could continue on in other treatments.

Todays appointment attempted to remove all of that Hope, his tumour causing cells (cant remember the medical term, but these are the nasty cancer cells that come off of his tumour and attempt to find new places to settle and grow) had at his last blood test 4 weeks ago, dropped from 240 to 54!!! Not a Dr. but this was clearly an enormous drop, and huge positive. OOOps...don't you dare grow that hope, this will not continue, at some point the treatment will stop killing them off, and they will settle throughout his system and they will not be able to kill them off!!! Holy crap folks, is it time to give up? This is NOT what folks attempting to stay positive need to be told after a drop like this, we need to hear that maybe today's blood work will show another drop, because that is Hope. Clearly this may be a sign on where he is going to head on that Spectrum? 

So, it has taken me into the evening to decide the appointment today was a total waste of our time and energy. Everything we heard beyond a certain point, has now been thrown to the wind. The treatment is clearly doing a damn good job, he feels pretty good, is eating normally, has put on weight, and now is able to work a part time job that gives him moral support. We do NOT need a monthly dose of negativity, dealing with a disease that feeds on the negative.

To stay positive is not easy, to give up and focus on the dark side is possibily the ultimate worst thing to do in this battle. We are in this to win, and today our tiny glimmer got a lot brighter. We will NOT let the words we heard today dull that shine. We know there are folks surrounding us with their prayers and positive thoughts and we are standing in the middle watching the shine. Thank you all, we are walking towards the sunshine, slowly but surely.

Prince George Serial Killer Part 10

 The last blog I wrote, I wondered, is the title still fitting? Well, I do believe the title will stay, throughout this journey, because for the most part, the 11 weeks sitting at home, waiting for Prince George Cancer Clinic Radiology, to pick up a file marked URGENThas massive bearing on where we are today.  Sure we were told by a medical Dr. that a couple of months was not really going to impact anything..however, with a type of cancer cell that multiplies faster than most, do you really believe that? From the outset, it has been clear the use of the word Palliative is front and center, but it is also clear, I for one really did not understand the "facts". 

Like most folks, I have heard the word remission more than once. I based the uncurable diagnosis on the understanding that remission meant the cancer cells had been killed off, but there is always a chance they will bounce back again, and start causing havoc. So, in my tiny little brain, this was the goal for us. Well that is NOT what we heard yesterday, we were told remission is NOT a possibility, and Chemo would be the way of life upwards and onwards, until the cells mutated again and again, and become resistant to whatever cocktail they have on the menu. 

At first, I was pretty upset hearing this, however, as we have been down a couple of meters on the road, I had to stop and take heed. See, when statements like quality of life are used, and hope of remission is wiped away, a huge chunk of Hope disappears. We must not lose that Hope, strange things do happen, and cancer treatments often are gauged by something called a Spectrum. Some Cancer patients end up on one side of this Spectrum, and others are way over in the good side, that goes on for years, decades, and are still going, That is where we are heading! However, to get to that side of the Spectrum, we also have to do our due diligence. That folks, is the very hard part! We are dealing with a system that is so freaking broken, it is deadly! 

 I am certainly not the brightest bulb in the pack, I have little understanding of medical procedures, but thankfully, in this day and age, I have Google.Because of this access to knowledge, I am puddling along attempting to ensure the proper procedures are followed, according to scientific facts. Trust and faith are very lacking since we began this journey, in fact, they have all but disappeared entering this area of miscommunication, and impersonality. As you have followed along, I have mentioned some of the absolute f*ck ups, and yes, still they continue! So we have to be on our toes, and we also have to open our mouths, to question. Thankfully at this time, we have been blessed to have folks on the team who are open to questions, and do have a touch of empathy, and really seem to listen. But....trust, once lost is a very hard thing to get back, and I am still very leery.

 Next week Chuck starts on cycle 3, as stated each cycle lasts 3 weeks. Now, this is when we go back to Prince George, way back at the beginning of December when he finished his 10 treatments of radiation. We finally had a meeting with the medical Oncologist. Now folks this is a part of the system I believe needs to change! The medical Oncologist is the #1 person in charge of keeping Cancer folks alive. This person should be the first one a patient sees, not next in line to the Radiation Oncologist who begins a consultation with the statement they cannot tell you anything, and that you will have to wait until they are done with whatever they decide is best for you, and then you will wait to recover from their treatment and then hear your prognosis from your medical Team. Why is that team not there right from the moment you enter this nightmare? Why is everyone who is fighting this battle with you, not at the consultation? Why is the system so full of third parties that important sh*t is missed? Lack of communication between medical professionals and patients is one thing, but total lack of communication between medical professionals and each other, and of course their staff, is open to enormous cracks! Those cracks can mean a matter of life and death, and a simple forgotten missed procedure can cause a ton of grief, and that, folks, is why I rely on searching the internet, and reading up on medical procedures from all over the globe, ensuring that things are proceeding properly.

 When we had the meeting with the medical Oncologist, and I state once again, this man was efficient, professional, and clearly very experienced, he was also the first person who even checked Chuck since the beginning of this trip back in September! He informed us that Chuck would be starting with 9 cycles of chemo, yes, 9 sets of 3 weeks. Then he said they would see how that went and go on from there, he told us this was just one type of treatment and they had many others, as well things are being discovered all the time, and of course brought up the Spectrum, so we left him with Hope. It is clear this Oncologist was on the ball, as we began to get phonecalls on what tests etc Chuck had to get even on the drive home. My internet search had mentioned ,how often it is 6 weeks beyond radiation a patient starts Chemo, well again, surprise! Chuck started chemo about 2 weeks after radiation. Now, this was when the first question arose, at the meeting with the Dr. we were told he would have 6 cycles....Of course, I opened my mouth and said we were told 9. Apparently our government only allows 6, and then things must be reviewed?? O.K. guess we will cross that bridge when we get to it. But of course alarm bells start ringing. I am on my toes. 

What was really bothering me was the fact that not once had there been a CT scan, other than the one he had in Terrace on Sept 27th when we were given the diagnosis. What had the radiation done? Oh, we knew it had done a lot, as swallowing was not an issue any longer, and eating had become a pleasure instead of a pain, but, what was happening?

 So days before each cycle, Chuck must get a morning blood test at our hospital, this will give his blood count , white cells, red cells, etc etc. This is when the Cancer Dr. decides if he is good to go for the Chemo, and the day after, he has a meeting with the Dr. to discuss everything. At the meeting before his second cycle, I asked the question that had been bothering me. "When is he going to get a CT scan"? Papers flipping through his file, Oh, the last one was in September...I will put in for another, they will call you soon. Soon was this last Monday, he was to be there on the Wednesday. Now, folks, CTscans are not normally arranged and appointed 2 days before they happen, so my tiny brain wondered if this was forgotten and a last minute correction..but. that doesn't matter, right? This time he was given dye before the scan, unlike his first one. The Dr. appointment was the next day. This is when I get a little pissy and look back on the 11 weeks sitting at home waiting for the urgent file to be dealt with. First positive results, the tumour has shrunk to less than 1/2 the size, clearly this is why eating is no longer dreaded. But...now he has a nodule on his lung, and more spots on his liver, when did this happen? The two nodes that we knew about had also shrunk, also a positive, but when the F*ck did he get a nodule in his lung? Thing is, the fact that he did not have a CTscan since September we did not have a baseline to judge progress with. We don't know what the 2 cycles of Chemo did after the 10 radiation treatments, so heading into cycle 3 next week, we are back at the starting gate! This is NOT acceptable!! Clearly he ended up in yet another huge crack in the system, no communication is the only cause of something so important. What would have happened if I didn't mention this? I am not faulting anyone, because through all the different levels who knows who was suppose to deal with this? Trust and faith is once again on very wobbly legs. 

Sometime in the middle of this next cycle we will likely get a phone call from the medical Oncologist, who also will have seen the CTscan and now know this is the baseline after 2 full cycles. Sh*t like this is why I started this blog, the system is sorely broken, too many important things are missed because NO ONE communicates with anyone else, folks doing a job that is , once again, a matter of life or death, are simply doing their own bit part and walking away, leaving the rest to someone else. Playing God without the consideration or compassion. Unlike others I have spoken to, I do not fear reprisals for putting this out to the world, that would be unethical, right? I am totally confident in his Medical Oncologist, and extremely grateful to the ladies that provide his care through the Chemo at the Smithers Cancer clinic. they are an amazing group of nurses, and very professional. Where is the problem? It is certainly not this tiny team of caring and compassionate folks, so the title stands!

Prince george Serial Killer Part 9

 Well, it's me , back again. Once again, feeling a tad uncomfortable putting my life out to the rest of the world. I have to keep telling myself I made a promise to share this journey, in the off chance, it may make someone else's trip down the stage 4 Cancer road not so lonely. Let me state right off the back, it has been a F*cking nightmare that just multiplies daily. The toll on emotions is insane, which translates into a lack of energy, a lack of patience, and a constant burden on one's soul. Oh, we try, if we didn't it would be unbearable, so we can't stop trying. Some days are much harder than others, and more than once, those days come in clumps. Not only do you have this sword dangling over your head, uncurable, cancer cells may develope a resistance to your cocktail of chemo, so we have more than one option (yes, this is the positive, pretty shabby, eh?), but you also have the insanely difficult job of changing absolutely everything that was your normal.

See,now I am able to be beside Chuck throughout all the appointments, and chemo treatments, like I was with the radiation, t because, as an old bag of 67, I reached an age where I could no longer do the usual janitorial jobs I was used to, just can't swing those mops like a decade ago, I ache all the time, from abusing myself from lifting stuff that was beyond my strength, packing vaccums about up and down stairs, etc. So, I retired to collect my shabby a$$ed Old people money (that is a total insult). We were a couple with one bread winner, suddenly there is no more bread, just some crumbs, every 2 weeks , so even with the medical EI and the old age pension, we are learning to live on less than a third of what we had up until September last year. We figured we had another 8-10 years to get ready for this, but surprise! Yes, indeed my first thought when this came down the pike, was "forget the finances, focus on the main issue". I still feel the same way, but trust me, the rest of the world does not give a rat's behind about what if happening in our home, so I have learned to simply block anything else out until it smacks me in the face.However, the point I am trying to stress here, is, on top of dealing with the massive burden of having the deadly disease weighing on your every moment, you also must deal with the stress of having your bread and butter dissolved. Again, not something you ever imagine, and like most Canadians, we certainly did not have a medical fund set aside in case something like this happened, so added emotional hardship,and somehow you have to adjust to not only worrying only about health, you have to worry about how on earth you are going to manage the rest of your life. It is enormous, just saying, because you have absolutely no idea what the next day is going to bring, let alone the next week. In our world, we imagined hey, one day of IV Chemo every 3 weeks, and then simply taking pills for 14 days, and a week off of everything, should be manageable. Perhaps he can find a part time job locally, that will allow him the one day off for Chemo, sounds doable. Hah! Silly us. So far with 2 cycles of the IV chemo, he ended up with a bad reaction on the first that caused us to get a motel room in Smithers, because I was concerned we would have to go back to ER during the night. His first cycle had him totally worn out , lots of sleeping, meals at wierd hours when he felt hungry, short tempered, impatient,and basically just flopped on the couch, with no get up and go. The free week saw an uptake with energy about 2-3 days into it, however 2 of those days were taken up with the blood work and a Dr. appt in Smithers, and then back on the Chemo, to begin his battle again. Second cycle of IV chemo, almost 6 hrs in the chair, and at the very end, another reaction, not near as bad as the first but stressful again. We now realize the thought of him doing much of anything is a done deal, he has 4 more 3 week cycles like this, and after reading over his treatment plan a little more carefully, we see he has 4 cycles of a single IV treatment (one bag instead of 2) after he is done this. Pulling out the calender, that is well into summer. Unless things take an enormous turn, he will run out of medical EI and suddenly we will be living on disability (never imagined). We honestly thought we had a good future plan, we invested in our cattle, our fowl, and had a retirement dream of making a quiet life doing something we loved,now our plan is simply to do what has to be done to stay alive. I know there are times when the silly man feels he is responsible for all of this sh#t, and the worry we all go through daily, how hard must that be? It could be anyone of us, things would be no different, no one is to blame for any of this, if only it was that easy. We just happened to be one of the many who pulled the Cancer card and he  got the leading role, while we are simply the rest of the cast players. The only thing that has helped me through this, is the fact we met some amazing folks at the Kordyban Lodge who pulled the same card, the knowledge that we are not alone in this, was hugely helpful, I guess that is why I decided to continue on with this "journey journal". To know you are a part of a very special group of folks who are so strong, and striving for the exact thing you are, gives you hope when they have good results, or a positive moment. It is so much easier to speak to someone who shares their experiences and offers comfort with yours. This journey is not one that should be taken alone. I have googled for a Canadian chat site for spouses of Cancer patients to seek out support, but so far no luck, so I use my new friend to give me her side of things with questions I have . I would be lost without her, so I will continue to put my personal business out to the world, in case I can do the same for someone else.

Prince George Serial Killer part 8

  Well, surprise! It is still 2023 and I did not expect to sit down with you folks again this year but life has slapped me in the face more than once, so I am continuing on the story of our journey yet again.

  Just a week or so after we got home from radiation, the phone rang. It was the Cancer clinic calling in regards to chemo treatments. They offered him the chance to begin this month or next. Well clearly if we are going to have a fair fight, the sooner we begin the better, so after more than one trip to the lab and a couple of gallons of blood taken, we headed off on the 18th for a consultation with the Cancer Dr. in Smithers and the Chemo team nurse. Very efficient. and the Dr. had been through his file (always a huge relief when you know they take that time to understand their patient). I personally already have my favourite on the team, Loretta, the Chemo nurse is amazing, she went through the whole process, with explanations on possible side effects, promises to take good care of him, and altthough Chemo is a bit of a daunting process, and we of course had a few fears (well a lot), she made us feel confident he was in good hands. One more blood test in Smithers, took a bit longer than usual because it was not on the computer system, since it is not a usual test, basically some sort of genetic test, that is not done on a regular basis, again, feeling pretty good, this means they are going above and beyond the norm.

  Now I am going to go into a part of all of this, that is very personal, but, again, to understand this whole process, this part of it, is something that has to be told. Cancer, a word that strikes fear into everyone, has an enormous impact on the lives it hits. Our world has changed completely. We have gone from a family that lives a fairly "normal" life, to one that we have absolutely no control of. The usual pay day we relied on for decades, is gone! Imagine what that would mean in your world. Bills do not stop, in fact, you are suddenly having to purchase things you didn't need before, feeding tube bandages, mixtures to use, making 3 meals a day, and ensuring they are healthy, learning to have things done to help with delicate immune systems, giving up your time, that you are so used to, because , this is not just a day or so out of your life, it is now the constant in your day. For someone who has worked so hard to provide for his family, suddenly the rug is pulled out from under him. Now he has to rely on others, he can't do much of anything, because his body no longer works efficiently. He is tired all the time,and now, even the cold air is an enemy. his hands are super sensitive, touching something cold is like touching metal in the minuses. Yes, folks this is something we were warned about, Loretta said some folks even have to use gloves to take something out of their freezer,and lo and behold, we now understand. So now he is limited to time out doors, he has to wear gloves to drive! This is someone, who, for the past 20 years, has pretty much worked away from home during the week, now he has to adjust to being home, and unable to do all those jobs he used to plan for when he was home. Catch 22 hey? For us others, it is a constant concern. We want to make sure he is comfortable, and always annoying him with our questions " are you feeling o.k?" "are you cold? do you need anything?" "are you hungry, thirsty?" . Yes, we know we are annoying, but he has now become our whole focus. We have stopped thinking about bills, social activities, anyone, or anything else, and we know it drives him batty, because, this is not how things are suppose to be. Life does not stop because we are living a nightmare, and like everyone else who heads down this road, we were not prepared . It is difficult to explain how many changes we have had to make, but they have been enormous, and somehow we are managing, because if some struggles are all we need to deal with to get through, we are more than capable! It is just very, very hard to lose control, none of us are good at this. The rest of the world continues on, but your world has stopped, put on pause, until you jump through all the hurdles along the way

  So the days up to the point of treatment, are not easy. The fear of the unknown weighs pretty damn heavy. You have heard of others who have traveled this road, and in our case, we have walked besides other loved ones, more than once, so it becomes a worry that hangs there every minute of ones day, and of course, night. Up early the morning of, life is still moving along, right? Animals need care, food and water, dogs need a time out, breakfast must be made, so that he has a full stomach throughout the planned 4.5 hrs of treatment, then there is the long drive in the dark to the hospital in Smithers. It is a tense time, can't be silent so we both concentrate on what is about to happen, so small talk, neither of us speaking of our fears. Did we ever imagine ourselves here? Not really, maybe the thought has come around in passing, but it is not something folks really sit down and discuss, right? 

  In the doors, lady greets us with the required mask and hand sanitizer, honest to goodness, folks, wearing a mask for long periods of time when you are stressed is NOT healthy! Breathing in all your hot air when you are anxious is a lot of extra energy, but..we all know times could be worse, right? It is time. There are a couple of others being treated when we arrive, the team is very up beat, and in goes the IV, first they put some sugar water in while they wait for the medication to be delivered by the pharmacy. Everything is documented and questions are asked to ensure the medication is being given to the right person. Things are checked by the attending nurse, and then double checked by another nurse. We are given coffee, and settle in. We enjoy a strange (remember the circumstances) visit with a friend from back in the day, who is also in for chemo. It kind of breaks the focus for a few, looks like all is going good. In the midst of this, we had to go into a private room to take a phone call from the pharmacist in PG, who talked us through the pills that Chuck is to take twice a day for home chemo, for 2 weeks,after every IV day, it was around this time,things went wonky. He started to sweat big time, his nose started to run, his eyes started to water, and then he started to retch, non stop. IV was stopped, he was given gravol through the IV port, and then benedryl, then a shot to the stomach. Shit!! we were afraid the chemo was not going to be a possibility at that point. Our plans had us finishing Chemo, and then driving onto Burns Lake, where he was suppose to get his echocardiogram. With all the nausea medications, he was toasted. He had lasted until the last 4 tsps. of medication, but the second bag was not a possibility. He was done for the day.Instead of Burns Lake, we ended up in a motel in Smithers for the night.He pretty much passed out for 4 hrs. and woke up to eat something and take the prescribed pill. He complained his fingers were tingling non stop, and his arm .He was not feeling very good at all, but the retching had died down. Next morning, back to the hospital. They had contacted his oncologist who was going to tweak the medication for the next time, and the second medication went in fine and dandy. As we waited Loretta was on the phone, trying to get the echocardiogram re arranged, and she did it! So over and done before lunch, stopped and ate lunch and drove home (he drove). Next day, we were off to Burns Lake. I think we knew the day might be better when we checked the mail on the way, and finally, since October 20th, his last day worked, he got his medical EI! The test in Burns was super quick, we actually had a chance to pick up a few gifts for Christmas, trust me, this is not a Merry time for us, but we need to attempt some season spirit, grabbed some groceries,and finally came home.Most folks who know me, know I seldom leave home. I hate going anywhere, just like to stay in my little comfort zone. This has been so out of character for me. I have been out of town,more in the past 3 months, then the past 5 years. Being home is wonderful and we will all enjoy this peace until Jan.8th when we begin the next cycle.

  I honestly hope all of this writing is of some help to someone else who gets blindsided by this crap. It really does take over absolutely every single aspect of your life, and all you can do is go with the flow, until you reach that glimmering light. We can see it, but it is a long ways away and we indeed have miles to go before it shines bright again. 

  We will arrive at that bright place next year, winter, spring, and then summer once again!