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.