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.