What If's

I have truly stepped way over the line regarding my comfort zone. It has been strangely cathartic putting this out to the world, and since not one moment of this journey has been comforting, I may as well continue to spew my personal feelings to the world.

We have now stepped into the world of Palliative care, strange, isn't it? The very first lie we were told was that palliative does not have the same meaning medically, as it does in the context we thought. As I think back through all of this, I believe we have been on a palliative course right from the beginning. Why do I think that? Well, mostly because. for some reason specific procedures and tests were not allowed to him, and what is even more troubling, these same tests were not allowed for my sister-in-law.  My life today is made up of a million "what if's" that clearly, at this point, do me absolutely  no good!

  Now I must accept what is. I debated a long time with myself, whether I share my "what is" with folks who I do not know, and of course, those who are close, and decided I might as well continue the journey to the end. I have friends and family who have reached the fork in the road where they head in the opposite direction from their loved ones, alone. I have done this too many times before, myself. I know what emptiness lies ahead, and I am so afraid of it, sitting there, just waiting for me. It grows daily as time passes and the distance diminishes, that fear. 

Like those who left before, the choice we have made is to travel these last miles at home. This works for us, we are lucky, we stay in the place of comfort surrounded by all that is familiar, we can chose to have privacy, or company. I have experienced both sides of the choices and I understand how it is better for some to be in a hospital, we made this decision long before we ever came to this place, and so, it shall be. 

I ask myself sometimes if I am being greedy with my time beside the person who has been my constant companion for all of these decades, but truthfully, I don't care if I am. He has been the center of my universe longer than anyone else, and I am going to feel his loss more than any other, so , as difficult as this process has been, and continues to be I embrace it, because many do not get the chance to be beside the one they love right until the last moment.

I have heard dementia called the long goodbye, and I am grateful that he still knows I am with him, but this is our goodbye and it is painful. It is painful to watch someone fade away, some days more than others. Some days are the same as the one before, then you get others that are harder, when you notice fingers, and legs suddenly so very thin, not the body that only weeks before, was unchanged. You get days when they are awake and having conversations and suddenly the voice becomes quieter, and they say less and less, and those days, once they begin, become always. You get a boost when your loved one seems to get the will to try, and they are awake in the morning, and have a coffee at the table with you, and they eat their meals, and you have hope, just maybe the Dr. was wrong, and maybe the care folks who have explained they will teach you how to deal with pain medication given by IV when the time comes, they were wrong. See even though I accepted the future, as difficult as that was, I accept the denial far easier, but that is a mistake that causes more pain when reality hits hard. I have been hit hard many times in the past weeks, no matter, as I said, I claimed to accept the facts. Human nature grabs at hope, although common sense knows it is fruitless. 

Ours has been far quicker than most. One minute we were on the upswing, things were looking pretty good,and the next devastation. The words of the Oncologist are blurred right now. I can't remember if she told us one month without chemo, or 2 months, and 3 if he chose chemo. The "what ifs" are seldom on my mind now, because again, they no longer make a lick of difference, they never happened, and without a doubt if they had, our lives would be much different right now,not just our lives, but those of others who have recently been thrown into the cess pit of what is called Cancer Care in British Columbia. 

There is much available in the line of Palliative care in British Columbia, all sorts of assistance comes out at you when you reach the point of no return. We have a wonderful group of care nurses who call every single day and pop by to deliver med's etc. So much different than when one is actually going through treatment, or waiting for treatment, when you sit by the phone day after day, week after week, waiting for some communication. One can only assume from this, that, British Columbia Cancer Care is lacking a great deal. When folks wait 3 months after a CTscan after warning signals of returning cancer scream out, when folks diagnosed with an enormous stage 4 tumour in their esophagus that is causing them the inability to swallow even water, wait 11 weeks for radiation, when folks go 6 months without a single phone call from the Oncologist, when folks are suddenly left without an Oncologist, when folks have to walk down stairs in the hospital  to ER to be diagnosed with 3 large Brain tumours, after their IV appointment in the Cancer Clinic, when CTscans are missed completely because files were not read and no one in the "Team" thought to look at page 1! When stage 4 Cancer patients apparently do not qualify for PETscans, or scans that go beyond the original cancer area..my sister in law asked for a PETscan, in fact she was trying to get one that she was willing to pay for, we tried that as well, but surprise, even if you pay for it, you need a Dr. referral. Oh, and that promise of everyone being entitled to a second opinion, Hah! a battle we had to give up on, as the replacement Oncologist gave us the one and only prognosis we ever got! Getting a second opinion is a lost cause. 

 However, we have all sorts of equipment here to make dying a bit more convenient, we have all the medication one could imagine at our fingertips, we have , as I said, a group of wonderful caring compassionate folks a phonecall away, we have instant Dr. communication through the care folks, everything set up neat and tidy to run smoothly as the end nears. The end is the only organized part of this whole journey, the beginning and middle are just a cluster F*ck! The part that is controlled by the British Columbia Cancer Care organization that holds all power over a Cancer patient is a nightmare and I won't even hazard a guess as to how many folks who walked into this insane asylum with the ability to have many years added to their lives through proper treatment and care, ended up where we are today, I personally know 5 of them, and although I am not a medical specialist, each one of these people fell through cracks that took away all of their "what ifs"! 

My days now are not to be wished on my worst enemy. The days of the most important person in my life, are absolutely heartbreaking to share. I say I accept the future, perhaps that is wrong, I acknowledge what is to come, and have no choice, and no control, I have been here before, and each time I prayed I never had to watch a loved one fade away again,it sucks the life out of those who care for the dying, it changes a person, it is not beautiful, and peaceful. It is filled with pain, suffering, heartache, helplessness, frustration, and anger.

I had hoped as I wrote this, I could put down the words that explain what this is like, as I read it over, I didn't manage to do this. I think perhaps it is impossible to do so. It is unimaginable, and I hope that no one else has to travel this path and reach that fork, but I know some will. I know that my life will never be the same again, and I will never be the same.I have already made up my mind, my bubble will shrink even more than it has. I do not have the energy to deal with those who are not close, I have become somewhat anti-social throughout the past 10 years, and found I enjoy a small circle far more than one I need to expend energy on. I am losing a huge piece of my life which will not be filled by others, so my plan is to keep those important to me close, and shut the door to all else. I am so done with drama it has stuck it's head into this nightmare one too many times. MY family, and MY friends, who I know I can reach out to, those who do not judge, and have offered, not asked, throughout this know I love and appreciate each and everyone of you! 

Harsh Reality

Not really sure if I am ready to share this part of the journey, but I will try it out, and see.

We traveled to Prince George for our appointment with his new Oncologist. This was a first time meeting, so we had no clue what the next treatment was going to be. As usual, we were taken into a room by a nurse, and he had his blood pressure taken and his weight, then we waited for the Oncologist. Lots of questions, about his energy level and activity, of which both were seriously lacking. She spoke about putting him back on the same chemo as before, as she suspected the brain cancer began when his chemo stopped (this is all an assumption, as we all know, he never once had a body scan, or even a head CT). She also mentioned a different course of chemo, however....because of his energy level he would be classed as a 3 and needed to be a 1 to qualify for this chemo, so perhaps if he took a lower dose of the first chemo, he might get to a 1. I mentioned all of the new treatments I had researched in regards to brain cancer, each one she said he did not qualify for. I now regret not asking WHY he didn't qualify. Once again, we had to listen to the fact that many mistakes had been made throughout this trip into hell. I have to say, we know mistakes were made, we know right from the very start he fell through cracks which just continued throughout the year. The admissions of mistakes do absolutely nothing to help, in fact, they hurt each and every time we are reminded of them. See, we cannot reverse what is happening to try again without mistakes. Those enormous cracks have denied him the ability to a fair fight against this horror. Those enormous cracks took my sister in law away from her family. 

If cracks in a system mean a little more hardship, or perhaps a day without internet, or cell phone, one can easily survive, and the effect is over and done with. The cracks in the Cancer Agency, are far from survivable. Those cracks are absolutely deadly, wait times, files not read, lack of staff, lack of care, lack of communication, all cause death!! To cause death to another through carelessness, is Man slaughter, and it carries a prison sentence.the crime of killing a human being without malice aforethought, or otherwise in circumstances not amounting to murder.. The Northern Cancer Agency does this on a regular basis. They often use the excuse of lack of staff, well they are responsible to the people of our  area to provide us quality care, I heard their advertisement on the radio just the other day, claiming they are giving this to us. That is a crock of Sh*T!! They do NOT have the staff to cover the number of folks needing this agency, they do not have a system of communication that is without faults that cause gaps, which in turn, cause harm, they do not have the ability to offer the newest treatments, and they don't even keep proper medical records. I say the last, because I have requested all of Chuck's medical records, and if what I recieved is indeed all of it, there are massive gaps not recorded. Proof of this was when I informed his Cancer Dr. the Oncologist had told us if the first chemo did not work, there were 2-3 other treatments he could try. She had no clue about this, and I can understand, because there was absolutely NO record of our meeting with the Oncologist to be found in the ones I was given. In fact, the only records of anything from the Oncologist was the cc'd CTscan reports, and one paper stating his concern over the swollen lymph nodes stating they would simply wait 3 more months for another CTscan to see if that showed anything!!! The headaches began long before the 3 month waiting period, no surprise in some respects, no cancer showed in the continual procedure of taking the same CTscan over and over, and not even thinking to perhaps do a body scan to find out where the suspected spread was. See, they admitted they suspected a new cancer, so Why TF didn't they look for it? OOps. perhaps this was not within the guidelines..well, it was't within the guidelines apparently, so I guess the guidelines were to sit back and wait 3 months for an agressive cancer to settle in, and have an ER Dr. call for a CTscan to find it was really settled in, so much so, we received our very first prognosis on Oct. 2nd. With the smaller dose of the same chemo..maybe 2 months!! Absolutely NOTHING can be done at this point beyond a few months with chemo.

So, the choice was, maybe a couple of months dealing with chemo again, or..hoping the radiation had done some good (it is impossible to tell from scans exactly what the radiation has done at this point) and taking a gamble. 

This was a choice that our family left to him, this is not something anyone else has the right to speak of. We respect his wishes and he has chosen to go without chemo. 

We have a complaint in with the institutions responsible. It has not been easy to push this to where it belongs. We have a trusted friend who is doing this for us, because like most folks who are dealing with Stage 4 cancer, our time and energy is completely taken up. I have to wonder if this is why nothing changes, folks are so caught up in this mess they are unable to deal with red tape, and there is a ton of it! Maybe they think people will be so overwhelmed with grief they will accept the disgraceful Health Care system in British Columbia? I am focused at this point in time with the man I love, however, I also know, no matter what the future will bring, I have another fight ahead, that will become my life, and that will be ensuring no one else has to worry about the mistakes, and cracks while battling Cancer. 

Communication Break Down

Ahhh...I had hoped I would not be writing again, until after the Oncologist meeting Oct. 2nd. but..here I am. 

No, things have not been easy. Chuck has been medicated heavily since the radiation, and sleeps most of the time. He has been headache free, until yesterday. Started his day late, I made him a usual breakfast of cream of wheat with peaches, and toast, and a cup of coffee, plus a couple of sunny side up eggs. His appetite has been pretty good, likely helped by the steroids. I knew something was off when he just pecked at things, he also is taking what he calls Happy Juice that provides gut stability and energy. Barely swallowed a few mouthfuls. Then he started vomiting heavily . That was very wearing for someone who is weak to begin with, and he was back in bed for hours. I gave him the medication he had been prescribed at the beginning of this for nausea, he had not needed this up until this point. 

Now I am always researching, so I went in to see all the side effects of the steroids he was on, including withdrawal symptoms. Headaches, fatigue, mood change, taste change, vomiting, all listed. I went into this further, clearly been on them for over 3 weeks is more involved, more side effects as what this does is provide cortisone , to help with inflammation, but while doing this, one's adrenal gland stops producing it's own cortisol, we all need it just specific levels, so when your body is getting it "artificially" your gland just takes a holiday. Clearly his system is out of whack and it needs to reset.

Now I was concerned as he did attempt to eat something later last night, it went down, but came right back up as soon as he laid down. 9PM is a little late ,plus being a Saturday ER was the only option, but, wait....There was the nurses' Hotline, you know that number each and every phone call to a Northern Health clinic suggests one calls with questions before going to the ER. I gave that a try, we were informed the wait time would be approx. 1 hr. Hey, I was up for that to get some sort of answer, 1 hr. passes, 2 hrs. pass, ahh 3 hrs later I finally have someone on the phone. I kind of knew what reply I would get, as this is a nurse answering, and not a Dr. and I was right, she suggested I call 911 and have him taken to ER. Perhaps instead of RN's answering these numbers, a Nurse Practitioner would be a better idea? They are not as limited on issues as an RN, and I do believe in this screwed up system, our Health care folks should utilize practitioners a whole lot more. I digress...I woke the poor man up out of a very sound sleep at midnight, to tell him what I was told. He was wide awake and told me we could wait until morning. He knows himself better than me, so I agreed.

Much better this morning, however still weak and extremely tired, he had a breakfast of Cream of wheat and toast, and off we went to our local ER. 

The waiting room was pretty full, however when I registered him and explained he was a Cancer patient, he was immediately given a bed because he is immunocompromised. All good, my youngest and I thought, that was until the nurse decided to do up her chart. Now, it is very apparent he is tired and weak, and that folks is why I go everywhere with him, as I am his advocate. This is the first lesson one learns in the Health Care system in our province, I am not a medical professional, I am not a legal professional, however, my job is to make sure he gets the care he deserves, as well, I give him his medication, and keep track of what is going on. Instantly she starts on his chemo , explaining vomiting and lack of energy are common.That is when I spoke up, trying to explain to her he has not been on Chemo since May..the reply I got made me sit back in shock...I was told, " I am speaking to him, he is an adult, and he knows best what is bothering him. The Dr. will see everything when she opens his chart,"I am not kidding folks!! So I listened to him tell her stuff that was confusing at best, but hey, she clearly knew better. She went on and on about his cane..WTF has that got anything to do with why he was there.."did you get it from ER?" "where did you get the cane?" My daughter and I just kept rolling our eyes, and she kept looking at us doing it. I had the medication names written down, I had the date of the radiation written down, I had the medication I had given him when he was nauseous written down, she was not in the least interested. When she was done speaking with him, she did ask him if any of his family members had something to add..I simply told her "not at this time" why bother???This was a prime example of what is wrong, this person did not want to communicate in the best interest of the patient. I had plenty of information I could have given her in his regard, but  she was not open to it at all. 

Now thankfully Dr. Kim was on ER duty. She had absolutely no problem speaking with all 3 of us. I explained the dosage of the steroid and side effects he had , and she took the time to listen, and told us this was normal and not to worry. She said he is doing extremely well under the circumstances and we are just to continue without worry of the withdrawal as it is proceeding as it should. The vomiting was simply something that happens sometimes. Go home, try and ensure he eats and drinks, and wait until we see the Oncologist to see what she decides to do next. 

This nurse assuming his charts will tell the whole story is out of the loop. We have all his medical reports since the beginning of this, they are full of gaps, therefore it is more than likely his chart has some of these gaps as well. She is the reason mistakes happen, because she assumes she knows it all. This is our life, we keep our records of every day, pretty much, we recognize changes quickly, because we are focused on one person. Dr. Kim over the years has clearly learned this, and uses it , rather than trusting a chart alone. 

I am done letting mistakes happen, today I allowed this person to feel she was in control, simply because I knew Dr. Kim would follow. Perhaps this nurse feels it is her job, but it is our life, so I hope she watches the Dr. and learns communication skills are very important in her line of work. 

Please folks, if any of you are on this same road, do not simply stay silent, you know when something does not seem right, speak up. Quality care is what Northern Health claims to offer, we know this is a lie, so our job is to insist on it, even when you get so tired of dealing with the cluster F*cks that happen on a continual basis..they need to be responsible for their lack of care and most importantly their communication gaps that abound in a place that mistakes mean life or death!!

Retraction

 This will be short and sweet. Sometimes I do get things wrong, and as hard as it is to swallow crow, I try and admit my mistakes.

In my previous blog I made mention of an End of life meeting we had for today from Chuck's family Dr.  I stated she seemed excited etc. and apparently had all sort of goodies to offer for End of life. I have to retract my comments that were actually made in a rather nasty frame of mind I have been dealing with for some time. I was actually terrified of this meeting, as I think most of you will understand. My emotions are pretty raw and there is very little covering them at this time, and I made a mistake of directing my anger, stress, and frustration unfairly.

The meeting was rather pleasant. Our youngest came with us, more in support of myself than wanting to be a part of this, and it was appreciated. The Dr. actually did have something to offer us, if NEEDED, because of the way the wheels work in cases such as we find ourselves in, it is best defence to starts things in motion before, or if , they will be needed. There is palliative care offered, just a nurse who specializes in these cases, that will pop out (after notifying us of a visit) and check in to see if we are in need of anything medically. This nurse will have direct communication with the Dr. so if pain meds are necessary they will inform her, etc etc. This is great, because where we live, often an appointment will be a month, if not months after a request, so huge bonus! 

Talking about such a possibility is incredibly difficult, but we have been touched too many times by Cancer not to know it is necessary. We do speak, not alot, but we have covered what we feel are the main things, in fact it has offered me the ability to make my wishes known, as well. Now we are done! Sadly legal stuff is a part of this, and we still have a few things to get in order, but we have been procrastinating for decades in this regard, probably like many others. It is time to get off our butts and do what has to be done, so we can simply focus on extending life which is the road we have decided to take.

Today I realized that writing all of this down for everyone and their dog to read, is a hundred times easier than speaking about it. So I guess I am grateful I made this decision, as this part of Cancer is a reality and a big part of the journey. I am actually somewhat relieved making my wishes known, as I have aged, the fear of spending my last days in some long term care home alone is now not a worry. Funny, although not faced with a dreadful disease,I think many of us (oldies) do give thoughts to this, we just don't speak it out loud. We've just sort of been backed into a corner so we can't really ignore it. One more thing that we have ticked off the to-do list. 

So again, to this Dr. who today showed concern, and compassion, I apologize. It was actually a pleasure to speak with someone professional who cared, something very lacking in this journey!

The Swiss Cheese Cancer Care Syndrome

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

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

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

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

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

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

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

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

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

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

Cancer disillusion

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

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

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

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

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

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

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

Cancer Rollercoaster

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

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

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

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

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

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

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