The Business of Cancer

I did not want to be back so soon, I certainly did not want to fall into the pit of despair, and,  if I didn't feel the overwhelming need to put this down fresh as only hours ago, I would not be here.

Now you remember, it was only Tuesday, 2 days ago, we had our Dr. appointment. Concern about the swollen lymph nodes was the main focus, along with the "any trouble swallowing"question that had me asking why it was asked. Apparently the last CT showed some swelling in the esophagus, but they were assuming that was scar tissue. Again folks, it is exhausting grabbing onto every word spoken, to ensure what is being said is understood. We were told they were simply going to continue on with the same treatment, until such time as he got another Oncologist, no time mentioned when that would be, however because of the swollen nodes, it may be time to try another medication, perhaps this one was not working?

Well here we are on Thursday, did I mention he has had some pretty harsh headaches lately? Today the head ache was bad. Years ago he had a sub dural bleed that was pretty serious, he had to have neurosurgery to drill 2 holes in his skull , the headaches were as bad as they had been when this happened. I tried to get him in to see his family Dr. sadly, he would have to wait until October for that, even after speaking to the assistant, it was suggested he go to the ER. He wasn't having that. So off to the treatment in Smithers. Now folks, this is when I wondered WTF was going on. 

The nurse did the regular questions (been through 12 treatments before this) but once again "any problems swallowing?" So I tell her, his esophagus has been cleared of cancer he swallows fine and dandy. Hummm..she answers that is NOT what Dr. Saltzman had in his notes, the esophagus is not cancer free. I was pretty touchy today, so I blurted out we would not know what was in his notes as we saw him once in December, and he never bothered to call, zoom or even put his notes in the papers we requested from Northern Health, we were told different!We were told his liver is cancer free as well!!Again sometimes I get ticked, and this ticked me off. If that was true, then someone has been lying to us all along, and we know it was certainly not the surgeon who did the bloody biopsies, then she proceeds to ask Chuck if he needs a counciller to speak with, the Cancer Clinic in PG offers personal councilling.Of course Chuck tells her, I am the one who needs someone to speak with about all of this, so she gets me a card, now we are 11 months into this, why the offer?. He tells her about his headaches, she suggest we head down to ER after the treatment. FYI because I am sure you folks do not know this, The Cancer Clinic does not do anything beyond deal with the Cancer issue, any other issues must be dealt with by Family Drs. or ERs, totally separate and apart. I can tell his head is really bothering him, so once the treatment is done, down stairs we go to ER. 

As far as wait times go, it moved very quickly. He was seen by the ER Dr. who was very nice, he mentioned the head aches, mentioned the previous bleed, CTscan was arranged and done. All we had to do was wait for the report. 

Now I have shared all our private shit on here, against my nature and his, but I did it in the hopes that it may help others, and maybe , just maybe somehow get out to the world, how disgusting the whole system is. It is simply a business, money is poured into it, folks get the feel good feeling when they donate, numbers of donations are put up for the province to see, and no one really knows where all that money goes. As I said last time, Big Pharma is rolling in mega billions with the business of Cancer, CEO's are making major dollars running "charities" yes research is funded, but Pharma funds most research. Those folks who are suppose to be keeping an eye on your case only have a minimum amount of time for you, so....things just slip through the massive cracks, huge wait times allow cancer to grow, and if it is a fast growing one, weeks can make a huge difference, and we know that, big time. Procedures are missed, holidays mean treatment stops, Staff shortgages mean wait times. Treatments are doled out over periods of months and months, with checks continuing on as limited as possible. Chuck's checks are every 3 months a CTscan, well, today we realized they simply scan the same area, over and over again, not checking beyond the original problem area with Stage 4 Cancer, (that means it is moving around, folks! )This same old routine is a huge mistake, and today we found out how huge it can be. 

The report came back, and it was beyond what we ever imagined. Chuck now has cancer in his brain!! Not one CT scan of his head in almost a year, not one body scan, not one MRI, not one PETscan, and now, not one, but multiple metastasis.. 

So..we have an ER Dr. having to give us this absolutely devastating news, I pretty much lost it in the ER, and sadly took it out on someone who had done their job properly, I ranted about the Cancer Clinic and I was loud, I ranted the fact that in all this time, those people never looked beyond his chest area, I had to walk out of the room because I was so livid. I did return and apologize to the Dr. and the nurse, I told them I knew this was not on them. The Dr, had checked his file during this time, to see if they had ever done the head CT, and they had not. Now, we go right back into the nightmare of the Cancer Agency, the results are sent by the ER Dr. to PG, and she hopes that she will be put in touch with the Oncology department (remember he does NOT have an Oncologist) and we will once again have to wait until they contact us, remember 11 weeks last time! This agency is criminal, as I said before they murder people. They weld all the power over this disease, it has been given to them, ordinary Family Drs. ER Drs, folks who attempt to cure, have no part in this. It is a medical hierarchy with inadequate staff, and piss poor service. The longer you wait (a file marked urgent sits for 11 weeks) the more time that deadly cancer grows. 

I am hanging onto my anger, it has only been a short time since I watched my sister in law fall through the Cancer Care cracks, and lost her, now those cracks are swallowing another, and we have absolutely no control over the insanity that surrounds this system. This power has got to be taken from them, they are not capable of doing their business, they remove certain procedures from specific stages of the disease, not allowing all to have the same, giving them the same chances. They play God, and answer to no one, leaving grief in their wake. These people must be held to account because they are indeed killing people, perhaps not with weapons, but definitely with absolute lack of care and consideration. I have to make this my focus, I abhor the thought of other  families suffering through this nightmare . 

Sadly the ER Dr. believes a specialist will call us tomorrow, I have very strong doubts this will happen. But maybe I am wrong? 

Cuckoo's Nest

Well, as promised, I am keeping the world up to date on the latest happening, along our journey through British Columbia's Cancer system. I am somewhat grateful I decided to make this public, as some days I simply cannot figure out WTF is going on! Now is one of those times.

First, let me tell you all, we have decided to grab hold of anything and everything out there offering any possibility of destroying cancer cells. Both of us spend hours on-line researching and checking out Mother Nature's medicines, along with, yes, the famous "Horse" medication. At this point Chuckie has his very own pharmacy to swallow down capsules, tinctures, etc. No, we are not stopping his actual medication, but check to see if any of the other stuff counteracts with the IV medication he is given every 3 weeks. 

The past few months, we have been questioning his diagnosis, and, of course this whole process, which has pretty much baffled us. Since I have let you all follow this from the beginning, perhaps you can offer us some answers, as something so life altering should come with specifics, and one would certainly hope due care and consideration. 

So, as you will remember, in September last year (yes, it is almost a year, but seems like forever) Chuck was diagnosed with an enormous tumour in his esophagus, so big, he was unable to swallow without water to assist food down. We had no doubt this was indeed cancer, as his surgeon did biopsies, along with a CTscan. Please keep this infamous CTscan in mind as I continue. The Ctscan also showed other spots , some on his liver, some on his back, some along his lower side. This was classed as Stage 4 esophageal cancer. Scary, yes, but as I have mentioned before , the surgeon who explained all of this to us, offered us the statement, Chuck had a very long road ahead of him. When speaking about Cancer, a very long road, actually sounds pretty positive, he spoke of radiation to shrink the massive tumour, and surgery to remove it, and then of course, Chemo afterwards. 

Following my blog, you will remember the length of time it took to begin any course of treatment,  late November he started, 10 days radiation, and December he began Chemo. We had a meeting with the Oncologist in December in PG before starting chemo cycles in Smithers, we were told this Oncologist would call us 1/2 way through the cycles. 

In March I became very concerned , as no one called for a CTscan after the first in September, it became clear then, no one was actually reading his medical file, as the professionals had not caught this fact. This error caused a baseline to be pushed back much farther than it should have been, it was impossible to tell exactly what improvement the radiation had done, and what almost 3 months of Chemo had done. The CTscan was done in March, before this scan he had been to see his surgeon who did a Gastroscopy, and was thrilled, the tumour had disappeared, the biopsies he took were all negative, but then the CTscan. Apparently he had spots on his liver, and suddenly a spot on his right lung, this is when we were told it was simply a matter of time when the Cancer cells explode and take over his whole system, there was no chance of remission etc etc. 

Now technology is incredible, but in some cases not incredible enough, as we learned in the beginning when the cancer in his spine, was actually explained as old fractures showing the same as cancer (he did NOT have cancer in his spine). So, could these other spots be something else, as well? At this point in time, we are beginning to believe this is indeed true. Clearly as he is listed as Stage 4, some things within the Cancer system in British Columbia are no longer available to him. CT's, blood work that gives tumour marker numbers, and maintenance medication are basically what he is offered. No MRI's, no PETscans, no biopsies, his stage 4 is based on one CTscan back in September and we must simply accept that any and all spots are indeed cancer. 

So since March his esophagus is cancer free, but we have been following his CTscans that he gets every 3 months, and up until yesterday, they all mentioned spots on his liver. Now, that spot on his lung the nodule that had us so concerned, well that disappeared a few CT's ago (big relief). Yesterday, there was a student Dr. in the room for the appointment so we had a much longer time to ask questions. I asked about the liver cancer, because I was going to see if they would consider a biopsy to confirm it was indeed Cancer. SURPRISE!! We were told that had disappeared, no spots on his liver, apparently that had happened a couple of CT's ago????However, he had some enlarged lymph nodes they were concerned about in his chest. We had decided before this appointment we would request a second opinion, as pushed into the twilight zone of just existing waiting for the inevitable time when the medication stopped working and faced with the end, we wanted a clear evaluation not based on the medical report of Dr. Padma who clearly lied and did not do a credible reading of the CTscan all this has been based on. So Chuck asked about a second opinion. This was when we learned this Dr. had never gone through his file! She explained she was not the one who initiated him, therefore she had not seen Dr. Padma's report , or in fact anything before he began chemo. Does that worry anyone? Sure made us sit up and wonder. We were told Chuck does NOT have an oncologist yet, his retired July 31st, so at this point the clinic is simply going to continue this maintenance therapy until such time as they find one for him????? That will constitute a second opinion, right? WRONG!! That will simply be more of the same we have been getting, someone who simply picks up the file and begins where we are at right now. 

This folks, is how deadly mistakes happen. When a person listed as Stage 4 is put on a treatment plan that is Palliative. (of a medicine or form of medical care) relieving symptoms without dealing with the cause of the condition.

"palliative drugs"  .  

What they have decided is, there is no hope, but they are doing what they can do to offer more time and comfort. No one is going to attempt to actually biopsy, remove, radiate,or chemo, just continue on with medications until they no longer work. Again, all based on a CTscan read by a radiation Oncologist who did not do her job properly! Then put on the desk of a medical Oncologist who never once checked in with us, and has since retired. At this point, this means that from now on, no one will/ actually have a clue about the history of this file (besides the surgeon and his family Dr. who have absolutely no say with the Cancer clinic).We do indeed have someone professional on our side who is going to attempt to get us a second opinion, but with our medical system I imagine they will have a very difficult time doing this. 

So, we are going the route of non pharmacy. We have researched natural remedies that fight cancer cells, we have products that regenerate good cells , we have products that kill off parasites, cleanse the liver (seems to have helped with those spots) we have products that increase energy levels, what harm can this do? Yes, we totally understand that these may not cure cancer, but in some cases they have indeed done so, perhaps they will do the same with Chuck? When you have been placed in the position that medically you have been diagnosed as no longer offered a solution to your condition because you have reached a specific stage, you have to try that that science has not researched because Big Pharma doesn't make an enormous profit from what Mother Nature provides. 

For folks who end up in this nightmare I have pity, I understand this becomes your whole world (like us) your focus, your battle, like us, you walk in believing the specialists have your best interest in mind. Sadly it does not take very long to understand, you are simply a number, not worthy of a full read through your file, not given any more time or effort than a big stack of others in the same boat as yourself. Your voice is your only weapon, never stay quiet, always question, and never forget, you are NOT their family, you are NOT their loved one, you will possibly be momentarily missed on an appointment day, but you will quickly be replaced by another, that is the reality. They simply deal with you for a short period of time, and then they go onto the next. This is their job, they see you as a statistic, you get to a place that they decide you are no longer worth giving extra effort to, and you are on your own. It is a very tough lesson to learn, you can simply give up, or you can speak up. Science is ever changing, Cancer is a huge business, no matter how you look at it, yes it is a disease, but it is a disease that is making many extremely wealthy , cures for some cancers have indeed been found, but at the rate we are going, business will continue for decades into the future. When specific medications that cost very little suddenly become extremely difficult to access, one has to question facts. They are not dangerous medications, no where near as toxic as Chemo drugs(you would be blown away at the costs of some chemo medications) but governments have made them difficult to access, why? Again, we continue with the medically prescribed stuff, we took the pause from all the vitamins he was taking, as requested during radiation and chemo, because NO studies had been done in regards to effects of the vitamins during treatment. One wonders why this is so? All we were told was they were antioxidants and he had to stop taking them. So again, clearly he has reached the end of medically proven cures (apparently) so we are heading down another road with renewed faith and hope, something we have lost with the Cancer Care system!