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!!
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