Well, I hate to say it, but I am back, and I am PISSED!! I knew the system was flawed, but it has somehow F'd up even more.
It all started when we got the results of his recent CTscan back. Up until this point, folks, we clearly were following some misguided idea that things were improving. His tumour cell count is down to 3, started up well over 100 (sounds pretty positive, right?) the chemo appeared to have destroyed a bunch of spots that were suspect, and the previous CTscan was pretty impressive, Plus esophagus biopies were negative and the tumour had disappeared. Last week, he had another CTscan. His Oncologist contacted the care Dr. as he was concerned that 2 nodes close to his lungs are enlarged. Course of treatment..wait 6-8 weeks and do another CTscan. I am not sure if I mentioned his specific cancer is very rapid, we already had to wait about 13 weeks after diagnosis for any treatment, and who knows how much it grew over that time? Now we sit back and cross our fingers they are enlarged because of some other slight infection that the nodes are fighting, and not cancer!
So when I heard this, I thought, why not give him a PETscan, far more advanced than the CTscan and that would show whether it was cancer or an infection immediately! I do have friends who are fighting this battle, and they have had one or many more PETscans, time for him to have this test. This is the same test my sister-in-law wanted done, and was in the midst of trying to figure out how to pay out of pocket for one, as her Oncologist denied her the request. I sent a note to his Dr. yesterday, and was told she would call me today.
She did! truth be told I was a total blubbering idiot throughout most of the call, and I am still reeling as I share this. Once again, she told me that this is Stage 4, there is NO cure, and time will come when there is nothing we can do. The system will not do a PETscan on someone with his diagnosis. She could put a request in, and it would be denied. Those scans are only used for patients with the possibility of surgery to cure. Harsh news, but clearly the same reason Jody did not get offered one, they are on the outside now, simply palliative, until the end! So our only option within the Cancer system in B.C. is to wait..and hope the nodes decrease, if they don't we have nothing else!
O.K. now you all know I have kept track of everything from the beginning, you recall what we were told when we had the one and only meeting with his Oncologist..He was ordering a long cycle of a specific medication targetted to his cancer type along with Chemo. If this medication didn't do the job, there were 2-3 other options we would have afterwards. He also would not give us a prognosis, because every one is different! However, he also said that 1/2 way through the chemo treatment we would have a Video call with him. As I stated we left that meeting feeling pretty comfortable and hopeful.
We never did get a call, but like Chuck said, no news is good news, right? We knew the care Dr. was in contact, so even though we would have liked a call to ask questions and get some answers, we had to accept things as they played out. That is until today! During our call the Dr. had to inform me that the Oncologist had emailed her stating as of July 31st he was retired, so, in other words Chuck no longer has an Oncologist following his case. She told me that the cancer clinic in PG would allot another Oncologist to take over. That is when I started the blubbering. there are 3 Oncologist within Northern Cancer Clinic, one of which was my sister-in-laws . I had been through this when they told us in PG she would be who we had to deal with, and thankfully somehow they gave us Dr. Saltman, now...WTF!! Our choices (oh we don't have a choice, I forgot) are limited to the 3 in PG or someone with a patient case load in Vancouver, Victoria, or maybe Kelowna, someone we likely will never see in person, someone who is very unlikely to start at page one of his file, to read everything that has occured over the past 9 months, someone who is overworked and unable to provide one on one care, just another numbered file on their desk!
The Dr. was clearly upset during the call, she kept saying she hated having to pass this news on, and requested I write our MLA , as she had no pull, no say, no nothing in regards to what was happening. She explained B.C. has a massive shortage of Oncologists who are continually leaving the province and even the country. She is going to try her best to find someone for us, but again she has no teeth in this matter, she is just the one left holding the bag along with us.
How would you feel if this was you? Dealing with something as deadly as Cancer, and been told we are going to try and find someone, anyone, who can find a space to take you on? This isn't just a family Dr. who can prescribe antibiotics when you get a bladder infection or maybe break your leg, this is someone who can keep you alive, and knowing that this person will maybe somehow manage to put aside 15 minutes a month to follow up on your case, is pretty harsh.
So, faced with this absolutely uacceptable, criminal (yes it is criminal, as a Canadian taxpayer, we are entitled to the best Health care possible, which we are absolutely not getting even mediocre) prognosis, I have begun searching private Cancer care in the United States. I understand this is out of pocket, and I am attempting to search ways we can manage to do this, perhaps cashing in life insurance? I know there is far more advanced care in the US, I have followed some pretty horrific stories of Canadians who have been sentenced to death in Canada, only to find the US has advanced treatment care for the money, and that is clearly where we now have to look, as he has been put on the backburner with the Cancer Care agency in B.C.
Folks this could be anyone of you, sadly, and the roadblocks that are placed in front of someone going through this in B.C. are immense, we are all getting totally screwed with the disasterous mess the Government has made of a once proud health care system offering each and everyone of us the right to be given a chance to fight for our lives. Clearly now, there is a limit to who gets the weapons needed to battle, because they are few and far between.
If anyone out there has experienced having to go to the States in regards to Cancer, please contact me and let me know how you managed. When Health care decides you are no longer worth their time and effort, what else can one do?
My heart goes out to both of you, though our system in the states failed my sister horribly. If they had done the surgery she needed right away she would have had a chance put they did the chemo, then fiddley farted around. So then.she was told it was too late,already metastasized. So I do not have a lot of faith in chemo and most cancer treatments.
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