Mental Torture

I have written about my friend that I met last December, at the Kordyban Lodge in Prince George , before. She has given me permission to share her story with the world, as it is even crazier than ours (unreal that is possible). After her news yesterday, I thought, ah, I can simply follow the dates along with our FB messages, hah! FB updated something, and the craziest month, April, is no longer there, so this will not be actual dates, but the major timeline is simply the month of April, and of course yesterday! 

 Now, she was diagnosed (after a year of being told her pain and discomfort, was simply "woman"trouble) with a horrible type of cancer, very rare, no known treatment. So her first procedure was to have surgery, during surgery, they botched something up, and as they were removing the tumour, they actually sliced it open. She signed papers allowing the medical community to use her tumour for studies, in hopes that they could find some treatment for others dealing with this. 

In November , while we were in Prince George for Chuck's radiation treatment, she was brought to the lodge by her family to begin 7.5 weeks of radiation and Chemo. To look at her, you would never know she was suffering, she had to leave her job, and her husband had taken time off his job to be beside her during the surgery in Vancouver, so they were dealing with the financial burden that comes along with this type of diagnosis, just as we were, and because her and I share a bad habit, we spent many mornings outside the lodge becoming instant friends, and sharing our experiences, and our fear of the unknown. We only had 10 days there, so she went through many weeks after we left, on her own. She had insisted her husband stay home working, because, as I have mentioned, bills do not stop because of Cancer. We messaged every day, and have done so almost daily for the past 7 months, because we now need each other, as mental support. I have mentioned before, Cancer is a lonely disease, and to have someone traveling the same road, that understands, is a gift. 

So, because I do not have the actual dates, this is when the story gets absolutely bizarre. After radiation, the professionals usually require a very long period to recover. She finished in January, and was sent home. Now, to be clear, there are no tests when one finishes radiation, as it is a pretty harsh treatment, not only does it radiate cancer cells, to kill them off, it kills off good cells (just like chemo) and causes burns. So the idea is to leave the patient long enough for the burns and inflammation to settle, so they can see exactly what the treatment has done. You can imagine how painful this recovery is, inside your body you have a serious "sunburn" , along side this treatment, she would get chemo once a week, so she was pretty damn weak, and sick. She waited until April to get to her Oncologist in PG and see what the treatment had managed to do. I believe it was the first week in April, she had this meeting. It did not go well. The results of the physical exam had the Oncologist tell her, the treatment did NOTHING, basically things were the same if not worse. It seemed they could offer her no plan for the future. Fast forward to a week or 10 days later. She had a bunch of biopsies done with a cell phone video call between her family Dr. and the specialist in Vancouver. Call a few days later, surprise! all biopsies negative, it was all just scar tissue, she had to arrange travel to Vancouver, and accomodations to get a PETscan and have some biopsies done by the specialist. Again, remember folks, this is out of pocket. Trip well worth the cost, she was told she was in remission. So in a matter of weeks, she was told to get her life in order, no hope, and then, just as quickly, Cancer Free! The specialist wanted her to arrange 20-30 days in Vancouver for a treatment to help with the scar tissue. Could you afford that? Lodges all full, Easter Seal, all full, no help whatsoever from the government, Cancer Society, no one! Well, I have to say this news no matter about the scar tissue was wonderful! 

Now, only days ago. my friend had a huge scare. She had not been feeling too well for awhile, tired, sore, and questioning her diagnosis, because she felt the Cancer had indeed come back because of specific pain she was having. She woke up the other day, with her face and throat so swollen, she could not breath properly, off to ER. She has been in the hospital for 3 days now, because she had pneumonia, and.....a bacterial infection from the biopsies. Oh well on oxygen and antibiotic IV, slowly recovering. yesterday she was hit with a brick. the specialist called her in her hospital bed, to inform her, he thinks the cancer may be back, some concerning lymph nodes, etc. She is to get to Vancouver as soon as she is out of hospital, for more biopsies, and if it is back she will be given a Colostomy bag, and see how things go from there. 

This has not been a year, nor 6 months, she has been told no hope, then told Cancer free, now told it appears to be back. Cancer is indeed a physical disease, however, the system has created mental trauma with the way it works. I cannot imagine the torture of being told you have won the battle, only to have that last less than a few months, to be told you must begin again, and try and dredge up hope and faith after being put through the wringer by those professionals who , in this case, have clearly made a huge mistake! 

That is the big thing her and I have in common, absolutely no faith in those controlling the direction on travel on this road. Hope is the biggest factor one needs, not only in this situation, but cripes, in every facet of life, and when someone is continually stomping on hope, it becomes harder and harder to hang onto. There is something missing in the Cancer system, yes there are some group chat pages set up by the Canadian Cancer Society, while in treatment there is a counciller overwhelmed by way too many patients, but mental health is huge through this journey. Patients need mental care, maybe even more than physical care, because the continual roller coaster of hope, no hope is torture, and debilitating, and causes physical harm. 

My dream is to get the word that Chuck is cancer free, although we have been told this will never happen, but my friend was also told she was out of hope, then she got the word I dream of, only to have that ripped away before she even comprehended she was given a reprieve. 

Well over 40 years ago, my Mom died of Cancer, 40 years have passed, and with the billions of dollars, and decades of science, the progression of cures, seems to have been few and far between. Mostly what has happened is the use of drugs to prolong life, not to destroy cancer. I do not have faith in the system, at all, escpecially in the cancer system in British Columbia, but we are all holding onto Hope dearly.  

Everyone is different, Chuck is different , my friend is different, what does not work for the majority, may very well work for them...so I do believe my Dear friend and I will be messaging each other far into the future, as I have faith in her, and I have faith in Chuck, the system is just F#cked! 

Back to the Murder Capital of Prince George

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?