Day of Desperation

Tuesday, the beginning of absolute desperation.

Now as you know the brain cancer diagnosis happened on the Thursday. Try and imagine getting that type of news, and then going home with no idea what was to happen. Then waiting the Friday before a long weekend, with no call from anyone. Of course Cancer takes the long weekend off, so you sit for 3 more days, just hanging onto a string for Tuesday to arrive. Tuesday, you know someone is going to call and let you know what they are going to do to help. Surprise Folks!!! No call, no one, no Cancer care team who you know got this information the very day it happened from the floor below them, no call from your family Dr. who had also been sent the information, no call from the Cancer agency (but that was never ever expected). I gave them plenty of time, and by the afternoon, I was going insane. 

Many suggestions ,some from the wonderful Locum we saw, yes I called Tuesday morning for an appointment at the walk in his headaches were keeping him awake, he was in pain, and his walking was becoming very unbalanced, something was needed. We had an 11:20 appointment, I sat hoping someone would call before this, but nope. The Dr. was extremely caring and compassionate, and very understanding of the lack of communication from the Cancer agency. He prescribed some pretty potent painkillers for Chuck, something to help him sleep and something to help him relax, and then asked if he could hug us.  Now I am pretty good at holding it together for short periods, but the hugs..well they just open up the flood gates.Felt pretty good leaving there, simply because we had spent time with someone who cared (that is so important at this time).

Back home we go. He was not interested to take anything immediately, because he was set on butchering our meat birds. Things he felt he had to do..however we did talk him into it. Off to bed he went.

\Now sleeping was continual he would get up have a coffee with his eyes closed because of the pain, and head off to bed right after, I would be lucky to get him to eat some breakfast. We were all so worried and hated watching him suffering.

I decided to contact one of the few people with the Cancer Agency in Prince George that had been in our corner the last go round in PG. She had listened to our complaints, and stepped up to the plate to take our concerns to the folks who were in charge. She was pretty much answering our concerns on a steady basis, as if you remember back in December we had so many issues, and as the Aboriginal Liason ....AND  personal Councillor to pretty much everyone (I think there is one other councillor at the PG Cancer Clinic), she is stretched to the limit, but somehow always there.I can't remember if I gave her Kudos in the past, but,she gets a truck load now. See I was absolutely desperate, no one seemed to give a shit..here it was 5 days after a horrific diagnosis, and no one was calling. I was in tears, and figured why not send her an email just asking for a moment, maybe she would read it the next day and get back to us?

\I felt a tiny bit better knowing I had actually done something that might work, but again, the twilight zone of just sitting at home with nothing happening, and no one there for us, drove me nuts. I picked up the phone and called Laura. I figured I would leave a message as well as the email, to my surprise she answered! You know that feeling when a weight is lifted off your body? It was instant, I knew I was talking to someone who cared. She must have a ton of folks she helps throughout this nightmare, but somehow she remembered us , in fact, she was just about to call me! How can it be that a person who is dealing with the massive number of folks from Northern B.C. who are sent to PG,can be so quick, and everything else takes a lifetime?If that place had 3 more Laura's , patient care would improve 100% from what it is now!

She listened to Chuck's story, she knew his past story, somehow, she started to ball rolling within minutes. She was going to contact an Oncologist for us, she was going to look into things for us, and basically, open the door to the walls of silence. She promised to call us back on Thursday with all the news. Honest to goodness folks, again, sometimes I do not realize how heavy a weight I carry around all day, every day, dealing with this Agency, and of course my beloved's cancer. I don't think I have even mentioned what was happening in our world before the Thursday. Maybe I will put that piece of personal life in, so understanding the pressure may become a little clearer.

Chuck and I have been together about 39 years, in fact we started to live together in September 1985. When all this began, we needed something to brighten things a wee bit, and also to give the kids something to look forwards to. We (he said I) decided to actually commit, and September 7th was to be our wedding day. It was going to be small. Just our immediate family, with their children and grand children, and some dear friends, some of which were going to travel quite a distance to share our day. I was actually stressing about this when he was in his IV treatment, as there was so much still to do, and he had been so short tempered, and so tired, I didn't even want to ask him to do anything(brain cancer does some pretty serious shit with personalities). When he was told the CTscan results, and I kind of lost my temper in the ER because I could not believe after 11 months of treatment and Ctscans, no one had even considered doing a scan beyond the original area, even though they were telling us the lymph nodes were hollering the cancer was back somewhere, I told him we would cancel the wedding. He was insistent we continue on with the plans. One day of enjoying time with those important to us, a day to laugh and remember. So...I agreed. 

That brings us to Tuesday afternoon, I can't remember what time, but the phone rang. It was the specialist from PG. He asked Chuck if anyone had spoke to him about the scan, yes, the ER Dr. had explained the results, so....he mentioned something about Vancouver, we thought he was saying he could have Chuck in Vancouver the next day, but it was a misunderstanding. he was explaining the Oncologist was in Vancouver and would be calling us at 9AM the next day, I asked the specialist how quickly Chuck would be getting treatment his answer was "very quickly". Ahhh a little breath of relief was beginning. 

Wednesday morning the girls were with us when the phone call came right at 9AM. The Dr. asked Chuck a whole whack of questions on his symptoms, explaining that he had 3 large tumours and each of those tumours caused different disabilities. Apparently, SHOCK, one of these tumours is situated right in the area he had a massive sub dural bleed many years ago causing him to have 2 burr holes drilled into his skull to drain the bleed off. I am NOT a medical professional, but would that perhaps be a weak spot for this evil disease to take up a home? He explained that there were 2 options for radiation, one was the new clinical trial (I had actually read about the previous night, knowing the Oncologists name) that was a one time heavy dose of radiation, it was untested, and the effects had a fairly large amount of risk to it, the other was the tried and true one of 5 doses of radiation to the brain, this one was proven to help stop more tumours from growing, as well as shrinking the ones there. Radiation was not going to kill these suckers off, that will once again be Chemo's job, but this treatment was going to help him regain 50% of what he has lost so far within a month or so. Now there are side effects, his memory may very well be affected, not sure how, but it is likely. There are other risks and side effects as well, but we have been given a handfull of hope ...Then he tells Chuck he wants him in PG that afternoon, treatment to start the next day!! Holy crap, folks...Big rush up the stairs to start packing, organize everything else with the kids, thankfully they are there . Grandson in charge of all the poultry. Just insanity but joyful insanity, this was what we wanted.  I was honestly just coming down the stairs when the phone rang. Chuck answered and put it on speaker. It was the PG Cancer Agency...That is when the day turned into the absolute worst since we began. The woman informed Chuck that she knew his Dr. wanted him out there that day, however...she did not have a spot for him, they did not have a Dr. so..he would have to wait until Sept. 11th!! That was pretty much the end of me, and Chuck. All the air in our bodies just exhaled, we were completely deflated. My legs were like rubber, my back bent, my head dropped, and there was absolutely nothing left inside me. I might have said some things in the background while he was on the phone that were not nice. I had to leave the house as I have never had a panic attack before, but I knew that was what was happening. I feel bad now just going out the door and leaving Chuck,but I could not do anything at that moment to help, I had lost it! I did some serious crying, this appeared to be a repeat of the last bout with the Cancer agency that took 11 weeks for him to even see anyone! I calmed a wee bit called a friend, did more crying, and my girls called our Liason, Laura and left a message with the specialist in PG. I don't think we have felt so crushed before, like he did not matter in the least, and we were out of luck. 

I have no idea who worked the magic, but within an hour or so, the phone rang again, and surprise..it was PG Cancer agency, and they had found a spot for him for the next day!! I am going to say, this mental rollercoaster is cruel. It is one of the worst things to deal with, the ups and downs, the waiting game, the loss of control of every moment in our lives. \

We have made it to PG, our liason was waiting for us when we arrived at the clinic, we had a consultation with Dr. Jiang's fellow oncologist, a very pleasant woman, Dr. Cua who tested his loss of field vision, his balance etc, and told us that Dr. Jiang would be in from Vancouver soon to speak with Chuck. Feeling pretty good, He was taken in for his CTscan, and fitted the creepy goalie mask thing for his head. It is much like a 3D goalie mask except it is a plastic mesh, they heat it up and then mold it to his head to ensure no movements during radiation. First treatment is tomorrow at 3 in the afternoon. So we have tried to spend the last 2 days just relaxing and resting up for the week to come.

LOL the easiest past of all this was the decision to cancel our wedding. It was not a hard choice. We were , of course, looking forwards to having our family and friend together for a nice visit and lots of laughs, and I felt badly telling those folks who mean a lot to us that they would have to cancel all their plans, those traveling long distances, those cake bakers, those brother's who were going to walk beside me (that is singular and he is the best brother ever!) those kids who had planned everything, those friends who were going to stand beside Chuckie, Cindy Lynn and Archie, doing up those lovely wedding cups that will now need a new date, Caroline, who is gearing up to do battle for us, Ginny for her offer, Nick for his de-maleing our little piggies, Joe for all he did,and for simply being his normal calm self,Lizelle for her help and smiles, Jordan for doing bird duty, Kayle for all she did, Naida for the beautiful memory box that we look forwards to sharing with folks in the future. Dawn Kyle and I think Paul? for doing the meat bird end of days finale for us.This would be twice as hard without those dear to us and our kids who keep telling me to stop saying thank you..but I am not going to stop.

So you are all up to date on things, I know I have a bunch to thank still and I will continue as I go along. We shall see what tomorrow brings, I have a happy moment to look forwards to as our friends are going to visit from HHope, and it has been far too long since the two old bats sat down for some coffee and laughs.

I pray no one ever has to follow in our footsteps, and I will do all I can to try and have those cracks filled in this cluster f#ck of a health care system. I hope when the time comes, and it will , we will not be alone in our hope to stop this insanity!!

So this has brought things pretty much up to date, I will keep the blog going, and hope it has a happy story , because so far, we have been thrown in the lions den over and over...Fingers crossed a change is on the way.