Cancer Rollercoaster

Well, here we are ..2 days into radiation.  I am so hoping this is helping someone, as it is one of the most difficult things I have done, way out of my comfort zone. I have already come to realize keeping the record of our experiences has been good in one way, and that is the fact I can reread every step of the way. I can understand that our disgust, our discomfort, and our lack of trust in the system has bearing, lots of bearing! My need to question absolutely everything has been with reason, we have not been difficult we have simply expected the best of care, and found the care lacking in so  many ways.

This whole experience has been a mental rollercoaster, with tiny little highs, and deep,dark lows . It has been mentally and physically exhausting, we have changed, along with our whole family.  I have been lucky to reach out to the woman who was given the job of personal counciller to Chuck, and thankfully myself as his partner. I have abused my friends with calls full of break downs, I have cried in front of more people than my entire life before this.  When I tell you this journey is one of the lonliest ever, I am not exaggerating. Those who hold all control are not our friends, nor our families, they have no connection to us besides their pay cheques. We are simply a couple that has entered their area, like thousands of others, and they do their small part of Cancer Care, and go onto the next. 

Is it just us that have fallen into this horror show? No! This past week has seen my Kordyban Lodge friend read her most recent test results on the Health Gate app. They were less than positive. No medical professional who has dealt with her case bothered to call with some pretty damn serious news, she had to find this out all on her own, amidst phone calls explaining how to deal with advanced care, how to talk to her family, how to have a end of life plan. So much help flying through the phone and mail at her, after sitting at home waiting for a call from those in charge of her care, that just didn't come. This is NOT acceptable!! Can any of you imagine this scenario? Thankfully the two of us will meet up here in PG tomorrow, as she has an appt. after the fact. We were all to meet up when herself and Chuck had managed to beat this F#cking thing, abd celebrate. We won't be celebrating tomorrow, but you know what? We will just regroup , we will share our strength, and hope, and fill each other with enough power to kick Cancer's butt.

Two radiation treatments done, 3 to go. He has taken them well. Tumour pressure does strange things to the brain. He has balance issues, much like those suffered by stroke victims, same with speech, and of course intense headaches. The headaches disappeared quickly with steroids, as they reduce swelling rapidly. The speech seems to have improved as well, he says the balance is better, but he has a ways to go with that. What today brought, was the intense tiredness. He came back to the hotel after treatment, he ate,and has been in bed since except for a quick walk down the block for supper. This is a repeat from before, basically expected by us. As this is 1/2 the treatments as last time, we are not sure how long this will last, but exhaustion with radiation is almost a given, it will take weeks maybe months for him to get his energy back, sad, as he was almost there when this hit us.

Tomorrow he has an earlier appointment, 1030 radiation and an appointment with a nurse who will discuss his side effects etc at 11AM.So glad our dear friends from Hudson's Hope were here yesterday and this morning, as he was able to enjoy their company before this exhaustion kicked in. 

Hoping we get an meeting with his Oncologist  before going home, but we understand it takes a very long time for the effects of radiation to end. we were told this sometimes goes on for about 2 weeks after the last treatment, so updates to follow.

Thank you to all those who are in our corner. Your words and thoughts are appreciated, even if I don't always comment.