I had quite a few appointments today and they went much longer than I had anticipated. The coordinator dropped by this morning and we established what I needed for home care. I asked for a wheelchair and we will be getting one this week for a 30 day trial to see how much I like it. Mel thinks that I will never venture out by myself so a porter wheelchair will be fine. I am not sure how much rental is and whether it is useful to get or not. Once we test it out for a couple of weeks we will know as well. They are going to be skipping the next visit as we will be in Timmins for tournament of champions. The visit this afternoon with my palliative care doctor was a bit surprising. Sudbury is a small town and it is important that you treat everyone nicely as you never know when you may run into them again. I never actually looked up what the doctor’s first name is, but I actually know him and he hung out in the same circle as my sister. He asked about her right away and we had some idle chatter about things. He is actually also very close friends with someone else that I know who reads this blog and has spoken to him about me. Mel made a comment about how this is so typical that I know everyone and of course I would be connected some way. When I worked at Vale a lot of my coworkers thought the same thing. We would meet up with teams or groups and I would already know them and have a connection with them and we would break into a conversation. I appreciate the friendliness of everyone and my sister made a comment that it is one of the benefits of living in a small town. I am quite ecstatic that he is my doctor as I like him and he will push for things rapidly. We told him about all of the various issues I had and he provided advice to everything. Mel mentioned that Spain had wanted some scan done so he he told me that he could book those immediately and the nurse who is my friend. I had an ultrasound booked that afternoon so we can see if there was enough fluid to get drained, a chest CT and an ECG. All of this was ordered very quickly and I proceeded to the other parts of the hospital to complete all of the scans. After all of the scans we went back to the department and they put in an order to get the fluid drained as quickly as possible so I imagine that it will be done within the next day or two.
The actions from people I am close with and those I am not is quite different. Last week Mel had reached out to the Social Worker to fill out some forms and she had not heard back, while we were at the hospital she went to speak with her in person and she had not even acknowledged or opened the emails that she had sent last week. Mel can be very aggressive to push things through so she got her to do all of the required steps and will end up following up with her later this week as well as contacting the doctor to make sure that she followed up with him. I do not think she understands how tenacious Mel is when she sets her mind on a task. Mel also mentioned that I had waited for her to show up for the evisit and she mentioned that she thought it was an in-person meeting. We had told her that as it was right after chemotherapy that I would not be going in. She had marked me down as a no-show and chalked it up to miscommunication. She asked if I would want to make it up or perhaps chat after I come back from Spain. The social worker thought that I should unpack my emotions and feelings and Mel had told her that I am not like other patients and do not seriously see this as a negative but a growth opportunity. The palliative care doctor had asked me about that as well and questioned my mood. The nurse answered and said I was generally pretty positive and Mel rolled her eyes in disgust. Not at the nurse, but the fact that I do not see any of this as negative and there are times where she would like to chat about the negative things a bit. The doctor asked about my support with family and friends and I said that is not an issue at all with all of the support that I have. I have not shortage of people willing to help and we have been starting to lean on more and more support from people. The nurse asked us if we wanted to create a legacy document and I said I would be interested in that. Mel also wants to compile all of the entries of my blog so that the kids can read it all when they are older. Maybe will read it at some point as well. I know that I have purposefully kept in errors and grammatical mistakes in my writing because it reflects my state of mind at the time of my writing and I want to capture errors.
Last night Xavier was asked to go to the U15AA team practice and it is interesting that I had several parents reach out to me to tell me how good Xavier looked. One comment was that he looked big on the ice and he seemed to be much faster. The kids on the teams made it a point to tell their dads that he looked good. He knows a lot of the kids on the team having played with them in the past and they like him, but it is nice to hear it from others as I have not been to a practice in ages. Most of the kids thing he should be a shoe-in to make the team this year, but I reminded a lot of the parents that is what the assumption was last year as well. What I appreciate about him however is that he works hard no matter what level he is practicing at. There are very specific things that he works on during practice and he focuses on those elements. It is something that we had started years ago, what 3 things are you going to work on during this practice. Work on isolating those and concentrate on those weakness. For example if he was working on his glove, if the kid was scoring on the blocker we would not care because that was not the focus for the practice. He would chose some very technical things to work on and some mental aspects and do that. The issue is that this year I have not been able to go and see how he does. When I see him occasionally at RHP I do notice how fast he is and how that has translated to his game on the ice. He is very fluid in his movements and everything looks easy.
I have purchased some things to help out with bread making as it seems that Olivier really enjoys it. I bought some things to make baking multiple baguettes easier and some ingredients to help make banh mi bread light and fluffy. I want to try and make some more with him this weekend and we will see how it goes. Last week, his grandmother and great grandmother asked him how he thought the bread would turn out and he confidently replied that they would be delicious. I think that I am going to try and make this a weekend experience with him and we can use the bread for various things. Mel inadvertently heard him swearing over his VR chat and she wanted to confront him about it. We rarely ever curse or use any vulgarity so it was interesting to hear Olivier do it. When Mel asked she said that some guy kept on pressuring the kids in the chat to do it so he did part of it to shut him up. Mel had asked does he always do it and Olivier said that he sometimes reports the people and kicks them if they are harassing them too much but he did it this one time. It is amusing the different ways that Olivier and Xavier deal with their problems. I think this is why I am interested in the legacy document. I am curious on what it states and some of the messages. I am also going to cheat and test out AI to see if what my perception of what I believe and think comes across. I do often enter my blog posts into an AI to get sentiment and never alter it based on what the AI says. Primarily because the AI wants me to clean up things to make things more easily understood or readable. Sometimes it says I repeat myself but I tell the AI I am not editing it as it reflects my raw writings at the time and I want to capture the errors and the mistakes. I think it will help me organize thoughts and reflect one things that I think may be important for the kids to know moving forward. I hope that the kids have learned well from us and for the most part I am happy with the lessons that Mel and I have taught them directly and the unspoken lessons that they have picked up on. Once I complete that document I will share my thoughts on legacy and what the AI thinks. I think it will be entertaining to see whether we are aligned or not.
Quoc Hao