My vision on my laptop was improved significantly but there is a till a bit of fatigue when I am on it but it seems to be getting better the more that I use it. This morning with the nurses I have had interesting interactions. She orginally was going to enter my room but then noticed all of the warning signs that she had to abide by before she entered. She did not end up coming in and went away and then came in with all of the proper PPE. She came by later again and did not even have a facemask on. It was interesting. This nurse today seemed to struggle a lot more with the placement of all of the machines. The machine to measure is in the washroom and everyone just pulled it out and used it and pushed it back in. She moved tables and got it out and it is plugged into a completely different area to use it. Setting up the drugs it has failed several times and I buzzed and someone else came in and fixed it. For some reason there were occlusions and I have had this thing operating for days without complications. Originally I was told that I was done most of my medications and I had no blood work scheduled. I suspected that was a lie and all night I had some drugs and this morning some more. A lab technician also just came in to gather more blood, probably to make sure that I would be ok to go home. Along with that this morning I had At Home care come check to schedule care since if you get admitted to the hospital your care is paused and he had received notification that I would be going home today. He took in all of the new information and told me he would arrange services for me. I had mentioned she was scheduled to come in next Friday and she normally comes by every two weeks.
This morning from midnight till 6am, I have tried all sorts of different meal replacement drinks and noticed quite the difference amongst them all and do have some slight preferences. Some of them sit extremely heavy and are super thiick while others are thick, but not unpleasantly thick. Out of the stawberry, vanilla and chocolate variants. Strawberry is the worst as it has the most artifical flavouring and vanilla and chocolate are similar. For breakfast I was quite excited because they brought me oatmeal, and yogurt. I thought that I could eat oatmeal. Boy was I wrong. I took a bite and it still trigggers some discomfort on my tongue so after a couple of bites I stopped and just at the yogurt. I have banana that I am going to try out and see how that works. Mel is going to be bringing my my favorite plain cream of wheat. She keeps on telling me that she can dress it up, but it is like do not mess with gruel. I like it for how wonderful and unoffensive it is. I remember enjoying it while I was sick with cancer the first time every morning and I did not want to mess with it. When I get better I stop eating it, because I am pretty sure the way I have it is extremely boring and you can eat a better version. But it is a comfort food for me. She will also bring some bone broth this time as well. My parents had called and asked what they can bring me. I told thelm plain congee with salted egg and fermented egg curd. We also told them to just bring a little and not a lot. I need salt as much as I can. That plain congee with salt and either condiment is something that I actually crave when I am sick. My parents wanted to bring me congee with seafood, ginger and scallions, which I love. But not when I can not chew. I also wanted some pureed soup of some sort as that goes down easy. But I like cleaner flavour profiles. I like butternut soup, but not butternut soup and ginger. I just like plain right now. I told Mel we should make some potatoe leek soup, and by we, she can make it. I will then add in tons of extra salt. I may try and make some traditional split pea soup this weekend if we manage to go shopping. We have no groceries in the house as we have been in the hospital all week. Thankfully people have stepped up and have brought things to the house everyday this week. I am still im utter shock at how much people repeatledly step up to offer any sort of help that they can. I appreciate it quite a bit.
I am not sure if people realize how wonderful of a person Mel is. I think that I am quite lucky that I have her in my life. She tries to accommodate everything that I reuire, provide fothe kids all while working her full time job as regional director. Doing any of that alone is a lot of work, but I am also a high demand person who needs persistent help. When the doctor asked me on Tuesday if I thought that I could cope on my own I said no, because I am aware of all the really small stuff she does that probably goes unnnoticed. As good as the kids are, Olivier still needs prompts on what to do. Xavier is grown and knows what he needs to do, but needs reminders on household choirs and the two kids need to split it up without arguments and make sure it is done. She needs to make sure that they are feed cleaned up and make it to school. Any possible issues she needs to resolve as well. There is also the risk of flooding our back yard so she checks in with the city. Coordination of rides for Xavier and his events. In the next two weeks he has a lot of things that need to be taken care of. Olivier is very poor at listening to things that happen at school so she needs to check the school portal and tell him what is happening. When she is with me she acts like my frontal lobe and makes most of the executive decisions with the healthcare team. I am not always in an amazing cognitive space when we have some discussions and she remembers all of the detail and knows what questions to ask or where she should be advocating for me and what to do. I can absolutely guarantee that if the positions were reversed I would not know what to ask. Afterwares she always wonders why I did not ask certain questions and I reply I did not think of it, I did not care. That is the difference, she knows and understands what we should care about and what we should not. She is also awesome as a personal care provider. I know that I could be patient with her, but I can feel the love from her. She is far more demanding than I am when she is sick and needs comfort and I try and provide as much as I can. I could do it, but it is a lot of energy. She does it constantly without complaint. The emotional and mental pressure on the support for cancer caregivers in insane and she does it with a smile on her face. I know she gets concerned at times and tries to make sure that I am doing everyhing that I can and sometimes I tell her that I am trying as hard as I can. We sometimes have disagreements on what needs to be done. I can power my way through most of it, but someimes I can not and it breaks my heart when I can not physically do what she things is best and I lash out. She takes it and adapts which is not ideal. But she knows when to push and back down and she then tales on the emotional weight of all of this. She is perfect and I am quite lucky that I have such a strong partner helping me out in this way.
Quoc Hao