This morning when I woke up I has thinking about everything that has happened this week and things that I wanted to write about. I wanted to write an update for the GoFundMe but I was not in a great place mentally. What really hit me this morning was I get why people give up the fight. I understand it much better now. I never knew why someone would not want to fight, but I had moments this week where I got it. What really helped me though was the utter insane amount of support that kept on pouring in when I needed it. I had so many texts and messages flood in that I could not respond to all of them in time. I am going to try and rationalize the difficulties of cancer and explain things as best as I can understand them and why I started to understand. Treatment takes a massive toll on you. I never cared because I always found a path to deal with it. No matter the consequences I could come up with a countermeasure. Where self doubt came in however is on Monday when I was probably at my worst, nothing helped. Anything I did was painful. Anything that I put in my mouth hurt. Without sustenance you will die. Mel kept on telling me I had to eat and I replied it was too hard. I could not do it. That is the crux of the situation that people face. When everything is so painful and just something as simple as drinking or eating brings excruciating pain is it worth the fight? That is when it hit me that I understand why people will take what they have left and not fight. When the fight brings no reprieve and you have that helplessness it is tough. I am lucky, because when a situation like that comes up I have such an amazing support system that they step in and help me out.
I have a palliative care support team whose job is to help me out with difficult situations. She read my blog and told Mel skip the usual routes and come in immediately. We did and they diagnosed that I have severe dehydration and oral thrush. Treatments were prescribed and I was admitted to the hospital for the whole week. I am not good at reaching out for help, or even knowing that I need help. That is where my incredible support system comes into play. They notice things and say that is not normal. I do not always listen to Mel so she will leverage one of the people in my support group and that normally works. She is smart enough to know that even though I am a rule breaker and do not always do what I am told, I am not stupid. I will listen to my expert caretakers over my own personal considerations. They are smarter and better than I am at this and my views are probably impacted by my mental state. Once I was in the hospital I started to feel better and learned to adapt to food. I could eat purees and soups, but had difficulty chewing. I had a path forward and nutrients were easy now. We also know that this was temporary and as we were treating the oral thrush things would come easier. Once I know the cause and effect things are simple. I know the rules and how to follow them. Things are starting to get better with my eating and I know how long it will take. We also introduced the dreaded boost and ensures. Except this time, it was pleasant. I could now take them again and have added it to my daily intake. Of course I also have a very bad side effect from them right now that we need to manage. We are unsure if it is because of the antibiotics or what. It takes me 30-45 minutes to drink 235ml becaues of the thickness of the drink. The issue is that after 1 hr I will immediately have a bowel movement, so it pushes whatever is in the system through pretty quickly. I am not sure if I am absorbing the 530 calories or not or the impact it has on what is currently there. I can use this for my benefit though as I drink it at 3 or 4am and clear my system for the day. I will have one mid day to confirm the impact after 2 days to see if the trend is holding and then again as a 10pm sweet treat. It is an extra 1500 calories that I can bring. Now that I am home and I have access to my kitchen I feel I can eat more. When I was in the hospital I also learned that I enjoyed having bone broth that I could sip on during the day. My taste buds right now are shot so it is difficult for me to know how things taste. I need as much extra sodium as I can have so I made my broth this morning quite salty. At times I can taste it is excessive. Now that I know the rules that I need to play within this is easy. The lesson I learned is that I do not need to go through this alone and there is so much support that I have. If I am suffering, do not try and power through. Someone will have a solution. Discharge from the hospital was a debacle as the nurse I had did not know what she was doing and it was the first time I have ever had an experience where removing a needle was far more painful when having it inserted. 0/10 would not recommend the nurse I had. I question some of her competency and how she made simple tasks so much more complicated than they had to be. We had our prescriptions sent to the pharmacy, but some were missing. Mel knew what had to be described and since the pharmacy I now deal with is owned by my friend this made things so much easier as he just wrote the prescription at the time for Mel. This is such a crazy amount of additional help in situations like this. Having such a strong medical support group is a god send. He also prescribed some other things and gave them to Mel to help me out with things. What I learned is that I should be constantly drinking or eating all day and I can manage that fairly well.
I had mentioned that people have dropped off food all week. When I was at my weakest the amount of people that stepped up has been crazy. At times where I thought this was tough, I would receive an encouraging text. There were times where I thought that this was tough and I would receive encouragement from people. Today a friend of mine shared the post to others who had not known about what was going on. Yesterday I was in The Sudbury Star I guess as a feel good story about the amount that we had raised to go to Spain for treatment. I am sure that this will increase some donations as I have seen some more money trickle in. People that have read the blog have commented that they appreciate the positivity that I have shown. When I have so much positive energy coming to me from my support system it would be extremely difficult to have any other attitude. It still surprises me how much people care and the sheer amount of people that have been following along the journey. Initially it started off as updating a handful of close friends and family and ow my extended support family is over 550 people who follow along. Something I learned in the last week that is important is, people are good and everyone wants to help out as much as they can. They just do not always know how. If people know what the problems are, they can help solve them. So for all the kind words from people this week. I want you all to know that they lifted my spirits when I was down and struggling. For the people who dropped off delicious food, it was awesome. For all the well wishes and prayers. I feel that they were heard and I felt vastly supported.
For everyone following along, I love you all for sharing in my journey.
Quoc Hao