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May 9th – Story of my life

Posted on 2026-05-092026-05-09 By Q No Comments on May 9th – Story of my life

Last night I was quite tired. I got up at 1:30am for my boost drink, but I was so tired that I barely managed to drink it before I went back to bed. Normally when I get up I need to go to the washroom, but this time I just woke up and was exhausted and wanted to go back to bed. Instead I sat up and drank half of the boost and lied back down with my eyes closed for 15 minutes before I proceeded to drink the rest, go to the washroom and then go to bed. The interesting thing is that I did not wake up again until close to 7am, where I did not eat my regular cereal. I was too tired and went back to bed until 8:30am where I then got up and have my tofu for my morning food. At this time I prepped my next meal as well. Today was quite the rough day, when I got up I noticed that my stomach was distended and I have been quite uncomfortabe all day long. The ascites is coming back with a vengeance and I forgot how unpleasant the feeling is. I have still managed to eat a decent amount, but there is tenderness in my abdomen and standing for extended periods brings quite a bit of discomfort. I am not sure why exactly, but it is difficult to stand up straight as I can feel the stretch in my abdomen. I tend to then move around in a more hunched position as it is more comfortable. Fatigue is worse today as well, and it seems that my taste buds are somewhat impacted. Things just taste differently today. 

We ran some errands this morning, picking up coffee from Nickely Refillery and getting some soil and gardening things from Home Hardware. My head gets cold easily and I told Mel to grab one of my skull caps to wear. I had my head shaved and it is interesting that my hair seems to have paused growing. I had shaved at the same time and there has been minimal growth in weeks. I am not supposed to use a razor as there is the risk of cutting myself and bleeding, so I use my electric razor that I had bought last time. Except there is no need for it. Something that concerns me is my tongue and the threat of getting oral thrush again. The mouth sores are gone now, but my tongue still has a bit of tingling and I have seemed to have decreased my mouth rinsing today. I think that I am going to make sure that tomorrow I try and keep it up again. As tomorrow is Mother’s day I will cook everyone breakfast and we will see how that goes. For dinner tonight I had to do all of the prep work sitting down at the island. We had a simple dinner of a baked ham, some frozen vegetables and we layered thinly sliced potatoes and confit garlic, parsley, chives, butter and olive oil. Everyone loved the potaotes and Mel said that they were her favorite. They were rather delicious. We ended the evening watching a Spider-man movie with Olivier in preperation for the new one that is coming out.

Even though today was  difficult day, I still managed to eat a decent amount, though it seems it was a bit less. I told my supportive care team about the abdomen being extended and we will try and have it drained on Monday when I get the port swapped out. The doctor that I have on that day is not the one from Sudbury and is one from down south. If it was the local one that I normally have it would have been much easier to have the procedure tacked on. If we can not do it on Monday, then the procedure will be done on Tuesday prior to me getting Chemotherapy on Wednesday. This week i may be in the hospital for quite some time potentially, with the drainage and all of the treatments. Hopefully there is not too much fluid and they can take it all out in one day. There is a limit to how much they can take in a day or at once and they need to do it slowly so it does not throw the balance of my body off too much.

On a positive note, the kids have been helping out a lot around the house and we have received quite a lot of help with things. We have organized for Xavier’s events for next week and have arranged to have people come pick him up for various things. It is great that we have so much assistance to drive him around, Now that winter is over, it is a bit easier to get people to drive as both of our parents do not always like to drive in inclement weather and it makes things more challenging. Mel will be responsible for injecting me with my post treatment drugs this week in Toronto and I know that she does not really feel super comfortable doing it. The nurse will come by on Friday and give her a crash lesson, It is pretty easy and I could do it myself if I was stronger. Hopefully I can get drained on Monday and we can then get back on track. I have maintained my 1lb weight gain throughout all of this and I am not sure if the weight gain is from increased eating or from the fluids. Hopefully after Monday I can weight myself and we can see which it is. The only downside is that I will be fasting that day and historically fasting leads to me dropping 2 to 3 lbs on that one day.

Quoc Hao

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