I had the bottle disconnected today and it feels so much better after it happens. Motion in the right arm is a bit limited as I can feel things a lot when I move around. Every one tells me that it is supposed to be so easy and painless but it is still a bit tender to the touch. When she was disconnecting the port I had winced a couple of times. The thing is I can feel the tubing because I am so scrawny. Thursday afternoon fatigue is setting in again as we travel. Tomorrow I will up the dosage of my steroids to help me out a bit more with energy levels.
Today the doctor called me and Mel was gone to work so I patched her in for the phone call. He informed us that he did not feel comfortable with the information trying to do out of scope OHIP coverage because it was a difficult stretch for him. He also does not think it is a great idea to travel to Spain because of the monetary costs involved with it. Especially because this is not guaranteed to work, which is why he has difficulty trying to fill out the form as he sees this as still experimental because a lot of the research was not in controlled settings and improvements were seen after the fact. He can not ascertain whether this will make a measureable difference. He will help out as much as he can and will schedule a scan right before we go to make sure that we have a baseline. When we get back we can then do another scan to see if it has made an impact or not. I was not expecting that the OHIP was going to go through and it is quite a reach by the standards. He had spoken to colleagues and researched as much as he could and I can respect him not feeling comfortable. We will also start looking at 2nd line clinic trials and he said he would happily help out with that as much as possible. I have found a couple and they involved comparison between PIPAC and HIPEC and hopefully I can get into one of those. There are also quite a few of these studies being done in Asia, so there are quite a few options available.
One of the nurses from my pallaliative care team called fo check up on me and we scheduled to see the doctor on Monday after we see the oncologist. Last time I was there I had mentioned that I was making shakshuka for dinner and she had never heard of it before. She asked about it and said that she was going to make it for dinner. I hope that she enjoys it. Olivier and Xavier went out to brunch with my sister yesterday and he of course chose that for his meal. It is one of his favorites, but he said he prefers mine to the one that he ate at the restaurant. My kids enjoy spending time with their aunt and I think that having her with them on this trip to Spain will make it much more fun for them. They are trying to plan what they want to do. Xavier wants to go to the gym and work out. Olivier loves exploring and searching for food. Xavier is actually excited to see the architecture and Mel is planning on what we can do as a family. Xavier wants to cross over to France for a day trip for jambon beurre.
We will get the GoFundMe setup soon, even though Mel thinks we should hold off on it for awhile. Her thoughts are that she does not want to collect donations in case the treatment is not effective. I countered that by saying that we would use it pursue one of the other options as there are other things that we will try if this does not work. People keep on asking to help and this is the opportunity. I do not think it will go viral and we will fae exceed what we ask for. Generally most people hit 30-40% of the target and the first 72hrs is when you get the highest traction. I have quite the extensive network of friends and I think that all of my colleagues will actually do a far better job of collecting funds than I would on my own.
We have arrived in Timmins for the Tournament of Champions and our hotel has a slight sewage problem and it rather smells. It is not too bad, but it is not awesome. It will be manageable as the smell dissipates relatively quick. If Xavier steals the tournament he gets some more days off prior to OHF as that is the week we come back. On the drive up we chatted with him about making sure that all of his homework is done prior to us leaving. Once we get back from Timmins we will go into high gear mode of planning out Spain and next course of action after treatment. I will keep everyone posted about the GoFundMe.
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