We met with the oncologist today to set things up for treatment starting tomorrow. During our brief visit I received several phone calls. One from my son asking me if I was going to pick him up for his athletic therapy session and several from healthcare people. Xavier normally has his sessions on Monday but this week he had no availability so we moved it to Thursday. It freaked me out at first because I would have made arrangements. At the time I forgot that he did not have a session and made plans for Mel to go get him. I checked the calendar and he had nothing so I called him back and told him to take the bus.
Nurses thought I had a PICC so they were scheduling at home care for me. I received a call while at the appointment and had to share that I had a port. People are always shocked when I tell them that I do not have a PICC and have a port. I also did not realize that the port was completely under my skin and that they stick a needle into the port. It is quite a bit different from what they do with a PICC. I thought that I would not be getting any needles at all. I will give feedback tomorrow on what it is like. I had the option of going 3 hours early to my appointment for blood work but I decided to do it this morning instead. It was jam packed and I am a bit surprised at how things are at times within registration. Some patients are grumpy and have no patience and demand preferential treatment. There was one person this afternoon who wanted to go into one of the registration cubicles, skipping getting a number. His son told him he could not. It is an interesting thing to see the sense of entitlement from some people and some of the abuse the staff get. A girl got yelled at for not being patient enough and all she did was call out a number and when she did not hear any response she called another number and the people yelled that they were coming but there was no indication that they had the number.
The appointment with the oncologist went as expected, he was not super keen on me going to Europe as there were things that he was worried about. He will support me anyway that he can though, but he was worried about if something happened and we reassured him that it would all be awesome that everything was covered. He is concerned about infections but I said I do not fly economy so it should be fine. The other concern is the financial impact, as he thinks it is foolish to bankrupt the family on something that might not work. The cost of the treatment is not low, so it is something that I understand why it is not a wise idea to do. He is not expecting this drug to work as it had little impact the first time as I did not respond well so I will get a CT scan after the 3rd treatment and we will see what happens. What he thinks is that if the current treatment is not effective than I should probably not do the PIPAC as it will be a waste of money. I appreciate that he is looking out for us financially and he does not want us to throw money away chasing something that might not work. We also heard back about Mt. Sinai and no one in Canada is doing the PIPAC treatment right now and they suggested the US. Spain is still in play though and they have world renowned cancer centers so we still have quite a few options. The doctor agreed to help out with Out of Country OHIP application to see if we can get it covered as well as with the accessibility card for parking when I go to places. I get tired much quicker now and I am not sure how my mobility will be. I want to get myself an electric portable wheelchair. I had a manual one the first time and I am not sure if I will have the energy to move myself around in it. We will wait and see how this all plays out.
There was so much more that I had planned on writing today, but I am tired and I can not remember it all. Tomorrow I will be there for approximately 2.5 hours in the chair, which means that I will be there for most likely 3.5 hours. Mel is not allowed to eat in the room with me, but I can. I need to make sure that I pack my food appropriately during that timeframe. There are a lot of things that they have recommended that I do to make things easier for myself. I will pack my bag tonight with everything that I think that I am going to need tomorrow and I am going to try and constantly eat for the whole time. I think I will see about writing in the chair while I am there.
Q