I suppose, in some ways, I have no right to complain. It's not my body that is about to be ravaged with foreign objects, poisons, and various other assaults, but I am a part of waging that battle. To me, good preparation is a big key. All I am asking is for everyone to be on the same page, and explain things thoroughly to us, so we know what we are facing and when.
One problem I am having right now is my 'work". As we know... I am working retail right now, out of necessity. Extremely low paying, which is insulting to me, but I realize, I have to do whatever I can right now. And, they want any type of scheduling request very far in advance, like 21 days. Well, guess what... with all that is going on, we end up with appointments being made out of the blue, and well... someone's body deciding not to co-operate. (Now, see, the thing with not being able to insert the feeding tube last week... Ken had no control over that. I think Dr. W. was completely correct to err on the side of caution. However, it is the source of the latest frustration for both of us...)
When Doctor Williams told me he could not do it, he said he was referring Ken to a GI specialist. That much I understood. Well, Ken and I have tunnel vision, and when he finally got through to the office, they told him they were setting up the procedure for in office (which kind of jibed with what Dr. W told us... that they have "suites" where it can be done.)
But Ken and I have tunnel vision right now... the "target" is getting that tube in place, and we were not considering certain details... like the fact that asking a surgeon to perform a procedure on a patient based on never having seen them or anything, would be crazy. But, the office assistant on the phone last week told him that she was scheduling the insertion for tomorrow. I have no idea why, but something did not sound right to me, so I knew I needed to call them yesterday. Well, the doctor called us, and said there was a misunderstanding (gee, ya think???) and tomorrow's appointment was simply consultation. That can potentially throw a real wrench in plans. we won't know anything else on that until tomorrow.
Speaking of miscommunication and changed plans... the other thing that kind of upset me is that they have now scheduled chemo and radiation to begin the same day. We were told that Ken would have radiation beginning on the 11th, and chemo would start "within the next couple days". Well, I put in a schedule request based on that. However, when he asked later about the chemo, they told him it was also for the 11th, and we needed to be there at 8 a.m. instead of 2 p.m. like we had been previously told. Now, initially, it really bothered me, because in the back of my head, I am thinking, dear lord, I just put in the request, saying I could work Tuesday morning. (Luckily, this ended up not being an issue, this time, thankfully.) In addition, I am worried about how it is going to work out for him that they want to begin them both the same day.
And I have something to say, in regards to "work". Nothing is more important right now than Ken and his treatments. However, we have a family to take care of, and we need to make sure we have a place to live, a way to feed them, and all the other "fun" stuff that comes along with having to ensure we have some source of income, no matter how small it is. It galls me to no end to have to worry about a retail schedule when it comes to "fitting it in" when it comes to Ken's treatments. Those are first, but the work schedule must be addressed as well. It is a source of frustration,and yes, I will be showing frustration a lot during this entire process. I don't think it would be healthy for me, much less realistic to expect, that I will not get upset, irritated, and even angry throughout this. Sometimes, that irritation may seem to be misdirected, and while I wish that were not the case, it is reality. I am human, and I am going to falter along this way. It may not even be pretty to watch at times. But it's the reality of the entire situation, and I cannot and will not make apologies for it. All I can promise is that I am giving it my best, and between Ken and me, his cancer will be beaten come hell or high water. I just know it won't be fun or easy.
It's going to be a long rest of the year... for everyone...
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