Everything is unknown

 

Wednesday, 5th September 2018

A day at the hospital, not the way I like to spend my time. Blood test was done and then a nearly 2 hours wait to see the Doctor. Why do they bother to have appointments? 2 hours. I am starting to get the hang of this. After 2 years you would hope that I knew what to expect. I sit outside the Doctor’s office on the bench and work on my computer doing emails and reading Facebook. It is actually quite comfortable and time flies. The office waiting room has 8 chairs and they were all full today. It gets so hot and stuffy in there, and the magazines are at least 6 months old.

All blood tests looked very similar to those of two weeks ago, which is not good, but not bad, I guess. He hasn’t had completely normal blood tests for 2 years.

We finally moved over to the day centre for today’s treatment. Today was for Infragram, which is the antibodies from the blood of many people. This is a great product to supply the antibodies that are missing which will help prevent infection which is one of the really big risks. (and you have to think that it has probably worked as he has gone through winter without a single sniffle)

Arriving at the centre hours late and no surprise amongst the nurses, but plenty of frustration. They have their plan for the day and they have to juggle chairs and schedule just to fit around this one Doctors schedule.

4 hours of sitting in the small cubicle while they pour more drugs into his system. He really hasn’t been well for the past 2 weeks, but when asked, he tells the nurse that he is feeling good. I get so frustrated, and it feels like I am calling him a liar as I disagree with everything he says during the nurse’s health checkup. How have you been? Fine, he says. My reply, no he hasn’t, he has been having shivers and temperatures and has been getting very tired. How are your feet, ask the nurses? Fine, he says. I say, no they are not, you are constantly complaining of pain and have had to stop walking. He agrees and admits that they are also numb. And they questions keep happening. Any cuts or bruises? No not really he says but the nurse notices the purple fingernail. How did you do that? I don’t know he says, I bleed easily. Yes, that is exactly why they ask this set of questions. They need to know things like that. Arghhhhhh!

About ¾ of the way through the afternoon we get a visit from a community visitor. He is a volunteer that is supporting people in the day centre by coming and talking. Such a lovely idea, but I have decided I am never going to do that again. We had one previously too and it just upsets us both. I guess it brings all my fears and worries to the surface. I thought I was doing OK today, but then I wasn’t. I got so upset that as soon as he left I had to leave too. Time for some tears in the toilet. I hate this, and I feel like there is no-one I can talk to. No-one is listening to how I feel. The fears, the worries, the anger, and the sadness. And biggest of all the responsibility. Every time Geoff gets shivers, I have to find a heat pack. I find his thermometer when he gets a temperature. I check that he has taken his pills. I feel all the responsibility and yet nothing I do is going to make that much difference. He is getting sicker and there is nothing anyone can do. Even the Doctor is just keeping a quality of life, there is no promise of cure, and he is running out of options for treatment.

We have our next appointment in 2 weeks and the Doctor does not know what treatment he is going to give him, because the one he has been on, is restricted to 8 doses by the government and he has used up his 8. What is next? We don’t know, and that is part of what I hate about all this. Everything is unknown.