This week has had its usual share of challenges. As you know from my last blog, I had my blood transfusion and very long day in hospital. That always perks you up a bit. The next day I was due for ECP. Sadly despite many attempts, the nurses could not get my Hickman Line to work. The line flushes but it won’t draw. I’m waiting for a linogramme to investigate what the problem is. I said to the nurse “you know what the definition of insanity is don’t you? Doing the same thing and expecting a different result” The nurses in ECP are gutted for me. I’ve had 6 of these things. They are really painful when inserted. It has to be carried out in the vascular surgery theatre. Surely there has to be another way? I can’t have ECP till the line is sorted.
The other bit of news is that they have decided to give me a 4 week course of Rituximab. They want to start next week. The first infusion has to be given over 6 hours as people often react to it. Subsequent infusions can be given much faster. They can’t give me any of it until they fix the line though.
It’s frustrating to have to put up with all these extra appointments and invasive procedures when bits of equipment fail. Sadly there is nothing I can do about it apart from embrace the situation and try and learn from it so that future problems can be avoided. Let’s hope I get to talk it all through with a consultant to look at all the options. I shall keep you posted.
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