The 14th of March.
I am certainly improving, because I am off oxygen! At rest anyway, when I move I’ve still got to carry my pal the oxygen cylinder around with me.
Ben popped his head in this morning when he was wandering around in his scrubs, presumably talking to patients on his endoscopy list for today. He said the pneumonia test from Heartlands result was back and apparently I do not have it, although it’s an unreliable test so who knows?! Whatever it is, I am going to take a long time to get better; he does not think I should have any long-term damage from either the infection or the pneumothorax so I should get back to where I was. Eventually. He hopes to get me home on Thursday/Friday.
Later on, Dr. Khan and Maria came around, and said much the same. My CRP has come down to 41, and if I were a normal patient, he would discharge me today, but he wants it to get down to single figures which honestly I agree with. Few more days of mero, watch my CRP, plan to be home by the weekend! I said that today I would do another oxygen test to see how much I need and they were very pleased with that idea.
The rest of my morning, I put up a blog post, and read Dean’s magazine. It is excellent and I would recommend it, even if you’re not LGBT+, there is plenty of content that is interesting. I swear I am not biased.
Mommy came in at lunchtime and this afternoon we had lots of chats with Jenny, the auxiliary nurse who has been looking after me for most of my time but is now off for 12 days and hopefully won’t see me again, crocheted/cross-stitched, talked to Christine on the phone, and watched The Big Painting Challenge from Sunday. We also did some more oxygen tests, which were good and bad. We found that at rest, my sats are 96/97% which is fine, and I don’t need to be on the oxygen when I’m not doing anything. However, the second test was less successful. I was going to wear the sats monitor and go for a little walk without any extra oxygen to see what the levels in my blood are like when I’m active. I got off the bed and was at the door, working out where I was going to try to walk to, put the sats monitor on, took four steps and they dropped to 85%. Not good. If I want to move around, I’m going to have to take my oxygen cylinder with me.
Dean didn’t come down because the chemo has totally knocked him which is not surprising; it’s his 13th cycle and it doesn’t get easier the more you have, it just gets worse. Depending on how he is, I might go up to see him tomorrow, but we’ll see. No matter.
I’m tired. I’d like to go home and sleep on a mattress that doesn’t hum and randomly in/deflate and not be woken up by somebody taking my blood pressure and eat food that doesn’t come in tupperwear or clingfilm and have my right arm be a normal size.
Hopefully I get most of those things at the weekend. Can’t rush it.
The 15th of March.
No news today, I have very much just been passing the time. I have finished crocheting the doily I’ve been doing while incarcerated and the nurses are all big fans of my work. We did get a bit chatty though so I hope I did not get any of them in trouble.
I did not see any of the consultants today, just Maria took my blood while showing another junior how to do it from a PICC, and she came back to let us know that my CRP is in the 20s now so they’ll take blood again on Friday and if I am lucky they might even kick me out on Friday night! I can hope. Praveen from haematology came to check on my progress so I gave him the latest and he went away happy.
We (Mommy and I) have decided that what I have is actually still the pneumocystis pneumonia I had before Christmas, but I only had five days of Augmentin for that which is not effective treatment. The test for it isn’t 100% reliable so it’s the most likely suspect, especially considering some of the other symptoms, such as the non-productive cough that I have had for months, which is not productive because the sputum is too viscous to come out. Lovely. Significant hypoxia (low sats) is another symptom, and a pneumothorax is a common complication of PCP, so I think we can all safely agree that I have actually had this since December and let’s be grateful I didn’t pop my clogs because if I hadn’t come in when I did I could have been in trouble.
But I’ve had enough now. Two, maximum three nights left.