I had a mostly peaceful night, despite being hooked up to a 6-hour IV at 11pm, which meant being woken by the unmistakeable ping pong of the pump coming to an end at 5am. The nurse agreed to do my early morning obs and blood taking at the same time, so I could go back to sleep without further interruption. I did appreciate that.
Around 10pm Wed night, the nurse asked me to have the nebuliser, but I said no, it was too late. Having the nebuliser consists of going to the Quiet Room and being hooked up for 45 minutes. I couldn’t believe they would suggest it at that time of night. She said the room would not be in use and then I realised yet again that patients here so often have to fit into the schedules of the staff. It’s not so bad when the individual nurse recognises this, but so often they are just doing their job and don’t notice, which makes me feel like they’re forgetting something really important about nursing, that it is about patient care.
So, I ended up having the nebuliser on Thu morning. It was actually two nebulisers. One was Salbutamol (Ventolin), which is often used for asthma patients. It helps to open up the bronchial passages. This only took about 20 minutes with a little nose and mouth mask on.
That was followed by a Pentamidine nebuliser, which took about 40 minutes through a small purple plastic mouthpiece, a bit like a kazoo. Pentamidine is an antimicrobial to prevent or treat pneumonia. I had to have it in the Quiet Room as the fumes from it are slightly toxic and needed to be pumped out of the window, away from other patients’ rooms. I had to remain in the room for a further 15 minutes after it had finished.
Once that was done, I was so ready to go, I could barely wait to put my final belongings in my bag. The nurse came in with a huge bag of medication to take with me – I think it’s more than what I was taking while I was in there! I also got a free thermometer. I need to take my temperature if I feel at all ill at any point and call the Bleep number if my temperature is raised.
My friend who collected me asked me on the way home if the world looked surreal, but actually it looked depressingly the same as ever. I felt quite low, despite the expected joy of leaving hospital. I think knowing that this is just the beginning of a long journey back to full health is weighing on me, not to mention getting over the misery that was my hospital stay.
One of the best things about being home was my cat coming to lie next to me on the couch. It really did look like she’d missed me. She’s not normally a very affectionate cat, although in recent years she has relaxed a little. She curled up right next to me and let me stroke her belly. I felt honoured and calmed.
My throat is still exceptionally sore and it’s very hard to swallow, but I can manage Ribena. My stomach’s showing signs of being hungry – lots of gurgling, but I’m not sure if I can actually take anything solid yet. I tried some thin broth on Thu evening, which was fine to swallow, but later I was sick. It was quite a strong savoury taste, so perhaps a bit much for a ‘new’ stomach. On Friday, I had a cup of bouillon, which went down well and stayed down.
Surprisingly, going upstairs hasn’t been a problem at all. On Friday my friend and I went for a 20-minute walk at Elvaston, a local country park. Again surprisingly, walking doesn’t seem to be a problem. I’m slow but it doesn’t feel laboured or leave me overly tired or struggling to breathe.
After the walk, I went to a good butcher’s and bought half a chicken with giblets. Anyone Jewish knows that the best medicine for just about anything, is Jewish chicken soup. It’s a thin broth-type soup, so I figure it’ll be easy enough to swallow. When we got back, I chopped the necessary vegetables and put it all in a pot to simmer for a couple of hours. It won’t be ready till late, so I’ll look forward to it tomorrow.
I’m quite amazed that I feel more energetic now than when I was on the initial treatment. When I was on Revlimid, standing up and chopping vegetables was way too demanding.
My stomach was sounding very demanding by the evening, so I thought I might try mashed potatoes. My friend roasted some chicken legs too, but when I tried to eat it, it tasted of nothing and the texture was uncomfortable against the roof of my mouth. The mashed potato was fine, although I couldn’t eat much. At least it stopped the gurgling noises.