Archives For CRP

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. 

The 12th of March. 

I had a minor breakdown last night. I got very sad and scared about my current state, and had to be careful not to let the tears start flowing because that would have made everything worse. Infections can cause permanent damage, and I am really, really worried that I will not return to the way I was in November, which is the last time I remember feeling relatively good. If I continue to struggle so much every time I move, my life as I know it will change forever, again. I want to still be able to walk around my house feeling okay, able to go into The Glee and climb the stairs without being so scarily out of breath that I am frozen in my seat because even thinking about anything else seems to make it harder. If I have to keep using oxygen at home then we are going to have to stop fostering kittens, because they will play with and chew up the tubing. Then, if I can’t foster, I certainly don’t want to be in charge of homing anymore because it would be torture. 

Basically, if I do not recover to a satisfactory degree, I do not want to live like that. But I don’t want to die. And I don’t know where that leaves me. I will talk to the doctors tomorrow morning, find out if we’ve grown anything specific yet, and if they think there will be any long-term effects from this. I suspect it will take a lung function test in a couple of months to know for definite, because it could take a good 6-8 weeks to really get over this. And I hate waiting. 

I had a nice break today. My only mero dose was at 2, and the doctors had said that if I wanted to go out between doses that was fine, so I asked Daddy to come and pick me up, then we went home where I had a boiled egg and soldiers for lunch, and Mommy washed my hair. It has needed doing for at least a week, so it is nice for it to feel soft and fluffy again. 

Mommy and I came back at two, when I had my mero, and the nurse was very keen to start weaning me off the oxygen again, despite the test the other day. I agreed to swap to the low flow meter, so we can bring it down in smaller increments. Started at 0.8 litres and that was okay, then at six I came down to 0.5. I don’t feel very comfortable, but my sats are 99/100, so I’m okay, and I’m going to persevere. When I started on one litre, I felt like this, and it got better, so I’ll try. I’ll still have the small cylinder on 1 litre when I move because I will definitely need the extra then. 

While I was at home, Mommy made cinnamon swirls! We are so basic – she happened to see cinnamon swirl dough in a tin, which is literally a can of dough that is about five inches long? You open the can, and slice up the length of dough, then bake and add some icing! I haven’t had one yet though – we have brought them to hospital and I am going to have one with Dean tomorrow as he’s coming in for some chemo and is going to come see me beforehand. He is also an enormous cinnamon bun fan so it is only right that I share. 

The 13th of March. 

I had a very quiet but productive morning, and a very busy and fun afternoon. It’s been pretty nice. 

I decided I should really update my blog, because I’d been putting it off until I could be bothered to type up what I wrote for Mommy’s birthday surprise day, but it had really been too long of a hiatus for me to carry on procrastinating. There wasn’t actually as much to write up as I thought, so it wasn’t too intensive. Uploading the photos took a little while because of the WiFi, but one can’t expect miracles. I have been writing my journal updates in the Notes on my phone since I was admitted, because it hurt my arm too much to physically write when I first had the chest drain, so I have just carried on since then. Plus it made it quicker when I came to actually do the blog posts. I still have to write them into my diary but that can wait. 

With six posts to do, that took pretty much my entire morning. A different doctor is on the ward this week, Dr. Khan, but he hadn’t got much news – still nothing specific has grown, the pneumonia test that they sent off to Heartlands hasn’t come back yet but apparently it sounds like it could be that from my symptoms (I really don’t know anymore), and they would take some more bloods today to see what my CRP is doing. I’ve checked but they’re not back yet. 

Dean was planning to come and see me at midday after he’d been admitted for chemo, but things were hectic on YPU so he was delayed. That was fine, I just sat and did some crocheting until Vicky arrived at half past two with coffee and hugs. I spent a lot of time explaining what has been going on because she only had my instagram to go on, and we were amused by the doctor coming to take my blood and being surprised by us both knowing so much medical language and being so aware of how this all works. It happens when it’s been your life for so long!

Dean appeared at my window just after half past three and couldn’t stay very long as he had to go back to start his chemo, but I gave him a swirl and he gave us both copies of the magazine he has just launched (it’s called Hiskind and yes he has launched a magazine while having treatment for cancer he’s fucking amazing). We had a little bit of chat but he’s going to come back tomorrow because he’s only on fluids during the day. 

Vicky left about five, and Mommy had arrived by then. Oh I forgot, I was also dropped in on by Philippa and Kirsty while both Dean and Vicky were here, so I have been quite the social butterfly! 

I am doing this as University Challenge has started and hearing the voice of Monkman made me sit up with excitement. I think he is even better than the guy who wore the leather vest. 

The 4th of March. 

Another day of waiting. But I am finally on the respiratory ward. 

Crappy night. I managed to fall asleep at some point, got the pillows arranged in a way that was vaguely comfortable. Somebody took some blood, although I wasn’t entirely sure that had happened until I found the gauze stuck to my arm. I missed breakfast again and I didn’t really want to buzz someone just to ask for some bread, so I ate the Pom Bears that Mommy brought yesterday instead. 

By the time Mommy arrived, I had curled up in a ball and was having a micronap (which I suppose just shows that I’m definitely poorly because I can’t do that when I’m fine), so I sat up and we had some lunch. Sam, my nurse, came to tell me that I would definitely be going down to 516 today, but we had to wait for a man to go a nursing home so another man could take his bedspace and I could have his room. If I got down there in time, the suctioning would happen today. Hm. 

Becky came to visit, so that was a nice distraction from everything else being so rubbish, and she had bought me a great book full of pictures of pugs in clothes and making silly faces. I can look at that when I feel like I might burst into tears. 

She unfortunately did have to go home, as she and James were going up to see his parents, so after that, Mommy and I just sat and tried to kill time until it was time to move. Another doctor who I hadn’t yet met came in, asking how I felt, and I said apart from the obvious, I feel fine. Turns out that my CRP has gone up to 163 from being 58 on Thursday, so that’s quite a leap, and now I’ve been started on IV antibiotics three times a day through the cannula that’s been shoved in my left elbow, meaning that now neither of my arms are able to function. Putting my pyjamas on will be interesting. 

I was finally summoned to the new ward about half six, and now I am sitting on my bed, on a mattress that is constantly inflating and deflating different bits because it’s designed for people who are susceptible to pressure sores, but I’m just finding it irritating. Honestly I am on the edge of tears every time somebody talks to me because I am so frustrated by everything – the spontaneous pneumothorax, how stretched the system is, my stupid veins being difficult to cannulate, my right arm being off limits because it’s full of fluid (and nothing can happen with that right now), the fact that I have to take a little bucket of chest fluid and a cylinder of oxygen with me whenever I have to pee, I can’t bend my left arm because of the cannula and can’t do much with the right because it hurts the muscles around the drain…I just want my normal life back. It wasn’t ideal, but this is intolerable. 

The 5th of March. 

I am much less weepy tonight. It has been a very typical hospital Sunday in that not a great deal has happened. I was woken by the suction being attached to the drain bucket (it’s actually just a tube that attaches from the bucket to a system on the wall that continuously sucks, but if I need the bathroom I just pull it off the wall and put it back when I return), but I don’t know who did it because I kept my eye mask on the whole time. If I hadn’t, I would’ve been blinded by the light being switched on above my head so I’m so glad I have it. 

I watched Sunday Brunch, much like any other week, I was just deprived of coffee until Mommy came with lunch. She had also baked some cupcakes, which had fallen over in her bag so they are a little bit squished but still very tasty. Now I have a box of cupcakes so I’m going to have to start giving them to the staff because there’s no way I can eat them all. Plus, Gareth came to see me and brought a box of French Fancies and a bag of Maltesers! So I am overwhelmed with tasty foods. He stayed for a good few hours and we had nice distracting conversations about what’s going on in his life (incredible gossip from his sleepy Spanish town where the vet murdered his wife 😱), which was much nicer than just watching dreary Sunday afternoon tv which is what we would have probably been doing. 

The cannula in my left arm is doing surprising well. I thought the vein would have blown by now but it’s still going, which is a relief. I’ve got no idea where they’ll put another one in when it’s time to change. Not sure how long they’ll keep me on antibiotics as it’s not like I have any symptoms, they’re just going off inflammation markers. I shall talk to the doctors tomorrow – thank god we get back to weekdays and normal service can resume. 

Coughing makes the drain site hurt. Ack. 

The 27th of March.

I woke up with abdominal pain which was terrifying. I was able to go back to sleep and wake up again without it so it was just a pretend attack. We had to go out to hospital at half eleven to get to photopheresis for twelve.

A rather dull (in a good way) session – I didn’t alarm too much and  was finished by half past two. Afterwards, we popped into town so Mommy could pick up her new birthday handbag!

This evening, both Becky and Alison came over, so we had chats, but tonight I have been cold and tired. My white cell count was high today so I’m just hoping I don’t have an infection. Every day is so fucking stressful.

The 28th of March.

Woke up in pain again and this worries me. I checked my bloods from yesterday on myhealth and mu CRP was 16 which isn’t great, considering my white cell count too, but I checked back a fortnight and my CRP was 72 then, and I felt fine so we’ve just got to see what happens.

Photopheresis was a little bit lengthy today – my lines played up, the machine played up, it was all very boring, but I finally finished at about ten to three. Daddy and I were going to go and see The Winter Soldier, but we were going to be late and the Vue website was being a bastard so we postponed that until tomorrow.

James had come down as he and Becky are off to London in the morning, but she wasn’t home yet so he came here for a cup of tea and we had a chat. When Jonathan got home from school, James went to help him with the papers. Later on, he and Becky came back for some chocolate brownies made with an assortment of eggs, from mini to creme and caramel. I had one too, and they were rather tasty. I was lucky not to get a caramel one – I am not a fan.

I’m really looking forward to a big sleep tonight and no hospital tomorrow thank you.