Archives For breathing

The 21st of April.

Got to get this cat on the website. I sat with him all afternoon, watching episodes three to six of Riverdale, and I found lots of scabs in his fur, bless him. He’s had a really hard time on the streets. Poor kitty.

This morning I was super coughy, and I checked my bloods from yesterday, which said that my CRP is 37. Nobody has phoned me to check that I’m alright, so I’m going to stay aware of how I feel, keep an eye on my sats. They’ve been good in the daytime, and I’ve got respiratory clinic next week. We’ll see what Dr. Thompson says.

I attempted to take some photos of Sam for the website, but he is not the most photogenic of cats. I’ll have to really sell the story and emphasise just how lovely he is. He sits on my lap, occasionally runs over to his food, then scampers back for more lap time. Honestly, if he weren’t so fluffy, i would want to keep him. I just keep inhaling his fur!

The 22nd of April.

This is going to be a short one; very little to report. This morning, I was super coughy and phlegmy again. My sats are mostly alright on air, and I feel alright when I’m not doing very much, but as soon as I take a few steps on my own, I’m in trouble. I don’t know. I have a bad feeling, but maybe I’m just being pessimistic. I hope so.

I came downstairs to find activity that meant a trip was afoot. Not for me. My parents. My 92 year old second cousin twice removed (paternal side) was going to be in Alvechurch to see her son, so Mommy and Daddy were going to go over there after lunch to meet her (for the first time ever).

My afternoon was spent in the company of Sam the floof and the cast of Riverdale, via the medium of television. I’ve now watched all ten available episodes and the next one won’t come out until next Friday. Considering we’re meant to find out who the murderer is at the end of episode thirteen, .I certainly still have no idea. Everyone is a suspect.

They eventually returned just after six, then Mommy went to Grandma’s, and now she’s taken some flowers over the road for Chris and Alison’s wedding anniversary. Tomorrow I will make her rest.

The 13th of April.

Three good days is too much to ask. Well, to be fair to my lungs, I was doing okay this morning, I only started to struggle after I attempted a moisturising session. It is a good thing it’s not necessary every day.

As I’m sure you’ve grasped from that, it’s been a wild ride of a day. I spent the morning in my pyjamas, while I wrote up a blog post and argued with Justine Greening through the television. Well, more like she made a speech and I voiced my disagreement with each point she made. It was fine, no one was around to hear me.

After lunch, I had my strenuous moisturise, then I recovered with oxygen and some crochet. Despite me paying more attention, today I read the pattern wrong, so I did a whole round, started the next one and got very confused. Eventually I worked out what I’d done, unravelled it, then put it away. Too much today. Anyway, then we decided to watch a film that was in Danish so I can’t crochet and read subtitles at the same time.

It looks like might have a family for Spike. It’s their first cat and he is an ideal candidate – he is probably the most affectionate cat we’ve had and he’s such a good boy. I don’t want him to go!

The 14th of April.

Back to quite reasonable breathing today. And my eye has been fairly well-behaved as well! Lucky me.

This morning I had the lovely surprise of coming across Matilda on tv. This was rather fortunate as Good Friday television is appalling – instead of Victoria Derbyshire, there was some sort of Tinkerbell pirate film on. Not ideal.

Most of my day has been spent crocheting, and I haven’t had to unravel any today! Not much left to do on this one so hopefully I’ll finish it this weekend, then I can start work on whatever I decide to make for Jenny’s baby.

I had a tiny chat with Christine when she was on her way home from the airport, because Mommy hadn’t answered her phone. However, we had just really got talking when Mommy called her back so she ended our call. Obviously I am not interesting enough.

And Trump is trying to start World War 3 with North Korea. Two baby men battling with their egos. We’re fucked.

Orlando the Manatee.

I made this months ago, but didn’t want to put up a photo until I knew he’d arrived at his destination.

The 11th of April. 

Surprisingly good breathing today. Especially considering the fact that this morning my sats were 87, but now they’re 98 on air. I am very glad about this because I have had an oxygen-induced headache all day. I have managed to be off it since lunchtime, but still the headache persists. 

Rosemary came for one of her lunches with Mommy, so she and I had a lovely conversation about surgery under local anaesthetic and the way nurses have to try to distract you, while Mommy heated up the soup. When it was ready, they ate it in the dining room, while I ate my lunch and watched Agents of S.H.I.E.L.D. 

She had to go home to walk the dogs, so then we watched last night’s Criminal Minds, and were sad about Reid being in prison. I so want to read ahead to find out how he gets out (surely he must) but I don’t want to spoil it. 

Mommy went to Grandma’s, and I sat and crocheted while listening to the Pappy’s episode of Comedian’s Comedian Podcast. I also had a look at MyHealth and have discovered I have appointments in May with Mr. Titley, the plastic surgeon Miss Byrom was going to write to about me, and with the eye people. Always finding new things to fix. 

The 12th of April. 

Two good breathing days in a row? What can I have done to deserve this? However, I can only have one thing right at a time – the left eye has been irritated and blurry all day. So I can breathe, but I’m sort of half-blind. 

This morning, I was very slow at getting up, so all I got done after breakfast was sort out my appointment for a physio assessment, which will be surprisingly soon – the beginning of May!

After lunch, Mommy and I went out into Sutton. We needed multiple birthday cards, which were much more difficult to source than you might expect. It took three shops to find a suitable card for each chap. I had to get an Easter card for Grandma, and some hand cream and shower gel from Boots. Super exciting. I was quite grateful that I didn’t need to wear the extra oxygen on, because I did not feel like having to deal with the stares of all the youths who are not in school. 

When we got back, we watched The Oliviers, skipping that speeches we had not interest in, and I did some more crochet. I need to pay a bit more attention to what I’m doing, because I had to unravel a lot today because I found a mistake that I couldn’t ignore. Bah. 

The 3rd of April. 

I am so tired. Not just physically tired, but mentally, I am exhausted. I had Zopiclone last night which worked, but I don’t know how much good it did. 

Really, I feel like I am waiting for each day of the next three weeks to be over. That’s when my venoplasty is, but it by no means will fix everything. Well, it should fix my arm, but I’ve lost faith in its efficacy. I don’t know. Recovering from the pneumonia is really frustrating because improvements will be so incremental that I won’t even notice I’m getting better. I’m just hoping with every part of me that I’m not still needing oxygen at Machynlleth. Then there’s my back pain to deal with – I have an appointment at the GP to sort out starting the patches, which I really hope work because it hurts so much at the moment, I can’t even force myself to sit up straight. Then there’s my eye, no longer really causing me pain, but I can’t see out of it effectively – everything on that side is a blur. I haven’t got my follow-up appointment at the QE yet from when I saw the eye man in February so I need to ring up the consultant’s secretary about that. And let’s not forget the gynae issues that take up a chunk of each day too. 

I have nothing in the diary to look forward to in the next few weeks either. I’m worried the heavy cloud will descend once more. 

The 4th of April. 

Slightly improved today. Not physically, but mentally. I had a terrible sleep, tossing and turning, so my plans of extra sleep are not going brilliantly. 

Bad sleep has resulted in bad breathing, and even with 3 litres of oxygen, showering was quite the ordeal. It was not even that difficult in hospital, although that time I was not particularly active. Anyway, not an especially productive morning. Essentially, I got dressed. 

This afternoon, I let Spike out for a little explore before his lunch, and we had a very pleasant time. I rubbed his belly lots and tried to take pictures, but he doesn’t stay still long enough. Mommy took Grandma out into Sutton, and I sat and finished crocheting the most recent doily while listening to episodes 4 and 5 of S-Town. It is such a sad, sad story, for everybody involved – I can’t think of a single person who is having what might be called a relatively easy life. And it’s so complicated, and I doubt it will all be resolved in the next two episodes. Much like the last two books I have read, with their unsatisfying endings. I need something wrapped up neatly in a box.

The 24th of March. 

Very little to report today. I spent my morning writing all about yesterday, then put it into a blog post. I had some terrible news that James (who colours my hair) is moving to London in May! I’m very pleased for him but also very upset for my hair. I have now booked in to see him and Michaela next week, as I planned on getting it cut on the day I went into hospital, so on Tuesday I’ll have a chop and we’ll work on a spectacular finale of our relationship. 

My breathing has not been great, and that’s because when I’m just on air, my sats are only 90. Now I’ve bought a home sats monitor, I’m obsessed with checking them. It seems I have good reason to be though. 90 is not good enough. I’ll have to keep an eye on them and if they don’t improve we’ll have to see what the doctors think. Can I just get better please?

The 25th of March. 

Okay if this is recovery it is very intermittent and confusing. I slept with the oxygen on, took it off when I got up (which was late because I forgot to set my alarm) and by the time I’d got dressed, my sats had hit 85. This did not bode well. However, during the morning, I started feeling better. I took the oxygen off, and suddenly it seemed I had improved – I’ve been above 95% on air since then. I don’t understand. 

In other news, I checked MyHealth last night on a whim and saw that I have a venoplasty date! 24th of April. A month away. By the time my arm deflates (that’s if it works this time), I won’t be able to wear the rest of my jumpers which have been waiting for the past three months because it’ll probably be warm again. 

For much of my day, I sat and watched episodes of Buffy on the SyFy channel while I crocheted. Every so often I have checked my sats and they’ve been okay, so I think I’m just going to have to see how I feel every day and see if the trend is up or downward. 

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 10th of March. 

The next several days are going to be much of a muchness, I think. I saw no doctors until this afternoon, so all morning I sat, waiting for them to appear, but for naught. Still, I had quite a pleasant time; I listened to Jimmy Carr’s Desert Island Discs and he chose I Will Follow You Into The Dark as the one song he would take which was correct. The rest of my time, I had Victoria Derbyshire/the news/Daily Politics on while I crocheted. I am very happy that I am able to do it again, now I can bend my left arm without jabbing the cannula needle into my tissue. I am developing some delightful bruises across my arm, it’s very attractive. 

Mommy came with coffee and lunch, and I was very happy for caffeine because I had none yesterday and I had a bad sleep because people kept doing things to wake me up. I think there should be some sort of rule that if I have not opened my curtains or buzzed you to open them then leave me the fuck alone in the morning. Bah. 

The doctor who has been wanting my blood all week came to see me this afternoon while my bed was being changed (she does have a name, it is Maria, and she did get some blood once I had the line) and she had some results from my tests. Bronchoscopy hadn’t grown anything specific yet but there is definitely infection, although she started by saying “There are no malignancies, no cancer” and I just thought WELL GOOD like I was not aware we were even looking for that but great news, thanks. My CRP has come down to 85 from 164 on Saturday, but it should really be less than 5, so I have a way to go. But the infection is responding to the antibiotics, so now we just have to keep going until it goes away. She asked about bringing down my oxygen, and I tried to explain how it feels when I take it off, but everyone seems unconvinced when I tell them while I am wearing the oxygen. She suggested I try taking off the oxygen for a little while then having my sats measured, just so they can see what they are. There was a period this afternoon while I was just sitting crocheting, no great exertion, so I took the oxygen off for 45 minutes, so my sats would definitely be only measuring the oxygen levels in my blood when I was breathing just normal air, no extra oxygen to prop them up. We got a nurse to come and check them, and they were 86%. 94% is probably the lowest that doctors would deem acceptable, so when the nurse went to report back what mine were, I was told to put the oxygen back on and to not try this again. I felt pretty triumphant because even though I was not breathing brilliantly, I was right and that was most important. When I breathe, I can’t get all the air out before I need to take the next breath in, unlike a normal person, so when I exert myself, it gets worse, which is part of why I get breathless so easily. At the moment, without oxygen, it feels like I am slightly exerted all the time, and if I don’t control myself, I might start to hyperventilate. 

Anyway. We have been watching some Crufts which is such fun. So glad I did not get tickets because I would be so annoyed that I couldn’t go because I’m poorly. Definitely going to be here until at least Monday, probably escape towards the end of next week if my CRP continues going down at the same rate. 

The 11th of March. 

So, same again. Except no doctors at all today. 

I had a late night, partly because I didn’t get my meropenem until just after half past eleven, and because there was a man calling out for a nurse for ages, and not using his buzzer like a courteous wardmate. Eventually, I closed my curtains and hoped he would eventually stop. Shortly after, I heard a loud crash, and the emergency buzzer. It emerged that there was something actually wrong with the loud man, and he wasn’t going to be making any more noise that night. He didn’t die or anything, but he was not well. Still, somebody probably would have attended to him earlier had he used his buzzer. If you seem to have the energy to call out without any real sense of urgency for a long time, it sounds like you’re not that ill. Well, in my opinion. I did feel a bit bad for being irritated but I am sure he is fine. That is what I’m telling myself anyway. 

This morning I managed to get the staff to pretty much leave me alone after my first set of obs, so I didn’t keep getting woken up. I set my alarm for 9 so it’s not like I’m having enormous lie-ins but I need a lot of sleep, especially now when I am poorly. Being woken up for breakfast at half past seven when I have my own and will eat it when I choose to is not going to help me get better. When I did get up, I listened to Radio 4 and just sat and crocheted all morning. My friends Vicky and Laura were going to come visit, but Vicky had a migraine so we have rescheduled, and I texted Mommy to ask her to come in earlier, as she was going to come at 4 instead of lunchtime as usual. Becky was going to come with her, so we let her know the change of plan and she was having lunch with her parents in the Jewellery Quarter so got dropped off after that, and they actually arrived within minutes of each other. She has been on a residential with school this week, so I told her about the exciting/upsetting events of the past few days, and she then told us all the stories of her week. As a pupil on a residential, you cannot imagine the amount of responsibility and pressure on the shoulders of the teachers looking after you. I don’t think people realise that as a teacher on a trip, there is not really any time that is a holiday because you are stressed about the kids in your care for the entire time. I could not do it. 

We had a great time watching things out of my window today – I have a very good view of the helipad, the car park of the old hospital, and all the floors of the middle third of the hospital, so we can watch everything that’s going on. The helicopter came down today (as it does most days to be honest) and I noticed for the first time all the people in the other wards looking out of their windows. It felt like we were a little community. Later on, just as Becky was about to leave, there was drama with what appeared to be a drunk man and three security guards, who would not let him into the car park. He was eventually taken into A&E, where I assume he had come from, and we saw no more. 

Mommy left a little earlier than usual, and I am going to spend my evening watching Crufts, then Room is on Channel 4 at 9 and I never got to the end of the book, so I thought I may as well watch it while I am here and have the time!