Archives For crochet

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 22nd of March. 

I have been struggling again today. Needed oxygen on and off all day, to the point where I didn’t think I could cope with a visit to the chiro. I was supposed to be there at twelve, but the thought of going inside from the car, getting changed and all the movement involved in the manipulation just seemed impossible. We’ve moved it on a week when I will hopefully be feeling better. 

We did have to go out, but I just stayed in my chair and concentrated on breathing. The trip was necessary because I have run out of facewipes and need a new toothbrush, so I got all of those things from Superdrug and we returned home. I know, such excitement.

The rest of my day has just been sat in my armchair, finishing up the bunny and watching the horrors from London unfold. Some of the team from Anthony Nolan were there, including Emma, one of the other young ambassadors, to thank MPs for defending second transplants. They’re all fine, I think just got very bored and wanted to go home. 

In a way I’m only surprised this hasn’t happened here sooner. I have nothing poignant or useful to say. Speculation is pointless. Let’s not be afraid. 

The 23rd of March. 

Well, the majority of today has been rather dull. Mainly crocheting, although it was made difficult by the fact that the vision in my left eye has been a bit blurry all day. I had been ignoring it, until I actually looked at my eye in a mirror and saw a weird film that has appeared across the top of my iris. 

This was somewhat concerning, and considering my history, we thought it was best to get it checked out. It was gone five o’clock, so we decided it would be better to go to the eye hospital rather than the QE. However, they close at seven and it takes a good half an hour to get there so we had to get a wiggle on. 

I was triaged, then we went to sit in the waiting room. It’s an odd sort of place because you just wonder what is wrong with the eyes of all these people, as it isn’t generally obvious (except for the man with the eye patch). We were told it would be a 2-3 hour wait, but a nurse called me in after about ten minutes. I explained the problem and ran through my basic medical history, then I tried to read some letters off a board (quite pitifully). She asked if I wanted to wait in a side room instead of amongst the rest of the patients, which I was very grateful for, partly because I could hear many coughs and sneezes but also some very annoying children were out there. 

We then sat and read our books for an hour and a half, until a doctor came for me. He looked vaguely familiar, and we quickly realised it was the chap I saw at the QE in February, but he’d got new glasses. How fortunate that doctors like to spread themselves about. I had the letter he’d written after seeing me before on my phone, so he read it to remind himself of my case, then had a look at my eyes. He whipped out some eyelashes again but generally he was not too concerned about what he could see. It doesn’t look much different to what he saw before – apparently the film has been there some time, I have just not looked at it. Basically my eye has just got a bit angry and inflamed. I don’t need to really alter my treatment apart from an antibiotic ointment and using more lubricating eye drops. This was very reassuring, and even though it turned out to be nothing, I’m still glad we went. 

When we got home at nine, I had a present waiting for me from Denise, which was a Pusheen notebook and get well soon card! Super cute!

The 20th of March. 

Feeling slightly better today – I’m going to try going to sleep earlier and getting up a little bit later than I would otherwise. I think I’m going to need as much as reasonably possible for the next several weeks. 

This morning I put up a blog post, and remembered to print off the tickets for Jon Ronson tonight. We’re going to see him talk about psychopaths at The REP. It’s been a long time since I read The Psychopath Test so it’ll probably feel all brand new to me again. 

After lunch, Mommy went to see Grandma, and I had a mini Agents of S.H.I.E.L.D marathon while crocheting Lauren the angora bunny. Finished the head now and snipped all the loops so she’s going to look very furry. I’m not sure where I’ll place the eyes and nose amongst that fur.

When she returned, we watched the second and third episodes of The Replacement. That was bloody unsatisfactory. Not sure why they had to rush the ending so much and fill the last fifteen minutes with nonsense. Frustrating. 

Speaking of which, we tried ringing Tracy from interventional radiology today, but no answer. 

The 21st of March. 

An in-between sort of day. Went to bed late because of Jon Ronson, so I’m tired, but not to the point of needing oxygen. Just enough to not really be able to get a deep breath. 

This morning, we caught up on the episode of Broadchurch we missed last night (just throw a red-herring rapist into the mix) and saw a lot of news about Martin McGuiness. He is still the main news this evening, so nothing else can have happened today. 

Just after lunch, Jen came round with a bunch of flowers from Cats Protection which are very pretty. She couldn’t stay long, but she had time to show me the “physio” I should be doing, which involves putting my feet up, a hand on my forehead, and the other one clicking at people to bring me things. 

This afternoon, I’ve been catching up on more tv and crocheting all four bunny legs. Ears and tail left, and I think I’ll have just about enough wool. 

We finally managed to talk to Tracy this morning and she’s looking at early April for my second venoplasty. I know there isn’t much of March left but that still seems an eternity away. I’m wearing the compression garment but all it does is squeeze me down by a centimeter and hurt.

The 18th of March. 

I have an oxygen-induced headache because I’ve had to use it much more today. I don’t know why, it’s not like I slept badly or took any lorazepam, just the breathing has been worse today. I could tell when I was getting dressed that I was struggling, and I’ve had to have it on for most of the day, even when Daddy and I went to see Beauty and the Beast. 

It was the first time I have been in a public place that is not a hospital while wearing specs. It was a moment I have been dreading – being in a wheelchair and wearing oxygen is, in my mind, the image of a visibly sick person and I never saw myself as that. Even when my breathing has been bad, I’ve never been able to cope with the idea of myself going out with oxygen. I suppose it is the immediate sense of pity it inspires that I can’t bear. In my wheelchair it is not quite so bad, I am able to retain some sense of independence, but needing extra oxygen just to exist, people’s first thought is “Oh that poor young woman.” I couldn’t look anyone in the eye. 

The film is magical. I didn’t know if they could match Be Our Guest from 1991 but they did and more, and I was delighted to see the line “I use antlers in all of my decorating” get the prominence it deserves. I nearly cried several times, for more reasons than I care to put down, but for as long as I could forget myself, I had fun. 

The 19th of March. 

My eyes hurt and I am tired. I don’t understand why they’re sore – they’ve been getting much better since I started the steroid eye drops but today they are not good. Blah. I think I’m knackered just from being poorly. Stupid pneumonia, this is going to take weeks to get better. At least I have not needed the extra oxygen today (except to go upstairs/eat a main meal). 

This morning, I watched Sunday Brunch and finished off another doily. Actually, I finished it just after lunch, and with impeccable timing, that was when Becky and Alison rang the doorbell. They went to the knitting and stitching show at the NEC yesterday and had bought us presents! Mommy has a very cute set off Christmas decorations to make (there will be no room left on our tree this year for any decorations that were shop-bought) and I have Lauren the angora bunny from Toft to make! It will be a welcome change from table decorations. 

When they left, I went upstairs to try to nap, or at least lie down and rest. I put on Gardeners Question Time and closed my eyes for 90 minutes (I listened to a podcast too) but I didn’t do any sleeping. I don’t know if it helped, but I didn’t have the energy to do anything else. 

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! 

The 26th of February. 

Happy Birthday Mommy!

I had a rather dodgy sleep, I think because of eating rich food much later than usual. Fucks up my system. 

Mommy opened her presents while I ate my toast. I gave her a teeny pot for putting herbs or a tiny plant in, and an enormous book of pictures of dogs. It’s got nowhere to live, but it amused her, which is what’s important. Besides, Tuesday is her proper present. 

She and Daddy went to pick up Grandma, while Christine finished cooking all the food and I wrote up a blog post, then twiddled my thumbs until it was time for lunch. As soon as we saw the Easts/Reames materialise with cake, we were up and opening the door. So hungry!

The afternoon has been rugby, drinking and eating. Christine, Becky, James, Jonathan and I decamped into the living room, where there was much bickering and teasing, but all in loving intent. We are essentially family.

Christine had to leave at twenty to four, so we cut the cake, but mine is still beside me, waiting for my tummy to have room for it. I’ll get there.

The 27th of February. 

Oh dear, I had another terrible night. It took me hours to fall asleep – I think on Tuesday night I might have a Zopiclone if things don’t improve. I would do it tonight, but I’d like to remember tomorrow. 

No excitement today. I rang the GP about getting some more stuff added to my repeat prescription, and left a message for Imelda, Andrew’s secretary, but she hasn’t called me back. Will try again in the morning. 

Otherwise, I have been crocheting, and Mommy and I watched the final three episodes of Case. It was not completely satisfying – I don’t see why the murderer had to get killed, instead of being put in prison, especially as they were on their way to arrest him. They’ve left it open for a second series (on a different thread) but I don’t know if we will bother.

I am very excited for Mommy’s birthday surprise tomorrow. I hope she enjoys it.

The 24th of February. 

Ugh, I feel like trash. Have done all day. I had a bad night, and got woken up early by the man who came to fit the carpet. Joy. It took longer than usual for me to get up and dressed, because I kept having to stop to breathe extra oxygen. 

Since then, I’ve kind of felt like I’m suffocating all day, so am trying to do very little. I can’t get a deep breath in, and neither my inhaler nor extra oxygen have helped. Just have to hope that a good sleep tonight sorts it out. 

Three good things to mention: the compression garment hurts less today, Christine has come home for the weekend, and NHS England have committed to definitely routinely funding second transplants! Finally, someone in there saw reason/had some compassion and the funding has been reinstated. 

The 25th of February. 

Breathing is very difficult and it is making life very tiresome. I am back at the stage where I am no longer capable of washing my own hair because the activity is too exhausting, and the shower is one of the few places I cannot take the oxygen. I have been able to take deep breaths though, so there’s that. 

Compression garment is back to being painful. Obviously yesterday was a fluke, worse luck. 

Had a really exciting afternoon – did my Cats Protection admin, which involved taking cats who were adopted last year off Catalog. Basically inputting all the microchip and neutering data, and all the adopters’ details. Really, very thrilling. Then, while not paying attention to the rugby, I worked on a new doily. I am such an old woman. 

This evening, we have been out to Tom’s Kitchen at The Mailbox for Mommy’s birthday (which is tomorrow). It didn’t start off brilliantly because Daddy insisted on parking on the street, so we got wet going in, then the disabled doors were broken, so we had to carry my wheelchair up steps to get inside. So I was annoyed, but then I got over myself. I had to have the truffled mac’n’cheese to start, because it is ridiculously delicious, then I had roasted pollock and pea risotto, and that was also excellent. I had no room for pudding though, and was very ready for my bed when we got home.