Archives For March 2017

The 28th of March. 

I have felt a-fucking-trocious for most of my day. High levels of oxygen have been required, and even then I have not felt so good. 

This morning I was needing 1.5-2 litres of oxygen just to sit and eat my breakfast. I finished the monster doily, then there wasn’t much morning left before we had to go out to Black Sheep. 

Obviously I took a small cylinder of oxygen with me, and I was doing alright to begin with. However, after James had put the lightener in, I had to go to the bathroom and I knew I wouldn’t get there without help. Because of the fumes and the spray etc in the air, I had to put it up to 3 litres and I was still struggling, but I didn’t want to go any higher for fear of ploughing through the cylinder. I had to text Mommy to get her to bring me a new one mid-appointment because the small ones only last 1.5-2 hours on high volumes. 

I told James off for leaving, but I forgive him because his reasons are good and Saskia will take care of me. We have nailed it with the colour – I look like a load of pixie sticks have been tipped onto my head. In a good way. Michaela is having another baby so I congratulated her, and she gave me a trim. 

I got home at about half past four, so not much has happened since then, but I’ve got the oxygen down again, thank god. I felt absolutely awful. 

The 29th of March. 

Vast improvement. I had a crappy sleep which I am putting down to low sats – when I sat up, they were 88, despite me having been on oxygen all night. However, I have got better since then.

This morning, I wrote up the blog post I should have done yesterday, we had a delivery of oxygen, then I had my rescheduled chiro appointment from last week. I was considering postponing it again, but I did not feel too terrible and my back had started protesting. 

I took the small cylinder with me, so I was able to get into all the necessary positions, which was good because pretty much all of my back had tightened up. Surprisingly, my neck didn’t need any crunching, just massaging into submission. 

Once home, we had lunch, then I updated my phone software (I know) and took a lot of selfies to document my new pretty hair. I started crocheting a new doily, and I’ve got my oxygen down to 1 litre. I wish we could work out what causes me to need it more some days and not others. Knowing me, there is probably no reason.  

The 26th of March. 

Breathing is reasonably good today. At one point, my sats were 100% on air which could be deemed a miracle. At other times they’ve been like 93 but one has to take the wheat with the chaff. 

This morning, I gave Mommy her card and that biscuits I had bought her. Christine bought flowers, I bought biscuits that look like flowers. Which I will also get to enjoy. 

I wrote up a blog post, then I talked to Christine. She rang for Mommy, but she was out picking up Grandma from church so I regaled her with tales of all the things I have to put in my eyes now. There are only so many drops and ointments I can use before they start to leak out. I really don’t know how this blurriness can be fixed. Lenses aren’t going to work; this is medical. Such is life. 

We had Sunday dinner at lunchtime while we watched The Wizard of Oz, and I realised just how awful a character Dorothy is. I’ll have to see some other Judy Garland films and see if she’s actually terrible or it’s just a one-off. 

Now I am back to my usual Sunday afternoon of crocheting while sport is on in the background. The way I like it. 

Thinking of a lot of my friends today. Those who have lost their mums, those who have lost their children, those who are new mums and those who never will be. All my love to all the women in my life. 

The 27th of March. 

Not so good. Needed oxygen pretty much all day. Not ideal, but I haven’t had to go out anywhere, so not really a problem. 

Either my alarm didn’t go off, or I slept through it. Not by too much, but I still find it annoying. I hate sleeping too late because it feels like I am wasting the morning. However, I do need more sleep than usual at the moment. I wouldn’t mind but I keep having dreams about spiders that can jump and I’d really rather not. 

I have pretty much spent the whole day crocheting. I am working on a doily that has turned out to be more of a bloody tablecloth. I have just been beavering away solidly, stopping to eat and to talk to Shaki when she called to see how I am doing. I miss having kitties to pet so I’d like to start fostering again soon. 

Hope my breathing is better again tomorrow. I will probably take some oxygen to Black Sheep anyway just in case, but it would certainly be easier if I didn’t need it. 

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 16th of March. 

I am home. HOME! I have to go back tomorrow but eh, I get to sleep in my own bed tonight and that is all I care about. 

So the doctors came to see me this morning and said they’d stopped the mero after my 6am dose, so then the only thing that was left to sort out was my oxygen. I explained to them that I do have oxygen at home, so if that was all that was keeping me in, I was very much wasting a bed. They were surprised but pleased to learn this, and said that yes in that case you can go, but we need to confirm with Dr. Sutton. 

Then I spent the rest of the day waiting for it to be confirmed. However, it emerged at about half past four that actually, Dr. Sutton has been on a course all day, but he’d probably agree so that’s fine. But then there were issues with changing the dressing on my line and arranging nurses to flush it. Then they wanted me to come and see the vascular team at eleven o’clock tomorrow, but earlier today the pain team had phoned, saying they’d had a cancellation tomorrow and did I want to come at eleven? Of course, I said yes, so tomorrow I’ll see them, then go up to 516 and they’ll bleep the vascular team, and we’ll talk about my line and hopefully sorting out the motherfucking venoplasty I’ve needed for three months. 

We finally left at six and I am at home and I am really looking forward to my bed. 

The 17th of March. 

Oh, sleep in my own bed is good. I did wake up a couple of times, but so with it for duvet and electric blanket. 

I didn’t get the lie-in I’ve been waiting for because I had my appointment at the pain clinic at eleven. We left at ten to allow for traffic and parking, but even that was not enough as there had been an accident in the Queensway tunnel which made the traffic utterly solid. It was incredibly tedious, but we eventually got to the QE only half an hour late. Thankfully, I was still able to be seen (I did ring to let them know I’d be delayed) and met a Dr. Blaney who has several avenues of thought we might go down – I will start with a patch via the GP, and we have multiple drugs I can try to hopefully find one that works and doesn’t give me side effects. He’s also going to refer me for physio so I will get that appointment at some point. There’s also the option of steroid injections if nothing else works. 

After that, it was up to 516 to see the vascular team about my line. It emerged that nobody up there really knew what was going on, until one of the doctors who’s been seeing me arrived. She went to see Ben about what he wanted, and we went to have some lunch. While sitting in the foyer, I saw a girl I met at Euston recently who I got chatting to about NG tubes (she had one) which was extremely random, but really good because I wasn’t able to get her name or anything before, so now I have a new pal!

Shortly after seeing her, my phone rang, and it was nurse Connor. The doctor had come back and they’d spoken to the IV team and basically, he was going to take my PICC out. That was grand, so we returned to the ward, and I lay down in the consultation room and experienced the lovely sensation of having something really long pulled out of your veins. It’s not painful, but there’s definitely an awareness there. I don’t really remember the last one coming out because I’d had midazolam and they let me do it. Then I had to hang out there for half an hour to make sure I didn’t bleed everywhere, then I escaped (again)!