Archives For September 2014

The 25th of September. 

I had a marginally better sleep, but have been out of the house for approximately 8 1/2 – 9 hours of the day, which is very long for me.

Had to go to the sorting office to pick up a parcel that came while we were out yesterday, then we went into Sutton because there was a new Topshop opening and the first 200 people through the door got a free goody bag (brown kohl pencil, red lipstick and nail glitter – disappointing). I bought a jumper, then a coffee and Mommy took me to Bad Apple to get my hair cut and coloured. Not had much taken off, and now it’s pink and mauve and amethyst. And I can now say I share a hairdresser with a supermodel – Michaela did Jourdan Dunn’s hair at the Topshop show at LFW! Fancy. We had to go straight from there to photopheresis so I ate my lunch in the car. It took a bit longer than usual for no particular reason and we got home at about six.

There really is nothing else to say. I feel horrible.

The 26th of September. 

I was not expecting to end my day in A&E. I woke up feeling puffy, and had it confirmed by Mommy saying she couldn’t see my eyes. We were supposed to go out today but my face is so massive, I didn’t want anyone to see me because I feel like a freak.

I took a double dose of furosemide in the hopes that it might alleviate some of the swelling but by lunchtime, my arms had almost doubled in size and I was getting stressy and tearful.

We rang Nicola, one of the haematology clinical nurse specialists who said considering it was Friday afternoon, the quickest way to get anything done would be via A&E and she’d let the doctors know I was coming. We packed a bag (because it’s a guarantee that if we don’t take one, we’ll need one) and set off, and really everything went very efficiently; we didn’t have to wait long at all, which was just as well as there was a man in the waiting room making the most revolting sniffing/snorting sounds which was upsetting.

It turned out the doctor on call was Igor who looked at my arms, face and veins and went to talk to the interventional radiologists. He brought a consultant called Andrew Willis back who has looked at the images from my last venoplasty and come to the conclusion that I need a stent (possibly more than one) putting in, but he didn’t want to do it on a Friday night with a skeleton staff as it’s a fairly complex operation and he would rather do it on Monday with a plan and a team. I have to say I prefer that option too.

So I’ll have clexane injections for two days, go in on Sunday night and hopefully be fixed by Monday evening!




The 23rd of September.

A truly excellent day. Apart from lack of sleep but that is negated by the good stuff.

I really didn’t want to wait what could have been another month for my new phone to come, I decided to reserve one of the phones that are being released in shops each day. I stayed up until midnight just pressing refresh on my iPad and listening to podcasts, then about quarter past twelve I got on the site and reserved my phone to be picked up at eleven today! And I’ve cancelled the online order obviously. Then I had about two hours of sleep but my brain was obviously just too excited so I’ve had lots of coffee today.

So first thing this morning I made sure my phone was all backed up (didn’t take long as I did it a few days ago), Mommy went to the chiro at ten, then we went to the Apple shop! A man wanted to just rock up and buy one, more fool him. A very nice man sorted it all out for me, but I didn’t buy a case which I now regret. Go back tomorrow before photopheresis and get one.

Then I got a salted pretzel roll from M&S (yusss) and Mary Beard favourited my tweet which was a win.

This afternoon has been lots of phone stuff which is tedious but fine when it’s exciting new gadgetry! I’ve named her Joan after the only female pope.

The 24th of September.

So tired I can barely breathe. I took a Zopiclone but it didn’t work, then I woke up at quarter past twelve, one, two, three and from quarter past four I was awake. So I’m just exhausted.

We went into town to get a case for my phone, (well, for the back of it until TwelveSouth bring out a BookBook for the 6 plus), some chunky wool and thicker crochet hooks, and I popped into 6/8 for a latte and picked up a sandwich for my lunch.

621 was very busy so I had to go to the waiting room for a bit but I eventually got onto a machine, and it all went very smoothly. I thought we would be late for liver clinic but then James wasn’t even there so I didn’t stay as no one else there knows me. We saw Monica on the way out and she hadn’t seen my face since before the bruising so we had to have a chat about that.

So we came home ear and I crocheted a wee sock to protect my phone’s screen inside my bag.

Now it is Bake Off and bed!





The 21st of September.

Tonight we have a mystery! It has been a lorazepam day, therefore one of very little brain activity. Now I have my wool, and the little bit of crochet, but my hook is missing and we can make neither head nor tail of where it’s gone! And I do not have another size twelve so I will just have to go and buy one, at which point I’m sure it will miraculously appear. Stupid sneaky crochet hook.

At lunchtime I had Heinz Veg Chilli Beanz and I can just about cope with that level of spice, it seems. We caught up with Xtra Factor and they had the man in the sequinned vest that we saw in Manchester! He was mediocre and should have sung his other option of NSYNC.

Becky had a very short visit to update us on gossip, but I am mostly concerned with waiting for my new phone and wondering where the heck my crochet hook has gone!

The 22nd of September.

After several quiet days, this has been a very busy one! I felt the need to do a lot of things, mainly replace the crochet hook I lost last night.

So after breakfast, Mommy and I went into town where we started at the Apple shop to see if they sold any cases for the new iPhones that protect the front but they do not. Then it was to the haberdashery section at House of Fraser for crochet hooks. However, the sizing on them has changed, so I was trying to guess by looking but it wasn’t going very well and I asked an assistant for help. She showed me a handy converter that they sell and so I got the correct one (and another one), yay!

I haven’t been wearing my Pandora bracelets for a few weeks now, since my arms swelled up, so today I bought a new, medium-sized one and have re-organised them all. Even the reindeer charm is out on a trial run. I also needed some face moisturiser and nail varnish remover, got that from Superdrug. Oh, we bought a copy of Where’s Spot? for baby Dylan who we’re going to squidge on Friday! I’d seen a really nice leather/shearling/wool jacket on the Superdry website so I tried that on in the shop and bought it, along with a very snuggly infinity scarf thing. Then I got a salted pretzel roll and a Belgian bun so I had a great morning.

This afternoon was very productive too! After lunch I organised all my necklaces onto jewellery trees, my summery nail varnishes onto the rack that I will not be sporting this season. When I came back downstairs, it was time to clean out Hamilton’s cage. So that’s a fairly active task (for me) and tonight I’m pretty knackered.





The 19th of September.

I got up about eight today after waking at half past four and putting the radio on to hear what was going on with Scotland. I sort of drifted in and out of the speeches of various politicians. Salmond just sounded so bitter, and I am not surprised he’s resigned (although upon finding out on the radio on the way home from the cinema, I wasn’t sure if he was even still alive, the way he was being discussed)!

This morning I finished the scarf I’ve been crocheting, so now I’ll have to start another one – I can only do rows, I can’t crochet in the round. I have tried to learn from YouTube and I always mess it up.

This afternoon, I started writing another essay, as I really needed to do something more cerebral than watching tv. Although then Daddy and I went to see Boxtrolls (hence hearing about Salmond on the radio on the way home). It was fine, but I think I was expecting it to be better. I do not feel like it has enriched my life. Oh well. Swings and roundabouts.

The 20th of September.

So tired, I think I need a lorazepam day tomorrow. This morning I watched Saturday Kitchen and read the paper, and this afternoon, Daddy and I went to see A Most Wanted Man. I thought we’d see two films this weekend, and next weekend it’ll be The Riot Club.

Becky came round with many tales of many places. They are all going to see Cats next week and I do wonder how Jonathan is going to cope with two and a half hours of it.

Apple have ringfenced the money for my phone but not taken it properly, which is massively annoying because I don’t know when they will, but when they do, that means it’s coming!


The 17th of September .

I am not as trembly tonight as I was earlier. It’s weird – it doesn’t seem to follow any sort of pattern. I just wish it would stop.

I had haematology clinic this morning, and Ram was indeed there. My left arm stopped bleeding so they had to go into my right arm too. Plus, they now stab me in the finger to check my blood glucose, so I had many little pieces of gauze. We discussed my steroid tapering, and he suggested 2mg per month which is a fucking joke. This made me immediately stare at the wall and say that this made me very unhappy before becoming mute. He asked me to elaborate, at which point I started crying because I had planned on being off them by the end of October, not in God knows how long. I will not be doing as he suggests.

We had a quick trip into town afterwards, just to pick up some train tickets and get some other bits, like a Vanilla Cappuccino doughnut from Krispy Kreme that was actually too sweet for me to finish. This afternoon, I wrote a bit about photopheresis and steroids and did some crocheting. My scarf is getting really quite long.

Bake Off tonight! Wednesday is the best.

The 18th of September.

Well I have just sat and crocheted all day. I had a brief break in which I finished writing the piece about photopheresis and steroids, but apart from that, it has been crochet and tv. Totally mindless.

This evening, we went to see Cats. I used to watch the video all the time when I was about seven, but I’ve never seen the live show. We were actually supposed to go last time it toured, which was seven years ago. It was the day I ended up in BCH having lots of blood transfusions because I was anaemic and the next day I was diagnosed with leukaemia.

So now it’s back and we went! The Rumtumtugger is my all-time favourite, and Magical Mister Mistofolees is the best song. It just makes me so happy.

It’s funny, I was just watching the dancers and our bodies are such polar opposites – theirs are so strong, whereas mine is as weak as a kitten.

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The 15th of September.

I woke up at twenty to nine this morning! Oh it was glorious. I can’t remember the last time I slept that late. I can’t imagine it’s going to become a regular thing though. That would asking too much, I think. I go down to 10mg of pred tomorrow though. Getting there! We will have to slow the tapering after 10 though – I do not want to jeopardise this. My plan to be steroid-free by the end of October is still on track.

This morning, Mommy and I went to Tesco to find me something to have as my main meal at lunchtime as tonight I was out at an OHS meeting, and for some reason, I was craving vegetable curry. After a lot of searching, we did find some and some pilau rice and then I was happy.

This afternoon, I tried to write about photopheresis, but the words wouldn’t come, so I watched crap on TV instead. I wasn’t very trembly today and it feels like a waste.

Then tonight was the OHS meeting. We actually had a quorum! Things got a little bit tense at one point, but were salvaged by an excellent idea from the headmaster and after a good hour and a half of chat, I got a lift home from Shiva and collapsed into an armchair. Bedtime.

The 16th of September.

I took 10mg of pred this morning and by tonight I’ve noticed all the blood vessels in my hands coming up so I had another 5. It’s fine, we just can’t jump in 5mg increments though. Need to taper a little more slowly.

My sleep the other day was a one off – I was up at ten to five again. So tonight I’m tired, cold and trembling. It’s been a very quiet day – I didn’t go anywhere. Although the majority of this afternoon planning a trip to London to eat things. I realised I don’t need to go to all the places, so I culled a lot and now we’re going on the 16th of October, yay!

Becky came round to tell us about school. It all sounds so stressful. Children are little shits now. I would never have dreamed of doing the things she tells us about. 

Clinic tomorrow. Hopefully Ram will actually be there this time.


The 13th of September.

It seems every day at the moment ends with me feeling terrible. I felt fairly normal this morning, but since about lunchtime, my heart rate’s been 113ish at rest (it’s normally about 83) and I’ve been extra breathless. I couldn’t even walk across the road to Becky’s for the party tonight.

I have spent most of the day in the armchair, rising to go to the kitchen to investigate interesting smells and see what else Becky had brought to put in our fridge. For the majority of the day, the house has smelled of pulled pork, plus there were cheesy dough balls and all sorts of other things going on.

I read a lot more of The Girl With All The Gifts too – nearly finished! I also ate a lot of sweets whilst doing so as I’ve just felt so crappy and eating all the things seemed an appropriate response.

And tonight was Becky and James’ engagement party! I pretty much stayed in one place for the whole time – in the kitchen. Outside was cold and the effort required to stand up for a long time was draining, so I sat at the kitchen table and talked to whoever passed through. It also meant I got first dibs on all the food. And there was so much food. Four lasagnes, falafel of different types, bread, turkey, chicken, salmon, mini pies, our pulled pork, plus so much more and then many salads etc. then all the puddings! I can’t even list them all.

I left after cake, because it was ten o’clock and I was wrecked.

The 14th of September.

We’ll tonight I don’t feel totally horrendous. Which is a plus. I had a relatively decent sleep after last night’s frivolities, not really waking up until nearly eight!

This morning was Sunday Brunch and finishing The Girl With All The Gifts. We had pheasant for lunch which Mommy brined before roasting and I think it definitely made it more moist than it would have been otherwise. This afternoon, I caught up with last night’s X Factor, spotting people we’d seen. I was also looking at loads of street food places and other restaurants that I want to go to in London but visiting them all would be nigh on impossible without a full-on itinerary for about a week plus a hotel and taxi fares because of the wheelchair. It just isn’t going to happen.

And we buried Oscar today. At the bottom of the garden, with Ceefer and Toffee. I was fine, then Daddy put the little box of ashes in the ground and suddenly we were all crying and Mommy was squeezing my shoulder very hard. Thankfully, almost as soon as we re-entered the house, Becky and James were at the door with flowers to thank us for helping yesterday so they then provided a very welcome distraction.

Part of me is really sick of life, and another part wants to punch that other part in the face because things could be so much worse.

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