Archives For London

The 11th of August. 

I have felt like total shit all day. It took me hours to go to sleep again, although at least I had no headache this time. 

This morning, I did a blog post, and I tidied up the blanket. Generally though, I have been curled up, trying to decide what to make for Pete and Sophie’s twins, and trying to ignore the fact that I am cold, tired and still full of wind. Indelicate I know, but it’s so frustrating how you can start burping after breakfast, eat multiple Rennies, yet still be massively uncomfortable come the evening.

I am considering taking Zopiclone tonight – maybe just one tablet, because I have to get up at stupid time tomorrow and I need to be properly conscious. I really hope I don’t feel quite so terrible in the morning, because I would like to enjoy the trip. 

The 12th of August. 

Phew. Pooped. Been up since five but it has been worth it. I have been a bit burpy and in some pain but I’m okay. 

So yes. The same way as last week, we bought breakfast and coffee at the station, and our journey down was largely uneventful, save for us having to move the man who was in our seats. Obviously the Euston people were nowhere to be seen when we arrived, so we got off on our own and sped down the road to St. Pancras. We almost missed our javelin train, but I got a seat, then a lot of evil looks from older women who had to stand. 

No messing about with the lifts in Westfield today; we went up in the car park and found Christine in the same place as a week ago. We made our way to our seats, but upon arrival, found the space full of fridges, so we had been reallocated. However, that was absolutely fine because we moved to seats halfway down the home straight which were way better!

First up we had the 110m hurdles in the decathlon, and in every single race at least one person fell over. Then we had some important races – the 4×100 and 4x400m relays, men and women. Our team got through to the finals of all, and we did lots of shouting and clapping, but what was most exciting was seeing Usain Bolt come out to do the heat, because he wasn’t expected to. Mommy absolutely lost her shit – I have never seen her more thrilled. It’s so funny, listening to the cheers follow the runners round the track. Less funny is when they tried to make us all sing Hey Jude, because nobody knew the words. Argh. 

We left after the 4×400, once we knew our guys were through as fastest losers. Since we’d had so much time spare last week, we went to Westfield for a leisurely lunch, and had pizza at Francis Manca. I would recommend, because their crust is soft, doughy and delicious. 

Needed some green juice and caffeine so went to Pret, then bade farewell to Christine and began the trek back across London. Euston team actually got us on the train in a timely fashion, and I listened to the new Kesha album all the way home. 

The 7th of August. 

Still some pain today, but not quite as much. I had a decent enough sleep, but I’m still tired too. Too much activity for me for one day; my body is taking its time to recover. I’ve got very little on this week, just respiratory clinic and we’re back down to London this Saturday to do it all again. I will, at least, not have a gig to go to, so I can just rest when we get home. 

I spent most of my day working on blog posts, typing up the 3rd to the 6th, then uploading all the photos and culling the shit ones. Got to decide if I take my camera again this week, or if I take a different lens. We’re sitting in a different place so I need to work out what we’ll be able to see. 

I think I finished about half two, then I made two more squares of blanket while watching some more Glow. I’ll have to lay them out to work out how many I’m going to have to do. 

Tomorrow, I think I’ll stop the pregablin. A week of the double dose has done nothing but make me sleepy, burpy and hungry. The hunger is fucking me up because part of anorexia recovery is learning to feed yourself when you’re hungry, but now I’m having to ignore the hunger, tell myself it’s just the drug, and it’s so confusing. 

The 8th of August. 

Back to pretty much normal levels of pain today. I’ve binned off the pregablin because it has done fuck all for two weeks. I’ll be going back to see Dr. Blaney and we’ll discuss steroid injections. Stupid spine. 

Today has just been crocheting squares for the blanket. I did two or three this morning, in between visits to the kitchen to check on baking progress, because we made chocolate, ginger and sesame cookies and chocolate cupcakes with coffee frosting filling. 

After lunch, had a quick hairwash (very little colour is left in my hair now), then Mommy went to Grandma’s and I got back to crocheting. I’ve now got sixteen squares and I watched all the daytime crime dramas Sky Living has to offer. I think I’ll do four more and see how it looks. I don’t want the baby to grow out of it straight away!

The 5th of August.

Oh god such a long day. I am in so much pain. I got up at ten to five because we had to be at New Street for twenty to seven, and that is too early for a Saturday. When we got there, we bought coffee and breakfast pastries, then sat in the assistance office until it was train time.

Arriving at Euston, we did not have time to wait for even five minutes for the ramp, so we just sorted ourselves out. Bought lunch from Pret, and a coffee to put in the thermos for later (Olympic Park coffee is vile). Then we bombed down the road to St. Pancras and got on the javelin to Stratford. I got the last seat, by sheer dumb luck. Thankful, because I can’t stand for six minutes. Upon arrival, we had to join the queue of wheelchairs for the lift, then had to navigate Westfield, trying to find a way to get to the corner of John Lewis where we were meeting Christine. The first lift was broken, and marshals didn’t know where we should go, so we ended up going all the way to the other end of the mall to find a working lift, then doubled back so we could finally get on the correct route and meet Christine. Found her, then joined the crowds heading for the Olympic Stadium. Got settled in our seats, in the disabled position just above the start line, so we had a great view of that, plus some of the heptathlon events that were going on.

For most of the morning, my eyes were killing me, and there was a freezing cold wind which I couldn’t seem to find respite from from, despite even putting up an umbrella to use as a windbreak, so I couldn’t enjoy myself as fully as I might have. I saw a lot through my camera lens, between drowning my eyes in drops and screwing them up tight. At one point, I wanted to drink the coffee we’d brought in, so I poured some out only to find it tasted really weird. I drank a bit more, then remembered that the woman behind us at Pret had ordered a soy milk cappuccino. We must have got that. No wonder it tasted so disgusting.

We saw lots of events – no finals, just heats, but it’s always fun to shout at people to run faster, and groan with everybody in the crowd when someone knocks the high jump bar down. It was so sad when KJT hit the bar on her final attempt, and we all watched her curl up in a ball on the mat, poor thing. We all felt it.

The weather made things interesting; we had several showers, and as we left, some huge rumbles of thunder. I’d been covered in the giant wheelchair poncho, so didn’t get wet when the rain came. We weren’t herded the way we were after the Anniversary Games, so we got back to Stratford much quicker than we expected. Started talking to a couple on the platform who also had a wheelchair, to find that their son is having a stem cell transplant this week! Tried to share the successes of my life to give them hope. No liver failure chat for first-timers.

We arrived at St. Pancras just after two, so had just over an hour before we needed to be at Euston. I suggested we go to Origin to have an actual nice coffee, so that took up a good half an hour, then we scooted down the rest of the round.

We picked up some reading material for the train, plus some Pom Bears, then off to the assistance office again! We’d barely sat down before we were sent to the platform, despite our train not departing for nearly thirty five minutes. We were told the chap would meet us with the ramp, so we waited out in the freezing wind for him to appear. After ten minutes, there was no one, so I rang to check the situation, and she said he was coming. We waited another ten minutes, and still nothing, so we hauled the chair on to the train, only to find the wheelchair position floor was covered in food and some other crap. I didn’t really feel like covering my wheels in that, so we folded up the chair and I sat next to Mommy. This turned out to be a smart move, because a couple got on the train with an old Westie who sat under the chair in front of me so I had a dog friend for the journey home! Then we picked up some pizzas for dinner and have about an hour in the house before I have to go out again for Regina Spektor tonight. Busy busy busy.

The 6th of August.

So. Tired. So. Much. Pain.

Regina Spektor was beautiful last night. She was, frustratingly, half an hour late on, but was so charming and brilliant, I forgave her. I never thought I’d hear Us live and it was so gorgeous. She is one of few singers who are just as good as their record if not better in person. And I was spotted by Hayley from school so we caught up afterwards which was delightful.

I am very tired now though. I got to bed after midnight, and slept until ten. I’ll still be having an early night tonight I think. Plus my back hurts all over, and my neck, and my bum. Having zero fat on there means sitting on non-padded seats all day leaves me in much, much pain.

This morning, once I was actually up, I wrote about yesterday, which was a long one. I’ll have lots of blog work to do tomorrow – got to get the photos off my camera before I do a post as well.

After lunch, I crocheted. Just crocheted squares for Michaela’s baby blanket and watched the new Orphan Black, which made me do a small cry.

We wear our scarves just like a noose
But not ’cause we want eternal sleep
And though our parts are slightly used
New ones are slave labour you can keep

We’re living in a den of thieves
Rummaging for answers in the pages
We’re living in a den of thieves
And it’s contagious

The 20th of July.

Second trip to London this week! So much wheelchair – my bum is not going to thank me. Left much earlier today, as the train was at half ten, so we could have lunch in Covent Garden before the show. We went to Timberyard because it’s my favourite, despite them not doing crodoughs anymore. I had a ham and cheese croissant, a chocolate chip brownie pie and a flat white, after which I was very full and had to undo the top button of my jeans.

We had to pick up the tickets from the Donmar at two, then we waited for Christine to arrive inside the foyer. The rest of the audience seemed to be elderly people, but then again, what can one expect for a Thursday matinee? Anyway, once she appeared, we went to find our seats and settled in for Committee (or The Public Administration and Constitutional Affairs Committee takes oral evidence on Whitehall’s relationship with Kids Company). We went because Naomi was involved in the development, and we were intrigued to see how it had turned out. It was a musical developed from the transcripts of the session in which Camila Batmanghelidjh and Alan Yentob were interviewed, plus testimonies submitted for evidence. Considering the material, it is interesting and entertaining. The set is very smart, and the performances of the singers are really remarkable. I’m not sure I entirely grasped the point, but I enjoyed it.

After the show, we went for a drink, then dinner at Hawksmoor. I didn’t really have much room in my belly, so I decided to go for some lemon chicken with Béarnaise sauce and buttered greens, while Mommy and Christine had steak/a burger, then panna cotta. I just wanted a lie down.

We paid the bill, then we had about an hour before we had to be at Euston, so we decided to walk/drive back. The weather was nice, so why not?

The 21st of July. 

Everything hurts. My butt hurts, my legs hurt, my back hurts, my neck hurts. Sitting in the wheelchair for two out of three days is very bad for my body. 

I gave myself a lie-in this morning because I was awake until two, burping. I don’t know why – another mystery of my fucked digestive system. So there wasn’t a huge amount of morning left after breakfast and coffee, and I spent what remained watching BBC Newsroom and writing about yesterday. Tomorrow I will write two very long blog posts. 

After lunch, I started crocheting the minion I am making for Herbie, while I watched Orphan Black. Three episodes done and most of his yellow body. I have much crocheting to do, so I will have to have some industrious days. 

The 18th of July.

London in the summer is my favourite. I was down today for the summer reception of the APPG for stem cell transplants at the Houses of Parliament.

I got to New Street about lunchtime, bought myself some food and coffee, and went to sit in the assistance office. They got me on the train nice and swiftly, and I settled down listening to some empowering tunes to get me pumped for talking to MPs. At Euston, of course, they were late to pick me up. They might have been just within the 5 minutes but I was bored and had to pee so got the chair off myself. Had an awkward moment at the disabled toilet where the man with the key tried to stop a woman and her daughter going in only to be told that the daughter was blind. Ergh.

I went to get another coffee, and although it was early, I thought I might as well just get my cab to Westminster, just in case there were delays because of security or whatever. I had a very perky taxi driver, who I educated about stem cells, and he ended up dropping me off quite a way up Whitehall, because otherwise we would have sat in very slow traffic while the meter ran up. So I beetled down the road in my chair, trying to avoid people and not get blinded by the bright sun. When I arrived at the visitor entrance, there were only a couple of people ahead of me, and they just x-rayed my bag and patted me down. No weapons here. I carried on through to the main entrance hall, and it was only quarter past three. The reception didn’t start until 4. Oh well. I texted Cassie from Anthony Nolan to let her know I was there, and proceeded to twiddle my thumbs. I didn’t have to do it for long, as I soon saw Henny and Richard from AN arrive, so then I had people to talk to, and they found someone who could take me to the terrace pavilion an accessible way.

When I got there, I saw Cassie and Simon, and met some other members of the team who I’ve heard of or talked to but not met in person before. They were still setting up, so I just watched and talked people as they arrived. As it got to 4, people began to trickle in, and before we knew it, it was really rather busy. I actually didn’t end up speaking to any MPs, except Mark Tami, the chair of the group, as it happened. I talked to several people from Anthony Nolan, and other patients or supporters. Emma, one of the other young ambassadors, was there, so we talked about what’s been going on with both of us and had our photos taken, then I spoke to a girl with an interesting connection to me and obviously an incredible memory – she met me when I was in YPU with Alice and Vicky back in 2010/11 (I think that’s when it must have been), as she was a friend of Alice’s. She was there today with another of her friends who’d had ALL, so we had a good conversation about relapses and getting leukaemia tumours. Then the last people I really talked to were a girl called Amy and her friend – Amy set up the change.org petition to reverse the decision to not fund second transplants when her friend Sasha had to fundraise to pay for hers. Only after she started paying did the decision change.

Before I knew it, it was 6 o’clock and time for us to go. Cassie found a man to take me back out, and once I’d escaped the labyrinth, it was time to find a cab. Last year, nobody was willing to come to Whitehall, so I decided to drive up the road for a bit until I could find somewhere suitable to get picked up. I ended up getting all the way to Shaftesbury Avenue, and eventually stopped at The Palace theatre. I was bound to get a taxi round there, so I used the mytaxi app and a chap came to pick me up. It didn’t take us long to get to Euston, so when I arrived, I had about an hour before I had to go to assistance. I bought a sandwich and a drink from M&S, a couple of magazines for the train, then in WHSmith’s they were doing buy one get one half price on some books. There were two that I wanted anyway. I am awful.

The 19th of July. 

Tired. Took me hours to fall asleep, and I’m a bit floopy today. Got up at half nine, and most of my morning was spent writing about yesterday. It will be a long entry – always is when I go on a trip, so probably another tomorrow. 

This afternoon, we caught up on The Handmaid’s Tale from Sunday, then two episodes of Criminal Minds: Beyond Borders. Then I went through to the kitties, as I didn’t really see them at all yesterday. I watched two episodes of Orphan Black, and they slept on opposing windowsills. I got Bree to purr again! She likes what Betty likes – having her chin scratched. I will make her friendly. Or at least not terrified of people. Christine is coming back with us tomorrow, so she’ll meet her and that will be a good test. Hopefully she doesn’t run away. 

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 25th of January.

Venogram day!

I was up at six, and having got dressed, I drank as much water as was humanly possible before my cut-off at seven. We arrived at ambulatory care at about quarter to eight, and we sat around for forty five minutes reading our books before the nurse came to start going through the checklist. It became apparent that the doctors wanted my potassium checking because it was high yesterday, but it was fine today. At half past nine, I was told to gown up because they’d be coming to get me soon, but then they actually didn’t arrive for two hours. There had been an emergency in angio so I was not angry, just bored and hungry. So hungry.

The nurse in imaging clerked me in (the amount of times I have repeated my date of birth, address and the fact that I am NOT PREGNANT today), then Andrew and the doctor who was working with him came to see me, and we talked through the plan. Andrew had the same theory as me, and the intention for today was to do the venogram and if we could do the venoplasty then he would.

I got taken into the angio suite, and everyone introduced themselves while I and the room got prepped. I got to be in the Who which is fun – normally I’m asleep for that part. While the doctor shoved the wire up inside my vein, the nurse on my other side stroked my hand and tried to distract me by talking about bees. I love that they do that kind of thing. We both knew what she was doing, but it is like a quiet contract we both entered into. They took some pictures of inside my arm, and it was found that I had a narrowing in the subclavian vein (not the superior vena cava like last time). I hadn’t had a massive amount of gadolinium (the dye they have to use because I’m allergic to the CT contrast dye they would normally use) yet so they gave me some fentanyl and midazolam, then I had a lovely nap while they inflated my vein. Hopefully that should do the trick, but if it doesn’t go down in a couple of weeks, I’ll have to go back to have something more invasive and permanent, like a stent. Let’s hope not.

The 26th of January.

Ooh I am so tired. Very long day. I’d not long finished my breakfast when my phone rang – it was a journalist called Christine who had got in touch with me via Anthony Nolan and wanted to do a kind of basic interview before she goes pitching the story to different publications. Sounds like it’s going to somewhere like Woman and Home or Woman’s Own right now.

When I’d finished talking to her, there was just time for me to eat some lunch and sort out my bag before I had to go to the station. I got taken to my train, but before we set off, there was an announcement to say there had been a fatality, so we were being diverted via Stafford, so would be skipping some stations. We eventually arrived in London forty five minutes late.

I had planned on going and doing some shopping but that seemed rather pointless and expensive considering the cost of cabs involved and the time I’d get to spend in the shops, so I went to Origin Coffee and had a flat white and a brown sugar cookie while looking over the NHS documents about second transplants. I get more angry every time I read them.

I sat and watched people go by for nearly an hour, then I needed to get a cab to go and meet Lauren and Amy for dinner. I thought it would be easiest to get one from Euston, so I drove back down the road to the station. I also had to pee and the disabled toilets at Euston are all out of service so someone had to let me in the baby change toilet instead, but at least it meant I didn’t have to pay!

I was able to pick up a taxi without too much difficulty, and he took me to The Diner in Camden. They found a ramp so I could get inside, then I got settled in a booth and had another coffee while I waited. Lauren was a bit late because the traffic was awful, but it was fine because there was a couple with two cute little boys nearby who were very entertaining.

When she did arrive, she gave me my birthday present of the Ruby Tandoh book, so I can make lots of tasty foods. Speaking of tasty foods, she ordered a vegan burrito and I got some pancakes with bacon to make up for the lack of pancakes on my birthday. Amy arrived mid-meal (she did say we could order without her), and we got to just have a nice dinner and talk about normal things, like Lauren’s move and an exciting project which Amy has been put forward for. I got my arms out, and Lauren found the size difference absolutely hilarious. She is one of the few people allowed to laugh. I’m actually fairly sure it’s got worse since yesterday but I just have to watch it.

I kind of had to leave in a rush, hauling my chair out of the door just in time to get into the Hailo cab. The driver was wearing shorts, which wasn’t then great for him when we got stuck outside the Anthony Nolan office gates and he stood around ringing bells until I got through to someone on the phone who let me in.

I was the first one of our group to turn up, followed by Jack, who is a supporter running the marathon (again), and Hayley and Jess who are both heavily involved with Marrow. We got started very promptly at eight, in a session facilitated by Ammeline, who does not work for Anthony Nolan. We began with an exercise saying what kind of animal we would be – I decided I am a panda because although everything seems to keep telling them to die, they just refuse to and I think that’s like me. Plus I’m cute. Then we got on to the subject of charity and Anthony Nolan specifically, what they do well and what they could do better. We were kind of biased because we love them, but we were able to come up withe some things.

I had to leave before we officially finished, because I needed to get back to Euston, although I don’t think it was going to go on too much longer. The car that arrived to take me there was a Mercedes, non-accessible, so I had to collapse the chair and put it up again at the other end, which was a disaster for breathing. It took ages for me to get back to normal.

I bought a hot chocolate and went to the assistance office, where the man told me to go down to the platform where his colleague would meet me. He did not appear, and after ten minutes of waiting in the freezing cold, I rang the office back and he was confused as apparently he’d rung the man “ages ago”. When he finally ambled up in his buggy, he was then pretty incompetent at putting the ramp on the train so having got up to my seat, I did not thank him.

We got moving, and I was desperate to sleep. However, I cannot sleep in a place that isn’t my bed and especially when I’m not even poorly, and I am paranoid about missing my stop. No sleeping was going to happen until I got home. Unfortunately, this train got delayed too because an engineering one in front of us had a problem so we got stuck outside Milton Keynes for forty five minutes. So dull. We made up a little bit of time, but still didn’t get to New Street until one. Tired, cold, in pain.