Archives For Euston

The 18th of July.

I love days like today. I live for them.

I went to London for the annual summer reception for the APPG for stem cell transplantation at Parliament. The journey down there was pretty uneventful; I just drank my coffee and listened to Surf Music by Paul Williams (thank you James Acaster for that recommendation). The assistance people were pretty timely upon my arrival for once, so I got out of Euston and made my way to Albertini, where I was meeting Laura for lunch. We have been friends for yonks, since we were both on LiveJournal about fourteen years ago, but have never had the opportunity to meet. I thought, seeing as I was going to be in town and she works near Euston, it was an ideal time for us to get together. She was already there when I arrived, and we got seated and set about picking our meals. I went for a pizze bufala (basically a margherita but with big blobs of mozzarella and extra basil) and she had mushroom pasta. We did a lot of complaining about the government, especially Boris, the Love Island recruitment process, what she does for a living, what I do instead of making a living, plus what I was going to be doing this afternoon. It was only a shame that we didn’t have longer, but she had to get back to work and I was supposed to leave about an hour to get through security at Westminster, so we said goodbye with a promise to do it again when we have more time.

I beetled up the road to St. Pancras because it was the closest taxi rank, and managed to poach a cab that had just dropped someone off. He took me down, and was able to stop the closest to where I needed to be, out of the three times I have made this journey. It turned out I didn’t need huge amounts of time to get through security, because a woman sent me down a different ramp that bypassed the queue, so I just popped my bag in a tray, negotiated the metal detector, and got gently patted down. I got into the main entrance, where I expected to have to twiddle my thumbs for the next hour. However, they had a small but interesting exhibition about women’s suffrage, so I looked at that, then found some Anthony Nolan people at the other end and we found some very agreeable members of staff to get me to the terrace pavilion via the accessible route.

When we got there, we weren’t quite allowed in yet, because they were still setting up the cakes and stuff, so we had to hang around in a little vestibule until we were able to enter. Once enough of us had arrived, whatever cordon was in place seemed to be lifted, and we were able to spread out. I said hello to everyone, then sat for quite a while with Laura, who works with Lucy (who helped me with the gig), and we talked a lot about carbs and the gym and stray cats wandering into our houses.

This year I did want to make a point of talking to more people, because for the past two, I have ended up only spending time with one or two and just talking to them for ages which is nice and all but I thought I would make a change. I made a beeline for Simon Bostic, who was the first ever recipient of a stem cell transplant from an unrelated donor. It was because of his story and his mother’s campaign to find a donor that Shirley Nolan was inspired and began what we know to be Anthony Nolan today. I wanted to find out more about him, and his life now, and (maybe rather egotistically of me) thought he would be interested in meeting me, as the first recipient of a completely unmatched donor. He and his husband were pretty shocked to learn the story, but once we’d got through that, we talked more about after effects, and how a transplant isn’t a magical cure, and chronic lung disease. His capacity is worse than mine, but I think his gas exchange is better because he is able to stand up and talk simultaneously, which I cannot do without getting breathless, even with oxygen. Lungs are weird.

Suddenly, out of the corner of my eye, I spotted someone that looked familiar. I turned to look, and to my utter delight I saw Manos! He was a reg at BCH when I relapsed, and was there all through the transplant and bad GvHD. I can’t remember exactly when he left, but he was then at the QE when I transferred there, and now runs the haematology/transplant department at Heartlands. He seemed equally thrilled to see me, and we had a massive hug and started reminiscing. I caught him up on how I am generally functioning now, and he told me about the developments on the ward where he works, and how he thinks about me when people want to give up on a patient, but he refuses to because he has seen impossible things happen. He gave an example of a patient that he has not forsaken even though everyone else wants to, but now that guy has gone to Israel to have a drug that he couldn’t get here, and now Manos is going to give him a transplant that means his children won’t lose their dad. Then he introduced me to Prof. John Snowden, Chair of the NHS England National Specialised Commissioning Clinical Reference Group (CRG) for BMT, who was one of the speakers. He’s also interested in people who’ve had solid organ and stem cell transplants, so we could have talked for a long time. However, he couldn’t chat much because he had to talk to the organisers about his speech and how it was going to run. My fellow transplant recipient and journalist friend Hannah was there, so we got to hang out again which was lovely, and I met Lisa Nugent, the head of donor recruitment for DKMS along with their head of PR, Nigel. We went to get drinks, and were going to continue our conversation when it was time for speeches. Mark Tami MP said a few words, then introduced Prof. Snowden. He talked about how long the NHS has been doing stem cell transplants, and about how we still have so much more to do, especially in our efforts for BAME patients, whose chances of finding a donor are monumentally worse than those of white, Northern European heritage. He also spoke about how the NHS is always at the cutting edge of transplant science, and what is being done with CAR-T cell therapy. Then he introduced Simon. He spoke about his mother’s efforts to find him a donor, to save his life, and to save her and other parents from the agony of losing a child when their death is preventable. He also talked about how magnificent the NHS has been in continuing his care after transplant, right up to this day, because the transplant is not the end. But hopefully it will be better for our final speaker, Farida Dedes. She was a student at Brunel, and became ill at the end of her first year. She was diagnosed with ALL, and was told she was headed straight for transplant, if they could only find her a donor. They really struggled, because she is black, and eventually she was told that they were going to give up searching, because nobody could be found. However, a month later, a donor popped up in Brazil. Amazingly, she donated her cells, and Farida had a successful transplant. She is now back at university, and will become president of the Brunel Marrow group next year, with the aim of really highlighting the necessity of adding more BAME donors to the register, because she knows first hand how devastating it is to be told one can’t be found.

I found her afterwards, because I identified with a lot of her story (mainly the sudden diagnosis and immediately living in hospital, and the need for transplant straight away) and we talked about having your life kind of ripped from under you like that. We were joined by Max Tami, the MP’s son, who also had leukaemia, but I know has also had issues afterwards. I think it was good for him to meet some people who understand.

We were then warned about the fact that it was nearly time to go (the people at Westminster are really arsey about you leaving the room literally as soon as the event has finished), so I made a move to say goodbye to people. I made sure I hugged Manos again, and got a photo with Simon to document our historic meeting. Then we started getting kicked out, except I couldn’t leave and nor could Simon (from Anthony Nolan) because he had a big thing on wheels that needed ramps too. They dicked about for ages, and only after half an hour of us getting frustrated, did the man in charge finally decide to get useful, mainly because I think he was worried we would wander off to places we weren’t allowed.

By that time, traffic was pretty bad, and I knew it was going to be impossible to get a taxi nearby anyway, so I started heading up Whitehall with the intention of finding a reasonable place to get a Hallo from. However, everywhere was too busy/inaccessible, and the route back to Euston was fairly straightforward, so I ended up just bombing my way back there, straight up Charing Cross Road, then right onto Euston Road, arriving at the station just in time for the platform announcement. I quickly bought a drink, a cookie and a copy of New Statesman, then met the assistance chap at the train and was on my way home.

The 19th of July.

That has been nowhere near as interesting as yesterday. I gave myself a little lie-in, although I am still tired this evening, got dressed, had coffee, breakfast. I started writing about yesterday, such has taken me all day, on and off.

I took a break so we could wash my hair, and I had to get changed, because the dress I had put on its currently too small. I’ve put on a couple of inches around my waist and I would rather they were not there, so I’ll have to get back into the gym.

We had lunch and caught up with Love Island (what a massive hypocrite Dr. Alex is), then Mommy went to Grandma’s and I sat with Dolly, trying to concentrate so I could finish writing. She was actually out this afternoon, sitting on the windowsill, so I occasionally chatted to her, and gave her some Dreamies.

When Mommy got back, she found some wet stuff at the bottom of the stairs, so she went up to investigate, and found a magpie freaking out in Christine’s bedroom, shitting everywhere. Thankfully she was able to get it out of the window without getting injured. Excitement, but a visitor we could have gone without.

When that was over, I went back to Dolly, and I got to stroke her! Finally reached that stage again. 

 

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 8th of December.

Back in London for our annual Christmas shopping trip. Kittens were fine so we didn’t have to worry about them while we were out. We left the house at half past nine for our train at half ten, and had a very uneventful journey down, save for a super fun baby who I got to make faces at.

From Euston, we went straight to Selfridges. I was disappointed to find that they had no rainbow bagels, but that was probably for the best, as we need to make space in the freezer, not take up more. We went up to the Christmas shop, where I bought a very cute mouse ornament, and found exactly the kind of wrapping paper I want to use this year, so now I just need to get it here, as I wasn’t going to carry it round London all day. We made our way over to the Selfridges Kitchen to get a table, and soon enough, Lauren appeared! We swapped presents, then went to get food. I had a smoked salmon, cream cheese and spinach crêpe, and we got to catch up, mainly talking about Christmas and her job.

When we were done, she went home for a nap, and Mommy and I went to Liberty. I cannot be in their scarf hall without thinking of The Apprentice now. Their Christmas shop was not very exciting – there were some cat decorations that I liked but I was not prepared to pay £15 for one. Maybe £5. Also they have a big thing about peacocks this year. Is the traditional Christmas peacock something I’ve missed? Anyway. On the way out, I had a great experience with a guide dog in the lift who moved out of the way of my chair in such a courteous fashion, it was adorable.

Next stop Anthropologie. I just wanted one of their Christmas mugs, and Mommy wanted to buy things that will be Grandma’s Christmas presents to her and Daddy. I couldn’t find the mug, and there was a part of the shop that was inaccessible because of steps, so a very helpful customer service assistant took me through the back of the shop and down in the goods lift. It was really tight and awkward but she was so good, then when I still couldn’t find the mug, she went and got one for me! Then, when we’d paid, instead of me going back the difficult way, the helpful lady got the boys on staff to come and carry the chair up the five steps so I could use the normal lift. I was so impressed with them.

Our next destination required a taxi, who took us to Dominique Ansel Bakery. It was amazingly not busy, so we were able to have a good look at everything before deciding. I had to have a cronut – an actual cronut – and Mommy had a Kouign Amann. My cronut tasted like a Kinder Bueno. I would like to try maybe a chocolate one so I can compare it to a Rinkoffs one, but I would say the Rinkoffs version is just as good. I also bought an extra moist brownie and a chocolate chunk cookie to take home.

Last stop was Harrods. I bought a brownie from there too, plus some coffee and biscuits. In their Christmas shop, I got a little mouse in a Harrods vest to go on the tree, and there was a very tense moment when we heard a smash and everyone went silent and looked around for the culprit. Thankfully, it was someone who worked there, so it was fine. It’ll just come out of her wages. We had a mildly stressful moment in Villeroy and Boch when they couldn’t find a stock version of what we wanted to buy, so we ended up taking the display one, then hurrying out so we could get a cab back to Euston.

It felt like the longest journey in the world, but we finally arrived with just moments to spare.

Home, toasted teacake, bed.

The 9th of December. 

I feel pretty ropey today – super tired, and my left eye has been really sensitive and sore all day which hasn’t helped. 

So it’s been a pretty quiet day. After breakfast, coffee and lots of kitten hugs, I spent a good hour writing about yesterday. I would have written up the post for the 6th and 7th, but looking at screens has been quite painful. That has also meant that I couldn’t really do the Christmas shopping u wanted to do today. Maybe tomorrow if my eye is better. 

After lunch (and half my Dominique Ansel cookie), I went upstairs to lie down and give my eyes a rest from looking at anything for a while. I gave the kittens a good cuddle as well because we had to go back to the vet today. It was just for their general health check so nobody got stabbed in the neck like last time. They certainly remember that because none of them wanted to get in the carrier today – two ran to hide under the chair.  

We did get them all though, and Rory the vet was very happy with them all. They need to eat more before they can be neutered, but I don’t even know what the plan is for them right now. There are things that need to be worked out but I don’t need to worry about that, I just have to keep feeding and petting them. I can do that.

 

The 13th of September. 

I have had just the most perfect day. So happy. I got up and had time to write up a post before we had to leave for the station, where I got a flat white from Starbucks that did not taste like garbage, and got settled on the train. My plug sockets weren’t working which was not ideal, but a nice man at the next table down let me use his spare one to charge my phone. 

The man with the ramp was very prompt for once, so I swiftly alighted and got a taxi to Kaffeine where I was meeting Suzi. The cabbie was very chirpy, whistling a happy tune as we made our way through the traffic and I was only a tiny bit late. We sat outside because it was a) gorgeous weather and b) much easier than wrestling the wheelchair inside, and we basked in the sunshine. I had a really excellent dark chocolate brownie and flat white by the way, I would recommend. I elaborated on what the event tonight was, and told her about the situation with my back, and she caught me up on how Edinburgh had gone, and explained what she’s working on at the moment which all sounds very promising and I’m excited for her. While we were sitting, a man walked past us into the shop, and I said “That guy looks like Dexter” (as in, Michael C. Hall from Dexter) and she said “That is Dexter!” so that was my London celeb-spot for the day. No idea why he’s here but whatever. I was later reminded that he had a stem cell transplant a while ago and I should’ve got him to come tonight. I am not quick-thinking enough. She had to leave at quarter past one, but was going in the same direction as me, so we headed towards Selfridges until she had to split off to go to her meeting. It was so nice to catch up; she is such a babe. 

In Selfridges I bought some rainbow bagels and a cinnabon, which I ate in the Starbucks on level 4 while listening to an hour long podcast to kill some time. I had a browse of the book section, where I had to disappoint a girl who wanted to know where I got my hair done. Sorry, you have to travel to Birmingham for this. 

I gave myself plenty of time to get to Zizzi where I was meeting Lauren for dinner, and had a few stops on the way. I went past Workshop Coffee where I bought some Square Mile Sweet Shop beans, and then made a stop in Konditor and Cook for two brownies – I was very restrained. That was just round the corner from the restaurant, and I was only about ten minutes early, so they let me sit down and peruse the menu while I waited. When she arrived, we pretty much ordered straightaway, and our pizzas arrived very quickly. I was still quite full from all the cake, so I only managed about a third of mine, but it was fine, I took the rest away in a box. We got to talk about her joy at finishing her MA and being able to read books for fun, and how her nan is having a great holiday in Ireland with all her friends. 

We paid, then had to find our way to the BMA. First we went the wrong way, but Google Maps put us back on the right track. We met up with Amy outside her office building which is basically next door, and we had a tiny group hang before Lauren went to meet her other friend and Amy and I went into the BMA. We picked up our passes and followed the signs that said Anthony Nolan. I had to get in a teeny tiny lift to get down to the room we were using, although we then very quickly left it to go into the attached garden. Ben was out there with a large folder of papers, and he said hi before going to greet guests. Amy and I sat at a table in a slightly shaded area, and various people gravitated towards us for chats. Some Anthony Nolan people I knew like Richard and Henny, some I didn’t, Charlie Craddock, and we had a delightful time discussing podcasts with a guy called Owen who’s a donor and his friend. They’re doing the Birmingham half-marathon in October but not to raise any money, they’re saving that for the full marathon that comes next. I also briefly got to meet Alice Byron’s dad, and we talked jaundice and liver drugs, then before we could talk more we were being ushered inside for speeches. First Henny, then Charlie, then me. It was fine, much better when I had it written out, and much less crying this time. Lots of people came to speak to me afterwards, including Nadia Martini, Yaser’s sister, so it was super nice to meet her, and I spoke to other people who’d had transplants or had family members who had. Everyone told me how inspiring I was, and Ben presented me with some beautiful flowers. At nine, it finished, so I said all my goodbyes, and Amy and I headed back to Euston where I gave a homeless man my box of pizza. She sat with me until her train came, then mine was delayed by fifteen minutes, so by the time we pulled into New Street, I was more than ready to be home. Toast, then bed. 

The 14th of September. 

Didn’t get as much sleep as I would have liked because I had an appointment to get my hair cut at quarter past ten. While I was in Starbucks yesterday I just had the overwhelming urge to chop it all off again and lo, it is done. Wonderful Michaela. She’s undercut the sides and it’s longer on top so I look a bit shaggy in a good way. So glad it’s done. 

When I got home, I had lunch which included the fudgepacker brownie I bought at Konditor and Cook, then I sat for about an hour, writing about yesterday. So much to say!

One of the effects of me sitting down all day was that my feet had puffed up with fluid. My back is actually not terrible, I think because I got out of my chair as much as possible, but there has to be some sort of punishment for going out. To try and combat it, I went up to my bedroom where I lay on my back with my legs up against the wall, trying to drain the fluid out of my feet while I watched the first episode of American Horror Story. We’ll see how that goes – if it gets too scary, I’ll find something else. 

Back out this evening for an Old Hallfieldians reunion. The traffic was ghastly, so I was half an hour late, but when I arrived, Celia was the only one there. After some sleuthing, we determined that the MailChimp email didn’t go out. Thankfully, other people did start to arrive, but most excitingly, my friend Steph came! I have known her since we were five but haven’t seen her since we were sixteen as she went to Rugby for sixth form, then university in Nottingham and New York, and has been travelling since then. 

She’s an artist now, and has been artist in residence at The Met in New York and The Museum of Tomorrow in Brazil, so she’s just a bit great. She’s back in England for a month, so she and her mum came to the pub and we had dinner while chatting about life now and back then. Things like the controversy of the elocution competition, the school play of Sleeping Jack Whittington and the Seven Bears, and the time we did an assembly in which I had to wear Steph’s mum’s fox fur coat. No idea what I was meant to be, but it was huge and really soft. Such random things I remember. 

We left just after nine, and I gave her the biggest hug I could muster. Not leaving it ten years until next time!