The 11th & 12th; I have had an utterly smashing day.

July 18, 2016 — Leave a comment

The 11th of July. 

So Theresa May will definitely be Prime Minister. The House of Commons tomorrow is going to be just fascinating. The weather is going to be appalling it seems, which puts the kibosh on what I had planned to wear. Still don’t know and I really need to decide before I go to bed because in the morning I will not have time to be getting dressed a thousand times. 

This morning I did a blog post, getting back into the habit (hahaha), then after lunch, Mommy and I went into Sutton. I needed to buy some boxes to post things in which was tricky because I’d measured the items in inches, then had to convert those into millimetres and remember which was depth and which was width. Basically it was an arse but I got them in the end, hooray. We went to the station to pick up my tickets for tomorrow, but the machine there was broken, so we tried Wylde Green on the way home, where the man in the booth was very obliging. 

Shortly after arriving home, Ian from Anthony Nolan rang to speak to me about my talk on Friday. That sent me into a panic because in my head it was on Thursday, so then I had to check that I’d booked my tickets and assistance for the right day! Thankfully I had, so then we could move on to topic. I ran them through what I’m going to say, and they had some thoughts of things I need to add in. Will do my tweaks, then email them the bullet points!

The 12th of July. 

I have had an utterly smashing day. Had I not been bothered by what felt like a scratch on my eye all day which was incredibly painful and irritating, it would have been pretty much perfect. Well, also better weather would have helped. Less rain would have been ideal. 

It began with Michaela being an absolute darling and coming into Black Sheep early to cut my hair before my trip. I messaged her in the week because I was desperately unhappy with how it was looking, so she shuffled things around and fitted me in because she is wonderful. I want to grow my hair, so I really needed it shaping into a style which can be grown out. The back has been shortened and the fringe cut back in to make the front bits look longer and even out the length. 

Went straight from there to New Street where I arrived surprisingly early, so I picked up a paper (the self-service checkout machine gave me all my change in 5ps, the prick) and went to wait in the assistance office. I got taken to my train and settled in for the journey. I tweeted Euston to let them know I was on my way, but then we arrived early and the train manager was by my door so he sorted the ramp for me. I saw the assistance chap as I was going up the platform, and he explained that he’d been helping a blind lady, which was all fine because of our earliness and the Virgin man being there anyway, so I was not upset with them this time. 

I got in a cab to take me to meet Lauren in Covent Garden and the rain was torrential. Ghastly. He dropped me off as close to Le Pain Quotidien as he could, and when I got inside, it was crazy busy. At first they did not seem keen to let me wait. However, I managed to charm them and five minutes later, I had a table!

I ordered a flat white and an orange juice while I waited for Lauren and considered the menu. She appeared, and we ordered some food. There was much to catch up on, like my x-ray saga and the horror of her masters course, and I complained throughout about my sore eye. I haven’t had pain this bad since I had the eye GvHD and had to live in the dark for a month because all light was intolerable.

We paid up and had about an hour before I needed to get a cab. We wandered around Covent Garden, and ended up in the Charlotte Tilbury store where the staff were very helpful in getting my wheelchair in and out. I bought some lip scrub and they gave me many free samples! Excellent. 

It was time to go, so I looked for a Hailo taxi but there were none, it seemed? And an accessible Uber was going to take twenty minutes to arrive, so I thought I’d just GoogleMaps it in the chair. This was going fine until the rain came down again and I got lost. Very stressful. I thought I’d give Hailo another go, and thank God, one was nearby. He got there quickly and I got in as fast as was humanly possible. He was quite a new cabbie, but he got me to Westminster in one piece. I then had to race 100m down the road in the pissing rain and join a queue of damp people, waiting to go through security.

My bags were x-rayed and I got patted down while in the chair, then I just carried on through! I sidled up to a man in uniform, and he took me the secret wheelchair way to Dining Room A. I met Cassie and Simon from Anthony Nolan and the photographer. We were all bemoaning the weather, then an MP arrived thinking he was late when he was in fact early, so I had a kind of dry run talking to him, he had a photo, then he had to run off to vote. Will and Amanda, two of the other Young Ambassadors, arrived and we had a chat with the MP for the Isle of Wight who was very nice and asked a lot of questions which was pleasing; I think he had a genuine interest.

The room started to fill up, and I suddenly realised that in front of me was Yaser Martini! I jumped up from my chair for a hug and possibly one of the worst selfies in the world. He introduced me to Seb Casalotti who is the brother of Lara who there was a massive campaign to find a donor for. We were all grieving over the state of the world when we were joined by Georgie Ireland who is one of the daughters from the Give Our Dad A Bone campaign. Their story didn’t have a happy ending, but they found solace in that they made a huge difference for people with his kind of cancer. We talked about hating hearing/watching ourselves, and stealing clothes from our sisters. She was going to get into trouble over the skirt she was wearing when she got home.

I noticed Ben (from Anthony Nolan) and Yaser were discussing how it is desirable to get a slightly imperfect match to get some GvHD. I was just about to share some photos of my skin (nothing too graphic) when speeches began. First to speak was Mark Tami, Labour MP and co-chair of the APPG. His part was only brief, more to introduce Seb, but he did mention that his son had a transplant which I didn’t know. Seb started with a thank you video from his family, then spoke very eloquently about his gratitude, but also his hopes for improving the education about stem cell transplants, especially within schools and colleges, so we get young people wanting to sign up to be donors as early as possible. Then Richard Davidson, one of the directors of Anthony Nolan had his turn, and he thanked everyone for coming, spoke a bit about the report, and introduced me and the other Young Ambassadors for people to come and speak to about our experiences. I was immediately sought out, and from then on was telling the story! I was able to speak to Mark Tami and we discussed opiates and how he is very keen to do more to support mental health post-transplant. I was really happy to hear him say this because mine has been fucked up beyond recognition but it isn’t really even mentioned before you go through it. I had a conversation with a girl from Anthony Nolan who works in communications, and I ended up discussing with her an app I have which shows me where I could get good coffee in London, as she sometimes finds it hard to come by. Now she can have lots!

The event wound down, and we were eventually chucked out by someone in uniform who had to tidy up. A man was found to escort me back out the stepless way, and he was very fancy, in tails an’ all. Once I had escaped, I Hailo’d a taxi, who accepted, but then called me to say that it was going to take him ages and basically, he didn’t want to come, so he cancelled the job. I went back to where I’d just come from, where there was a policeman. I explained what had happened and asked if he could help. I expected him to maybe call someone who could call a cab as I presumed they would have some kind of service? But actually, he went and stood on the street and waited for one to come along that he could hail. And bless him, he stood out there for about twenty minutes while I waited by his box and tried to see if I could spot anyone I recognised. I saw Stephen Kinnock, but that was all. Finally, I heard the policeman’s whistle and I sped out to get in the cab after thanking him profusely. 

The journey back to Euston took a while but I expected it to so there was no stress, I had aeons. As soon as I got there I went straight to Boots to purchase eye make up remover and cotton wool pads to relieve my agony when I got on the train. I picked up some magazines and Pom Bears, and I was barely in the assistance office before they were telling me what platform I needed to be at. The train was sponsored by the new Independence Day film, so was covered in huge pictures of Jeff Goldblum. Fun!

As soon as I was seated, I cleaned my eyes and frankly I am not sure how much it helped. I just ate my child crisps and was thrilled to be able to block out all the light on the way home. 

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