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Documenting not dying since October 2013.

The 12th & 13th; Smashed both knees into the tarmac.

The 12th & 13th; Smashed both knees into the tarmac.

The 12th of September. 

Well, today has not gone as planned!

Morning was good. My back wasn't terrible, I got my blog post done, everything packed. Arrived at New Street, and the assistance chap was very helpful - he checked if the toilet in my carriage was working and it wasn't, so he took me off the train and moved me into the other disabled space carriage, where it did work. He even phoned Euston who picked me up pretty promptly!

That was when it ceased to be ideal. My plan from there was to go to Foyles, finish my talk for tomorrow, then check in at my hotel, meet Christine and go to Iberica to eat lots of ham for dinner. 

That did not happen. I was driving my chair down the Euston Road, went to cross it (not the whole road, one of the little ones in front of the station) and I misjudged the kerb so I fell straight out of the chair and smashed both knees into the tarmac. Two wonderful men swooped in and scooped me up (one under each arm), put me back in my chair, and I was about to drive back on to the pavement when a taxi driver honked his horn at me. I shouted at him. 

I was fairly certain I was bleeding, although my tights were too opaque for me to be able to see. It quickly became apparent when the blood started soaking through. I found a Boots and bought loads of stuff to dress the wounds, then I wanted to get a cab to my hotel. However, I could not get picked up where I was, so I had to go down to Tottenham Court Road station where I prayed a taxi driver would stop. I used the free now app to get a black cab to where I was, and the first driver who accepted the job actually came! He brought me to my hotel, where I found the wheelchair lift isn't working! I had to be taken up in the laundry lift (#GLAMOUR) and they got me checked in. Thankfully, the email confirmation I have from the agency was all I needed. 

I got all my dressing kit, got on my bed, and took down my tights where I discovered it was much worse than I thought. I've ripped the skin open on both knees and the fat tissue underneath is exposed. I took a picture and rang Mommy, who took the view (as did I) that I needed to go to A+E. We tried to work out which was the nearest, and decided that St. Thomas' & Guy's was my best bet. I texted Christine to let her know the plan, and I dressed my knees as best I could. Cleaned them, put some blood absorbing pads on, and then put the dressings on. 

When she arrived, we got a taxi to the hospital, and waited just over two hours to be seen. That wasn't bad, to be fair. Aunty Hilary and Uncle Jeremy even came (they had been at a prom) and brought us sandwiches. At that point I was actually in with a nurse who was trying to decide what to do, and they stayed until I was all patched up. That took us quite a while, because the wounds are right on the knee bone, and are virtually impossible to bring together using traditional methods. The right knee, surprisingly, has come together and stayed that way pretty well underneath all the bandages, but the left was trickier, despite appearances. She stuck it together with a million steri strips, multiple layers of gauze and bandages. 

They all came back to the hotel with me, where Jeremy waited in the hall as he felt there wasn't really space for him in the room too (they are very compact), Hilary unrolled my duvet and spread it out, Christine plugged the chair in to charge, we got my boots off and everything on the bed we thought I might need during the night, then I made them go home so they could all get there at a reasonable hour and go to bed. We had discussed Christine staying with me, but I would not allow that. Besides, at that point, both dressings seemed to be doing okay. 

However, I have been given an entire box of gauze to take with me, and it's already open. The left knee is bleeding through it all and I've already put two more packs of gauze over the top and a new bandage. It is quarter to two in the morning and I am supposed to be at the conference in seven hours and I don't know what I'm going to do. 

The 13th of September. 

I. Got. No. Sleep. 

I couldn't afford to try. The right knee was okay, but the left one just continued to bleed through the gauze, no matter how much I put on or how much pressure I applied. My back was killing me, but I couldn't lie down because I needed to be able to check on it every few minutes. I watched an episode of Breaking the News on iPlayer, and the new one of The Mash Report that I missed while we were in A+E, then I put some instrumental music on so I could concentrate on finishing off my talk for the morning. When that was done, I found Hot Fuzz on NowTV, and by the time that had finished, it was 6 a.m.

That's when both Mommy and Christine get up, so I texted them both to ask if they were awake. I really wanted to go and do my talk, because I did not want to have gone through all this for nothing, but I wanted to consult with Mommy to see if she thought it was a sensible decision. I needed to talk to Christine because regardless of whether I went to the conference or not, I was going to need her to come and help me, because I had used all 29 packs of 10x10cm, 5 layer packs of gauze I'd been given.

Christine replied first, so I told her that I needed her to come via Boots and I needed her to get gauze, bandages and wide tape. Then Mommy replied, so I rang her and asked for her opinion. Obviously I told her how my night had gone, and that I'd asked Christine to come. She agreed that I should do the talk, and then leave immediately after to get the train back to Birmingham, at which point we'd go to the QE A+E. I contacted Tracy, one of the conference's organisers, to briefly explain what had happened, that I would still be coming, but I my sister would be coming with me, and I would need something to put my feet up on while I was talking if possible, then I would need to leave as soon as I was finished. She said all of that was fine, and we agreed I'd be there a bit early just to make sure all my needs could be accommodated. 

Christine arrived with eighteen packs of gauze, four bandages, two different kinds of tape, and sterile gloves. While she'd been travelling, I'd done as much as possible to be ready before she came, so I had got dressed, cleaned my face, done my make up, and unlocked the door. When she arrived, they just opened my door for her! Could have been anybody! Oh well. We put a plastic bag out that Hilary had left for me to use underneath my leg to protect the bedding, then took off my last bandage. I'd put it on because I'd used up all the gauze, and I couldn't afford to have it bleed through. We removed what was drenched, saved what we could, packed on as much of her gauze as was necessary, then we used Christine's very strong arms (she does a lot of sport) to wrap one of the crepe bandages around really tightly.

We then ate our chocolate croissants she'd picked up from Pret, I took my tablets, and she started doing my packing. I needed to brush my teeth, and pee, so I was able to hobble to the bathroom, then she wheeled my chair in so I could brush my teeth. Got everything packed up, my bits and pieces on the chair, the masses of bloody gauze and other rubbish piled up around the bin (I wish I could have seen the face of whoever had to clean my room), and we went round the corner to the venue, Central Hall Westminster, via Pret to pick up some coffee so I could appear somewhat awake. 

We were taken down to our room, where I met Tracy and got my lanyard (which had my name in green because I was a speaker and am special). We went into the hall, where we were going to make sure the stage was okay for me, but I kind of got hijacked by people I knew or needed to know, so Christine sorted out a chair for me to put my legs up on to, and I went up on the stage to make sure it would work and she moved around the hall to check I wouldn't flash anyone. That was all good, so I returned to my table at the front and started talking to the other people on it. One chap had been part of the team that looked after the man in London who had HIV and leukaemia, and his transplant donor was one of the few people in the world who had HIV-fighting antibodies, and his transplant "cured" his HIV.  I was very excited about this because I'd read about him in The Compatibility Gene, and started chatting away like a bit of a fangirl. 

I was forced to quieten down, because it was time to start. There was a brief welcome, then it was time for the start of the session I was to be a part of. I was going to be on a panel with Guy Parkes, Head of Stem Cell Donation and Transplant for NHSBT,  Emma Cook, Head of the Welsh Bone Marrow Registry, Nic Alderson, Operations and Patient Services Director at Anthony Nolan, and Sarah Grace, Clinical Nurse Specialist, Allogeneic Blood and Marrow Transplantation at University College London Hospital.

They each did a brief presentation on how their registers were doing, or in the case of Sarah, just how difficult it is to get a timeline set for a patient's transplant with all the different parties and processes that need to be included. I had never realised how far back it goes - really from the moment of diagnosis. 

When it came to my part, I drove up on to the stage, put my feet up on the chair, and Hayley and I began our interview. It was essentially structured to allow me to tell my story, talk about my transplant, the effects of GvHD and how having a mismatched donor changed the course of my life. I also explained that I wasn't going to be able to stay for lunch to chat to everyone, as much as I would have liked to, because I had to go home and deal with my ridiculous injury. Then there was a Q+A with all of us, with some questions being more science-based, which I listened to with great interest but could not add to, then some were directed at me, because I talked about how my mental health was affected. How desperately sad I was for so much of the time, how I had no support until it was too late, until I didn't want to be alive anymore. I think it is being recognised more and more that a transplant is a traumatic process, and people need help dealing with that. Especially when they're only seventeen. 

At the end of the Q+A, I was beginning to have a nice chat with Guy about how cords don't need to be as well matched as adult cells, and if we could find out why, we could do more transplants without any HLA matching, like mine. However, that had to be cut short too, because we really needed to be on our way. I thanked everybody I could, then Christine and I got in a taxi to Euston. When we arrived there, I bought a sandwich and a drink, then we went to assistance and talked about changing my train. We added an extra layer to the bottom of the bandage on my left knee, then I got on the 13:03 back to Birmingham. 

Once on the train, I rested my legs across the companion seats, which meant I had to keep moving my feet for people going to the bathroom or the shop, but it was the only option. It meant I had no support for my back, which was indescribably bad after being half sat up all night, but I had no choice. 

I suddenly realised I was starving, so I ate my sandwich, then suffered the same agonising indigestion or god knows what, twisted up gut pain I suffered last time I came back from London. It wouldn't happen if I could eat at normal times but sometimes things just go wrong. So for an hour and a half, I writhed on the train, texting Mommy about what I needed when she came to pick me up, like different clothes, and a lot of Rennies. 

When I arrived at New Street, I was just about ready to cry because everything felt so awful, and all I wanted was to go home, but of course we had to go to the QE to get my dressings fixed. While we waited for me to be seen, we massaged all the wind out of me, Mommy doing the back, me doing the front. Waiting took as long as it took, I wasn't really keeping track of time, just trying to relieve my agony. By the time I was called through to see the nurse, I was able to talk to him without being distracted by any other pain. He started examining what was under the bandages, but stopped when he realised there was going to be bleeding, and went out to find us a proper cubicle with a trolley that could be moved if it needed to be. One became available quite quickly, so we moved in there and he found the source of the problem. There were several enormous clots, two about 9x9cm, one 2x9cm, and I have never seen any that big. He was able to peel them off in sheets, and the reason they were there was because of the silicon dressing the nurse in London put on. That was never going to let the wound dry, so I can blame her for my dreadful night. 

He didn't want to redress them before they'd been x-rayed, I think to check there was nothing in the wounds rather than to check for broken bones, so I went down to x-ray. It was freezing down there, and I was shivering so much, one of the porters got me a blanket. The radiographer gave me another one, once I eventually got in the room. We had to do two of each knee at different angles, and I found it really difficult to get them in the right position. Still, got there in the end! 

Colin came to look for me because I'd been so long, shortly after I came out, so he took me back himself. Once back in minors, he left the right knee alone, because it hadn't bled through the steri-strips, but he put a new dressing over the top. The left knee, he got a trainee nurse to take off all the steri-strips, then put a dressing over the top of those. We worked out that she was only a year younger than me, then we had a delightful time reminiscing about how great our childhoods were. Ah, the late nineties. 

We left with a plan for me to come back on Monday to see Colin and have him check the dressings, and we'd get a referral for a plastics clinic so they could take over the wound care. 

Home around eight. I ate a boiled egg and some toast. I am so, so tired. 

The 14th & 15th; Recovery.

The 14th & 15th; Recovery.

The 10th & 11th; The worst my back has ever been.

The 10th & 11th; The worst my back has ever been.