The 9th & 10th; My eyes explode.

The 9th of May.

Second catch up sleep completed. I reckon I probably have one left before I am back to normal, but that won’t be tonight because I have to get up at six for ridiculously early lung function tests tomorrow.

I wrote up a blog post this morning, but I haven’t sorted out the photos and stuff so it is yet to be published. I was upstairs getting dressed when I got a text from Mommy warning me of the imminent presence of the window cleaner (she had just gone out so saw him further down the road) so I dove behind the bed to protect my dignity. Turned out that wasn’t necessary because he didn’t appear for another forty five minutes.

After lunch, I went with Mommy to pick up Grandma from lunch club at church, then after dropping her off at home, we went to the QE for my follow up with Mr. Kolli. He had a look at my lashes which look good, although the right eye will need to be checked again in a couple of months. He also checked my pressures which had gone up to 25/26 which is bad. Have to start doing steroid drops once a day and in a month he’ll check them again. Hopefully I continue to be asymptomatic, I can stop the steroids and my pressures go down. If that doesn’t happen, I’m not sure what the plan will be. My eyes explode.

The 10th of May.

Well I definitely did not have a great sleep because just as I was dropping off, I heard a dripping sound. The rain was coming through my ceiling. I had to go and wake up my parents, who did what they could (at midnight) to stem the flow. Thankfully the rain stopped and has stayed away, but it’ll still need fixing because it’s very near my head.

Then I was up at six for my lung function tests. We arrived at hospital at eight, and I saw the same girl as I did in November, and I had to get in the box again. I think my lungs have got to a level of shitness that requires a specific test that can only be done in the box. I was in there for nearly an hour because I had to do two of the tests three or four times, plus she is nice so we were chatting.

I then sat and read my book for an hour and a half while Dr. Thompson saw the patient before me (for ages). When it was finally my turn, I was in there for about ten minutes? My results are the same as six months ago, so that’s fine. We talked about him putting the kibosh on my second liver transplant and everyone saying I would die, but five years later here I am, no second transplant, no more superbugs. He was glad I am not suing them for emotional distress. As if I care; I am just glad to be here. He couldn’t believe it was 2013. Here I am, still defying the odds. Having conversations about how long my 23% will keep going for. We don’t know.

I am tired of grieving for lives I thought I’d have.

Since my appointment yesterday with Dr. Thompson, I’ve been feeling pretty depressed. I know that physically, since the pneumonia and collapsed lung, I have found it hard to do much more than walk a few metres without struggling for breath, but to now have it confirmed that there is no hope of recovery is hard to hear. I had just got used to one standard of disabled life, and now I have try to envision the rest of my life again in this new version. I am tired of grieving for lives I thought I’d have.

It’s difficult when I spent months this year so chained to oxygen, having to exist as a blatantly, visibly sick person, and I hated it. Truly, despised it, because the first impression I gave was one of illness, and my appearance inspired pity in strangers. I cannot bear the idea of living a pitiful life. The very opposite of every intention I ever had. And I know that the next rung down on the ladder of lung disease is one where I am constantly adorned with plastic tubing. That scares me because living when it was so much effort to even brush my teeth was almost intolerable, and I don’t know if I have the strength to fight through every exhausting moment being miserable. I had rather decided that when it became impossible to be happy the majority of the time, I would find a way to end it.

But in the past, even when I have felt darkest, most lost, I still wanted to be alive. Or at least, I didn’t want to not be alive. I didn’t want to miss things, and I didn’t want to be the cause of the agony of death that I’ve felt more than enough times for any normal lifespan. I know I am most likely to die first in my family, but for it to be self-inflicted would be crueller than is necessary.

I saw Murder on the Orient Express today. There is a notion in the story, something I have thought about before, when we lost Dean – that when one person dies, there is a ripple, an avalanche. Everyone around them dies too, at least a little. I can’t instigate that kind of pain, not on purpose. I think there will be moments in the future in which I don’t want to be alive, not right then. It has happened before. But there are also always things to come that bring me happiness. Maybe I can adjust to a different life. Again. I just think that while I am able, I ought to endeavour to enjoy the time I have, whatever way I have it. To try to improve the lives of people around me, and use my voice to champion the things that have kept me here thus far.

Even when everything seems merciless and wearisome, for as long I can hold on to some strand of hope, I won’t let go.

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The 7th, 8th & 9th; I didn’t scream or even flinch.

The 7th of November. 

Feeling less shit today – no murdery dreams and my muscles are not so sore, so overall generally better. 

This morning, I wrote up a blog post while shouting at the Tory voices on Victoria Derbyshire. Eventually, I had to put on an episode of Bones because I was getting my blood pressure up. Then I put together the final gnome and took some photos of them all together. Now they’re sitting on the mantelpiece, having a lovely time. 

After lunch, I started work on the next Christmas project, but didn’t get much done before Ann and Tom, the couple interested in Callie and Carlton arrived. They pretty much immediately fell in love with them, as I expected. They are just too gorgeous to not adore. They’re going to change the kittens’ names to Molly and Bertie, so we’ll have to get used to calling them that. Plus they’ve given us blankets for them to get used to/put their smell on. 

After they left, I tried ringing the GP again to talk to this secretary who’s been trying to talk to me. I rang this morning, but she wasn’t available so I was told she’d ring back. When I tried again, she’d left. So then I talked to the team leader who did some investigating, but couldn’t get to the bottom of it. She’ll try again tomorrow, and maybe I’ll eventually find out what they want!

The 8th of November. 

Well, local anaesthetic in the eyelid is, much like most of the local injections I’ve had, not that bad. The only distressing local in the past was for the bronchoscopy, but that was for more psychological reasons than physical. 

Anyway. I was up just before six, because we had to be at the QE for eight. I was first on the list, which I was pleased about. I met Mr. Kolli before going into theatre, and we had a brief chat before he drew an arrow on my forehead so they didn’t do the wrong eye. Then I didn’t have to wait long for the theatre to be ready, so I put on my gown (over my clothes) and shower cap and went to lie down. 

A nurse put some music on (classical, disco, La La Land, Sinead O’Connor) and poured what felt like a gallon of two different strengths of anaesthetic drops in, with a tissue at the side to stop them escaping. Another nurse took her place, and I was given his hand to hold while Mr. Kolli injected the local into my lower eyelid. They both warned me about how awful it would be, so I was surprised to find it really wasn’t so terrible. Not that it was pleasurable, but I didn’t scream or even flinch, which he can’t remember witnessing with any previous patients. Brave Kathryn strikes again. 

Finally got round to zapping the rogue five lashes, and I didn’t feel a thing. So now they’re gone. I have antibiotic ointment to do four times a day (along with all my other drops) and I sported a very fetching eye patch until half past one. We’ll see if it has held off the bruising tomorrow. 

The 9th of November. 

This morning was arduous and long and frustrating. First was lung function. For the first time since I was at the children’s hospital, I had to get in the box (see photo below). Same tests, just different room/equipment. They took forever, it seemed, partly because I had to do one of them four times, plus she had to get some blood from me and it all just added up. Knackering. Then I saw Dr. Thompson, and he was not full of joy. The numbers are the worst he’s ever seen (for me), which is what I was expecting. We compared some x-rays from now and last year, and it is quite clear that the right lung has shrunk and the chest wall has sunk in, so I have less volume and the way I feel now is the new baseline. Great. 

Got out of there about half eleven, so just had time to get some coffee before going to see Andrew. That was a very confusing chat. It seems the lymphoscintigram actually showed that the right side works better than the left, because the lymphatic system is compensating for the rubbish venous flow. So now he wants an MRI with gadolinium so we can get a definitive picture of my anatomy. Which will require careful booking because he or a colleague will need to be there. JOY. And even when we know what is going on where, what we do is still up in the air because so many things could go wrong. Numbness, he cannot fix, but can sort out another MRI for that and refer me for nerve conduction studies. 

I don’t make any sense. 

The 9th & 10th; This part will be tedious.

The 9th of August. 

Well, I had a terrible night. It took me hours to fall asleep, then I woke up multiple times, too cold, couldn’t get comfortable. It is ridiculous that in August I am having to use my electric blanket. 

This morning, after a breakfast of porridge (weather appropriate), I wrote up a blog post, then I made the last two squares of the blanket. I think twenty is enough, once it has a border as well. 

I managed to spend almost all of my afternoon looking at the squares, at books and magazines, then back at the squares, trying to figure out how to join them. Tried various ways and eventually chose one, so I’ve joined six of them so far. This part will be tedious. 

Hope I have a better sleep tonight – up early for hospital tomorrow. 

The 10th of August. 

Another weird night – ages to go to sleep, then I woke at six with a horrific headache on the right side of my head, but it seemed to abate when I lay on my left. I had to get up at seven anyway and I was still getting pangs of pain, very reminiscent of the pressure headaches I used to get when I had the arm/face swelling and high blood pressure. I’m taking some co-codamol upstairs tonight in case it strikes again. 

Dr. Thompson was running pretty much to time this morning, so I didn’t have much chance to read my book. I really must try harder, because whenever I do pick it up, I want to advance the story. I really ought to just try reading it when I know I’ll have time. Anyway, I let him know how things had been since the venoplasty (arm the same, breathing slightly better) and he thinks next time I come I should do some tests so I’ll look forward to that. 

Nothing to do but come home, so I got busy assembling the blanket. I have sat in the armchair all afternoon, sewing squares together, then columns, then across the rows, then one border, and finally a second border. Now I just have to close up the gaps between the corners and weave in some ends and it’ll be done!

Oh and I have an appointment at the lymphoedema clinic, a week after I see the liposuction lady. I have to fill in a survey about my “quality of life”. Ha. 

The 8th & 9th; It is the literally worst fucking thing I have ever had done to me.

The 8th of March. 

In total contrast to yesterday, many things have happened today! Last night I got told I needed to be nil by mouth from midnight because endoscopy were probably expecting me to go down for my bronchoalveolar lavage (or bronchoscopy for short) in the morning. 

Ben came to see me first thing and we had a very brief chat, which concluded with the decision that I would indeed have the bronchoscopy. There were only two other people on the list so I wasn’t waiting long until my turn. 

Dr. Thompson was doing the list, so when I went down to endoscopy, we had the chat about what he would be doing and I signed the consent form. As he explained the process, I realised that it was going to be horrific and I would never have agreed if I knew what I know now. I was unable to have any effective sedation because my sats were too low, so I was awake for the entire thing. Here is what happened:

Firstly, I had to do a deep “Ahhh” and he sprayed the back of my throat with lidocaine (local anaesthetic) which stung like crazy and numbed the back of my throat, which made me feel like I couldn’t swallow. Oh and I’ll say now that I coughed intensely throughout, to the point where I nearly threw up multiple times. 

Then another “Ahhh” to spray the vocal chords, so then I was coughing, in pain and couldn’t speak. I was able to signal that I could not tolerate having it go up my nose – if you imagine, the camera is about 4mm in diameter, and I could barely cope with the thinnest NG tube available, so having an endoscope up my nose and down my airway was not an option. 

One more spray, then I lay down, but then he sprayed me again and I had to sit up to cough more. He gave me 2mg of midazolam which my liver gobbled up immediately and did absolutely fuck all, so I was completely conscious, eyes screwed shut, biting down on the plastic guard that was in my mouth to stop me biting through the scope. He put the camera down my throat and into my windpipe, then deeper into my lungs, where he squirted some water which was then collected to be tested for all the bugs. I was coughing and coughing, unable to move because another doctor was holding me down, telling me I was okay and to “Just breathe” (which is really NOT FUCKING HELPFUL), honestly feeling like I might die from the strain of it. Finally he pulled it out and I had an even worse coughing fit and nearly threw up again, and he sort of patted me on the shoulder and told me to breathe. I couldn’t speak because I didn’t want to cough any more, then I was brought up to the ward, where I had to have my obs done every fifteen minutes and remain nil by mouth for another hour and a half, and I just wanted a hug and to have a cry. It is the literally worst fucking thing I have ever had done to me.

Mommy came in early, and I had a little cry when I related the experience to her. She gave me lots of hugs and thankfully the nurse who was doing my obs was amusing. 

Sometime before midday, a vascular nurse called Donna came to see me to talk about lines, and she said that they’d talked to Andrew Willis and he’d agreed that the mid-line was the best plan, so she’d come back after one o’clock with another nurse called Caroline and an ultrasound machine and she’d put one in. 

I ate some food and drank some coffee, and it wasn’t long before Donna returned with all the gubbins. She found a nice vein using the ultrasound, and I actually could understand which black blobs were veins and which were arteries. Basically, if she could squish it and it went away, it was a vein, and if it pulsed, it was an artery. She and Caroline got gowned up and covered me in various sheets, and put some lidocaine in my arm. She got started, and it was all going okay until she tried to feed the wire into the vein for the line to follow, but something seemed to be getting in the way. Caroline picked up the ultrasound, and we could see the vein, but then there was a large black blob that wasn’t a vein or an artery, and it was stopping anything going any further up my arm. She couldn’t try any more for fear of seriously damaging the vein which would leave us with no options, so the next option is that I have to go to interventional radiography for them to use dye to find good veins. And of course I am allergic to the standard dye. Donna and Caroline went down to talk to Andrew, but he wasn’t here this afternoon, so Tracy (the appointment coordinator) has booked me in for a line, but I don’t know when that’ll be, and Andrew and Dr. Hopkins who has also been involved have been emailed. 

As they were finishing, a porter came to collect me for my chest x-ray that I probably should have had on Monday after the drain was taken out. That was not very interesting, and I’m sure the results will just show that my lung has re-inflated. 

Upon my return, I found Philippa and Kirsty from the liver team in my room, talking to Mommy, so they cheered me up from my shitty day. 

I am exhausted, and I would really like some more progress. My breathing has improved – I’m not getting as breathless when I talk, for example, but moving is still a huge struggle. And somehow I think that I am not going to recover very quickly. 

The 9th of March. 

Oh, frabjous day, I have a line!

At eleven o’clock last night, the cannula site started bleeding. My immediate thought was “Oh, fuck.” but I was pleased because it meant that my need for a line was even more urgent. Thankfully, the cannula itself was still working, so I was able to have my meropenem through it. The nurse doing IVs last night offered to put another one in my right hand and I was able to warn her off, but she was quite keen. Last time I let people cannulate my hands, they were destroyed. 

We had no idea what time I might be going down to angio to have my line put in, if at all, but I knew they would want me to have been nil by mouth, so I elected to starve until we knew what was happening. Plus, the nursing team were not thrilled that I wasn’t eating or drinking, so they made extra effort to find out what the plan was. I was effectively on hunger strike, but it was directly related to the outcome, because I knew if they called me and I had eaten, they wouldn’t be able to necessarily do what was needed. 

I stayed hungry all morning, and I saw all of the respiratory and haematology doctors. Ben and his team are just waiting for results from my bronchoscopy, so hopefully tomorrow we might know something from them. The haematology chaps just pretty much wanted to know why I was still here, as if it’s my choice. It’s just that we (the doctors and I) need to know that if I’m discharged, I’m not going to be back in 48 hours complaining of other symptoms. So we do the tests, get back all our results, and if something needs treating, it gets treated. If not, I suppose it just means I am still recovering from the pre-Christmas pneumonia and my right arm still needs deflating. Fingers crossed there is news in the morning. 

I was told by the nurse in charge that she had agreed with the booking coordinator that they would talk at 12, then I would know if I was going down this afternoon or whatever the plan would be. However, at 12, the nurse here rang and got no answer, then she had to go to a meeting, so we knew nothing. Two hours passed, and I was getting increasingly irate and hungry. Mommy went and hovered about for me, and found the nurse had returned and was in the office on the phone. Whether it was about me, I don’t know. But about half past two, a porter came to take me to angio! He didn’t have any oxygen, so had to go and get some (you would think that for respiratory patients it would be a requirement), then he and a student nurse took me downstairs. Then we had a problem down there because nobody had done a theatre checklist on the ward, so we did one in recovery, then the nurse had to go back upstairs to get my nurse to fill in her half of the checklist, and she came back (after getting lost) with my checklist and a red wristband to tell people that I am allergic to things. 

I had a chat with a few people I now know down there, including Mark who has done a venoplasty on me before. Turns out the reason Andrew hasn’t been around yesterday and today is because he’s off sick, which is frankly unacceptable, but I suppose even doctors get poorly sometimes. Still, one of his “senior colleagues”, Dr. Hicks, was looking after me, and had been there when my case had come in on Tuesday. He decided that we were going to do a PICC, not a mid-line, and I thought I’d let him because if he fucked up my veins, he’d just have to fix them, and he would be in trouble with Andrew. I had not got the energy to argue. He also felt that dye wasn’t going to be necessary, and he could do it with just the ultrasound. Rather defeated the purpose of me going down there in the first place but OH WELL. It didn’t go swimmingly to begin with – he started on one side of my arm, didn’t seem to find a vein there, so had me flip it over. He found one there, but something caused a problem because he had to take out the wire and line he’d got in, then have me put my arm back the way it was originally. He finally got into a vein and it was all going to work, when I heard him say “Oh, I’ve done it wrong” which is not what one wants to hear on the table. He just meant that he’d cut the wire in the wrong place, so it was too short and he needed another one, thank god. When he got to the final bit, when the end of the line is being positioned very close to the heart, the x-ray machine came out and this time I could see what was happening! He was working on my left side and the screen was on my right, so I could watch my chest rise and fall, and the line thread across the screen into the dark mass that was my heart. It was slightly unnerving when I could feel the tip poking inside me, and I swear my heart jolted in my chest when it got prodded. 

When I came back to the ward, I pretty much shoved a sandwich into my face, then I was wondering when I might get my afternoon dose of mero, because I wasn’t here when it was supposed to happen. Just when it looked like it might be coming, somebody in the bay across from my cubicle crashed, so everybody charged in there with trolleys and machines, so I didn’t get my drugs until half past six. I don’t mind, obviously I understand that my antibiotics are not quite the priority when that sort of thing happens, but I am going to be very tired when I finally get my night time dose. I may try to go to sleep and just leave my arm available. It has been a long day.  

The 2nd & 3rd; I have a pneumothorax!

The 2nd of March.

I woke up this morning and it was clear that I needed to be in hospital. I had to have the oxygen on 3 litres when at rest which is far from acceptable. We talked about what was the best plan – do we ring haematology? Email Dr. Thompson? Or just go to A&E? We came to the conclusion that it was best to ring the CNS team, who got back to us very quickly and said to come up to the ward immediately. I finished my coffee, Mommy packed a bag and in we came. 

Jo, a nurse who has looked after me before and knows me, came and did my obs, and the first of the many doctors I saw today came. His name was Aran (I don’t know how he spells it so I am making an assumption) and we had a chat about my symptoms, then he needed to take some bloods, and for me to take off the oxygen for half an hour so he could do an arterial blood gas to see what the oxygen levels in my blood were like. He had a tough time getting the artery because mine are so small and elusive but he got there. It was not so terrible, but I will bruise.

He then went away, and after a while, he returned with Paul, one of the regs who saw me before Christmas. At rest, my sats were fine, which I found ridiculous but that was what it said. I suggested we do another blood gas after I’d walked a bit, and see what that was like. We had to leave me off the oxygen another hour to do that, so just after half past one, Aran came back with more needles and sent me off on a walk up and down the ward. I had to stop before I got to the end, but I finally got back to him, and felt like I might die. What was worst was that I couldn’t put the oxygen on to recover, and I couldn’t move or speak, just had to let him jab around in my wrist and after some time, elbow, to get the second gas. The other investigation that needed doing was a chest x-ray, which also happened very speedily. Everything has been so efficient today! So I went down to x-ray with a nurse and we had a nice chat about how we both look young (she said she was 40 which I do not believe) and then we couldn’t come back up in the lifts because the fire alarm was going off. Thankfully it was not a proper fire, and we returned to the ward.

Paul and Aran came back with looks of great excitement on their faces, and Paul asked “Have they told you?” Very much not. It appears I have a pneumothorax! That’s a collapsed lung, basically. No reason, just another stupid thing that my body has decided to do. 

To fix this, Paul had called the respiratory team, and a consultant called Ben Sutton came to see me. His opinion that the best thing to do would be a chest drain, because just aspirating with a syringe might not work and if I went home and it collapsed again we’d be in trouble. I agreed with this, and also mentioned that Dr. Thompson might want to know about this. He then came up to see me, and was not impressed that the ABGs had been done before the chest x-ray. Nevermind! 

So, chest drain. We had to wait for a respiratory reg to come up to do it, and Dr. Thompson supervised. We went through to a tiny side room, the purpose of which is something I am not entirely sure of, and I sat up on a trolley with a sheet across my front while Dr. Lugg, the reg, gowned up. First, he cleaned me, then poked me a lot between the ribs to find the gap he needed to get the needle in. He stuck a sticker on so he knew where to go back to, then I had lots of local anaesthetic around the site. There was a small cut, then there was a needle, and a wire to guide the doctor, some tubes, and a lot of pushing to get the tube into the place where it needed to be. Then he attached a very large tube, and many bubbles poured out of me. It suddenly made sense that the rumbly sensation I have been feeling was bubbles in my chest, and now they are on their way out. I could see them moving up and down the tube as I inhaled and exhaled. 

It doesn’t feel great, but I’ve had worse. The drain is firmly attached to my side, and the movement of air is slower now. I’ve had another chest x-ray to check the progress, which showed that it’s improving but hasn’t fully reinflated yet, which is how it feels. Dr. Thompson suspects I will need the rest of the air to be actively suctioned out because it might not all come out on its own. I’m sure that’ll be fun. While I was waiting to come back to the ward, I was talking to the nurse who was with me, Craig, and we were comparing physio stories, because he’d had a car crash which resulted in a brain injury and he’d been paralysed on one side, so he had to learn to walk again too. However, he was a very good physio patient unlike me, who would pretend to be asleep. 

Mommy didn’t really want to leave me, but by half past eight there were no signs of me having a bed, so I told her to go, and shortly after that, I got moved! 

Now I am in a cubicle (my favourite way to be) and going to the bathroom with the drain is interesting (I have to buzz someone), but I’m alright. I don’t think I will get much sleep tonight – lots of podcasts, maybe some Netflix. I need to plug my chargers in and get my pyjama top on, but I don’t need assistance for that. I do hate being so dependent. 

The 3rd of March. 

I am in NHS limbo. It has been a day of waiting. I did get some sleep – I don’t know what time I dropped off but I woke up at 9 in a rather curious position but at least I had some rest. However, that meant I had missed breakfast, so I asked the nurse for some bread and marmalade, and that had to do. It was not dissimilar from what I’d have at home anyway. 

I spent my morning wrapping myself up in my blanket and sheets, trying to get warm, and not quite falling asleep. Praveen, the reg from clinic, came to see me, wondering what the hell had happened since then, so I explained, and he had nothing to add so off he went again. 

Mommy arrived with food and more clothes, and we essentially sat around all afternoon waiting for my chest CT/Dr. Thompson, whichever came first. It ended up being the scan, and I had the fastest porter in the world (he was even faster than my chair!). 

When I returned to the ward, I emailed Dr. Thompson to let him know, and he replied to ask where I was, so I told him and he materialised shortly after. He looked at my bucket of chest fluid (it’s delightful) and determined that the lung isn’t going to reinflate fully on its own, so I need to go to the respiratory ward where they can use suction to get the last remaining bits of air out. We can’t do that up here because there isn’t the kit or the expertise within the staff if there are complications, which means that I am stuck until a bed becomes available down there. That was just before 4, and now it is nearly 8.30 and nothing is happening. It is nobody’s fault, it is just that the hospital is literally crammed to the rafters with patients and I can’t go and have the treatment I need until someone moves out, but they need somewhere to go. Until that happens, I am taking up a haematology bed which could be being used for a patient who needs it, and it will take longer for me to be discharged than it would have if there were enough spare beds to begin with. 

Mommy and Daddy have left after packing up all my things for when I do move, and I am just sitting on my bed, watching tv on my iPad and looking up hopefully every time someone walks past my room. If I think about how shitty this situation is, I nearly start to cry, but if I do that, I won’t be able to breathe at all. 

The 18th & 19th; Now I am sitting in a hospital bed.

The 18th of December. 

Guess who’s back in hospital? Lucky me. Having added up all the symptoms, I decided that actually, going to A&E this morning was going to be necessary. If I do have a pulmonary embolism, or need inflating, we needed to get the ball rolling asap. 

So after breakfast and coffee, Daddy brought Mommy and I down to the QE and here I will stay tonight. We arrived at 10.56, got triaged and had my obs done. My high heart rate concerned people despite me explaining it was normal for me. I spent most of my five hours sitting facing a corner in a sub-wait so I was exposed to as few germs from coughing people as possible. I had a minuscule amount of blood taken, enough for a D-dimer (a test to indicate a thrombosis) and saw a doctor who decided to admit me for the tests that I need. They’ll want to do a CT scan which I can’t have because I’m allergic to the dye, so if a PE seems likely, I’ll have the one I had before with the radioactive gas. 

I finished my book (Cats Cradle by Kurt Vonnegut), and eventually got a bed on CDU at half four. I filled in a form, was brought some dinner of chicken in a creamy sauce with green beans and mash which was actually edible, then we sat and waited for Daddy to come with my overnight bag. 

Once he arrived, a doctor followed shortly after. He’s from the liver team so has heard of me, and we went through all my symptoms and history again. He was mad that I hadn’t had a chest x-ray yet as he could hear prominent crackles, but it’s done now. I’m high risk because I’ve had a PE before, and my veins have been inflated before, and this doctor is sensible so I’m confident things will happen tomorrow. Hopefully it’s simple. PE and clexane please. 

The 19th of December. 

Happy 9th Marrowversary to me! Nine years ago today I was sitting in a hospital bed, having Christine’s stem cells transfused into my bloodstream; now I am sitting in a hospital bed waiting for another scan.

The doctor (Matt) came back last night to say that there was a shadow on my lung, so he wanted an ultrasound today to see if there was any fluid there. A porter came for me at half nine, but then we had to wait for a transfer nurse. After half an hour of him angrily pacing, a woman came up from ultrasound to help. For some reason, I had to go down on my bed, so two people were required. Anyway, a man scanned my right hand side and found no fluid so that’s good. I returned to CDU, where I was seen by the doctors who have now decided that because my arm is still swollen, they want a scan of that, so I’ve been waiting for that all day. 

Mommy came in with some lunch for me, and we sat around some more. Dr. Thompson decided to drop in to say hello and take the piss a bit because he is awful (but we love him). He feels that if there’s no clot in my arm, there’s no need to go hunting for one elsewhere, so tomorrow hopefully I’ll just have my arm scanned and then go home on clexane and co-amoxiclav. Please!

Gareth had been in to visit the liver team so popped down to say hello and ended up staying for nearly two hours! Still, we had nice chats about Keith and the liver team and Christmas. I think it served as a nice distraction for us both. 

I also had a visit from April who works here and follows me on instagram so I got to put a face to a name!

Loads of new people tonight. Go away.