The Aftermath

So ... everything that happened post hospital. I'll try to make it as chronological as possible.

Less than a week after I left London, I was meant to go to France for a few days, to Disneyland with my best friends. I'd talked to the doctors about whether I could still go and at first they were like 'I don't think so' and eventually one of them had said 'if you can explain it all in French, then sure you can go'. Since my french is limited and I can say 'je mal au ...' and then not know the French for 'blood' I obviously couldn't go. I'd organised it all, we needed my card to get the eurostar tickets, and I'd booked the hotel and park tickets (and my friends needed my ID, though we didn't know that at the time). I emailed the eurostar and the hotel explaining everything, and the hotel were good about it, but the eurostar people were adamant I needed to at least be there to pick up the tickets. A refund at that time was the furthest part of my mind, I didn't know how I could face travelling to pick up the tickets to give to my friends, then turn around and go home. I almost brought my passport with me when I did, but mum and the boy came with me (to restrain me if they needed to). But oh my God, everything that could have gone wrong that day did, the trains were cancelled, we needed to catch buses, I forgot Joanne's birthday present (we were meant to be getting back just before her 23rd), when we got to the station the machine stopped working after printing out one ticket (mine) and they called the IT department but they'd left five minutes before, so we had to wait until the next morning. I started laughing because it was either that or cry hysterically. They said because the ticket that had printed had the reference on, I didn't need to be there in the morning too - that definitely would have been too much to handle.

As it was, I got woken up with a phone call two days later. Since when is it harder to get into an amusement park than a hotel? The people I'd booked the tickets with, through a work deal (which I'm still not entirely sure saved us any money, though it said 10% off) hadn't sent me the email voucher so I had to call them, get the new email, and forward that with a scan of my passport. I know everyone who went had a great time while they were there, but it felt like the whole thing was cursed (especially as I'd lamented on a website that I hadn't gone and someone missed the point that I'd done all that work and spent all that money for it and had a go at me because she hadn't gone too). Instead, while my friends were getting hugs from Sulley and joking with Mickey Mouse as only we could do; I was in my local hospital getting another blood test to make sure the treatment was initially successful. The nurse couldn't get my veins in my arm to come up, and the only protuding vein she could see was inside my wrist. I started crying - I was so sick of needles and blood tests by that point - and the nurse was going to mum 'is she actually crying?' (no shit, Sherlock). Instead, she took the sample from the back of my hand, where the clot was still pretty huge, but there was a vein we could clearly see. I preferred her taking it from there, but I was still kind of a mess as we left hospital.

I was sleeping for ages too. I'd go to bed at 7 or 8, sleep until 10, and still need a 2 hour afternoon nap. It was just under two weeks before I started helping with the boy again (I had to, all my family are teachers so they had to go back to school. I had no help) but it was like before I'd gone into hospital, I still couldn't entertain him properly.

Worse, before I'd gone in, he'd started saying a few words - mill for milk, and mamma, that sort of thing. But he'd stopped talking while I was away. He'd make baby noises, and giggle and stuff, but I've not heard him say 'mill' since. He skipped it when he was learning to talk again, called it by his proper name. He was pretty clingy the first few weeks, and when I had to go for routine check ups, appointments to arrange my gallbladder coming out, he was inconsolable. So was I, really.

I was having speech problems myself. I couldn't understand some of the things people were saying to me - you could ask me how I was and I knew what the individual words meant but as a whole, it lost all meaning. I had to get people to repeat what they were saying a few times before the words fell into place in my head. If I didn't say what I was thinking when I thought it, it was lost. I couldn't remember certain words - say I wanted to get a spoon for boy to have a yogurt, I'd have to mime a spoon action for a few moments to try to trigger the word, or at least give someone the vague idea I knew what I wanted, even if I couldn't remember the word. I'd talk and forget what I was saying halfway through a sentence. People would get my attention and then lose it withing seconds, not because they were boring, I just couldn't function right. I seriously had an msn conversation with Joanne where we were talking and all of a sudden, mid-laugh, I was like 'I can't remember what we're talking about' and Joanne was like 'but it's all right there, just scroll up' - but none of it made sense.

I worked my arse off trying to get back to the old me. I did sudoku a lot - those 81 little numbers were such a big help - and logic problems, criss-crosses, word searches, the whole shebang. I threw myself into my writing, and reading, hoping if I absorbed and expelled enough words, I'd have some form of retention. At first it was my old comforts, Harry Potter, Septimus Heap, Remember Me, and slowly it was other things, different things to pull me out of my comfort zone, to make myself grasp more. I still refused to take phone messages, thought my parents often forgot I had no short term memory, and kept asking me to do laundry, give my siblings reminders.

My stepsister's wedding was a month after I left hospital. The hotel was connected to the reception hall, next to the church. It was gorgeous, but the food was so pretentious. I had lamb the first night, and it was done really rare, I think I ate one piece. And my gallstones were aggreivated and I spent the evening being sick, so much so that my stepbrother, who's a doctor, arranged for me to get some medication they rarely give over the counter. Cara did a great impression of my stomach pain in the local chemist, apparently, to get it. I took it, and ended up sharing mum's bed, rather than sleeping in the room with my sister (my dad slept in my bed that night). If you look at wedding photo's even now, I look really off. Noah fell asleep at the reception, after dinner, so I took him to bed, where he woke up. Everyone had left us, thinking I'd sleep too, and I wore myself out trying to get him back off to sleep, so I took him back down to the party, and he fell asleep again in minutes. I knew it wasn't his fault, but it didn't seem fair - I couldn't eat much of the wedding breakfast either, I missed Faith and Jack cutting their cake, their first dance ... everyone was telling me stories the next morning (like Cara's husband throwing his back out lifting Cara's godmother's husband to Time Of Our Lives, or Cara and Claire stealing all the buffet and wedding cake) - I wanted to be there, not hear it secondhand. I was sick of being sick, sick of missing out. But thank goodness for boy - he'd been slamming this mini pot of jam on the table, trying to get the lid off that way, and my dad said 'if you get that lid off in the next five minutes, I'll give you a tenner' - three more slams and it flew across the room. He still owes boy that money. As a result of the weekend though, I spent the next few weeks living exclusively on noodles, soup and steamed chicken breast. I wouldn't have more than 20g fat a day (less than a third GDA for a female)

Anyway, I had hospital appointments every few weeks, for blood tests at UCLH, for haematology and gastroenterology appointments at my local hospital. I was so sick of seeing hospitals. They explained about my chances of getting TTP again (1 in 2 with my gallbladder still in, 1 in 50,000 if it's removed), talked about how aftercare would pan out, asked how I was feeling etc etc. I wasn't scared of having my gallbladder out, though everyone thought I was - I was scared I'd take a week in hospital to recover, of not having boy that long. I was scared if I didn't, I'd get TTP again and die this time. Having one tiny routine operation was a small price to pay. I dreamed of going for weeks without being sick.

I was feeling pretty okay by the time the operation came around - far more alert, I could remember more, I was doing more - almost like once I'd gone the 6 weeks recovery period they recommend after the operation, I'd be working again. I got admitted into the Joint Replacement ward before my operation, since they were short of beds, and the dumbasses having their knees replaced kept asking me what I was getting replaced, wasn't I too young? They were so nosy, my pre-op preparation was different to theirs, so they tried to undermine my already low confidence by saying if I hadn't done what they'd needed to do, I wouldn't be operated on. I was taken down to theatre 2 hours before I thought I'd been scheduled, since they just needed to wait for the haematology team (who were there just in case I haemorraged. Special precaution under the circumstances). When they fitted me with the general anaesthetic, the anaethnatist asked if I was nervous, but he didn't look like he believed me when I said no, just happy that in a weeks time, I'd actually be able to eat Christmas dinner. I stared at a winnie-the-pooh painting as I dropped off.

And when I woke up, my shoulders ached (they tilt the operating table so your head is 45 degrees from the floor, then fill you with CO2 so they can navigate the keyhole equipment around your organs more easily. It was a leftover sensation from the CO2) but otherwise, it was successful, no nicks or complications to make them create a bigger opening - the first good news for the last 4 months. When I got back to Joint Replacement, I was drifting in and out of sleep for a good few hours, but it was the first time in a while it felt truly restful. All the bile that had built up in my liver behind the gallstones came out at one point, but instead of being gross, it was really funny - the other women were still annoying me, and they freaked out at this dark green fountain spewing forth, but the nurses gave me one of those cardboard bedpans and offered me toast - which I had with marmalade, though I hate that stuff normally. But it was amazing, especially when I didn't feel sick afterwards. Those women looked at me like I was insane, like I was eating and drinking too early, but I needed to get rid of all that bile. My stomach felt tender, but it didn't hurt any more.

The only bad point of the operation was that my mind felt like it was back to square one. I'd gotten the boy into nursery for 2 days a week, and that helped me rest up a little, gave me some time and space to get on with getting my mind back again. I read and watched twilight in this time. Hopefully after reading these entries, with all the damage that losing my blood has done to me, everything I've learnt as a consequence, you'll understand why I'm derisive about Stefenie Meyer's writing (whilst enjoying the romantic aspects) ... she has literally no idea what effects losing your blood can do. I doubt Edward really would have had the brains he does, though he seems about as tormented as he should.

I tried to go back to work three months after the operation, but they said they doubted I could have the day shifts I was now asking for. It was a bit like 'come on, I've been so sick, I'm a mum, I'm still tired, I wouldn't cope in a busy shift yet' ... but eventually, when I added a few hours, until the time I was going to bed at night, they started giving me shifts.

And it was hard. I was constantly talking to myself when I was dealing with customers. I was quieter than people were used to when I wasn't, for fear they'd notice I just couldn't talk like I used to. I didn't recognise a lot of people, and the few I did had all been bumped up to management. I was still going through what I had when I'd come out of hospital, where one day I felt almost back to normal, and could say what I wanted to, and had the energy to do everything, but occasionally there were days, and they were becoming less frequent, but there were days where I could barely remember names, could barely walk across the room, and would've been better if I was still off, or just in bed or something. I heard a couple of senior managers talking, and they seemed to think my performance was linked to managers I liked. In some ways, I think that's sort of accurate, since those I got along with could motivate me when I was having an off day, but for the most part it was entirely out of my hands.

That was a year ago, when I got back to work. I talk to myself less when I'm dealing with customers because my memory's better, I don't have to search for words so much (but if you do see me gesturing, or if I repeat something someone's said, that's still me buying time while my brain tries to make what is an obvious connection) and I'm more able to talk to my coworkers like I used to. I've got just about enough energy to tolerate a full working week, and be a single mum, so long as I get a few hours to myself during the week sometime (there's been a lack of that lately, since I've suddenly got all day shifts, but I have a whole day coming up, where boy's in nursery and I'm not at work. I'm so going to enjoy it). But there is a difference, even if I'm the only one to really notice. Or maybe I'm not, and it's just not something to talk about? I get sick quicker than I used to, for longer. If everyone else has a stomach ache, I'm actually sick. Everyone else gets a 2 day cold, I have it for a week - I'm actually benchmarked at the moment for sick time, it lifts in April .. but it's really not my fault. My immune system sucks and my stomach lining's really weak. If there's anything to catch I do. It's just something I'm going to have to work around, I guess.

There is a downside to all this as well. I've been learning to drive, and it's annoying sometimes, because I have the ability but because of what's happened, my reaction times are really poor. My instructor's not taught me emergency breaking yet because apparently I do that too often anyway, to make up for my brain not working right. I'd been filing for life insurance before I got sick, but never heard from the bank filing it after. I've tried someone else since, and gotten refused. I just wanted to make my boy's future secure, but because of one incident, which shouldn't even repeat now I've not got my gallbladder, I've got to rely on ISA's and savings. Which is a croc, since I'd saved almost half a deposit on a house for myself and my son, and most of that money went when I was ill. I've said before to people that I feel on edge if I don't have a certain amount in credit in my account - and it's because I need that backup in case something else went wrong. I can't get any more tattooes or piercings. If I need a tooth removed, my dentist has to refer me to the hospital, because they can't adminster blood products should I haemorrage in his chair.

I have to keep going back to UCLH every six months too. So I'm still considered 'in remission'. When I do, we talk - I still have pretty bad headaches, and they know about my speech problems - and I get offered to be part of research projects, or having my case published in journals. I've given blood for DNA and T-cell research, to see if either present the same deficiency in TTP patients, whatever the trigger. Someone else is doing a computer simulation experiment, to see if TTP patients have lasting brain damage. It's based on reaction times, apparently (so, when I do it, epic fail, obvious brain damage?) - I'll be finding out in a few weeks if they're ready to do that one.

One good thing about the hospital though, is that they have a charity Christmas party every year, so I've met our patrons (Julian Rhind-Tutt and Timothy Spall). They do a bridge walk every October, and I want to do it this year. The treatments are so expensive, I want to give something back as a thank you. Joanne went with me the first year, which was pretty cool (and also, she gives blood routinely, so as well as being one of my best friends, she's kind of a hero of mine).

I haven't got a good way of finishing this off. It's obvious to me now why the first attempt didn't post. It's a pretty big explanation for one little saga though, isn't it?