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The 27th of April.

It’s been a very peculiar sort of day. Started with respiratory clinic, where I had to talk to Dr. Thompson about the bronchoscopy. Curiously, from his perspective, it went quite well. I couldn’t have more sedation because I might have stopped breathing. Apparently when I got down there I was very uptight, anxious and in control. As soon as I had the sedation, all the emotion I’d been holding back came out and actually made everything worse. He also thinks it has been made worse in my brain because I have some sort of PTSD from NG tubes. So would you if you spent six months of your life having them shoved up your nose and down your throat, then vomiting them up along with chunks of your own dead stomach tissue several times a week. Basically, my brain has fucked me up for these sorts of things.

After this chat, we moved on to how I am now. He is not majorly concerned about my cough or CRP, we just need to keep an eye on it. He did send me for a chest x-ray to see if my right lung has inflated any more and it has, so that is pleasing.

 We left the hospital and had a quick trip into town so I could get another jumper, seeing as my fat arm isn’t going anywhere any time soon.

Got home about two, so we ate lunch, then packed up all the stuff we were taking to Mach. Daddy got home from his hearing aid appointment, had his lunch, and we finally left the house about four.

We drove straight here, so it took us only two and a half hours. The house is nice, the only downside is that it has no wifi. We also have the slight issue of the fact that Mommy forgot to put the breakfast foods in the car so she and Daddy have had to go shopping. She is poorly, it’s not her fault.

The 28th of April.

I slept surprisingly well, for not being in my own bed. It’s a novelty to sleep in a single bed that isn’t a hospital one. This morning was pretty quiet, just breakfast and writing about yesterday. I think that’s how this weekend will be done, considering I’ll be out at my normal writing time.

We went into Mach at lunchtime to a) buy me some toothpaste (forgot mine; had to use Mommy’s and it was so minty and painful), b) do some recon on gig venues and c) have some lunch. Well, the only toothpaste they had at the co-op was all minty, so I got one for children that is only mild. We checked out all the venues I’m going to and they should all be fine with the wheelchair. Then lunch! There are many cafés, and we went to one called The Quarry where I had some much needed coffee and some spinach, squash and sweet potato pie. It came with an enormous salad which I was incapable of finishing but didn’t want to waste, so we got a box to take it away in.

We then returned to the house for a little bit before Daddy took me back into town for my first show, Stuart Goldsmith, at 7. I went a bit early so I could get some food (a cookie), then I wanted some wine, but the bar did not seem accessible, so I had to ask a nearby stranger. She was very obliging and came back with a large Grig in a pint mug which I think I was supposed to give back. Oh well, it’s mine now. We had a nice time chatting while we waiting for our respective gigs – she and her friend were going to see Mat Ewins and Fin Taylor, so I wonder if they managed to enjoy both shows. Unfortunately, next to where we were waiting were several fire pits, and once they were lit, my breathing was fucked, and I had to put the oxygen on for the rest of the evening.

I really enjoyed Stuart’s show, very very funny. Could not recommend him more. My next show, Marcel Lucont, was at the school, where Nish had just been doing a show, so I went down there and met up with him and his girlfriend, Amy. Together, we went down to Y Plas because I had 40 minutes to kill and on the way we bumped into many of their friends, all the names of whom I have forgotten, They were all very lovely though. At quarter to nine, I needed to get going, so Nish and Amy walked with me back there, and we said goodbye until tomorrow when I’m seeing him (unintentionally) in two different shows. 

I was one of the last people in, so I was at the back with my oxygen. I didn’t enjoy it as much as the first show, but I think that’s partially because I felt like total garbage. He was good, I just wasn’t up to it.

Mommy and Daddy were seeing Ivo Graham at the same time, so we all went home together. Hope my oxygen levels return to normal tomorrow.

The 29th of June. 

Last night it still took a while to fall asleep, but I didn’t wake up and need to drink a lot of water so that’s a plus. Still getting light-headed every time I have a big cough though; I have to force a pause to stop myself going too far. I need to make an appearance on Hallfield Day on Saturday, and right now I think it might be quite brief. 

This morning we had a fun job of looking through the litter tray to check what the kittens’ poos were like, because last night, one of them was upsetting. I spoke to Shaki to discuss handover, and I’m going to meet her at the vet on Friday afternoon so they can have their first jabs and go home with her. I don’t have a carrier big enough for all five but apparently one will be dropped off for us. 

This afternoon, I went upstairs to try to sort out some stuff to take with me on holiday. We’re going to Weymouth and I find it impossible to choose clothing because a) I like to have options and b) it’s Britain so who knows what the weather will do? I procrastinated by updating my iPod and finding powerpacks and camera batteries to charge. I listened to the second heat of the BBC Radio New Comedy Award which Nish hosted, and I really enjoyed everyone unlike the first heat. I wanted Olga Kokh to win, but she came runner up to Michael Odewale. I liked him too though, so I wasn’t as irritated as I might have been. I really ought to keep note of all the people I enjoy. 

The 30th of June. 

When people who aren’t used to it hear me coughing, they must think I have TB or something equally disastrous. I was at the chiro this morning and I couldn’t suppress the cough for that long, so I was offered water and then gin if that would help. Trine had a fair few things to work on, what with me having been doing this for a good three weeks now. She asked about my x-ray and I explained about the lack of reporting. I knew she could do one, they have the equipment, but unless the hospital say they’ve lost the original, she cannot expose me to more radiation. I have liver clinic relatively soon, and I think James will try to sort something out for me because he is a top fellow. We also had a chat about the referendum, as she is from Norway, so she couldn’t vote, but is married to a Brit and has been here for years. She despairs as much as I do. 

Speaking of which – Boris! Or no Boris, as it happens. This is really all going a bit too far now. Gove pitching in is bizarre too, the man who has previously said he has absolutely no interest in being the leader, doesn’t have the capacity, but suddenly he’s realised that actually, Boris is a nincompoop who you wouldn’t trust to run a bath, let alone the country, not to mention a coward and a liar. Let’s not even discuss Labour. 

The 21st of June. 

Woke up in vast amounts of pain because I appear to have pulled a muscle in my back in the night. Just to really help matters. I was up for about an hour before Mommy and Daddy left, and since then I have moved very little.

Jen came round to pick up the kitten adoption forms and money, but she is also full of germs so did not stay. I did a post, then have spent what remained of the day crocheting. Not the blanket (I think that stitch I was doing contributed to the hand cramp), so I thought I’d go back to that doll I had been doing. I was working on the pyjama set and teddy bear, and decided to finish the teddy first. Unfortunately, I nearly got to the end of the head when I ran out of wool. Most frustrating. I started on the pyjamas, and did one leg before the postman came with more wool! I’m doing a manatee called Orlando to send to Emily, my American friend who sent me the big box of goodies. 

Once again, my afternoon has involved sitting in my armchair, watching Parks and Rec, and crocheting. I’ve been texting Christine because she still feels terrible so we have been commiserating with each other. I also had a phone call from Elaine about my scan results, and apparently the coil is in the right place, so I suppose I just have to wait and see how things go. 

I’m ordering Domino’s for dinner. 

The 22nd of June. 

I have been outside today, although to be honest I didn’t really have a choice. Oxygen clinic. We bumped into some unexpected people though, so that was a plus. First, we saw Ram, my haematology consultant, who appeared to be leaving the hospital, sporting an eye patch like the ones you see people wearing after cataract surgery. He saw us so we said hello, but he would only say he’d had some “emergency treatment” and was going home, not over the road to do his clinic. Very mysterious. Then who should we see but nurses Kirsty and Philippa from liver clinic! Philippa has returned from maternity leave, so she showed me pictures of her baby, and I showed her some of the kittens. We talked about seeing all the team on tv (Philippa works at BCH as well), then I really had to go as it was time for my appointment. 

I got called in quickly, and we weren’t there long. I just had to chat to a nurse about my oxygen usage, and they stab me in the earlobe (good blood supply there) to check the oxygen levels in my blood. They have gone up from 9.6 to 10.6 (ish) and apparently that is significant so hooray! That was all, then we went over to haematology clinic to ask about my back x-ray but it still hasn’t been reported on so more emails will be sent. SIGH.

We went home via the Bullring so I could look for some pyjama shorts that weren’t super short (you wouldn’t think it would be too difficult but you’d be wrong) and replenish my stock of facewipes. 

This afternoon, I have watched the new episode of Pretty Little Liars (!!!) and finished crocheting Orlando the Manatee. He is adorable. 

The 24th of May. 

The shoulders are protesting. This morning I really couldn’t see how I was going to manage a gym session. My back, elbow and shoulders were all sore, and I generally felt somewhat delicate. Had I not been going to see Vlad, I wouldn’t have gone in. 

I wrote up a blog post, then went back upstairs to try and have a rest and get in the right frame of mind. When I went to make my lunch, I also looked for some co-codamol but the box in my drug bag was empty and I didn’t have the impetus to search the cupboard for more. I just made myself a sandwich and got a brownie, but by the time I’d got to the living room to sit down, my back was excruciating. We rang the clinical nurse specialists to see if they could find out the results of my x-rays, but none were available so have to ring back in the morning. 

My session with Vlad was booked in for 2, but I was early and his previous client was slightly late, so I did 15 minutes of weights before we got started. I explained more about my lungs and all my diseases, then we did some stuff on the mat. Calf raises, some yoga, squats (ugh), press ups, sit ups, leg raises, all sorts of business. By the end I was pooped – he made me sweat. Nobody makes me sweat. I am to practise being mindful of my breathing and some meditation. I think he can teach me some things, so I will give him a go. 

Becky came round to meet the kittens briefly, and confirm our plans for dessert café on Saturday. It’s going to result in a sugar coma. 

The 25th of May. 

Today everything hurts, so I can’t differentiate between vaccination and PT pain. I am very stiff. 

It has been a rather uneventful day. This morning I spoke to Nicola, a CNS, about the results of the x-rays, but the reports haven’t been done yet so she was going to chase them up but I don’t know when we’ll hear back. I spent a couple of hours letting the kittens run around which they used to chase each other and fight. They refuse to be lap cats yet. I shall have to train them. 

After lunch (and the surprise series finale of Criminal Minds, argh), I went upstairs to work on what I’m going to say to the students at Anthony Nolan next week. However, I got really engrossed in my notes because I’d got to the admission in Halloween 2008 and that’s when it all got interesting. It was very difficult – at times I had to stop reading because it was a horrific period in my life. I only kept going because I knew it got better. I found out that when my DNA was confusing, the doctors were actually really concerned about the cancer coming back again, but I wasn’t informed because I was so depressed, it was decided I couldn’t handle it. Thankfully, because I am excellent, my body refused to succumb to what was expected, and instead I am “exceptional…in medical literature”, as written by Mark Velangi when I was denied funding for photopheresis. 

So instead of practising my talk, I was absorbed by the story of the impossible girl. 

The 18th of May. 

I feel very disappointed in today. I don’t know why – it has hardly been terrible. 

Left the house at half eight to get to clinic as early as possible. It didn’t take long for Andy to call me in, and after a poke and a prod, he requested an x-ray of my lumbar spine for when I was done in clinic. I was supposed to be back next week to see Ram, but Andy asked him if he could see me today and he could, so we waited. It was a good thing I’d taken my book because Ram didn’t call me in until ten to twelve. He requested an x-ray for my elbow, but that’s more to placate me – I don’t think he thinks there’s anything really wrong. Anyway. I got a long list of drugs to take to pharmacy, then toddled off to imagery for my x-rays. We bumped into Janet, the adopter of Monica, because she is an ambulance driver, and she had time to show us a couple of pictures and assure us she was okay which is good to hear. 

A lovely chap called Liam came to get me, and he had the most delightful lilting Irish accent. Scanned both sides of my right elbow, then I signed a form saying I can’t possibly be pregnant, and they did my spine from above and my right side. Lucky for them it’s easy to tell if my bones are in the right place. 

We were supposed to be going into town for some shopping but there wasn’t time – we’d just got home and had lunch before Mommy had to go to Grandma’s to meet her new social worker. I sat with the kittens, trying to decide what I’m going to make for Katherine’s daughter. It’s going to be an elephant – I’m just going to do it at warp speed. 

The 19th of May. 

I have been a crocheting machine of late. Been working very hard on the elephant today and hopefully I’ll finish it tonight. 

This morning I wrote up the blog post that I should have done yesterday, and supervised the kittens playing/fed them and changed their water because they had got food in it. I think they’re all pretty much a-ok now thank God. Please stay fine until Sunday. 

Rosemary came for lunch, so we had a chat for about half an hour held she and Mommy went to eat. I ate mine while catching up on Limitless, then started work on the elephant’s third and fourth legs. 

Rosemary left at two to go back and walk the dog, and Mommy was supposed to go and see Gill in hospital, but she was being moved to a rehab place so it wasn’t a good time. This meant we could have the trip to town we were going to have yesterday. I got a Fruition water bottle, and some more toy stuffing while Mommy took stuff back to M&S. 

Home and back to crocheting! Have to do one more ear and the tail, attach them, then he will be done!

The 1st of March. 

Bleah I feel rubbish. Barely slept because I was coughing and sneezing. The house had no heating because the boiler man was coming so it all had to be switched off. I’ve been in the knitted joggers and my extra warm thermal polo neck and they did the job of the radiators until the boiler was fixed. 

That’s all there is to say about today. I have been taking Day & Night Nurse, Carbocisteine, Strepsils, plus spraying my tongue with the strong steroid because an ulcer is trying to happen there. Going to clinic tomorrow to get some antibiotics because I’m bringing up yellow junk. Hopefully I can get some of it into a sample pot in the morning so they can test it. 

God, I hope this doesn’t last long. 

The 2nd of March. 

I don’t feel totally terrible. I could do with more sleep and I wish I weren’t coughing up junk but at least I’m not feeling completely wretched. I barely slept again, then got up at eight so we could go to clinic to get me some antibiotics. I put myself in the side room, because if I’d been anyone else in clinic, I’d want the person filled with germs isolated. When I had my bloods done, I got a sample pot which I managed to hawk from yellow stuff into and now that’s off being analysed and cultured. Ram listened to my chest and heard the ever-present crackles in my lower right lung, and he gave me some Co-amoxiclav and sent me for a chest x-ray. I forgot how big those tablets are. 

We got home just before half past one, avoiding all the swirling snow we’d seen earlier. I had scrambled eggs for lunch because my tongue is bothering me. Right now it just feels raw and sore, especially if I eat something acidic. Talking is also a little bit tricky. If it lasts longer than a few days, I’m going to have to get injected again. 

Obviously that is a boiled egg and soldiers which I had for lunch on Tuesday, I have not lost the plot completely. 

The 15th of April.

Sweet baby Jesus my back has never hurt this much. I spiked yesterday evening and again at 1am, so I’ve had barely any sleep. My back now just hurts constantly at a fairly high level, then I get breakthrough pain when I move and sometimes when I do nothing.

I had clinic today, so we arrived at about ten, waited for three hours and was finally seen by Ram at one. I was almost in tears by this point, and nearly broke down when trying to describe the pain. I’ve got loads of Tramadol, starting on 200mg a day and if that doesn’t work, I can double it. We had to get a massive order from pharmacy, three huge bags, so I gave them my prescription and we went for lunch while we waited for an hour. I was starving.

Oh and no results from any of my tests were back yet, so we have to ring up tomorrow. Ram said depending on what the x-ray shows, I’ll probably need an MRI which I can’t currently imagine as lying flat is incredibly painful.

Getting out of the chair after five hours was no fun at all, I was incredibly stiff, and since getting home, I have just stayed in the armchair. This is just awful.

The 16th of April.

Things are better today. I had two lorazepam last night which did help – I didn’t get up until about ten. I was a bit stiff, but once I’d got the Tramadol on board, it started building up inside my system and I can walk around a bit better now. The constant ache I had its basically gone, which is a huge relief. I also haven’t spiked since 1am yesterday, so I’m hoping that continues.

Today I’ve just watched tv that I don’t need to remember (Lorazepam makes me forget what’s happened in the day after I’ve taken it) and made the last two legs for Anna’s elephant. I’ve put that on pause for the night as I’m going to make a black sheep to give to Michaela tomorrow. I’ve also been through the new Hummingbird Bakery book which arrived in the post today, and there seem to be many tasty things I want to make, like the birthday cake cookies and chocolate doberge cake.

Igor just rang to see how I am (bless him), so I told him, but none of the results are back yet and there’s no record of the urine sample being at the lab, so he wants me to go in tomorrow at half one to have more bloods done and do another urine sample. He knows I need to leave by half two.

Right, back to the black sheep!