Archives For PICC line

The 12th of July. 

Venoplasty day!

Any day in ambulatory care means getting up before six which is not ideal, but necessary. I was last to arrive in my section, but that didn’t matter because I was third on the list, so there was no rush with my admission. I didn’t expect to go down until about eleven, so I was very surprised when a porter arrived at twenty past ten. The nurses didn’t even know, so I had to quickly go pee and put my gown on. 

Across in angio, I said hi to all the team, and Mr. Singh (who put the PICC in) came to consent me. Then Andrew came and we had a chat about the plan – it was left unspoken that this is our last shot. 

On the table, I was prepped, covered, cleaned. It is a testament to the greatness of the team that I have to be essentially naked in front of the whole room for a while but at no point did I feel undignified or unsafe. My groin was ultrasounded to find the vein, but there seemed to be trouble getting into it because I heard a lot of talk about scarring, then a dilator had to be used to hold it open so the sheath could go in. Then there were issues with the wires – people had to keep getting different ones from the wall. I think it was to do with the length or the stiffness? They were having to get all the way from the groin up to my neck, which is pretty far. They did a couple of runs with the gadolinium to check everything was in the right place, then it was time for fun and sleepy drugs. I got the nice, warm fuzz, then the discomfort of having balloons inflated inside you. I think they did maybe six inflations in total? They used the two biggest balloons available, in one site in the neck vein, one in the SVC and again a little bit further down. Then everything came out, and I had the awkward five minutes where a man leans heavily on my groin to stop the bleeding and there isn’t much to say. 

I went into recovery about twenty past twelve, where I had to stay for half an hour to make sure I was fine before they’d take the PICC out. When it came to that time, the nurses had changed, and the new one hadn’t done it before, so we had to grab a doctor to do it. The nurse watched closely, but there isn’t much to learn – just pull it out, then put some pressure on the hole. Then the nurse was able to ring the ward, where a student nurse said someone would come for me. Forty five minutes later, she rang again, and the staff nurse said she hadn’t passed on the message, and came straight away. I was fine; another nurse had shared her Jelly Babies with me and I only had twenty minutes of lying flat left. 

Back in ambulatory care, I asked Mommy to get the flowers and chocolates from the car because Emelda and Tracey would be gone by the time I’d be able to, so she delivered those and then got me some coffee and a sandwich, which I was only too eager to get into my face. Then we just had two hours to kill, so I was checking the tennis and talking to Mommy about what had happened in angio and what we do now. I have to keep my arm elevated a lot and try to squeeze the fluid down. We’re going to see if the massage people at the chiro do lymphatic drainage, and if that could help me. I’m also considering acupuncture. Anything that will get this swelling to go down. Anything at all. 

By half past four, I’d got myself ready to go, so I was given my discharge letter and we were out of there. I had a ticket to hear Matt Haig talk about his new book, How to Stop Time, at Waterstones at half past six, and I needed some dinner first. I ended up having a cinnamon crêpe and a chocolate milkshake because I am an adult and I can. 

Because of the wheelchair, I had to use the lift to get to that second floor, where the event was, which meant I basically jumped the queue. However, I chose to sit at the front which was good for watching the interview, but then I was at the back of the queue for the signing. However (and I honestly don’t know why this happened), some people near the front said I could go in front of them, so I got out a lot quicker than I might have. I just wanted to tell him how much I loved Reasons to Stay Alive. I’m so excited to read this new one. 

The 13th of July. 

Trying not to get sad. I’m pretty sure the venoplasty isn’t going to have worked. I’ve spent most of my day looking for effective treatments for lymphoedema. 

I had a chiro appointment this morning, which I was very thankful for because a) my neck has been really clunky recently and b) I wanted to ask about the massage/lymphatic drainage thing. Turns out my neck muscles have been recruited to help me breathe so they’ve got all stiff, and Trine’s not sure if they do this but she’ll find out on Monday. 

When we got back, I wrote a long entry about yesterday, watched two rather short Wimbledon semi-finals, and did a lot of internet research. There are the standard treatments of drainage massage and compression garments, but honestly they don’t sound very effective. There is a chance that acupuncture may have a small amount of benefit, but I’d want to know somebody who’d had it, not just pick a random practitioner. Or there are surgical interventions, and frankly I am leaning towards those. I will try anything. I just want my arm back. I want to not feel deformed. 

The 6th of July. 

I must have done something terrible in a past life. I am currently on my third attempt at backing up my phone after I dropped it on the bathroom floor and the screen cracked in innumerable places. It has landed there many times and finally my luck has run out. Smashed. 

Day started off okay. Hospital this morning for bloods before venoplasty. There was literally nobody in the waiting room which was very disturbing, like a horror film. Thankfully nobody had been murdered, it was just quiet. Trish gave me a stab in the elbow, then I asked about having the PICC dressing changed and the nurse who was around wasn’t signed off on that. She had to get Nicola to come and supervise, then they couldn’t find the butterfly dressing, then they found the last one in the treatment room. Thankfully we did get it done without the line coming out or being shoved too far in. Phew. 

To town! Mommy was having an eye test, and I needed to go to John Lewis because the jacket I bought last week is now on sale for £37 less than I paid, and as they are never knowingly undersold, I was after some money back. The lady on the till was fine with this, she just had to corroborate my story and was happy to put the cash back on my card. Hooray! Then I went to Piccadilly and waited for Mommy to finish her eye test. Had a chat with Jenny about frames but all the ones I looked at were wrong for me. Can’t change mine anyway, they are iconic. Mommy appeared, and Jenny got busy frame-finding. She’s so good, she knows exactly what they have and what will suit you. We settled on some soft rainbow Volte-Face ones, now the horrible wait for new specs! At least it is not me, I get so antsy. 

Got home, ate lunch, phone smashed. Since then, been at the iMac trying to back up the phone. This is my last go, then I’m going to throw myself off the roof if it doesn’t work. 

The 7th of July. 

My back is not going to thank me. I was up until past midnight trying to back up my phone to no avail, and the computer chair is not comfortable. I then spent most of my afternoon either in the wheelchair or the car, so all of that combined is probably going to mean pain tomorrow. 

When I got up, the last backup hadn’t worked, so I tried just syncing it, and I went downstairs to have breakfast and stuff, before going back to see what I could try next. However, when I returned, it had done a successful backup! I don’t really understand how, but frankly, I don’t care. 

I had my appointment at the Stormfront shop at 2.20, but when I got there, the chap said they couldn’t fix it in store; they’d have to send it off for 7-10 days. Um, no. My only option was to see if any slots had become available at other stores. Birmingham was a bust – next Friday. But Solihull had one at 3.40, so I took it and we got back in the car. 

Over at the Touchwood Centre, I checked in with one of the iPad people, then was waiting for my turn when I saw a face I recognised – it was Stuart Yeadon, who I have not seen for about ten years. I had no idea he was back in town, so when it was my turn, he came to take my phone and we had a wee catch-up. He said they could just get it done by the end of the day, so we had to go bimble until 5.45. This meant I spent money. I bought two crochet books and some pants and socks from John Lewis, a Krispy Kreme, and a jumper that was half price from French Connection. We also had a chat with Christine after her dentist appointment, and eventually it was time for us to go back. All had been fine, only the screen had been replaced, so none of the backup stress was necessary! Still, I am just happy to have it back. 

The 16th of March. 

I am home. HOME! I have to go back tomorrow but eh, I get to sleep in my own bed tonight and that is all I care about. 

So the doctors came to see me this morning and said they’d stopped the mero after my 6am dose, so then the only thing that was left to sort out was my oxygen. I explained to them that I do have oxygen at home, so if that was all that was keeping me in, I was very much wasting a bed. They were surprised but pleased to learn this, and said that yes in that case you can go, but we need to confirm with Dr. Sutton. 

Then I spent the rest of the day waiting for it to be confirmed. However, it emerged at about half past four that actually, Dr. Sutton has been on a course all day, but he’d probably agree so that’s fine. But then there were issues with changing the dressing on my line and arranging nurses to flush it. Then they wanted me to come and see the vascular team at eleven o’clock tomorrow, but earlier today the pain team had phoned, saying they’d had a cancellation tomorrow and did I want to come at eleven? Of course, I said yes, so tomorrow I’ll see them, then go up to 516 and they’ll bleep the vascular team, and we’ll talk about my line and hopefully sorting out the motherfucking venoplasty I’ve needed for three months. 

We finally left at six and I am at home and I am really looking forward to my bed. 

The 17th of March. 

Oh, sleep in my own bed is good. I did wake up a couple of times, but so with it for duvet and electric blanket. 

I didn’t get the lie-in I’ve been waiting for because I had my appointment at the pain clinic at eleven. We left at ten to allow for traffic and parking, but even that was not enough as there had been an accident in the Queensway tunnel which made the traffic utterly solid. It was incredibly tedious, but we eventually got to the QE only half an hour late. Thankfully, I was still able to be seen (I did ring to let them know I’d be delayed) and met a Dr. Blaney who has several avenues of thought we might go down – I will start with a patch via the GP, and we have multiple drugs I can try to hopefully find one that works and doesn’t give me side effects. He’s also going to refer me for physio so I will get that appointment at some point. There’s also the option of steroid injections if nothing else works. 

After that, it was up to 516 to see the vascular team about my line. It emerged that nobody up there really knew what was going on, until one of the doctors who’s been seeing me arrived. She went to see Ben about what he wanted, and we went to have some lunch. While sitting in the foyer, I saw a girl I met at Euston recently who I got chatting to about NG tubes (she had one) which was extremely random, but really good because I wasn’t able to get her name or anything before, so now I have a new pal!

Shortly after seeing her, my phone rang, and it was nurse Connor. The doctor had come back and they’d spoken to the IV team and basically, he was going to take my PICC out. That was grand, so we returned to the ward, and I lay down in the consultation room and experienced the lovely sensation of having something really long pulled out of your veins. It’s not painful, but there’s definitely an awareness there. I don’t really remember the last one coming out because I’d had midazolam and they let me do it. Then I had to hang out there for half an hour to make sure I didn’t bleed everywhere, then I escaped (again)!

The 14th of March. 

I am certainly improving, because I am off oxygen! At rest anyway, when I move I’ve still got to carry my pal the oxygen cylinder around with me. 

Ben popped his head in this morning when he was wandering around in his scrubs, presumably talking to patients on his endoscopy list for today. He said the pneumonia test from Heartlands result was back and apparently I do not have it, although it’s an unreliable test so who knows?! Whatever it is, I am going to take a long time to get better; he does not think I should have any long-term damage from either the infection or the pneumothorax so I should get back to where I was. Eventually. He hopes to get me home on Thursday/Friday.

Later on, Dr. Khan and Maria came around, and said much the same. My CRP has come down to 41, and if I were a normal patient, he would discharge me today, but he wants it to get down to single figures which honestly I agree with. Few more days of mero, watch my CRP, plan to be home by the weekend! I said that today I would do another oxygen test to see how much I need and they were very pleased with that idea. 

The rest of my morning, I put up a blog post, and read Dean’s magazine. It is excellent and I would recommend it, even if you’re not LGBT+, there is plenty of content that is interesting. I swear I am not biased. 

Mommy came in at lunchtime and this afternoon we had lots of chats with Jenny, the auxiliary nurse who has been looking after me for most of my time but is now off for 12 days and hopefully won’t see me again, crocheted/cross-stitched, talked to Christine on the phone, and watched The Big Painting Challenge from Sunday. We also did some more oxygen tests, which were good and bad. We found that at rest, my sats are 96/97% which is fine, and I don’t need to be on the oxygen when I’m not doing anything. However, the second test was less successful. I was going to wear the sats monitor and go for a little walk without any extra oxygen to see what the levels in my blood are like when I’m active. I got off the bed and was at the door, working out where I was going to try to walk to, put the sats monitor on, took four steps and they dropped to 85%. Not good. If I want to move around, I’m going to have to take my oxygen cylinder with me. 

Dean didn’t come down because the chemo has totally knocked him which is not surprising; it’s his 13th cycle and it doesn’t get easier the more you have, it just gets worse. Depending on how he is, I might go up to see him tomorrow, but we’ll see. No matter. 

I’m tired. I’d like to go home and sleep on a mattress that doesn’t hum and randomly in/deflate and not be woken up by somebody taking my blood pressure and eat food that doesn’t come in tupperwear or clingfilm and have my right arm be a normal size.  

Hopefully I get most of those things at the weekend. Can’t rush it. 

The 15th of March. 

No news today, I have very much just been passing the time. I have finished crocheting the doily I’ve been doing while incarcerated and the nurses are all big fans of my work. We did get a bit chatty though so I hope I did not get any of them in trouble. 

I did not see any of the consultants today, just Maria took my blood while showing another junior how to do it from a PICC, and she came back to let us know that my CRP is in the 20s now so they’ll take blood again on Friday and if I am lucky they might even kick me out on Friday night! I can hope. Praveen from haematology came to check on my progress so I gave him the latest and he went away happy. 

We (Mommy and I) have decided that what I have is actually still the pneumocystis pneumonia I had before Christmas, but I only had five days of Augmentin for that which is not effective treatment. The test for it isn’t 100% reliable so it’s the most likely suspect, especially considering some of the other symptoms, such as the non-productive cough that I have had for months, which is not productive because the sputum is too viscous to come out. Lovely. Significant hypoxia (low sats) is another symptom, and a pneumothorax is a common complication of PCP, so I think we can all safely agree that I have actually had this since December and let’s be grateful I didn’t pop my clogs because if I hadn’t come in when I did I could have been in trouble. 

But I’ve had enough now. Two, maximum three nights left. 

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 6th of March. 

Good news: my lung has re-inflated and the chest drain is out. Bad news: my breathing is still very poor. I had about eight doctors round my bed this morning (Ben Sutton from respiratory, Sridhar Chaganti from haematology, and all their minions) to discuss what might be wrong with me and what we should do about it. My input was that a) if I’m going to need IVs for much longer, I’m going to need a PICC putting in, and b) I will not have systemic steroids because they make me suicidal. Thankfully, Ben knows Bryony because she is an asthma patient of his, so he was going to talk to her about a line, which made that easy enough. The steroids were to do with treating whatever is causing the inflammation, but I absolutely refuse to have them, especially at the doses he was talking about. Swabs won’t really help in diagnosing the problem apparently, so I’m going to have a bronchoalveolar lavage, which is when an bronchoschope is put down the airway, into the lungs, they squirt a bit of fluid in and then collect it to examine. I will be sedated for that. Ben said he has a list tomorrow and someone else has one on Wednesday but it hasn’t been mentioned again since this morning so I’m not sure when that will be. 

I had a really bad night, so when Mommy arrived with coffee, I was very grateful – such a sleepy bear. We had our lunches, then we had another lovely afternoon with a visitor because Philippa from the liver team came to see me, so she was here for a couple of hours, keeping us amused. However, when it came to be time for chest drain removal, she took her leave. 

That part was far less dramatic than its insertion. I had to do some deep breathing, and on an exhale, the doctor just pulled it out, then put a lot of pressure on to stop air getting back in and to help seal the gap. So far, it seems to be staying up. I have the most ridiculously enormous dressing, but at least tonight I can sleep on my side, the way I am actually comfortable, instead of on my back like a flipped over tortoise. If I get a PICC tomorrow, I will be back to full arm function!

I’m down to one litre of oxygen tonight, and I don’t feel good, but I don’t feel as bad as I did. Back to one day at a time.  

The 7th of March. 

Today has been one of conversations and making plans. No PICC or lavage but I’ll explain about that later. 

I had a very boring morning, and was about to bunker down for a nap (now I can lie on my side it is so much easier to sleep) when Ben poked his head in and asked if it was alright if he brought his medical students in, to which I replied absolutely yes I love furthering the education of baby doctors. A troupe of seven students came in and lined up along the back wall, facing me, and Ben had them try to work out what was wrong with me. Not the whole story, that would be impossible, but the answer they needed to get to was the pneumothorax. They could ask me loads of questions, and I did have to give them some background information so they weren’t completely baffled by some of my answers. Ben also asked them general medical questions that were not entirely related to me which probably did not help them on the right path. At the end, one of them had to examine me, at which point she found the dressing from the drain, and then they guessed pneumothorax! Then Ben got me to show them my liver scar except he was expecting me to have a Mercedes when I actually have a hockey stick but hey, they still learned something. 

This afternoon’s visitor was Bryony! She had seen my name on the referrals list and was like MINE THIS ONE IS MINE because I am too complicated. Basically, I can’t have a PICC because they go into one of my veins that is already trashed from lines, so she’s liaising with Andrew and Ben, because if they put in the kind of line she is thinking of, there are certain drugs I won’t be able to have because they won’t be within the pH range that will work. I may or may not be having the lavage, depending on my oxygen requirement, but at the moment it isn’t improving. 

I had a shower this afternoon, or rather, I sat on the shower chair with the oxygen on and Mommy essentially hosed me down with the shower and I scrubbed myself with a loofah. It was a very dignified exercise. It is nice to feel clean.

As it is now gone eight o’clock and Bryony hasn’t come back to me with a plan yet, I expect to hear from her in the morning. Unless the nurse tonight has some information that I don’t know about. Either way, I may have to delay my breakfast until I know what’s happening. 

The 13th of February.

Oh wow I am sore. I was up at quarter to six so we could go to hospital for half seven. Thankfully, things in ambulatory care went well РI read the paper and ignored my grumbly tummy because I was nil by mouth. A nurse called Sonia admitted me, and not long after, they came to take me to have my line put in! Had to have the long chat about periods and how there is definitely no chance I could be pregnant, and go through all the risks on the consent form. They gave me some midazolam which made me a bit sleepy and fuzzy, although I did have to ask for some more because despite the local, it was still pretty uncomfortable. Once it was over, they let me pull out my PICC line which was fun! It was much longer than I thought.

They took me back to ambulatory care where I had to stay on bed rest for two hours, but I was allowed to sit up so I could adjust my body to aid comfort. Once the two hours were over, I was allowed to get dressed and go up to photopheresis. That went really well, thank God. The line is in a good place, so it won’t be awkward to get out of clothes, and we’ll be back tomorrow. I might need a bag of blood or two in the morning. I really hope not as that would make it such a long day.

Becky came over with some brownies and they were very tasty. I’m going to have an early night tonight; I’m so achy.

photo 1

Ambulatory care.

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Post-op breakfast, yeah!

The 14th of February.

Well my Valentine’s Day has been such fun. It began with me chasing the nasty black and white cat out of the front garden (a spectacle I’m sure the the neighbours all enjoyed), then going back to hospital early because I needed two bags of blood before photopheresis as my haemoglobin yesterday was only 9.2 and they prefer it to be over 10.

We got there at about half past nine and the blood didn’t arrive for at least another hour, so I just read my paper and waited for the porter to bring it. The transfusions were all very run of the mill; made me quite pink and warm but all in a good way. Then just after two o’clock, I was ready to get going on the photopheresis machine. Just before I did though, I thought I’d pop to the toilet, where someone had forgotten to lock the door so I walked in on an elderly lady who was obviously a patient sat on the toilet. I just blurted “Sorry!” and shut the door as quickly as possible. I went into the next toilet and made very certain that I locked it.This was all fine and dandy and I was pootling along, then when my cells were being returned, the machine kept alarming and not wanting to play the game. Eventually we swapped lumens, because the intensely high-pitched beeping were adding to my level of stress, which was further compounded by the fact that we were forced to listen to Radio 2 all day. We hate Radio 2. At the end of the treatment, you get a time of how long it’ll take to photoactivate the cells and give them back, which is usually about 15 minutes for me. Today, it was 99. It was a good thing I took a lot of food to keep me going! We finally left hospital at six. I was so on the edge of bursting into tears, I can’t explain.

So tonight I am absolutely drained. I’m still very sore and achy, and I would just like to sleep for a week.

And to round off my wonderful day, I whacked my head on the staircase after putting my boots down underneath it.

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We had to make Valentine’s Day cupcakes for a tea party at my Grandma’s nursing home. Seriously.

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Home time.

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