Archives For ambulatory care

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 23rd of April.

Oh god I have never been so excited about the fact that it is Monday tomorrow. Maybe my four month long saga of the fat right arm will be over soon.

Somehow I managed to press the snooze button this morning without my knowledge, but I didn’t continue to sleep for too much longer. I think I was slightly less coughy, but I had Zopiclone so it’s hard to remember. Thankfully the rest of the day has not been necessary to remember anyway.

Shockingly, it’s been mostly tv. Sunday Brunch in the am, Netflix this afternoon. I had a break in the middle for my traditional Gardeners’ Question Time and a lie down/pretend nap, but that was pretty much my only non-screen-based activity. On Netflix, I watched the first two episodes of 13 Reasons Why. I think I’ll download the next several to watch while I’m having to lie flat in ambulatory care tomorrow.

The 24th of April.

So it is done. I am praying so hard that it has worked this time but honestly I’m expecting to be disappointed.

Mommy woke me up for toast at quarter to seven, and then I couldn’t go back to sleep. I managed to kill time until we had to leave by redoing some crochet that I’d done wrong, and we set off just after 10:30. Parking was a nightmare, but we drove round enough times to chance upon someone leaving. Before going to ambulatory care, we went up to 516 to give Jenny her bear. She was delighted and put him in her pocket. We couldn’t stay too long, so we had a brief chat, then we went back downstairs and she went to check patients’ blood sugars.

I checked in at the desk at ambulatory care, then had to wait until the afternoon patients were let in. While we twiddled our thumbs, we saw Vash, the mother of a girl I was treated with at BCH. Turned out she was in a cubicle in there with some mystery virus. She did not look well, poor thing.

I had a very nice nurse who liked my hair (actually nearly every person I met commented on it) and got admitted pretty quickly, then a nurse from angio came for me because I was the only one on their list this afternoon. When we got down there, I went through the theatre check list again, and Andrew came for a chat. He explained what he was going to do, and we talked a lot about gadolinium (the dye he has to use instead of the iodine-based contrast he normally would), because I have so much during these procedures, more than a patient who’s had a lot of MRIs, more than anyone he’s ever seen and there are no studies on how this much of it can affect a body so he has concerns about that. I am just tired, I want it fixed.

We went round to the suite we were going to use. I shuffled across onto the bed and there was a who, then Andrew went to scrub in and the nurses prepped me. Covered in iodine. Once everything was set up, Andrew ultrasounded the edge of my groin to find the vein, then one of the nurses came to distract me while he got stabby with the local anaesthetic. He tunnelled up as far as he could, then he put some local in my fat arm and drove a wire up the vein in there so the two nearly met, and he used them to measure the blood pressures in those vessels, and he did a run of contrast so he could see if any strictures were there. The one he blew up in January had returned, so he was going to have to inflate that again, but with a better balloon this time. Before doing that, he wanted to use the IVUS to make sure there weren’t any more, and to get some more information about my superior vena cava. I could see the screens today, so I can tell you that an ultrasound inside your veins looks like the title sequence of Doctor Who. Like going into a black hole. From this, he was able to glean that there isn’t any more narrowing, but it is scarred. Lines for seven years will do that to you.

Satisfied that I only needed the one inflation, he gave me some sedation (they are not comfortable experiences) and I had a tiny nap. Then all the tubes and wires got pulled out and I had to lie there while he pressed very hard on the puncture site to stop the bleeding.

In recovery, I had some water, then the nurses took me and my notes back to ambulatory care. Mommy was coming back in at the same time, so we both returned to my bedspace and I told her what had gone on. Andrew came round too, and we talked through what he’d seen. He also explained that there’s no point in strenting the vein he inflated because it’s surrounded by bones and fibrous tissue so would probably just get crushed. I have to keep wearing the sleeve and squeezing the stress ball, and hope that this time it’s had the desired effect. I’ll get an appointment for his clinic. Maybe I’ll be able to wear something that doesn’t drown me.

The 25th of January.

Venogram day!

I was up at six, and having got dressed, I drank as much water as was humanly possible before my cut-off at seven. We arrived at ambulatory care at about quarter to eight, and we sat around for forty five minutes reading our books before the nurse came to start going through the checklist. It became apparent that the doctors wanted my potassium checking because it was high yesterday, but it was fine today. At half past nine, I was told to gown up because they’d be coming to get me soon, but then they actually didn’t arrive for two hours. There had been an emergency in angio so I was not angry, just bored and hungry. So hungry.

The nurse in imaging clerked me in (the amount of times I have repeated my date of birth, address and the fact that I am NOT PREGNANT today), then Andrew and the doctor who was working with him came to see me, and we talked through the plan. Andrew had the same theory as me, and the intention for today was to do the venogram and if we could do the venoplasty then he would.

I got taken into the angio suite, and everyone introduced themselves while I and the room got prepped. I got to be in the Who which is fun – normally I’m asleep for that part. While the doctor shoved the wire up inside my vein, the nurse on my other side stroked my hand and tried to distract me by talking about bees. I love that they do that kind of thing. We both knew what she was doing, but it is like a quiet contract we both entered into. They took some pictures of inside my arm, and it was found that I had a narrowing in the subclavian vein (not the superior vena cava like last time). I hadn’t had a massive amount of gadolinium (the dye they have to use because I’m allergic to the CT contrast dye they would normally use) yet so they gave me some fentanyl and midazolam, then I had a lovely nap while they inflated my vein. Hopefully that should do the trick, but if it doesn’t go down in a couple of weeks, I’ll have to go back to have something more invasive and permanent, like a stent. Let’s hope not.

The 26th of January.

Ooh I am so tired. Very long day. I’d not long finished my breakfast when my phone rang – it was a journalist called Christine who had got in touch with me via Anthony Nolan and wanted to do a kind of basic interview before she goes pitching the story to different publications. Sounds like it’s going to somewhere like Woman and Home or Woman’s Own right now.

When I’d finished talking to her, there was just time for me to eat some lunch and sort out my bag before I had to go to the station. I got taken to my train, but before we set off, there was an announcement to say there had been a fatality, so we were being diverted via Stafford, so would be skipping some stations. We eventually arrived in London forty five minutes late.

I had planned on going and doing some shopping but that seemed rather pointless and expensive considering the cost of cabs involved and the time I’d get to spend in the shops, so I went to Origin Coffee and had a flat white and a brown sugar cookie while looking over the NHS documents about second transplants. I get more angry every time I read them.

I sat and watched people go by for nearly an hour, then I needed to get a cab to go and meet Lauren and Amy for dinner. I thought it would be easiest to get one from Euston, so I drove back down the road to the station. I also had to pee and the disabled toilets at Euston are all out of service so someone had to let me in the baby change toilet instead, but at least it meant I didn’t have to pay!

I was able to pick up a taxi without too much difficulty, and he took me to The Diner in Camden. They found a ramp so I could get inside, then I got settled in a booth and had another coffee while I waited. Lauren was a bit late because the traffic was awful, but it was fine because there was a couple with two cute little boys nearby who were very entertaining.

When she did arrive, she gave me my birthday present of the Ruby Tandoh book, so I can make lots of tasty foods. Speaking of tasty foods, she ordered a vegan burrito and I got some pancakes with bacon to make up for the lack of pancakes on my birthday. Amy arrived mid-meal (she did say we could order without her), and we got to just have a nice dinner and talk about normal things, like Lauren’s move and an exciting project which Amy has been put forward for. I got my arms out, and Lauren found the size difference absolutely hilarious. She is one of the few people allowed to laugh. I’m actually fairly sure it’s got worse since yesterday but I just have to watch it.

I kind of had to leave in a rush, hauling my chair out of the door just in time to get into the Hailo cab. The driver was wearing shorts, which wasn’t then great for him when we got stuck outside the Anthony Nolan office gates and he stood around ringing bells until I got through to someone on the phone who let me in.

I was the first one of our group to turn up, followed by Jack, who is a supporter running the marathon (again), and Hayley and Jess who are both heavily involved with Marrow. We got started very promptly at eight, in a session facilitated by Ammeline, who does not work for Anthony Nolan. We began with an exercise saying what kind of animal we would be – I decided I am a panda because although everything seems to keep telling them to die, they just refuse to and I think that’s like me. Plus I’m cute. Then we got on to the subject of charity and Anthony Nolan specifically, what they do well and what they could do better. We were kind of biased because we love them, but we were able to come up withe some things.

I had to leave before we officially finished, because I needed to get back to Euston, although I don’t think it was going to go on too much longer. The car that arrived to take me there was a Mercedes, non-accessible, so I had to collapse the chair and put it up again at the other end, which was a disaster for breathing. It took ages for me to get back to normal.

I bought a hot chocolate and went to the assistance office, where the man told me to go down to the platform where his colleague would meet me. He did not appear, and after ten minutes of waiting in the freezing cold, I rang the office back and he was confused as apparently he’d rung the man “ages ago”. When he finally ambled up in his buggy, he was then pretty incompetent at putting the ramp on the train so having got up to my seat, I did not thank him.

We got moving, and I was desperate to sleep. However, I cannot sleep in a place that isn’t my bed and especially when I’m not even poorly, and I am paranoid about missing my stop. No sleeping was going to happen until I got home. Unfortunately, this train got delayed too because an engineering one in front of us had a problem so we got stuck outside Milton Keynes for forty five minutes. So dull. We made up a little bit of time, but still didn’t get to New Street until one. Tired, cold, in pain.

The 13th of July.

Spent all afternoon writing up blog posts about holiday and now have to write about today! Well I had lorazepam but my body wasn’t really playing ball so I woke up at nine, despite my best efforts to stay asleep.

This morning I half-watched Sunday Brunch and Mommy washed my hair because it was disgustingly full of product. I haven’t been able to do much that requires memory or skill as lorazepam just completely removes that, so I’ll have no real knowledge of what’s happened today.

Becky and James came over and we exchanged stories of the week and we gave them their holiday presents.

The majority of my afternoon has been me typing up blog posts to be posted in stages, and having a brief look at my medical notes from BCH, knowing there was no point trying to retain any of it. Will read through them again when I am more compos mentis.

People are going to rummage around in my chest tomorrow. Then I’ll finally get some photopheresis, but not before I’ve had to go back up to 15mg of pred and negate all the hard work I’ve done. Fucking doctors.

The 14th of July.

New line day! I woke just in time to stuff a bagel in my face and finish it at 7.59am, since I had to be nil by mouth from 8. No coffee (dying), no anything. Needed distractions so we went to the sorting office for me to pick up two letters from BCH with my radiology imaging and the password so that’s exciting.

We came home so Mommy could go round the corner to look for a card for Pam, then we went to town to get some cards for me to give to people, a nice sandwich for when I was allowed to eat again, a CD-reader for the iMac, and some cotton pants from M&S as I forgot you have to wear them for surgery and I didn’t want the paper pants again. I did end up with styrofoam slippers though.

Then it was off to ambulatory care where we didn’t have to wait too long – I was first on the list and went down at quarter to two, saw the man who did my last line and we confirmed that I was having an apheresis line and some woozy drugs and once we were set up and he was in, I had some Midazolam and fell asleep until it was over.

Then I had to stay on the bed for two hours and sit in the chair for an hour before I was allowed to go home so we finally left at about six! Long day.

He’s put it on the same side, so I’m really quite achy. Paracetamol before bed.

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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.

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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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