Archives For venogram

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 2nd of February. 

It’s been a very busy day. As soon as we arrived at the QE, we bumped into John Higham from the dental hospital (there with a family member, not ill himself), and then Janet, who adopted Monica from us ages ago. She’s doing really well, climbing up onto their garage roof, yet when she was with us, she couldn’t even jump onto the windowsill. 

Andrew saw me super promptly, which was excellent. He showed me the pictures from the venogram, and it’s quite obvious that what he did should have worked. He doesn’t want to go back in immediately, which is understandable, and having looked at my arm, our first port of call is going to be a compression garment which he is trying to get organised as an emergency (it normally takes two weeks to get an appointment). I have to keep it elevated, and squeeze a stress ball a lot to encourage blood flow, and see him again in a couple of weeks, when we’ll talk about next steps if necessary. 

We were meeting Naomi for lunch, and there wasn’t time to go home and back again, so we went into town. I bought a new jumper with large sleeves to add to my current rotation and spent the book token I got for my birthday on Negroland by Margo Jefferson. 

We got to Strada first, and it was full of elderly people obviously going to something at Symphony Hall. When Naomi arrived, I gave her the bunny I made, and she was delighted. She was very interested to hear about my most recent Anthony Nolan trip and to talk about the charity – she’s learning more about how they work because she’s choreographing the new show being created about Kids Company that’ll be on at the Donmar in the Spring. Must go see it, it sounds like it’s going to be fascinating. 

I had pizza and a chocolate fondant, neither really worthy of photos but very tasty. She had to go at half two because she was seeing Love at the REP, and we came home where I have done very little except squeezed a stress ball. 

The 3rd of February.

Bleah, my cough is extra rubbish today. I can feel the gristle in my lower ribcage as the bones grind together. It’s really not very pleasant. 

This morning, I did the blog post I should have done yesterday, and I started taking some diuretics. We thought it was worth a try to get some of this fluid shifted, so today has also involved more peeing than is normal. Maybe they, along with the stress ball squeezing and arm elevation, will help the fluid. Heard nothing about the compression garment.

After lunch, Daddy and I went to see Sing. It was that or Hacksaw Ridge, and I thought I needed the light relief of singing animals. I was not prepared for the ten or so children who were there – at a two o’ clock screening on a weekday, there should not be loads of kids, no matter what the film. If they’re ill, they should be at home, if not, they should be at school. I had to shush them several times because their parents were not doing anything. 

Apart from the children, I did enjoy the film. Rosita is my favourite – I love her and her piggy power.

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 17th of January. 

I have a venogram appointment! I checked on myhealth this morning, and I am booked in for the 25th at 9am. No letter yet, that will probably be tomorrow, and will include more detail. Looking back at previous venograms, there have been occasions when the venoplasty’s been done immediately, and when I’ve had to go back and have it another day. Fingers crossed it’s the former but I have no clue. 

This morning, I wrote up a post and painted my nails while watching Theresa May’s Brexit speech. It was not particularly illuminating, apart from making it obvious that if we don’t get what she wants, we are quite screwed. People keep saying “We haven’t had the Brexit crash that was predicted” like it’s fine but they don’t seem to have realised that we haven’t left yet.

Mommy has been out most of the day, taking Grandma to a funeral, coming home, reading a letter, and having to go back to Grandma’s to tell her that this letter said that her cousin has died. Not a great day for her. 

I watched the final three episodes of A Series of Unfortunate Events and crocheted. I had started some pyjamas for the doll I made ages ago, so now she has the trousers and I’m working on the shirt. 

Phoned up several potential adopters to have the standard conversation, had to explain that we actually have practically no cats/kittens at the moment, but they are willing to wait. 

The 18th of January.

Today has seemed to go by ever so quickly. I looked at the clock and suddenly it was half past three. Where did the time go?

This morning, I was able to have orange juice with my breakfast for the first time since before Christmas. Think my mouth might be okay to eat fun things on my birthday, maybe even have some champagne! Such excitement. I have ordered a mini Curly Wurly cake for us to pick up on Saturday and I’ve been trying to decide what I’m going to wear. Thankfully we’re not going anywhere fancy so I don’t have to worry about a dress code, but I’d like to look reasonable and that’s tricky when one of your arms is massive. I’m not sure whether my leather jacket will fit so we’ll take the furry lining out of my park and then I think it will be big enough to accommodate the enormo-arm. 

After lunch (during which I had an apple, another thing I haven’t had for ages because it was too pointy), I had a Cats Protection call, then I made the pyjama top to go with the bottoms. I now remember why I’d stopped doing stuff from that book – it has mistakes as it’s a translation. Bah. I also started a new series on Netflix called Glitch. It’s like The Returned, but Australian, and they all crawled out of their graves at the same time not knowing they were dead. I’ll see how it goes. 

Hair change tomorrow. What colour to go?

The 13th of January. 

Not so much crocheting today. Less time. After breakfast, I did a blog post, then I spent the rest of my morning assembling the monkey. One down, one to go!

Had lunch, then shortly after, Daddy and I went to see La La Land. Not the only ones in today, unfortunately, but the few chatty youths that were there did stop talking when the film started. 

I loved it, as expected. I have downloaded the soundtrack already. I shan’t express any opinions about what happens because I don’t want to spoil it for anyone. There is a scene which pretty much broke my heart because it reminded me so much of dates I went on as a teenager and I don’t think I’ll ever have that experience again. Bah. 

More news tonight about the crisis in the NHS. How the government can keep saying it’s okay is unfathomable. Saying that they’re giving the NHS more money, but it’s not as much as they say, and they refuse to put anything into social care so it doesn’t work. They say it’s better than last year’s winter but the truth is that the really cold winter hasn’t even come yet. I’m waiting for this venogram and have been told it’ll be in the next ten days or so, but I’m hoping with every fibre of my being that it’s not the 21st or 26th. However, if they do want to do it then, I really don’t know how I could ask for it to be changed. 

The 14th of January. 

Crocheting all done. Need another project. 

This morning, while watching Saturday Kitchen, I did the other arm and the tail of the bear, then assembled him. He currently is being straitjacketed by some elastic bands to hold his arms in or he will look a bit flail-y, but I’ll remove those before Monday morning. Also his eyes are liable to disappear into his head so I might need to warn James about that. Still very cute though. 

This afternoon has just been me and Netflix. I finished The OA – it’s great and I got very emotional at the end but I’m annoyed because it was ambiguous. I really hate ambiguity – I like everything to be wrapped up in neat packages. Not sure if a second season would be right though. 

The other thing I watched was the first episode of A Series of Unfortunate Events. It’s really good – they have kind of taken elements of the audiobooks and the film and made it their own (I hate that phrase). I wish they’d asked Stephin Merritt to do the title music, but that is my only criticism. Also I am intrigued by what they did at the end (no spoilers). 

The 3rd of January. 

Of course the day we cancel my chiro appointment because I feel like crap, my neck starts acting up. It was fine before today, almost as if it knows. So unhelpful. Still, we spoke to the QE this morning and I can go to clinic tomorrow so finally I might get some things done about my feet, hands and arm, which are the most pressing issues. 

The only other thing I did this morning was a blog post, and I had a nice sit with the kittens – trying to squidge them as much as possible before they go to the adoption centre. 

This afternoon, I had the joyous task of phoning lots of potential adopters. A couple of people have changed their minds or got kittens from elsewhere, so I could tick them off the list, and most of the other forms I had, I forwarded to the one fosterer who has most of the kittens in branch. 

Since then, back to crocheting. I think I’ll have another early night tonight; I’m still super tired, and seeing as I need to be up early for clinic tomorrow, I need all the extra minutes of sleep I can get. 

The 4th of January. 

Neck not so painful today, I knew it was just throwing a strop. Thankfully, clinic this morning was helpful. I saw a specialist reg called Praveen who I’ve not met before, but he was very good. He took what I said seriously, and has some solutions, or at least the beginnings of them. My hands and feet are probably GvHD, so just carry on with the steroid cream, and about the arm and the eyes, he went to talk to Ram. He came in to have a look and said to email their man in opthalmology (pretty sure they knew what it is but I need to see a specialist to be sure – probably an eye GvHD thing) and call Andrew Willis, which he did there and then. He wants a venogram and the request has been put in so hopefully that comes through quickly. 

Popped into town on the way home to get Grandma a birthday card and a present as it’s her birthday on Monday. Meant to get some thank you cards but I forgot because I’m a nitwit. 

This afternoon, I have been watching Nashville and Conviction while crocheting. Got two episodes of each watched, and I’m on the last stripe of the blanket. I haven’t actually tried to get in it yet – I will be mightily pissed off if it’s too small. It shouldn’t be. Fingers crossed. 

The 4th of February. 

We’re on our way to having a plan! Ugh I’m complicated. I’ll explain. We got to the QE at the crack of sparrowfart for my venogram at nine. I know so many of the people in that department now. Andrew Willis came to have a chat before I went in to just go through what would happen, then I got taken through. The first bit is somewhat dull, everyone saying hi and doing all the safety checks. I had to have a cannula in each arm, but in the left arm, my veins did not co-operate. The first two went in the tissue, then they got the ultrasound machine, got one in the vein but it then blew, and then finally we got one in the right place. After that, it was very quick! Put the drug down the arms while I hold my breath and the radiographer takes a picture. That’s it! Andrew came to have a look at it and he was happy that we didn’t need another, so I was able to go and get dressed, then we’d have a chat. The pictures have apparently been very helpful, because we have a couple of problems. Firstly, the narrowing is indeed back as I suspected. The second thing is that the internal end of the line is causing some blood to divert into a vein it isn’t supposed to be in, which is a Bad Thing. Basically, lots of doctors need to have lots of chats, think carefully, then they’ll make a plan and let me know. I think what will probably happen is that I’ll have a venoplasty every few months until the line comes out. But we’ll see what they decide. 

Came home where I had breakfast (I’d not eaten just in case) and since then I’ve not done much! My load of wool arrived so I’ve started Simon the Sheep, but I can’t do much with my left arm as there was so much digging around in it this morning. 

The 5th of February. 

Today has been really rather good. I had a Zopiclone last night and it actually worked which was a relief. Nice big sleep for me. This morning both my arms were so swollen but I think that is just a result of them being messed with and having drugs put in them. I am relying on Andrew to have chats with Igor and Ram and I might get a phone call tomorrow. I hope so. 

I crocheted the head of Simon the Sheep, then I was emailing Julie about a piece in The Sunday Mirror or Sunday People that’s going to run this weekend. It’s similar to the Grazia piece, but more around Valentine’s Day instead of Christmas. 

This afternoon, we had the delivery of the mini oxygen cylinders, and Fiona and Phoebe came round! We had enormous fun watching a DVD of our Year 6 school play, being nostalgic about the good old days. Phoebe has taken the crochet bunny and tortoise because they basically went straight in her mouth. She had a little sad but then after some milk and a nap she was chirpy again. 

They had to go home for Pheobe’s tea at five so during Pointless, I used my new oxygen cylinder to do some exercising. Just some squats, sit ups and light weights, but it’s given me confidence that I will be able to do things again if I keep this up regularly. I will get there.