Archives For venoplasty

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 28th of June. 

I am very confused. I checked myhealth this morning, and it said that I had a venoplasty date! The 19th of July. However my later on this morning, while I was watching the Pretty Little Liars finale (which I will get to in a minute), I got a phone call from Andrew’s secretary to let me know that I had a date and it was on the 12th! And she said that Tracey would ring and I’d get a letter, so I’ll just see what they say and if there’s a discrepancy, we’ll have to ring again. Either way, I have a date! Finally. 

So, Pretty Little Liars. First of all, I don’t know why we needed all the gratuitous sex scenes. Waste of time. Also, we didn’t need any of the scenes in the school with the new teenagers. Do not care. Then, mid-way through, when we had the Spencer’s twin reveal, I was quite pissed off. And TroianBellisario ‘s English accent was absolutely atrocious. She is such a good actress, it is bizarre that she thought that was a good choice. Apparently it is based on people from TOWIE/the fact that her character would have grown up on the streets, but that only makes sense if she was hanging out with the Artful Dodger and Fagin. So I was annoyed for a little while, but then I just thought “You know, this show is so ridiculous and stupid, why did I expect it to actually tie anything up?” so I stopped caring and just enjoyed the silliness. 

This afternoon, I wrote up a blog post, then I watched the iZombie finale (less shocking but I’m very interested in seeing where the next season goes) and another Orphan Black. Also my we’ve booked tickets to go and see Committee, the musical about Kids Company that Naomi has been developing. Really looking forward to seeing that!

The 29th of June. 

It’s definitely the 12th. I checked myhealth this morning and now it says the 12th too. So no phone call or letter but hey ho, we’ll go with it. Less than two weeks away. I will be counting down the days. 

I can’t really remember what I did this morning. I got annoyed with the repeated interviews on Victoria Derbyshire, so I went to sit with the kittens, and I suppose I just wasted a lot of time with them. They let me stroke them when they’re comfortable on the floor. Still not fans of being picked up though. 

This afternoon, I had a hairwash and listened to today’s My Dad Wrote A Porno Footnotes featuring Mara Wilson, and responded to Christine’s texts while she watched Pretty Little Liar. I tried not to give anything away in my replies. Then I went back to the kitty room where I watched the last three episodes of season 1 of Orphan Black. On to season 2!

It is too cold for June. I am absolutely freezing in my jeans and a jumper. Extra blanket tonight I think.

The 26th of June. 

Ughhh NO PROGRESS. Rang Tracey this morning and she doesn’t even have me on her disc (whatever that means), despite saying ten days ago that she had my paperwork. She has to talk to the other person who does bookings, and they’re not in until tomorrow, so we’re ringing back tomorrow late morning/early afternoon. This is so hard. I feel like giving up. 

Mommy and Daddy have had an impromptu trip to Wales today because upon discussion last night, it was realised that today was the only day they could go. Someone had to stay behind to look after the kittens and considering what a day in the car does to my back, that was me. 

I don’t really know where my day went. I wrote up a blog post this morning, and I did some shouting at the Daily Politics before going to check on the kittens. They had put one of the mice in the litter tray, and we had a nice play until Betty decided to poo. 

To cheer myself up, I listened to the new episode of My Dad Wrote A Porno while I ate my lunch. Then I watched the season finale of Agents of S.H.I.E.L.D and upset myself again because it was really sad when Hope disappeared. A man came to the door with a survey, and I had nothing better to do, so I took part, answering questions about whether I trust the government and if I am concerned about being a victim of cybercrime (I don’t and I am not). I suppose the rest of my afternoon was Orphan Black on Netflix and kitten petting. Now I’ve ordered pizza and am awaiting the return of my parents. 

The 27th of June. 

First thing I did this morning was email Andrew’s secretary. She must have gone straight to him, because about five minutes later, my phone rang, and it was the man himself. I tried to explain my frustrations, and I think he understood. He said he would get Tracey to sort it out and ring me back with a date. She hasn’t yet. He also said he thinks there could be a lymphoedema element, basically he is trying to prepare me for it not to work. If that happens, I don’t think he’d do the rib-removal surgery without me seeing a specialist first. However, not a lot of doctors really understand it very well. He better have a friend he can refer me to. I am not spending another six months like this. 

So I’ve spent a lot of my day staring at my phone. Mommy and I watched last night’s Great British Menu, then she went to Grandma’s. I watched a bit more of Orphan Black, and I’m just blown away by Tatiana Maslany’s ability to play so many characters and constantly act against herself. Felix is my favourite. I could well just blast my way through this show, considering I’m already halfway through the first series. 

A family came to view the kittens this evening. A couple with their six year old daughter who want two playful kittens. Now, mine might not be super friendly, but they do love to play. I got some toys out, and soon they were selling themselves. They want Brodie and Bailey, so now we just need to chip and neuter them and they can be adopted. Then find homes for Bree and Betty! Phew.

The 22nd of June. 

19 degrees. Much more comfortable weather. From the clouds I can see, it looks like the rain is coming. Good. I love a good storm. 

I’ve had a relatively busy day? This morning, I got the new episode of iZombie watched (and almost shouted SHIT and grabbed my face at the ending), then Shaki came over. She had the vet histories of the kittens which didn’t correspond to the names she’d given them so had to rewrite all their forms, and it meant we could now identify which is which. So the one we were calling Betsy is actually Bree, Brodie is still Brodie, the lighter brown tabby is Bailey, and the darker one is Betsy. Once I knew that, I could book them in to Lydon’s for their first set of vaccinations. 

This afternoon I was back at Black Sheep for my colour change with Danyl. We had a chat and I told him about my ice cream kind of inspiration. First we bleached it all, then pink around the sides and at the roots, then added in a coral colour on some of the tips. I’m now a raspberry sorbet/fruit salad/drumstick lolly. 

That was my afternoon gone! Got home just before six, checked on the kittens, and have just heard news that my friends Vicky and Laura have got engaged and I am so happy!

The 23rd of June. 

Well we didn’t really have a storm, but we have the post-storm colder weather. I’ve had to put socks and a cardigan on. 

We were out at the vet at 9.20 for everybody to be jabbed. Although they were running rather late, so we amused ourselves watching the bunnies and baby and dog that were also in the waiting room. Our kittens just went to sleep. Even when we got called in, they stayed pretty relaxed. We did Betty first, then popped her into a separate carrier so I could get at the kittens. They were all fine, nobody struggled, just Bailey needs to eat a bit more. Get her up to a kilo, then they can all be neutered.

Since we got back, they’ve all been totally wiped. Just slept all day, flooped on the floor. I have written up a blog post, had some lunch, done some crochet. Listened to some podcasts, from a whole bunch of selfies to get a good photo of my new hair and iced some cupcakes. 

Daddy’s labyrinthitis has kicked off again, so he was throwing up from late morning until mid-afternoon. He’s only just come downstairs. 

Last night, Bree scratched my right arm, and water came out. Teeny tiny amount of blood, but mainly water. So I suppose if the venoplasty doesn’t work, we stick a load of needles in my arm and squeeze. We’re ringing on Monday. I don’t give a fuck, I have been like this for half a year and it is unacceptable. 

The 14th of June.

It feels like we are just lurching from one tragedy to the next at the moment. Every week there is another atrocity, and it seems every single one is political. There is no doubt that the fact that this is a deprived area with poor residents, and that things have been done on the cheap will have made it worse, and the fire service were unable to tackle the blaze as effectively as they might have because they’ve been decimated by the cuts that Boris Johnson made. Heaven forbid there was a fire anywhere else in London. Just last year the Tories voted down a bill to force landlords to make buildings suitable for human habitation (surprisingly, 72 of them are landlords themselves), and Theresa May’s new top aide has been sitting on a review of fire regulations for months. They kill people. Every day. 

I had haematology clinic this morning, which was not enormously productive. I saw Praveen and updated him on my current circumstances, and he emailed Andrew. The most important thing was that we get some drugs, because my prescription got completely messed up when I was in.

I spoke to Emelda, Andrew’s secretary, and she has assured me that the paperwork has been sent and I should get a date for my next venoplasty very soon. I really bloody hope so; it was super warm today and I want to be able to show my arms without feeling like a freak . 

This afternoon, I hid from the news. I put on a sheet mask, watched Pretty Little Liars and iZombie, crocheted. I am lucky that I am able to escape from it. I can’t imagine the terror felt by those on the upper floors; if I were in that situation, I would find a way to kill myself. Absolutely petrifying. 

The 15th of June. 

I’ve been awake on and off since just before six this morning. It was too hot. Not surprising when you consider I still had my winter duvet on – it has been changed now so hopefully tonight I won’t be so warm. 

Quiet morning. Breakfast, coffee, then out to Black Sheep to get my hair cut at half twelve. Michaela was delighted by my FucktheTories necklace and immediately called Danyl over to see, who was straight in for a high five. I have decided he is going to be my colour guy now. Booked in with him next week. My hair was getting pretty long, so we decided to chop off all the back and sides. There’s only so much that can be changed when it’s this short already but Michaela can always come up with something. 

As I was leaving, I went to get in my chair and there was a lady sat by it with a great little chihuahua called Dolores. She was also a fan of my necklace and we had a photo together. 

Got home shortly before two, and this afternoon I have been crocheting, then unravelling because I changed colour and the new thread was thinner, so it has made the whole doily curl inward. Redo with a thicker one. The fluid in my arm makes it ache. 

The 12th of June.

It’s Daddy’s birthday!

He had already gone to work by the time I got up, which was a good thing because I hadn’t written his card yet. We’re going to take him to the Pink Floyd exhibition in London for his present, so I didn’t have to worry about that.

I had a phone call with Anthony Nolan this morning because they need examples of post-transplant care, so I was telling her how excellent mine has been. I know not everyone is so lucky. Then I had a chat with Nationwide because they had frozen my debit account for no apparent reason and hadn’t told me. It turns out that I had used it at a cashpoint or on a website that has left me exposed to fraud so they’ve had to cancel it. Well, that’s fine, but they could have sent me a letter? I’ll get a new card,it’s all fine.

This afternoon, Mommy and I went into town to take back all the kimonos I didn’t need. I also needed to get some facewipes, then we went into Selfridges to get Daddy some token bits – essentially fudge. I also bought myself some espresso chocolate spread so I’m very much looking forward to my toast in the morning.

Once home, I finished crocheting the bear, so he can go in the post this week!

The 13th of June.

I am annoyed and sad. Finally managed to speak to Tracey (the booking coordinator) and she hasn’t even had the paperwork yet. I have haematology clinic tomorrow so we’ll get them to chase Andrew. It’s all well and good for him to say “Yes we need to do another venoplasty” but if he doesn’t send the paperwork for three weeks I’m going to have to wait even longer for this nightmare to be over. It has been six months and it should not be this hard.

My alarm didn’t go off this morning so I didn’t wake up until quarter past ten. Thankfully I didn’t have anything that needed doing, but I still don’t like waking up that late. I got to have my coffee spread on toast for breakfast though, so there was that.

Since talking to Tracey early this afternoon, the heavy cloud has descended. I don’t think it’ll be a long-term storm, but it’s here all the same. I’ve just sat crocheting, listening to podcasts, trying not to think about it. I’m just so tired and it feels like nobody is trying.

The 25th of April.

Everything hurts today. I am tender all over. My body did not like being invaded so I am being a delicate flower.

My day has been punctuated by half-hourly squeezing of a stress ball with my arm up in the air. It is the only thing I can do that might make my arm go down. I’m not convinced it is going to work but I am desperately hanging on to anything that may make a difference. If this doesn’t work, I don’t know what I will do.

This afternoon, I wrote about yesterday’s procedure, then I went to sit with Sam for a couple of hours. I watched Netflix, and he kneaded my lap which I tolerated until it hurt. Pointy claws of a heavy kitty on wound sites are not good.

I just feel very sad. Maybe tomorrow will be better. We’re off to Machynlleth on Thursday for the comedy festival there and I really don’t want to feel like shit. 

The 26th of April.

Measured my arm this morning. Still exactly the same. I am not expecting it to improve, but I’ll carry on with the compression and the squeezing for a few more days, then I’ll ring Andrew’s secretary and make sure my appointment is on the way because he’s going to have to come up with a new plan. I cannot go to John and Maddie’s wedding with one huge arm, even if it will be full of medics.

So this morning I was sad about my arm and had a bit of a cry before I came downstairs. Breakfast, then I wrote up the blog post about the venoplasty while I watched new Pretty Little Liars and iZombie. I did a lot of shouting at the latter because Peyton is being a moron.

After lunch, I sorted out what clothes I’m going to take to Mach and printed out all the tickets for the shows I’m going to, using up a small tree in the process. Then I went to give Sam some attention and a brush because we were taking him to Lee’s to stay with her while we’re away and I thought he ought to look nice.

I am sick to death of living in baggy clothes. A third of the year has passed and I haven’t felt good about my body for a single day.