Archives For Andrew Willis

The 16th of February. 

We have a plan. In fact, we have many plans! I got called in pretty much straight away again (I do like the promptness of Andrew’s clinic) and first off, he was really very annoyed that I hadn’t heard from the compression garment people, so he fired off what I think was a politely passive-aggressive email immediately. I went on to explain how it’s affecting my breathing and mental health, and I didn’t cry, but I wobbled. He went back into my pictures, and we talked about my contrast allergy again. I showed him the pictures of the rash and he agreed that I cannot have the iodine-based contrast, so we have four other options available: carbon dioxide, which they would watch displace the blood, measuring the pressure in the veins, the gadolinium (the MRI dye they usually use on me) and IVUS, which is intravascular ultrasound, where they put an ultrasound probe inside the vein and get pictures that way. Then it really depends on what they find, but he’s going to try to sort it out asap, because he now understands how debilitating it is for me. We have to wait for him to talk to the people who make IVUS because it’s not a standard going they have in the hospital. I left feeling much better. 

Then, on the way out, I got a call from the compression garment people! They were very apologetic and asked if I could go there right then, so we turned right back around. I went to the orthotics department and booked in with the receptionist. Again, I was called in super fast, and the nice man took lots of measurements of my arm. He’s ordered it today, and has asked them to get it sent out express, so I’m hoping they’ll call me back early next week? I have to wear it 24/7, so that will be fun. 

Afterwards, we went back to Andrew to let him know that it had happened, and he was delighted. Polite passive-aggressiveness works!

We went into town so I could get Penny a birthday card, then by the time we got home, I was starving. Lunch was most welcome. Then this afternoon, I watched the series finale of No Offence, and worked more of the complex, fine wool doily. Hand cramp ahoy. 

The 17th of February. 

Well, I have my compression garment. It is not my favourite.

I got a phone call just after eleven from Chris, the guy I saw yesterday. My sleeve was in, when could I go in to collect it? I suggested two o’clock which he was happy with, and I hung up still in shock at how quickly it has happened. 

We went out straight after lunch, and were waiting for a little while but kept amused by the nonsensical rolling news along the bottom of the screen (“Armed with a machine to pick cows up and an angle grinder, man gives cows pedicures.” “A nationwide depot search was conducted but the painting was never found.” “The club described the player as having a contagious energy and sense of humour which lit up a room.”). 

After twenty minutes, he came to get me, and proceeded to fit the sleeve. I do not look forward to us having to do it – it’s so much harder than the TED stockings. He said the most common injury in their department is ruptured fingers – dislocated knuckles and torn ligaments from pulling garments up people’s limbs. I have to wear it all the time except in the shower. God. 

Once it was on and in the right place, we went into town again to take back a jumper I’d ordered (did not resemble website photo), and I got a different one which will also go back because the arms aren’t big enough. 

This evening, I was out at The Old Rep to see Josie Long, supported by Tez Ilyaz. There was little traffic, so I arrived ridiculously early. To fill the time, I got myself a glass of wine and read the little programme Josie had made. When the doors opened, she was doing pre-show karaoke, which was basically her singing along to the Pina Colada song on her phone. Such fun!

She did a bit, then Tez did his bit (which was very good, I am going get tickets from him at Machynlleth), then it was interval time. I had to pee, and on the way to the toilet I saw Malcolm, who I used to hang out with back when I was at school and was one of the photographers at Becky and James’ wedding. Then, when I came out, I was recognised by Bryony, a nurse from the QE who I love dearly and haven’t seen for ages. Bonus, unexpected chat, so that was an added delight to the evening. 

Josie then came on and did her show, and I just love her. She is such a font of positivity and optimism but also rage, which is what we need when the world feels so terrible. She ended on a high note of an audience sing-a-long to Take That’s Never Forget, and as people filed out they all wanted photos and to talk which she gladly took part in, and I climbed up the stairs to the stage so we could catch up. I met Tez, and Josie’s boyfriend Johnny, and we talked about the show and Mach. They tidied up the stage, removing all her banners, and we ambled out of stage door where there were still some very dedicated fans waiting. 

I am not looking forward to sleeping with this thing on my arm. 

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 31st of January. 

Well, I’ve spoken to the person who books appointments for Andrew’s clinics, and she can’t do anything until she’s spoken to him. I don’t feel ultra-confident that she will do this very quickly but hopefully she’ll surprise me. Still no sign of deflation, and I am measuring it every day. 

I have been vastly unproductive today, apart from a blog post this morning. I was at the chiro this afternoon for the first time since before Christmas, and it was not fun, but very necessary. I know it’s bad when Trine winces upon touching my back, exclaiming about how it feels “solid”. She did lots of kneading and crunching and stretching, and I’m going back in two weeks. Hopefully I will not be in pain when I try to go to sleep tonight like I have been for the past week. 

Afterwards, we had a very quick trip to Sutton so I could get a box file for Cats Protection post-adoption forms, and while there bumped into June from Black Sheep, so had a tiny chat before she had to get back to work. 

Need to decide on my next crochet project. Mindless hooking is my meditation. 

The 1st of February.

I have been surprised! The lady I spoke to yesterday actually rang this morning – she has seen Andrew and he’d like me to go to his clinic tomorrow, which I can definitely do. Still exactly the same size. 

The rest of my day has not been so great. I needed oxygen after getting dressed, have been coughing all day, and my back still feels stiff and painful. Stupid garbage body. It would be nice to be able to complete basic tasks without feeling like I’ve just sprinted 100m. 

I had been considering a new crochet project, and as we are meeting Naomi for lunch tomorrow and it was her birthday the other day, I thought I would make her something. I had seen a pattern for a cute bunny, so I’ve spent my day making that. It is super adorable. 

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.