Archives For Andrew Willis

The 7th of November. 

Feeling less shit today – no murdery dreams and my muscles are not so sore, so overall generally better. 

This morning, I wrote up a blog post while shouting at the Tory voices on Victoria Derbyshire. Eventually, I had to put on an episode of Bones because I was getting my blood pressure up. Then I put together the final gnome and took some photos of them all together. Now they’re sitting on the mantelpiece, having a lovely time. 

After lunch, I started work on the next Christmas project, but didn’t get much done before Ann and Tom, the couple interested in Callie and Carlton arrived. They pretty much immediately fell in love with them, as I expected. They are just too gorgeous to not adore. They’re going to change the kittens’ names to Molly and Bertie, so we’ll have to get used to calling them that. Plus they’ve given us blankets for them to get used to/put their smell on. 

After they left, I tried ringing the GP again to talk to this secretary who’s been trying to talk to me. I rang this morning, but she wasn’t available so I was told she’d ring back. When I tried again, she’d left. So then I talked to the team leader who did some investigating, but couldn’t get to the bottom of it. She’ll try again tomorrow, and maybe I’ll eventually find out what they want!

The 8th of November. 

Well, local anaesthetic in the eyelid is, much like most of the local injections I’ve had, not that bad. The only distressing local in the past was for the bronchoscopy, but that was for more psychological reasons than physical. 

Anyway. I was up just before six, because we had to be at the QE for eight. I was first on the list, which I was pleased about. I met Mr. Kolli before going into theatre, and we had a brief chat before he drew an arrow on my forehead so they didn’t do the wrong eye. Then I didn’t have to wait long for the theatre to be ready, so I put on my gown (over my clothes) and shower cap and went to lie down. 

A nurse put some music on (classical, disco, La La Land, Sinead O’Connor) and poured what felt like a gallon of two different strengths of anaesthetic drops in, with a tissue at the side to stop them escaping. Another nurse took her place, and I was given his hand to hold while Mr. Kolli injected the local into my lower eyelid. They both warned me about how awful it would be, so I was surprised to find it really wasn’t so terrible. Not that it was pleasurable, but I didn’t scream or even flinch, which he can’t remember witnessing with any previous patients. Brave Kathryn strikes again. 

Finally got round to zapping the rogue five lashes, and I didn’t feel a thing. So now they’re gone. I have antibiotic ointment to do four times a day (along with all my other drops) and I sported a very fetching eye patch until half past one. We’ll see if it has held off the bruising tomorrow. 

The 9th of November. 

This morning was arduous and long and frustrating. First was lung function. For the first time since I was at the children’s hospital, I had to get in the box (see photo below). Same tests, just different room/equipment. They took forever, it seemed, partly because I had to do one of them four times, plus she had to get some blood from me and it all just added up. Knackering. Then I saw Dr. Thompson, and he was not full of joy. The numbers are the worst he’s ever seen (for me), which is what I was expecting. We compared some x-rays from now and last year, and it is quite clear that the right lung has shrunk and the chest wall has sunk in, so I have less volume and the way I feel now is the new baseline. Great. 

Got out of there about half eleven, so just had time to get some coffee before going to see Andrew. That was a very confusing chat. It seems the lymphoscintigram actually showed that the right side works better than the left, because the lymphatic system is compensating for the rubbish venous flow. So now he wants an MRI with gadolinium so we can get a definitive picture of my anatomy. Which will require careful booking because he or a colleague will need to be there. JOY. And even when we know what is going on where, what we do is still up in the air because so many things could go wrong. Numbness, he cannot fix, but can sort out another MRI for that and refer me for nerve conduction studies. 

I don’t make any sense. 

The 1st of November. 

I am living in a limbo state and I hate it. Just waiting for it to be next Thursday when I see Andrew. I’m just trying to find ways to fill each day so they don’t feel so wasted. The thing is, I don’t think I’m going to be able to mentally move out of this state until my arm is fixed. And I’m beginning to absorb the thought that most of my Christmas jumpers will be staying in the wardrobe because they just won’t fit. 

This morning, I wrote up a blog post, after saying good morning to the kittens. We’ve finally been able to flea-spray them today so I have mainly stroked them through the bars. 

After lunch, it was binge-watching The Blacklist and crochet. I finished and assembled my first gnome, the smallest one. I have now started the middle one, and I am very much looking forward to seeing them together when they’re all done. 

I hate all this waiting. Fuuuuck.

The 2nd of November. 

Today has not gone entirely as planned, but not in a bad way. 

I called Black Sheep yesterday to arrange a hair change, and Saskia had a cancellation at one o’clock today, which I said no to because the boiler man was coming and we weren’t sure what time he would be done. However, he’d been and gone by the time I got up, so I called to see if the appointment was still available. It was, so that was my afternoon sorted. 

I bade the kittens a good morning, getting them all out for individual cuddles – we can actually let them run around tomorrow which will be interesting. Might have to construct a small fence. Thursday is Riverdale day, so I watched that while I worked on the second gnome’s body. 

Had lunch a bit early (so I am starving now) and got down to Black Sheep for one. Annoyingly, I had just missed seeing baby Lulu, but I’m sure I’ll get another chance!

I thought we were just going to do the bleach before doing my Christmas hair in a separate appointment. But we did the whole thing today! So, I am now a coppery-gingery tone all over. There are panels that were meant to be gold but in a toning error they’ve come out dark, so I’m going back to get those corrected next week. 

The 18th of October. 

I think I am getting better? Very slowly. Like, I am definitely coughing less. I haven’t been quite as phlegmy today? Ohh progress is glacial. 

This morning I did a blog post, and did some more phoning to find out what’s going on with my Andrew appointment. Turns out Christine hasn’t had anything about me, but because I’ve made contact with her, she’s going to find me-related paperwork and wave it in his face so he tells her what he wants. 

After lunch, back on the crochet. Starting a Christmas present (eee!) – have to start thinking about that. Mommy and I have booked our train tickets for our annual London Christmas shopping trip. I hope I can wear more of my festive jumpers this year. 

My left eye has been protesting all day. So looking forward to going to bed and closing them. 

The 19th of October. 

I am just exhausted this evening. It’s not like I’ve been out much, or had a bad night, I’m just tired. Bleah. 

I spent my morning sewing beads to the thing I’m making for Heidi. Mommy had taken Alison to her physio appointment, and must have done something to the door, because when the veg man arrived, I couldn’t open it. It shouldn’t have been locked, but I got my keys and tried anyway. Couldn’t open it. I tried everything but it wouldn’t budge. He put the box in the porch and I yelled out the window “Sorry, I’m locked in!” When Mommy returned, she couldn’t open it from her side, so I ended up having to open the garage and let her in that way. I didn’t have to walk much, but I could barely breathe. I know I’m not well at the moment but still…I think the pneumonia has probably damaged them permanently. I suppose I’ll have to ask Dr. Thompson in November.

We had trip to St. Giles again today to try some more sleeves – not going for made-to-measure just yet. I’ve got two – one that stops at the wrist so I’ve got a glove to go with it, and one that’s the same style as my other one, both in different materials. I’m not enjoying the glove; it’s so squeezy on my fingers. 

And my eye is bad again today. Can I rest, please? Let me rest. 

The 10th of October. 

I live on the floor now. 

Nights are the same, coughing until I fall asleep, then in the morning I’m okay until it starts again. Today, I got a blog post written up, but not posted before it was necessary to lie down. 

Rosemary came for lunch and she arrived to find me on the ground, which is always fun to explain. I got up to eat, but the rest of the afternoon has been face down. I watched an episode of How to Get Away with Murder on my phone, and listened to James Arthur speak very eloquently about mental health on Radio 5. 

It is something I have long struggled with, having been diagnosed with depression at fourteen, and it has varied in severity over time. I have been medicated since I was eighteen, which helps for the most part. I still have days under the heavy cloud, sometimes they stretch into weeks, months, but they end. I know they end. And I’m forever going to deal with the demon that is anorexia which really took hold when I got “better” from cancer. I was in treatment for over a year before I decided I wanted to change. You can have all the support in the world but if you’re not ready to stop self-destructing, you won’t. I still deal with its voice, I worry about my body, how I look. But I know that is not who I am. I am the sky.

The 11th of October. 

I am so tired. I had about three hours of sleep because I was just constantly coughing, and I had to get up at seven because I had to be at hospital at nine. 

It was for my lymphoscintigram in nuclear medicine so we could finally find out if my lymphatic system is the problem in my right arm. I got called through about half nine, having alienated everyone in the waiting room with my cough. I had two injections of radioactive dye in the webbed spaces of each hand, then I had a series of x-rays to see how quickly the lymphatic system would dispose of it. Each scan took five minutes in which I had to be completely still, with my arms stretched out in front of me on the bed. I had six in total, twenty minutes after the first, forty minutes after that, an hour after that, and an hour and ten minutes after that. The final one was me standing up with the machine moved to scan my body. We were able to discern that the right side is not functioning properly, because the dye was long gone from my left arm, but had got stuck in the lymph nodes near the elbow on the right. So now I’ll see Andrew again, and we’ll make another new plan. 

We finally got home at two, had lunch, and now I’m on oxygen because I’m so drained, my sats are dipping. 

What is this rib doing? It digs into the floor and it HURTS.

The 31st of August. 

Mild improvement today? My eyes don’t hurt quite as much, and my sleep wasn’t as terrible. I suppose you can call that progress. 

This morning I had an appointment with Andrew, post-venoplasty. I showed him my still fat arm and he was very disappointed. I was surprised that he had expected it to work, frankly. The next option for him would be to put a stent in, but it would be pretty massive and made of metal, and it would stop any central venous access from my left side, which could be problematic. He has a multi-disciplinary team meeting on Tuesday with other interventional radiologists, surgeons and haematologists, and he is going to present my case to them, and see me again in six weeks. In the meantime, I’ll see Anne Dancey and the lymphoedema clinic, then we’ll see where we are. 

Popped into town afterwards where I bought some hand cream, moisturiser, and some drawers from Muji to tidy my make up area. Back home, I spent forty five minutes sitting on the floor sorting it out, which was very satisfying but very painful for my back. 

Had a breakthrough with young Hugo! I went to give the kittens some more food, and he came up to me with his brother and lay down near me, even allowing me to stroke him! I have no idea why or how, or even if it’ll happen again. I hope it wasn’t a fluke. 

The 1st of September. 

Another trip to London! This time, it was Daddy’s belated birthday present: the Pink Floyd exhibition at The V&A. Half ten train, arrived at Euston just after twelve. Train manager got the ramp for me because, quelle surprise, nobody there. We got a cab to the museum, when we met up with Christine and went to get some lunch in the café. I got a ham and Emmental baguette because everything else had spice and stuff in, then there were secret herbs in the butter that nearly made it intolerable. You think you’ll be safe!

Our tickets were for 2.30, and we had to get headphones for the exhibition (very clever, they could pick up where you were and play the appropriate audio), so we joined the queue of other organised people. We got in promptly, as did many others, so it was quite slow to get around – especially for me, as I can only move at the speed of those around me, and only see stuff when people aren’t in the way. I liked what I knew of them already, and there’s some stuff I heard that I’m going to look into more. I took a lot of photos. 

I bought two books on the way out (not Pink Floyd related) and waited for the others. They were watching the film at the end, which I had to leave because of blinding light. When they eventually emerged, we went to get coffee and cake. We decided to sit outside, which was a mistake because the wind was freezing. 

I wanted to see the Rachel Kneebone sculptures, and so Christine and I went to find those. The first one was fairly obvious, a giant column by the entrance hall, and there was a sign saying the rest were in room 21. However, once there, we could not see them. A volunteer saw that we were confused, and she went off to find out where the other sculptures were. It turns out that one of them got a bit broken, and they got taken away. She could see I was disappointed, and asked if we were interested in the Balenciaga exhibition. I said yes, but we hadn’t bought tickets. However, she said that was fine, and she’d get us in. Okay! So then we got to look around there at all the beautiful dresses. I discovered that Cristóbal and I share a birthday, and found a dress by Oscar de la Renta that I would gladly get married in. So stunning. 

We met back up with Mommy and Daddy, and it was time for us to return to our respective homes. Christine poddled off back to Twickenham, and the rest of us back to Euston. I bought some Pom Bears and a green juice for dinner, and a New Scientist to read on the way home. Pooped. 

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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 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.