Archives For Andrew Willis

The 23rd of April.

It has been a very boring day.

This morning, I wrote up a blog post, sewed up the seam of the first sleeve of my jumper, and got very bored of hearing about the new royal baby. So much baby news. Now he is born and home, one hopes it will die down once we know his name.

I had an ultrasound with Andrew at one, to check if there were any strictures or thromboses in the lower arm. After checking all the veins, and looking at the visible tissue, it seems my veins are fine, there isn’t any fluid anymore, and now there are just fat deposits in my arm for no reason! So I’m going to get back in touch with Anne Dancey to explore my options. I can’t leave it like this.

Then we had two hours to kill, so we bought some crap sandwiches from WH Smith and read our books. Much book-reading today. I finally went in to the x-ray suite at quarter past four, where Dr. Blaney was waiting. I lay face down, trying to breathe comfortably. My lower back was exposed, and I then had an x-ray probably every twenty seconds while Dr. Blaney did lots of injections. I think he was doing some local anaesthetic, then putting in a bigger needle and using that for the steroid. It took maybe five to ten minutes and was slightly uncomfortable, but not enough to put me off having them again. If they work, that is – it’s hard to tell at the moment. They might work immediately, it could take a few days, or they might not work at all. If they don’t, I don’t know what I will do.

The 24th of April.

Well, I think I might very tentatively say that my back may be slightly improved?

This morning it was quite tricky to tell, because I didn’t do anything to really test it out. I got up, had breakfast and coffee, and listened to The Riverdale Register while getting dressed for the gym. Mommy and I printed out all our tickets for Mach so they are sorted in folders for when they’re required, then I did the first two rows of the second sleeve of my jumper.

After lunch, I went to the gym for a short session. Partially because I didn’t want to overdo things, and partially because Mommy had to be at Grandma’s for twenty to four, so I needed to finish earlier than I usually do. Basically, I skipped all the stuff I do downstairs, so I just did the circuit of machines upstairs. I didn’t have the pain I was experiencing last time, but that was a very bad day. The pain is definitely not gone, but I think it might be a tiny bit better.

Tonight I am out at the mac seeing Tez and the seats there are not the most comfortable, so that might give me a better assessment.


The 28th of March.

I have been outside!

This morning, I got up a bit earlier than usual, which meant I had time to write up my blog post before we had to go out. I had a chiro appointment at eleven, which was sorely needed after all the crocheting I’ve been doing. These jumpers have rather fucked up my neck – too much sitting here, looking down. Trine had to apply some rather intense pressure to some knots and ooh it was painful.

From there, I went to the gym. I met up with Karen, but there wasn’t much for her to show me today. I just need to do my thing for a few weeks, then come back to her with my progress to talk about any changes.

I worked out for about two hours, getting to do everything in my preferred order which was most pleasing. Even more so was that when Mommy picked me up, she’d been to M&S where they had a pretzel and a cinnamon swirl!

This afternoon, I have returned to the crochet (trying to look up more often) and watched thimgs that recorded last night. I did some screaming at How to Get Away with Murder because of Connor and Olly’s wedding and Scandal crossover! Going to be SO GOOD. I haven’t actually watched Scandal, but I feel very very excited about this.

Tomorrow I am finally going to find out exactly what is going on in my arm. Let’s hope, or I’ll have a breakdown in the middle of Andrew’s clinic.

The 29th of March.

Hm well not really proper answers. I love going to see Andrew because he’s very punctual and I never have to wait when I am called through.

Basically, we don’t know why my arm is fat. The pictures from the MRI show that the veins in my neck and chest are as good as they can be, and any further intervention using stents or whatever won’t really make any difference. So I asked if we can look at my actual arm to see there is a stricture anywhere, because the forearm is where I get pain, where it feels like things are being squeezed, and he’s going to do an ultrasound in it when I go in for my steroid injections. That’s all that’s left, really. I think I will email Anne Dancey and ask her if there is a scan she could do that would determine the exact composition of my arm – what the veins and lymphatic system look like, what is fat, what is fluid, and then what can be done with the results of that. This would be so much easier if I weren’t allergic to contrast.

We picked up Christine at New Street (eventually), and this afternoon I have been crocheting the second sleeve of the jumper and starting Scandal. I’m doing this one longer, so I’m going to have to unravel the first one and do it again. I have enough wool.

 

The 6th of February.

My arm really fucking hurts today. I don’t know what it is, and I doubt I’ll actually find out much tomorrow because a radiographer will need to interpret the scans.

I had a horrible dream about a child being run over multiple times, so it took me ages to get back to sleep. This morning, I wrote up a blog post, then I returned to crocheting the scarf, because it doesn’t seem to make my arm any better if I do nothing.

After lunch, I listened to The News Quiz, then watched the new episode of Black Lightning while I did my exercises again. We’ll see if it’s the cause of my extra back pain when I get up tomorrow.

Really hope my new glasses come in tomorrow, then we can pick them up after my scans.

The 7th of February.

Well, today has been really rather good. This morning, I had my scans. Getting there was not fun – the traffic was very bad, and the car park was so rammed, it was hard to even find a place to pull over so Daddy could drop me off (Mommy had had to take Grandma to Good Hope for an echo). I arrived about five minutes before we were meant to start, but it was okay. Had to go through all the usual questions about metal in my body, then one of the techs tried to find a vein so they were ready for the injection when Andrew came. However, my veins didn’t want to cooperate, so we gave up and did the MRI on my cervical spine (to see if there’s a reason for the numbness in my right forearm). I got an itchy nose mid-scan, but I was able to ignore it. When I came out, Andrew was there, and he went hunting for veins. Still not very forthcoming. It got to a point where he was considering a different kind of scan, but it was a cardiac one and I didn’t have an appointment there. On the fourth go, in the underside of my wrist, he got a cannula, and we were able to do the MRV. He’s going to look at the pictures and see me in clinic. Pray for answers!

I rang Piccadilly to see if my glasses were ready but they won’t be in until tomorrow. On that way home, we got a pretzel from M&S, now a rarity, and this afternoon, I have been crocheting the scarf again, thankfully without pain. My back has also not hurt any extra today, so in all, a win!

veins

 

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.