The 15th & 16th; It’s been a good day.

The 15th of August.

Such a long day of travelling and oh my back hurts so much.

Off to Wales to see Taid! Set off just after nine, and I spent the whole journey listening to the Hidden Figures soundtrack and reading The Beautiful Cure. When we arrived, Taid was wearing a very jazzy orange shirt. Apparently he has two more in the same pattern! He is full of surprises. Anyway, we let him finish getting ready, then we went to a pub for lunch (not the one in Conwy so no dogs).

It was quite a nice place, and I ordered a “light bite” of fishcakes which ended up being incredibly filling, so what a full meal might have been I dread to think. It was good though! No complaints from me. That might have been different if I’d had a coffee like the others – they came with squirty cream instead of milk and was apparently disgusting.

When we got back to his house, Mommy and Daddy did his washing up, and I made a space in the living room amongst the piles of post so I could sit and do the puzzles in the Telegraph.

We were on our way back in good time for once, so we got home about seven. I love my comfortable chair.

The 16th of August.

Today is the 11th anniversary of my cancer diagnosis. It’s been a good day.

I was up early again because I had clinic with Andrew. I wasn’t sure how he was going to react to my arm because last time I saw him, he said he didn’t think I should have lipo. Thankfully, he was delighted! I think he is just happy that I am fixed. He’s still confused, but he said I made his day so I’ll take that.

Went into town for anniversary treats. I got a new lipstick from Huda Beauty, a cruller from Krispy Kreme, and The One Who Wrote Destiny by Nikesh Shukla from Waterstones. While we were in there, we saw Mr. Tobin from Hallfield! That was a lovely surprise. He doesn’t age, I swear.

This afternoon, I have had a lovely time starting a baby blanket and watching House. I even got some early strokes in with Dolly! She doesn’t usually allow that until the evening. I’ve also been getting lots of nice comments on a poem I have written about this day. I can’t remember the last time I wrote anything vaguely resembling poetry so I wasn’t sure how it would be received by it seems that people like it!

We are having venison for tea. Happy.

The 23rd & 24th; Lots of injections.

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 & 29th; This would be so much easier if I weren’t allergic to contrast.

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 & 7th; In the underside of my wrist.

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!

 

The 7th, 8th & 9th; I didn’t scream or even flinch.

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 & 2nd; I hate all this waiting.

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 & 19th; Progress is glacial.

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 & 11th; I am the sky.

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 & 1st; He was very disappointed.

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. 

The 12th & 13th; Our last shot.

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.