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The 15th of August. 

Quiet day in the Cartwright household – I’m on my own because Mommy and Daddy took Grandma up north to see Aunty Audrey, so it’s been a day of carbs, crochet and crime drama. Well, only a little bit of crime drama but I enjoyed the alliteration. 

This morning I did a blog post and watched the last three episodes of Glow. I finished off the little teddy, but because the wool is mainly pink, it looks more like a pig than a bear. 

I sorted myself out some lunch, and had got engrossed in trying to de-pig the bear when the doorbell rang. I had a chap coming to view Betty and had completely lost track of time. I let him in and took him to see her – very much your average viewing, as she is an excellent kitty and showed herself off to the best of her ability. They’ve had a cat for twenty years so I know they can look after one. Just got to confirm, but I’m pretty sure we’ve found Betty a home!

Since then, I have been trying to write a blog post for tomorrow. It will be ten years to the day since I was diagnosed with leukaemia, since this all started. What a decade it has been. 

The 16th of August. 

Happy 10 year anniversary to me!

It has been a lovely day. I had a good sleep, woke up at an acceptable time, and had my breakfast and coffee while I put together a blog post about the day. I put my new charm on my Pandora bracelet, which I think we can now say is full. Convenient – ten years is a nice round time to stop. 

I wanted to make cinnamon buns, so when Mommy got back from Grandma’s, I printed out a recipe I’d found to make them in 45 minutes and we gave it a go! To be fair, Mommy did most of the work, and I did the easy bits, like sprinkling the cinnamon sugar all over the dough. When they came out of the oven, I poured the icing over the top, and let them cool while we ate our lunch. We tore them apart for pudding and have to say, they have been a success!

This afternoon, I went to Black Sheep to get my hair dyed. I had taken inspiration from Love Symbol #2, the colour Pantone released to honour Prince, and mixed it with a dark teal. I have unintentionally matched my glasses and sunglasses. No bleach today, so it didn’t take very long, so there was time to come home and get changed before going out for dinner. 

We went to Water’s at Resorts World, because we’ve known Andy for a long time and know he doesn’t do weird food. I ordered a peach and passionfruit bellini, and set about perusing the menu. I decided to go for a saffron risotto with chorizo and deep-fried squid to start, and a marinated duck breast with spring onions, creamed potato and pak choi to follow. While we waited, we were given tiny tomato soups as an amuse bouche which was delicious. I love bonus food. My risotto was really good, although quite filling, so I had to leave more than I would have liked because I had more food to fit in. I was very glad I did, because my duck was excellent, soft and pink, and I’d been worried that it might have been spicy but I had no trouble. At this point, I had to stop – there was no more room in my belly. I think if we go back I’ll skip the starter and have a dessert instead because Mommy and Daddy were both delighted with theirs. 

I’m very tired and very full and very grateful to be alive.

The 1st of August. 

I am very tired because I woke up at ten past six for no reason, and couldn’t go back to sleep. I’ve had three coffees, but the caffeine has worn off and now I am weary again. 

I didn’t get up upon waking; I stayed in bed, listening to the radio for a while. When I did get out of bed, I did a blog post, and I phoned around for an appointment with somebody about my arm. I’m going to see a surgeon who does various procedures for lymphoedema, and she’s obviously very busy because the earliest I could see her is mid-September! Still, it’s before the clinic, and I need this fixing. 

I was at Black Sheep at 11.45 to get my hair cut. I saw June, as Michaela’s off until October, and now my back and sides are super short, with the top long. The last time the clippers were used so much on my hair was when we shaved it pre-chemo on my kitchen floor. Ah, memories!

After lunch, I went into town with Mommy who was giving blood. While she did that, I went shopping – I bought a skirt from Oasis, some wool from John Lewis, and I had a brow consultation at Benefit. I really had no idea what to do or use, and now I do! Then I got a text from Mommy who was finished, and we came home to find the towels that had been drying were wet again. British summer. 

The 2nd of August. 

I was woken up today by Daddy phoning me to find out where Mommy was. I didn’t know, because I had been asleep (she was here, just not near her phone), but I was glad he’d woken me because I’d been having a horrible dream in which Christine had got drunk and had sex in my bed, then she’d drawn all over my bedroom walls and I was trying to erase it, but everyone thought I was overreacting and her behaviour was fine which was really frustrating! Stupid brain. 

My day has been spent crocheting and assembling the panda. I finished off the body this morning, then we had lunch and watched last night’s Criminal Minds: Beyond Borders. Then this afternoon, I made the arms, ears, tail and scarf, then I put him all together! He is very cute but might look a bit terrifying to a new baby. I hope not. 

I have been needing lots of Rennies recently because my tummy is full of wind and I suddenly realised it might be to do with pregablin. Looked at the side effects and yep. Also it’s why I’m so much hungrier. Still not helping the pain. 

Had a lady come and see Bree with her daughter and grandson. They fell in love, and the little boy started crying when he realised they couldn’t take her home today! Bless.

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 3rd of May.

I have been putting this off because writing it down makes it real.

It’s been a pretty quiet, mildly shitty day. I still have this stupid dry cough which wakes me up throughout the night, although my throat is less scratchy now, which I suppose is a plus.

We went into Birmingham this morning so I could pick up my copy of the new Jeffery Deaver novel, The Burial Hour. I also needed to get a thank you card to give James tomorrow when we have our last ever appointment, and Mommy wanted a blank card to put a cross-stitch in but couldn’t find one.

This afternoon, I phoned Andrew’s secretary, Emelda, again, but he hadn’t got back to her and there were no spaces in his clinics until the beginning or end of June. At this point I got upset and I tried to explain about the wedding. I didn’t do it on purpose, but she then said she’d keep trying for me and I’d hear back as soon as she spoke to him.

Mommy then went to Grandma’s, and I watched the new Pretty Little Liars and started the book. Mid-programme, Emelda called me back, and I’ve got an appointment for 25th May, so I will “go to the ball”, as she put it. I didn’t tell her that really I need to see him much sooner because she’s obviously pulled strings to get me in there, but I’m going to have to attend the wedding in my wheelchair, on oxygen and with a giant, swollen arm. I am so tired of this. My hateful body.

The 4th of May.

Nothing like bad news from a friend to prompt a reality check. Dean had his operation on Wednesday to remove the tumour on his rib. That part went as predicted, but what the had not expected was to find new tumours elsewhere that weren’t visible on his scan four weeks ago. Obviously this has been a shock to everyone, so they don’t know what the plan will be. I am just devastated for him, for Adam, and his family. I know how it feels to relapse but he hasn’t even been in remission yet. He knows I am here, for whatever he needs, This is the worst of days.

Up until hearing this news, I was having a pretty good day. I don’t think I have coughed so much today, but I won’t get my hopes up about improvement just yet. I had an appointment at Black Sheep to see James to re-tone my hair, my last session with him! I gave him his crocheted monkey and a card with a rainbow sheep on – I thought it was the most appropriate. I was not there for so long today, he was just going over the colour again, so now I’m a bit more vibrant. It has been our best work.

Home briefly, then back out, to the QE for my physio assessment. They were very on time, so I had barely started reading my book before I was called through. I filled in a questionnaire about my pain, then a chap came to see me. We talked a little bit about medical stuff and my current limitations re: oxygen, then he wanted to see what I could do. He had me stand up and bend forwards and backwards, then sit on the bed and twist left and right. Apparently I am quite stiff when going backwards and left. I then had to lie back and do some stuff with my pelvis and legs. Basically, he can give me some exercises/stretches to try out for a few weeks, then I’ll go back and we’ll see what progress has been made. He was very impressed with my enthusiasm and determination, which made me laugh because I used to be so terrible with physios, always pretending to be asleep when they came. I learned the hard way that that is not helpful.

The 28th of March. 

I have felt a-fucking-trocious for most of my day. High levels of oxygen have been required, and even then I have not felt so good. 

This morning I was needing 1.5-2 litres of oxygen just to sit and eat my breakfast. I finished the monster doily, then there wasn’t much morning left before we had to go out to Black Sheep. 

Obviously I took a small cylinder of oxygen with me, and I was doing alright to begin with. However, after James had put the lightener in, I had to go to the bathroom and I knew I wouldn’t get there without help. Because of the fumes and the spray etc in the air, I had to put it up to 3 litres and I was still struggling, but I didn’t want to go any higher for fear of ploughing through the cylinder. I had to text Mommy to get her to bring me a new one mid-appointment because the small ones only last 1.5-2 hours on high volumes. 

I told James off for leaving, but I forgive him because his reasons are good and Saskia will take care of me. We have nailed it with the colour – I look like a load of pixie sticks have been tipped onto my head. In a good way. Michaela is having another baby so I congratulated her, and she gave me a trim. 

I got home at about half past four, so not much has happened since then, but I’ve got the oxygen down again, thank god. I felt absolutely awful. 

The 29th of March. 

Vast improvement. I had a crappy sleep which I am putting down to low sats – when I sat up, they were 88, despite me having been on oxygen all night. However, I have got better since then.

This morning, I wrote up the blog post I should have done yesterday, we had a delivery of oxygen, then I had my rescheduled chiro appointment from last week. I was considering postponing it again, but I did not feel too terrible and my back had started protesting. 

I took the small cylinder with me, so I was able to get into all the necessary positions, which was good because pretty much all of my back had tightened up. Surprisingly, my neck didn’t need any crunching, just massaging into submission. 

Once home, we had lunch, then I updated my phone software (I know) and took a lot of selfies to document my new pretty hair. I started crocheting a new doily, and I’ve got my oxygen down to 1 litre. I wish we could work out what causes me to need it more some days and not others. Knowing me, there is probably no reason.  

The 24th of March. 

Very little to report today. I spent my morning writing all about yesterday, then put it into a blog post. I had some terrible news that James (who colours my hair) is moving to London in May! I’m very pleased for him but also very upset for my hair. I have now booked in to see him and Michaela next week, as I planned on getting it cut on the day I went into hospital, so on Tuesday I’ll have a chop and we’ll work on a spectacular finale of our relationship. 

My breathing has not been great, and that’s because when I’m just on air, my sats are only 90. Now I’ve bought a home sats monitor, I’m obsessed with checking them. It seems I have good reason to be though. 90 is not good enough. I’ll have to keep an eye on them and if they don’t improve we’ll have to see what the doctors think. Can I just get better please?

The 25th of March. 

Okay if this is recovery it is very intermittent and confusing. I slept with the oxygen on, took it off when I got up (which was late because I forgot to set my alarm) and by the time I’d got dressed, my sats had hit 85. This did not bode well. However, during the morning, I started feeling better. I took the oxygen off, and suddenly it seemed I had improved – I’ve been above 95% on air since then. I don’t understand. 

In other news, I checked MyHealth last night on a whim and saw that I have a venoplasty date! 24th of April. A month away. By the time my arm deflates (that’s if it works this time), I won’t be able to wear the rest of my jumpers which have been waiting for the past three months because it’ll probably be warm again. 

For much of my day, I sat and watched episodes of Buffy on the SyFy channel while I crocheted. Every so often I have checked my sats and they’ve been okay, so I think I’m just going to have to see how I feel every day and see if the trend is up or downward.