Archives For Dean Eastmond

The 30th of December.

Is today worse than New Year’s Eve? I think so. The tv is definitely very poor – I had no interest in any of the films on today. I have set Carrie to record tonight but that is not for festive viewing.

This morning I wrote up a blog post, then watched Raymond Blanc dick around on Saturday Kitchen while crocheting the never ending shawl.

After lunch, I had a hairwash, then sat and watched three episodes of Black Mirror while the kittens ran around the room for the first time. First up was Crocodile – thought it was good, interesting premise, to see how far Mia will go, nice twist. Next, USS Callister – I really liked this one. The contrast between the 70’s Space Fleet and the hypermodern present in which the characters and game exist was great, and there was just the right balance of psychopathy and emotion. Really smart. Last I saw Hang the DJ – this seems to be the one most discussed in promo so I was a little bit wary but it lived up to the hype. I loved Georgina Campbell in this role, a much more likable character than the ones she played in Broadchurch and One of Us. I just really liked the concept and the ending. Good work, Brooker. I’m saving Arkangel and Black Museum until last because I think they’ll be the best. We’ll see.

The 31st of December.

2017 has been a weird year. Physically, I spent the first half of the year feeling like shit with pneumonia and constantly coughing. The second half was spent waiting for appointments, trying to figure out why my arm is still the same, desperate for pain relief for my back, and discovering that the diminished lung function I’d been experiencing since the pneumothorax is permanent.

Emotionally, it’s been pretty miserable. Feeling like an invalid for six months was incredibly depressing – it had been a long time since I’d felt so weak, like I was going to die every time I did something simple. Needing oxygen purely to exist felt humiliating. Then as I started to improve, Dean was going downhill, and we lost him. I haven’t been hit so hard by a death for years. We made no progress on my arm for the entire year, and everyone is still baffled. My back continues to decline, to the point where now I can barely stand. And my lungs are a disaster, so much so that an anaesthetist won’t put me under for even a short procedure.

There were some high points. Taking Mommy to The Ritz, Machynlleth, John and Maddie’s wedding, the Anthony Nolan summer reception, Regina Spektor, my ten year diagnosis anniversary, Amusical, meeting Peter and Sophie’s twins, Christmas at home.

Those were all lovely, but my memories are marred by my body’s myriad of problems. It’s really hard to enjoy things when everything is a trial.

I just want 2018 to be bearable. I’m not hoping for miracles, I just don’t want to feel wretched all the time. I’d like to definitively know what is wrong with my arm and whether we can fix it. I want to be able to move around my house without such immense difficulty, so one of my resolutions is to start exercising again. Nothing vastly energetic, but I know I can build up some muscle mass to at least make things slightly easier. I want to read at least two books a month – I am just accumulating them and they continue to mount up without me making any sort of dent in the pile. I am going to crochet an item of clothing I can wear that is not a hat, scarf or pair of mittens. And I am going to take more photos with people at happy times. I have no photos of me and Dean and it devastates me.

I ended the year the way I always do, or at least the way I always want to – champagne and Christmas cake with my family, in front of the fire. Grateful to be here.

The 28th of December.

Well I have been awake since 6am which is not ideal. I was doing fine, having a lovely sleep, then my body realised it was freezing and decided we needed to experience this. To make it worse, the heating didn’t really seem to kick in until about lunchtime so I felt like a little block of ice. I couldn’t even put my cosy clothes on because Shaki was bringing new kittens this morning and they would ruin them with their claws.

She arrived just before twelve, and stayed for about three quarters of an hour introducing us and catching up. We’ve got three black and white girls; Autumn, Amber and Ava. They’re all quite different so we’ll have no trouble telling them apart, thankfully. Twelve weeks old, but small. And so cute. Particularly Amber, who has long hair. She is also the only one that hisses. I have got purrs out of Autumn already, so she doesn’t look like she’ll be much trouble. They’re all very soft.

Daddy sat with them this afternoon, while I crocheted. I was wrong about the shawl – still not finished. Oh well.

The 29th of December.

Much better sleep. I woke up at six, but fell back to sleep and we surprised by my alarm when it went off at nine so that was pleasant.

I’m still crocheting this flipping shawl (just carrying on until I run out of wool) so I did that for most of the morning. Still not finished. I also went to say good morning to the new floofs. They don’t retreat quite so much as they first did.

We have to be with them while they eat, so I sat and watched the shortest episode of Black Mirror, Metalhead. From looking at reviews afterwards, it seems that is the least good one, so I’m quite pleased because it means they can only get better.

This afternoon, we had a family cinema trip to see The Greatest Showman. I’ll be honest, it wasn’t as good as I expected. However, I love the songs, and I had a small cry during This Is Me because it makes me think of Dean. I do miss him ever such a lot. Adam sent me a Christmas card which arrived the other day and it was really beautiful.

Since my appointment yesterday with Dr. Thompson, I’ve been feeling pretty depressed. I know that physically, since the pneumonia and collapsed lung, I have found it hard to do much more than walk a few metres without struggling for breath, but to now have it confirmed that there is no hope of recovery is hard to hear. I had just got used to one standard of disabled life, and now I have try to envision the rest of my life again in this new version. I am tired of grieving for lives I thought I’d have.

It’s difficult when I spent months this year so chained to oxygen, having to exist as a blatantly, visibly sick person, and I hated it. Truly, despised it, because the first impression I gave was one of illness, and my appearance inspired pity in strangers. I cannot bear the idea of living a pitiful life. The very opposite of every intention I ever had. And I know that the next rung down on the ladder of lung disease is one where I am constantly adorned with plastic tubing. That scares me because living when it was so much effort to even brush my teeth was almost intolerable, and I don’t know if I have the strength to fight through every exhausting moment being miserable. I had rather decided that when it became impossible to be happy the majority of the time, I would find a way to end it.

But in the past, even when I have felt darkest, most lost, I still wanted to be alive. Or at least, I didn’t want to not be alive. I didn’t want to miss things, and I didn’t want to be the cause of the agony of death that I’ve felt more than enough times for any normal lifespan. I know I am most likely to die first in my family, but for it to be self-inflicted would be crueller than is necessary.

I saw Murder on the Orient Express today. There is a notion in the story, something I have thought about before, when we lost Dean – that when one person dies, there is a ripple, an avalanche. Everyone around them dies too, at least a little. I can’t instigate that kind of pain, not on purpose. I think there will be moments in the future in which I don’t want to be alive, not right then. It has happened before. But there are also always things to come that bring me happiness. Maybe I can adjust to a different life. Again. I just think that while I am able, I ought to endeavour to enjoy the time I have, whatever way I have it. To try to improve the lives of people around me, and use my voice to champion the things that have kept me here thus far.

Even when everything seems merciless and wearisome, for as long I can hold on to some strand of hope, I won’t let go.

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The 22nd of September. 

Hallo darling, 

It has been three weeks now, since you left us. I am recovering from my most hectic few days in a long time, which culminated in saying goodbye to you. It was a lengthy drive, and you would have told me not to come, that you didn’t warrant that kind of effort. You never could fathom how much you were loved. But I had to be there. I couldn’t let the last time I saw you be the last time we were together. 

This was never a place we were supposed to be. Everyone knows I’ve been to a lot of funerals. However, they are not the funerals of friends. I have said goodbye to many people, but they have most often been children, which is not to say I didn’t love them and was not devastated, but I did not connect with them the way I did with you. I am not only grieving over losing you, but all the years I saw ahead with you too. We have not just had a friend ripped away, but a lifetime. We were supposed to drink coffee and eat cinnamon buns together. I wanted you to see the end of the saga of my swollen arm. I wanted to see you with the hair I know you were so desperate to grow back.

Adam said it most succinctly, with his string of expletives during his speech. Fuck cancer. There is a part of me that has to slightly contradict him though. It’s the worst, most selfish part of me, but I think you would understand. It’s saying thank you, cancer. I wish to infinity and back that it had ended differently, but if I hadn’t been ill ten years ago, there might not have been any reason for us to develop the bond we did. I know that we shared things that you could not speak to anyone else about, and I hope you were able to find comfort in me. 

You were, quite honestly, one of the best people I have ever known. I have no other way to put it. Only someone quite so phenomenal could inspire the love that has poured out since your departure, and it was an honour to call myself your friend. I am so proud of everything you achieved, and what will be done in your name. Only you could have appeared in such flamboyant form, a rainbow on a clear day. Thank you for being here. For all of it. I love you. 

The 23rd of September. 

Oh god I am so tired. All I want is my bed. I had to be awake at seven to be at hospital for my nine o’clock eye appointment and finally the past week has caught up with me. 

I saw Carmel, the lovely nurse, and she checked my vision and my pressures, and I could read more letters than last time. Then Dr. Barry called me in, and checked out my eyes. He has changed some of the eye drops, and whipped out some of the lashes in my left lower lid. I made some comment about how there’s not much we can do about them, and he said actually there is! So I’m going to have electrolysis, which involves having local anaesthetic in the eyelid, then a hot probe put in the root and it kills the troublesome lashes. 

Back at home, we were just about to have lunch, when Jill from Black Sheep called, because Michaela’s half one client had cancelled or moved, so could I come in early? That was fine, so I ate my lunch (including my chocolate crodough, which was still good even after two days) and we went into Sutton. Just a bit of a chop, so I was only there about an hour, swapping baby photos and stories. 

Since getting back, I have just flooped. Had some hugs from the kittens, who have clearly missed me. Henrietta less so. I have tried stroking her with the roller a bit but she continually flinched and I felt bad so I stopped. Now bed please. When Strictly finishes I am off. 

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The 20th of September. 

I am knackered and in such ferocious pain that I am walking around bent over at a right angle but I have had the bloody loveliest day. 

I got up at eight because my brain was too excited to sleep any longer, and that meant I had time to watch last night’s Bake Off before going out at eleven to catch my train to London.

The journey was largely uneventful, but I was kept amused by the man sitting diagonally opposite me who was greatly enjoying Game of Thrones on his laptop. Then, in a true miracle, a man appeared with the ramp within a couple of minutes of us arriving at Euston! I was really quite shocked. 

I got a cab from there straight to Paternoster Square, to see the Make Blood Cancer Visible installation. All the names of patients, with their particular type of blood cancer, age and story attached. I roamed around, looking for somebody with AML. It would have been nice to come across a young person, but the only two I found were 62 and 77. I couldn’t really relate. Still, I saw three chaps standing around with a camera and talking, so I went over to see if they were involved in the campaign. They weren’t, they were just interested in photographing it, so then I introduced myself and explained what it was all about. They told me I was very brave, and it was good to see me battling on. I am indeed a soldier. But on the subject of invisible diseases, one of the men mentioned that his wife has an inner ear balance condition, and I said “Oh, Meniere’s?” to which he was very surprised because he’s never met anyone who knew what it was before. She has had the steroid injections in the ear which Daddy is about to have and found them very helpful so that’s promising. 

I left them to carry on, and bought myself some lunch from Paul which I ate in the square while listening to a podcast. 

After that, I hadn’t got anything else planned for the rest of the afternoon and had plenty of time to kill, so I took myself to Konditor and Cook in The Gherkin for some Curly Wurly cake and my fourth coffee of the day. It wasn’t very far, and it was quite easy to navigate a path because I just had to go in the direction of the very tall buildings. Easy. I also bought two brownies because I can’t not, when presented with the opportunity. They are bloody delicious. 

About four o’clock, I decided it was time to go to the hotel, so I got another taxi over to The RE Shoreditch, where Mommy and I stayed when we went to watch Christine do her run in Victoria Park. 

I checked in, and the duty manager got called over because I am disabled. They asked if I wanted to switch to a room with an accessible bathroom but I explained that wasn’t necessary, as long as I could get in the room in my chair. Then I had to read a letter explaining what to do in a fire and sign a form to prove I had received it. All that was left was to pay and my heart beat so quickly as I waited for the machine to confirm my payment because Nationwide have a nasty habit of not allowing large purchases to go through because they are really over-zealous and it causes me no end of problems. Thankfully, it worked and I was hugely relieved. 

I spent the next couple of hours talking to Mommy on the phone, unpacking bits and pieces, and making sure everything was ready for when I returned, ready to crawl into bed. 

Amusical was to start at half seven and I wanted to give myself a bit of buffering time to eat something before going in, so when I arrived I ordered a bowl of chips and a glass of wine because that’s the kind of responsible adult I am. 

The only really wheelchair accessible space was right next to the stage/sound desk, so I had a great view, particularly of all Jayde’s incredible costume changes. They opened with Jayde and Kiri performing a heart-rending rendition of Come What May from Moulin Rouge, and Jayde can really bloody sing! Our first act was Brennan Reece, singing Waving Through A Window from Dear Evan Hansen, which I didn’t know but it was lovely and I am downloading it now. He was really good as well! Next, we had Tiff Stevenson singing Don’t Cry For Me Argentina from Evita, absolutely class. Short interval, during which I had a chat with the father of the musical director who was a big fan of my wheelchair. Next up was Alex Zane, who’d really committed by dressing up as Mary Poppins and singing Supercalifragilisticexpialidocious, including hat changes for the different characters. It was during his song that my hands began to hurt from clapping. Fourth was Evelyn Mok, singing Memory from Cats, in a leopard-print onesie and checking the lyrics on her phone. Another interval, and I was joined by Tiff and her boyfriend, so we got to catch up a bit before the final section. In that, we were given Spencer Jones singing Reviewing the Situation from Oliver, accompanied by the guy who’d been on the sound desk suddenly playing the violin brilliantly, and he was really excellent. And his encore song was going to be You Give A Little Love from Bugsy Malone, so he had to win. Finally, we had an enormous group singalong of Do You Hear The People Sing? from Les Mis and it was incredibly rousing. 

The bar didn’t close, so I stayed for a while, having chats, until it got to about midnight, and Kiri walked with me up to Oval Space so I could poke my head in at Dean’s night before going round the corner to my hotel. When I arrived, I just hoped Adam and Amy were still there, and thankfully Adam spotted me pretty quickly so I wasn’t alone for long. We had a nice talk, then Amy and Elliot came down and we had a singalong to some incredible tunes that were perfect for the night. We were all really tired by this point, and there was some dry ice or something that was affecting my lungs, so I left about quarter to one and was so glad my hotel was just minutes away. When I got out of my chair, I was pretty much bent double with pain and my eyes absolutely killed. So happy to be able to get into bed. 

The 21st of September. 

I had a fucking terrible night. The only good part was the pillows. I started trying to settle down to sleep about two, but I didn’t drop off. I got through two podcasts, I remember looking at my phone and it being half past four, I kept hearing people outside my room, and every time I moved, my back protested heavily. I got up at eight, doubled over in pain. It was no worse than being in bed. 

I got myself dressed and packed up, thankfully not much to put away, and was checked out by quarter past nine. 

Needed breakfast, and I wasn’t far from Rinkoff’s, so I had to get some pastries. I had an enormous cinnamon swirl (only appropriate after Dean’s event last night) and very hot coffee, which I got through while taking in my surroundings. My two favourite customers were the man who came in whose water had gone off so he filled up two enormous bottles and a jerry can, and a guy who wanted a sandwich with only green olives in it. Bizarre. 

To take away, I bought two crodoughs – one toffee apple crumble, one chocolate, plus three rainbow bagels and a mini challah. Then I got a cab to take me to the Wellcome Collection, where I was meeting Hannah, a fellow transplant patient for coffee. I got a flat white and some orange juice so I could take my tablets, then started writing a blog post while I waited for her to arrive. 

When she did, there wasn’t really any stopping us talking, we just had so much in common. There aren’t many transplant patients my age that I come across so it’s lovely when you can sit down with someone who can empathise with all the stupid problems you have. It was a shame we only had just over an hour, but next time we will have longer. 

I wanted to get some kind of green juice from Pret, because my diet had been terrible for the past couple of days, and when I went to pay, the very nice man serving said he’d get it for me, so it was free! Bless him. Then, at the assistance office, they sent me straight down to the platform, and I was on the train with plenty of time to spare. Phew. 

Mommy was there at New Street to pick me up, and I got changed into some jogging bottoms and fluffy socks in the back of the car. We had to collect Alison from school on the way home, and that was terrible because it was hometime, so the roads round there were really busy and all I just wanted to get into bed. 

When we eventually got home, it was about four, and I hadn’t eaten since my cinnamon swirl, so Mommy made me a boiled egg and soldiers and I curled up in my armchair. Finally I can rest. Until the next early start tomorrow. 

The 10th of September. 

Today has not been so terrible, in terms of pain, but I have still felt pretty shit all day. 

I’m still tired, from not sleeping properly due to pain, so I got up just before the start of Sunday Brunch and got dressed in a cosy jumper and leggings, because the weather demanded it. 

I have, again, not moved a great deal, but also have not crocheted at all because I just can’t concentrate. I thought, after lunch, that I might need a nap, so I went upstairs to lie down. I put on a podcast, curled up and closed my eyes, but I did not fall asleep. This is good; it means I am not ill! Just feel shit because I’m tired and in pain. Preferable. 

After coming downstairs from my rest, I watched three episodes of Bones that had appeared overnight, and tried some Hugo petting. I forced him on to my lap and stroked until my arm was tired. He must learn to enjoy it. 

The 11th of September. 

Another early start, but for a good reason. I met up with Adam this morning, because he’d come up to the QE to talk to some of the nurses about stuff Dean wanted to do. It was really good to see him and give him a big hug in person, as opposed to verbally via direct messages on Twitter. We talked about how it had been in the last couple of weeks, and at the end, and his incredible appearance on Victoria Derbyshire. How he’s coping, how I am. There are things that are being planned in his name that I am looking forward to seeing. His legacy will live on. 

He had to get going up to YPU, and I had to go home for lunch before my chiro appointment. Trine has managed to make me feel some relief – it appears one of the muscles on the right side of my back had gone into spasm and travelled all the way up (or down, I’m not sure which end it started) which meant all of that side was contracting. No wonder I was in pain. She managed to work some of it out, while I gritted my teeth. Thankfully it hadn’t transferred into my neck, so I just needed some ice pack treatment when I got home. 

Since then, I have crocheted some mice for the kittens to play with. Henrietta has appropriated an old one which is incredibly tatty, so now they have some more that aren’t falling apart. 

The 4th of September. 

Keeping busy. I had a reasonable sleep, thank god, and today I’ve just been trying to keep my mind concentrating on different things. 

This morning, I wrote up a blog post, and rang up Lydon’s to book the kittens in for their first vaccs. Mommy stood on Harvey’s foot last night and was worried that she’d hurt him, but he was running around and putting weight on it soon after, so I wasn’t massively concerned. And of course, I’ve started up another doily. 

After lunch, it was time to go to the vet. We weren’t going to try to take Henrietta, seeing as I can’t touch her and Mommy is only vaguely tolerated. Packed the two kittens into a carrier and off we went. They were more stressed by the experience than I expected, not even wanting treats when they were on the table. They both are pretty much heavy enough to be neutered, but their balls are too small so we’ll leave that a while. Got some decongestant powder for Henrietta and tablets for the kittens so that’ll be joyous to try to administer. 

Since we got back, I’ve booked a trip to London. An installation has been put up in Paternoster Square of the names of blood cancer patients to make blood cancer visible as part of blood cancer awareness month. It’s only on until the 30th so I’ve had to book a special trip!

The 5th of September. 

I got a message from Adam this morning, telling me to put Victoria Derbyshire on. I assumed there was just going to be a piece about Dean, as I knew she had spoken to him via Twitter. I was beautifully surprised to see Adam, Drew (Dean’s brother) and Josh (Dean’s friend and the co-founder of HISKIND) sitting on the sofa, ready to tell the viewing population about him. And they were so brilliant. Adam spoke so movingly, and was able to not fall apart. And people sent in really lovely comments about him – even in a short segment, it was obvious what an incredible guy he was. He will be loved forever. 

This afternoon, I’ve been crocheting and catching up on Nashville. Also we tried giving the kittens the worming tablets which didn’t really work, so we smushed them up and put them in their food, and put the decongestant powder in Henrietta’s, which she gobbled up. Hopefully she’ll start breathing a bit more quietly. Bless her. 

Haematology clinic in the morning. Good. I need more eye drops. My left eye has been bad for a week, and doing the dexamethasone drops twice a day isn’t enough. Back up to three, need more drops.