Archives For pandora

The 28th of July. 

I actually had a thing today – endocrine clinic, but I’d forgotten to put it in my diary. Thankfully, Mommy had it in hers, so we didn’t miss it. 

Andy Toogood usually runs pretty well to time, and today was no exception, so I got very little of my book read. He called me in shortly after half eleven, and I updated him on my current state. There’s nothing he can do about any of it but he needs to know these things. He did want some bloods to check my thyroid function, so I did that, then we had a quick trip into town. I needed to stock up on facewipes, and Mommy wanted to get her glasses tightened up a bit. We went our separate ways, and I searched all the aisles of Superdrug, but it think they’ve stopped stocking the range I use. Curses. So I bought some other ones and some toothpaste, and had a very entertaining time in the queue – a child in front was being a dick, doing fake crying because he couldn’t have some mint imperials. Then, when I had to pay, he was blocking my way, and refused to move. The woman with him (grandmother?) couldn’t get him to move until she physically moved him, and she apologised to me a lot. As I left, I heard her say “That’s it, I’m not taking you to McDonald’s now.” Bwahahaha. 

This afternoon, I have been assembling the minion. I got the arms and legs on, but when it came to attaching the eye, it was too big, so I’ve had to make it again with a smaller hook and it looks a lot more promising. 

The 29th of July. 

Finished the minion and season 2 of Zoo. What a productive person I am. 

Started my day with a phone call from Black Sheep to rearrange my hair cut appointment because Danyl has left! Don’t know why, he’s just gone. So June is going to cut it instead. Mysterious. Then I finished the minion’s face and took some photos to send to Robyn and Stu, who were greatly appreciative. Then I wrote up the blog post I forgot to do yesterday, and sorted out what I need for the panda. 

Lunch (pretzel and cinnamon swirl, thank you M&S), then this afternoon has been spent on the last three episodes of Zoo (had a tiny cry) and began work on the panda. He does not contain an immense amount of black and is less tricky than the minion so won’t be as hard as I thought.

I have also been trying to find a Pandora charm that is appropriate for tomorrow. I found a toy soldier, because I am a brave soldier? These links are getting very tenuous now but there is not much I haven’t thought of in ten years. 

The 19th of December. 

I am quite pooped from all the Christmasifying. It feels like I have been doing jobs all day. All for a good reason though, so I don’t mind at all. 

During Sunday Brunch I tidied all the area around my armchair in the living room (I tend to spread myself around). I was then supposed to sort out my wool and the remaining snowball hat, but Mommy went out so Daddy and I ended up in a rather long conversation about her presents, and before we knew it, it was lunchtime!

Cheese on toast, then I made up the last large snowball hat. I had to invent a pattern because I didn’t like the one supplied; it looked ridiculous. I did it as fast as I could but it still took me a good hour and a half. Daddy out the lights on the tree (after great discussion about which ones we had last year), and I put Elf on and set about decorating. The tree is my domain. Memories of the years I’ve felt lucky to have – a Disneyland bauble, Harrods and Liberty ones, my little yeti man with his special arm that I bought in November. Now I’ve just got to add my presents underneath.

And today is the eighth anniversary of my first stem cell transplant. I think I’ve run out of words to describe how incredible I find it that I’m still here. It feels like another lifetime. I spent that Christmas in an HDU cubicle. I woke up alone. All my presents had to be alco-wiped, and I remember Mommy and Christine sneaking in a Dairy Milk Buttons ice cream that I wasn’t supposed to have because of the “clean diet”.

Happy Marrowversary to me!

The 20th of December.

Oh I feel so festive. A day of total joy. Becky and I started the day at The Electric Cinema, ready to watch The Muppets Christmas Carol in our Christmas jumpers and sing along. Before it got started, there was a game of the pass the parcel and we won one! An R2-D2 book of cardboard cut-outs that you put together, and the Spongebob DVD. I also got some colouring pencils which might come in handy, you never know. There was a short film before the main event, of various comedians and actors singing to It Feels Like Christmas, and it was lovely. 

There is not much to say about the actual singing apart from that everyone took part with great gusto and we left full of cheer, ready to spread the word about peace and to keep love alive. 

Becky popped in to say bye to Nick, and I gave her the small snowballs for Jonathan and the Christmas card for her and James. After lunch, I watched Rise of the Guardians which is delightful; I love the Sandman. I’d brought my presents downstairs so I’ve arranged them under the tree, then I went to see Nick for a bit. We were having a perfectly nice time, catching up on Jekyll and Hyde, until he decided to do the most appalling, sulfurous fart, I was forced to leave. 

Tonight, The Sound of Music! I can’t imagine I’ll fit much tea in – I had some chocolate buttons this morning which have been abnormally filling? Even after I didn’t finish my breakfast bagel having choked on it (again). 

 

The 30th of July.

I hate dealing with incompetent people. 

This morning I blogged, very boring. I had a phone call from Jo, the BMT co-ordinator, saying she’d put in a request for me to have my line out on 621, and shortly after hanging up, someone from there rang me offering me a time which I agreed to without looking at the diary. However, when I went to put it in, I realised it was the exact same time as my appointment with the kidney man. I rang back and spoke to someone who didn’t know who I was and claimed they didn’t do this procedure on the ward. I disputed this, saying they clearly do, as I had literally just been speaking to someone who’d offered me a time for it which actually wasn’t convenient. But the numpty didn’t know what to do, so I rang Jo back and told her what had happened, and then I had another call offering me an hour earlier, which I didn’t think will work as I’ll need to lie flat afterwards. They’re waiting to hear from another doctor, and I’m going to ring back in the morning. Igor would have sorted this. 

After dealing with all that, I went and worked off some stress in the gym. Leg press is still out of order, but I got to do everything else. The smiley boy appeared and thought he’d squeeze a spot in the mirror, and at one point picked up a bar near my head, putting his face about a foot away from my face. It was somewhat surprising. 

Raccoon legs tonight. 

The 31st of July.

Today is seven years since my second stem cell transplant. They came from a German fellow who was just eighteen, and he was found in the nick of time. One potential donor had been unable to donate on the day he was needed, and we were all set to use Daddy. If we had, the cancer would almost definitely have come back and I’d be dead right now. Even though his cells got kicked out by the liver donor, we shared DNA, and without him, I wouldn’t have had to have my liver transplant or the stem cell miracle that came with it. The GvHD might have nearly killed me, but the treatment made me cancer-free for good. He’s a hero. 

This morning I sat around waiting for nurses to come and flush my line, but when it got to lunchtime and no one had showed up, we decided to eat and go out. They didn’t come while we were out either so obviously they suck. We had to go and pick up a duvet cover and take back a dress, then went to Pandora to get my German flag heart charm, and I got a Brownie Bomb from Selfridges to celebrate my marrowversary. 

I’ve made two legs of Jessie, and we’re no further on in getting my line out. Going to ring up on Monday and prod them some more. 

One day seven years ago that changed everything. He doesn’t even know. 

The 27th of January. 

Oh I’m not sure what to say about today. I did not have fun dreams and tossed and turned for a few hours this morning before my alarm went off. 

My morning was a blog post and making the leg of the cat I started yesterday. I had an appointment with James at Bad Apple to get my hair dyed because I haven’t had it done for ages. We decided on sort of candy cane stripes in pink, amethyst, green and mauve. While he was painting, he kept making little excited noises which was very frustrating because it was all a blur to me! I am so blind. Yasmin rinsed it out and dried it and everyone is a big fan. Michaela even happened to be in for a meeting so I quickly showed her before Mommy picked me up and I got to finally have lunch at three o’ clock. The wool I needed to finish the bunny arrived while I was out, so since lunch I have read heat and made two of the bunny’s legs. 

My arm is squidgy tonight so I’m glad to be seeing Igor in the morning. 

The 28th of January. 

Well I hoped today we’d make a plan about my line but we only sort of have one. Obviously I was at clinic this morning where I saw Ram. Apparently they’ve requested a venoplasty but as an outpatient so who knows where that is in the system? Ram did try to call Andrew Willis but he wasn’t available. Presumably inflating someone’s veins. Igor has put me in for a lung angiogram as well? Good to know. So we left it with Ram to follow up but I don’t know what he’ll have done. I really need this fixing. 

After picking up my vast prescription from pharmacy, we went into town so I could put my Christmas and birthday cheques from Taid in the bank, get some moisturiser and my Christmas and birthday charms from Pandora – I got the infinity and family ones. 

This afternoon I have finished my first creature from Edward’s Menagerie, Emma the Bunny. I have spent the remaining time working on a polar bear for Sadie. He has a head so far. 

I hope I get a phone call tomorrow. I need to be deflated. 

The 21st of January.

It’s been a good birthday. Started with stopping steroids so that’s a bonus! For breakfast, I had Nutella-filled French toast which was delicious, obviously. Then presents! I got a waffle maker, a bag of Jelly Babies, Edd Kimber’s Patisserie Made Simple, and two (pending) Pandora charms from family. My new slippers were an early present from Grandma, and I got some wool and a book of adorable toys to make so clearly I’ve started one already. 

Mommy went to Sutton to buy my Pandora but they had neither in the shop, the Edd Kimber book and stuff to make Cubanos with so we had those for lunch. Amazing. Oh and while Mommy was out, the postman chose the time I was in the toilet to ring the doorbell. Thankfully I was able to get there!

This afternoon I began this crochet and Mommy and I have been watching TV. I’ve had flowers from Becky and Heidi, other crochet kit from the rest of the Easts, and we’ve had an indian and birthday cake for tea with Most. I spoke to Aunty Audrey at length as she forgot to send my card, bless her. All my lovely friends and strangers who aren’t really strangers sending me birthday messages, I love you all dearly. I’m overjoyed to just be here. I’m a little bit emotional. 

The 22nd of January. 

I hate how polar my emotions seem to be. Yesterday I was so happy, then I had a terrible sleep so I’m exhausted, I feel generally crappy, and my tummy feels off as well. 

This morning I went to Bad Apple to get my hair cut before goes off to have her baby, so I gave her the jellyfish I made for the baby when she arrives. We have cut my bob back in and I’m only allowed trims until she gets back. I’m going to see James on Tuesday so we can do something mad with colour, as I am bored. 

This afternoon, I really didn’t have an appetite, so I ate some soup, and I’ve just been working on my first animalaaa from the new book, but I’ve run out of wool so I’ll have to finish it tomorrow. 

I’m rubbish and uncommunicative.  

 

 

 

 

The 24th of December. 

Merry Christmas Eve! Ooh I am so festive. I just finished watching The Muppets Christmas Carol so I floating on a tide of joy and a thankful heart. A year ago I didn’t even expect to be alive right now, so I’m just super grateful and happy to be here, having a Christmas Eve fire with my Daddy while my sister wraps presents and Mommy cooks smoked fish aka the best kind of fish. 

Today I have watched all the Christmas Eve TV – WALL-E, The Lego Movie, The Muppets…currently on Despicable Me 2. I got a Christmas card from Penny and I have done much crocheting. I also painted my nails green to match my Christmas dress. 

Oh my god I’m so excited. 

The 25th of December. 

Merry Christmas! Oh I am so happy and warm. I woke up, went to the bathroom and on the way back, I saw Mommy and Daddy were awake so I went and sat with them for a little Christmas morning chat, then Christine came in and we went to my room to open our stockings on my bed. There were chocolates, tissues, a stylefile, a little nail polish, lip balm and chewing gum. 

Downstairs in pyjamas for Christmas breakfast! All of the meats, cheeses, breads, pie, yum. I tried some of the custard cream spread on a breadbun but it is too sweet for much more than that. 

Then we got dressed, Mommy and Daddy went to get Grandma and it was time for presents! I love my role as present-giver. I try to give them out equally but always somehow leave mine ’til last. My haul this year included: a Moomin calendar, More Fool Me by Stephen Fry, Being Mortal by Atul Gawande, Offshore by Penelope Fitzgerald (Uncle Jeremy’s book of the year!), The Unofficial Guide to Radio 4, Bread, Cake, Doughnut, Pudding by Justin Gellatly, Pugs in Costumes, two Pandora charms (elves and snowman), a personalised crochet bag with wool and hooks, thermal socks, touchscreen gloves, a necklaces of a coffee tin and spoon, a pug coffee dance mug, a Nutella knife, a Lindt reindeer, a Little Prince moleskin diary, Fortnum & Mason’s Buck’s Fizz marmalade and hot chocolate discs. Mommy was very surprised by her kMix and is looking forward to baking all of the things! I think I did well with my present-buying this year. 

After presents, Mommy and Christine did things with the food and I put Frozen on until it was time to eat! We do our dinner self-service so I had many parsnips and pigs in blankets as they are my favourite bits. Everybody had Christmas pudding with brandy and crème fraîche for dessert, but I had nothing as I was too full and I do not like Christmas pudding. 

Once satiated, we decamped to the living room to watch Strictly and nap. I was very sleepy. After Strictly was finished and I’d had as much Bruce Forsyth as I can handle for the year, the East came over! Jonathan was in a baboon onesie which meant he got rather overheated by the fire. They gave me some chocolates, a cupcake display stand and a Pandora voucher. Got to choose another charm now!

We watched Doctor Who which was suitably ridiculous and terrible. I’m really quite glad I didn’t bother watching this series. 

Now it is time for Christmas cake and Wensleydale, watching Alan Carr and crawling upstairs while I still can. 

I will never tire of this feeling. I am so happy and so lucky to even be here. Sometimes things are more difficult than I would like, but things could be so much worse and right now I have more than most people could ever ask for. Merry Christmas. 

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The 18th of December. 

Well, today has been much less great than yesterday. At about half past midnight, my breathing suddenly became much more laboured and I needed to use the oxygen to be comfortable. Combined with the pain I’m still suffering in my feet and ankles, I didn’t fall asleep until half past four, and I was awake again just after six. 

I’m also concerned about my mouth – it’s just starting to break down in my cheeks, plus a teeny ulcer on my tongue and sore lips. We rang the dental hospital to see if Mrs. Richards could see me as an emergency appointment in case she thought I needed a steroid injection. They were really brilliant and got me in to see Jon Higham who I’ve seen before while there was no one else around. He could see what I meant but didn’t feel injections were necessary and might even be detrimental. We’re going to hit it really hard with topical steroids, plus I’ve gone back up to 5mg of pred. It’s fine; I’d rather have it all under control over Christmas. 

We went to the QE for ECP afterwards which was all fine, and Igor sent an SHO to come and see my elephant feet. Everyone agreed that my oedema and breathing can’t continue, so they’ve given me a new drug regime and I just hope it works!

I would like two things for Christmas – to have normal sized feet and to be able to eat the foods!

The 19th of December. 

Happy marrowversary to me! Today is seven years since my first stem cell transplant from Christine. I got a penguin charm from Pandora, and Christine is the big penguin and I am the small penguin!

I had my fringe trimmed at Bad Apple at lunchtime so I took them a Christmas card and a copy of Grazia. Michaela really liked my fringe in the photo so cut it like that and took a photo. Then Amy was free and I got her to paint a couple of Christmas Minions on two of my nails which are awesome. Then Mommy came to get me and we had lunch at home before Naomi came!

She and Mommy used to work together at the Hippodrome and have stayed friends and she’s just lovely. We haven’t seen her for ages so she came over with lemon drizzle cake, flowers and presents and we had a long-awaited catch up. 

Just after she left, I saw on Facebook that a little boy we know is getting a new liver and bowel tonight! He is in theatre as I write and it is just wonderful. An incredibly kind family have made the brilliant decision to allow their loved one to save someone else. Life is blindsiding and magical.