Archives For November 2013

The 26th of November.

My mouth is so sore. My tongue especially – I’ve gone through an entire bottle of difflam in three days. We’re going to need to get a lot from clinics tomorrow. Haematology in the morning – walking in because I need to see someone and I will not have the same nonsense as last time, then I have liver in the afternoon.

This morning I ordered some Christmas presents, but I am lacking inspiration so I hope to find some in shops. Maybe in Harrods on the 9th?

This afternoon I wrote up all my Paris blog posts. Still have to catch up to real time! I’ve also been worrying about a pain on my right side but it seems to have faded. Every pang sends a jolt of fear through me – I so desperately don’t want to go back into hospital.

I miss proper food. I am miserable.


The 27th of November.

Ah today was super busy and irksome at times but ended up really fun and had lovely moments in between the stressful ones.

This morning we dropped in at haematology clinic where we saw many people! Sean from photopheresis plus others, Anie and Helen, so that was fun. Went to see Ram who looked at my tongue and is basically letting us do my steroids. He’s going to transfer my ECP funding from Rotherham to here so I can have it again and hopefully that’ll help my mouth.

We had liver clinic this afternoon, but in between the two, we went to see Charlotte Caldwell so I could squidge baby Sophie! She was happy and bubbly which is my favourite kind of baby. We had to leave at 3 but had such fun while we were there. We got in really quickly at clinic (I think some Monica magic). James is happy with everything, go back in two weeks! My tongue really hurt from talking by the time we left and not even a milkshake soothed it. Stupid tongue.

The traffic going home was hell. Going to and from the QE today took us over an hour each way; so frustrating! Then when we got home, we only had just over an hour before we had to go out again. However, this time it was with Becky and Alison to try on wedding dresses!

It was so nice; like playing dress up! Becky took it somewhat more seriously than I as she will actually be getting married at some point, and now we know what shape/style she is getting. I tried on one dark blue dress which Mommy and Alison really liked, then I basically put on the most ridiculously frilly puffy meringue dresses I could find and ended up really liking some! I also tried on an actual gypsy dress that weighed four stone but felt like a cloud. Nobody cried and it was just a perfectly pleasant end to the day.









The 24th of November.

And tonight I feel terrible. All of the adrenalin has worn off, my mouth hurts and I am exhausted.
I got up at about half past nine, and I spent the morning in my pyjamas, trying to feel alright. I have given up on that now. I have looked at all my photos and shown them to Becky and James who came round after lunch. I gave them their presents, then I started trying to edit/cull photos. I’ve done about five? This is going to take some time.

I tried eating dinner at half four (slow-cooked pork, mash, root vegetables) which should’ve been easy, but chewing hurts and the ulcers under my tongue hurt and it is so fucking debilitating. It is just raw.

I don’t know what is going on with my skin either – my fingers and toes are blotchy and itch like crazy morning and night, but it shouldn’t be GVHD because we started the systemic steroids. Betamethasone seems to be helping my hands so I hope it does my feet. Mommy thinks it’s chilblains. My torso is covered from the neomycin rash which now seems to have dried and scabbed, and I just don’t know what to do with it. My tummy has been hurting sporadically all day and I don’t know how it’ll be tomorrow.

I’m just drained now.

The 25th of November.

I am just going to be spending the next several days waiting for each one to be over, because my mouth is just awful. It is so raw and so painful – I can’t really talk or move my mouth at all. I decided the systemic prednisolone needed to be bumped up to 30mg a day, after looking at my diary and photos from last year when this happened. I just have to wait for the steroids to work, and until then, I shall be miserable.

I spent the day with the laptop in front of me, editing my photos. The good news is that I’ve got through them; the bad news is that’s because I had to discard a lot because I hate them. My ISO was high to combat the grey weather so my photos are grainy. They’re not fixable.

I planned on starting my Christmas shopping today but after staring at the screen all day, I just couldn’t. I still have a headache from it.

There has been a lot on TV about loneliness today in old people and all I could think was “I know how that feels”. Illness is so incredibly isolating because you can be surrounded by loving people but none of them know just how truly terrible you feel. How can I explain what I’m going through when I literally can’t even speak?

The 22nd of November.

Our last full day at Disneyland today! Boo. But it will be nice to sleep in my own bed, on my own again. Mommy snores.

This morning at breakfast, another English person and I stood around waiting for fresh pancakes to appear. Oh the joys of hotel breakfasts.

We flushed my line (even at Disneyland, one cannot escape necessities like PICC line hygiene), then went out to finish our shopping. It’s amazing how all the shops here look the same, yet you can never find the one you want. But now everyone has a present and we (because Mommy is a packing wizard) have managed to pack everything without having to buy another bag!

Today we had lunch at Walt’s, where we had salmon starters, then I had steak and some miniature puddings. We swapped around so I just ended up eating two mini chocolate fondants which were really good!

This afternoon we made sure all the packing was done, and talked to the concierge about a taxi tomorrow, so that is booked. We escaped the park before four because the parade was on early today and we didn’t need to see it again.

Tonight we went to Starbucks for coffee and cake, and I made faces at babies. A company called Natixis has taken over Disneyland tonight. What an awesome Christmas do.


The 23rd of November.

And we’re back on Greenwich Mean Time.

Today has been long and tiring. We got up at half eight and went for breakfast. Going to have to make our own tomorrow, guh. Brushing my teeth hurts so much.

We basically spent the day killing time – spending our remaining euros, having coffee, then lunch at the Earl of Sandwich. The parks were mentally busy today because it was Saturday so we mostly avoided them.

The taxi came to pick us up at half three, and the traffic was fine so we got to Gare du Nord at about half past four and had a lot of time to waste. We had hot chocolates and bought chocolates from Neuhaus.

Eurostar back was much better – we were in the proper wheelchair space in Standard Premium. I got put on the train with a lift, we got given adorable food, everyone was nice…loads better than our journey there.

Daddy picked us up at St. Pancras and drove us all home. Oscar was very confused. Now I am going to bed.


The 20th of November.

We are in Disneyland!

This morning we had breakfast in the hotel, so I had two mini pains au chocolat and some bread and nutella. Then we packed up our stuff and went back to the Arc de Triomphe, where we were going to get the train from. However, we couldn’t find the lift so the supposedly-accessible station, so we thought “Sod this, it’s going to be too much stress”, went back to the hotel and got them to call us a taxi who brought us here. It cost €90 but frankly, we don’t care.

We checked in and our room is on the ground floor so it’s super accessible. It’s very pink. Oh, when we came in, a brass quartet were playing! It was the Winnie the Pooh theme tune. We saw a little girl meet him and her face of wonderment was adorable. We bimbled about and at some lunch, then came back to the hotel to wrap up warm before going out to watch the parade. It started off fine, but got progressively wetter and by the end, my toes were freezing and we were quite drenched. So we made a beeline for the hotel again to dry off and have a little rest before dinner at six. We met Mickey, Minnie plus a whole load of other characters so that was lots of fun.

Tonight we’ve FaceTimed Christine and Daddy and listened to a Josh Widdicombe podcast, and now I’m doing this with the BBC International News channel on. The weatherman keeps using the word “trundling”. I don’t think storms can trundle.



The 21st of November.

I am doing my writing a bit earlier tonight because I didn’t sleep brilliantly – I was too warm, Mommy was snoring, I don’t know. I’m sleepy.

We had breakfast in Inventions which consisted of meats, cheeses and carbohydrates. My favourite breakfast that I saw was that of a small girl who had a plate full of mini jars of Nutella. Her dad removed one. Just one.

This morning we went to Walt Disney Studios and looked at all the things. The Studios are less fun than the Disneyland Park, because they’re showing Armageddon and Signs and other stressful films. Do not like. My toes got really cold, so we made it our mission to find some fuzzy Tinkerbell socks for adults but we failed because there are none! So I have pink Minnie Mouse ones instead.

We went to Auberge de Cendrillion for lunch had three super fancy courses which made us incredibly full. I had photos with Cinderella, Snow White and her Prince, and Ariel! I also saw many tiny adorable girls. It’s fun to make faces at wee children.

This afternoon we bought a blanket and some other bits, then we watched the parade again with no rain this time! Much better. Then we went to Starbucks for a hot Christmassy beverage because we wanted hot things but not food. I bought the Paris Starbucks mug.

Tonight we had drinks and nibbles in Café Fantasia and now we’re listening to The News Quiz podcast.


The 18th of November.

Today has been stressful and tiring but we are here, in Paris, and all is well.

Our trip to Euston was good, but after that, our travel was not good. The assistance man at Euston expected me to just roll down the ramp towards him, then put the wheelchair in the back of his buggy in an extremely unsafe manner. At St. Pancras, our Eurostar seats had been cocked up, so I had to get out of my chair, Mommy had to lift it onto the train and stash it in the luggage rack, and had there been a fire, I would have burned. I tweeted angrily about it and Eurostar rang me up to sort it out. Twitter is good. At Gare du Nord, there was no help at all. We found the Eurostar ticket office and our seats back are sorted.

We got a taxi to the hotel – driving in Paris is terrifying! Especially round the Arc de Triomphe. There are no lanes! All very scary.

At the hotel, the lifts are miniscule – the wheelchair literally only just fits inside! So that’s interesting.

We went out hunting for coffee and found ourselves in a scary place, so we went back to a Starbucks we’d passed. In there, we saw a man with a woman who was obviously being paid to be there. Cropped pink fluffy jumper, enormous breasts, long blonde fake hair, and his hands were everywhere. Then we had dinner in McDonald’s because we’re exhausted. Back in the hotel, we’ve found BBC1 and I will sleep soon.


The 19th of November.

If you ever want to do Paris in a day, come to us. You won’t go inside anything, but you’ll see everything.

We had pastries for breakfast at the boulangerie we went past last night, then we made our way down to the Trocadero and the Eiffel Tower. I’ll say this now and get it out of the way: all the architecture in Paris is utterly captivating. I would walk around gazing upward all the time if I could. The amount of work that has gone into every building is just phenomenal. The Eiffel Tower was a bit shrouded in mist this morning, but as we got closer, it got clearer.

We then went to Notre-Dame, and across to the Louvre and to the Jardin des Tuileries. I was just blown away by the Louvre, to be honest. I hope my photos aren’t terrible.

We meandered through the gardens, down to the Obelisque, where we turned right and went down Rue Royale. We went into the Villeroy & Boch shop and I wanted to take all of the Christmas things home with me. Then we went to Galeries Lafayette. Even the windows were fantastic. Every single one had moving puppets and played music. Inside, seeing the tree and the ceiling…I’ve seen photos but never thought I’d have my own. It is even more beautiful than I ever thought possible. I have no words to describe it.

We went up to the restaurant and had soup, then we bought a couple of souvenirs. We went to the Christmas shop which wasn’t properly open yet, then I got a coffee and we went to the food hall. It smelled amazing, and we bought Daddy a present. We kept getting lost and ending up at the chocolates.

After we left, we went back to the Champs-Elysées, where we found a Christmas market! That was a nice surprise! It’s not as good as the Birmingham one though.

Back at the Arc de Triomphe, I took some photos, then we got sandwiches and cakes for tea in the hotel. This evening we have rested, eaten food and watched BBCs 1 and 2. Mommy had fits of giggles at Monica in Masterchef.

Tomorrow we go to Disney!



The 16th of November.

This morning was errands – washing hair, putting cheques in the bank, buying mascara and nail varnishes and Christmassy beverages.

I’ve put some of my Paris plan into my phone. I still can’t quite believe it’s happening. Six days in Paris! Me! I can’t wait.

This evening, we were watching the best bits of Children in Need and when Ellie Goulding sang How Long Will I Love You, I looked up and Mommy was crying. She knows I want it for my funeral. I just squeezed her as hard as I could and kept my own tears in. If I go too, we’ve got no chance.

It still doesn’t feel real. I’m still buying things and trying to live as though I’ll carry on forever, yet in some ways I’m still behaving massively contradictorially. Is that a word? It is now. Sometimes I’m collecting things for my future, sometimes I’m splashing out because I don’t have one. I wonder what the point of taking photos in Paris is when in a year I doubt I’ll be here to look back at them.

It’s complicated.

The 17th of November.

Argh today has just been a countdown day. I’m trying not to get too excited or I won’t sleep. Also I have to keep in mind that I might wake up in pain. It would be devastating, but it could happen. Trying not to think about it.

This morning I watched Sunday Brunch and painted my nails (multiple times, as I kept ruining two of them), and I read yesterday’s paper. I did really well at the crossword!

This afternoon we packed most of the bag and discovered that it won’t go on the back of the wheelchair, so I’ll have to carry it on my lap, and shift it around if I need my handbag.

Everything is charged and pretty much ready. So much so that I even had time to watch Arthur Christmas because I’m just that festive.

I am beyond antsy; I simply must calm down.


I’m still here.

November 24, 2013 — 2 Comments

Sorry for the lack of updates in the last week but I have been in Paris! I took many photos and wrote it all down so I will update soon I promise. My body is doing weird things but I’m hoping we can deal with it.