Archives For May 2014

The 26th of May.

Back to real life, back to photopheresis. Had a phone call from Sharon this morning to make sure that I was still coming. Daddy took me and we picked up coffee and the paper before going up to level 6.

The ECP area was deserted when we arrived, but I went and waved at Sharon, then a nurse called Laura who has essentially taken Amy’s job – Amy’s gone to work in the community and Laura’s back from maternity leave – came to hook me up.

Finished up about two o’clock, then we went to see Godzilla! It was okay, but I was having tummy twinges so I was a bit distracted by those. Honestly, after my scare while we were away, I am absolutely terrified that the infection is going to re-emerge any day now, and I might have to make some upsetting phone calls. I really don’t want to do that yet.

The 27th of May.

Photopheresis day 2. I didn’t have to go in until 2, so I decided to work out while I watched This Morning, then ate lunch before making myself presentable and us going out to the QE.

Hospital was much busier today, it not being a bank holiday. I got through in just under two hours which was good! There was a photographer there, taking photos for a patient leaflet about autologous stem cell transplants. Mommy got talking to the woman on the machine about me etc and I put my earphones in because there are some times that I just don’t want to chat about myself. She said that she liked my wig and I swiftly corrected her on that. I get really offended if someone thinks my hair is a wig because I can tell the difference and it is obvious when it’s a wig because they look wiggy!

Becky came over for a break from report-writing so we gave her the stuff we bought for them in Lyme. I tried to explain the plot of Godzilla to her but I sounded insane.

The 24th of May.

Oh, this time a week ago, I had the most beautiful view. Today, the weather has resembled the apocalypse. Never mind!

I got up and watched Saturday Kitchen with my breakfast. I was able to eat a muffin! Seriously, you can’t understand my level of joy after being on porridge for so long. I can’t really do porridge now because although my tongue and cheeks are improving, the lips are still really sore.

This afternoon, Mommy went to visit Grandma, and I worked out while Chromecasting the first two episodes of Alphas onto the tv. It was obvious that I hadn’t exercised for a week – I burned 748 calories which is more than usual.

I had to coax Oscar inside because the black and white cat was in the garden and I didn’t want there to be a fight. Then I shut him inside because rain was imminent.

We had a FaceTime from Christine and Daddy in Italy. I hate that my lungs don’t permit me to fly – I can’t be at the most important day in my cousin’s life so far. A massive family event, and I can’t go because my stupid body won’t allow it. And what’s worse is that it meant Mommy was forced to stay behind with me. It’s not content ruining my life; other people suffer too.

The 25th of May.

Today has involved being really quite angry at the world. Michael Gove deciding to remove American literature, then the misogyny-fuelled killing spree in California, it does not fill one with faith in humanity.

I watched Sunday Brunch, then spent my afternoon writing up blog posts from holiday. And tonight we picked up Christine and Daddy from the airport, and they’ve been telling us all about the wedding.

The 22nd of May.

The majority of today has been massively frustrating. Leaving Lyme was going to be a wrench until it started raining, then it was not so hard. I said goodbye to the sea, but God I hope it’s not the last time I get to see that view.

We left at about one and drove to Axminster to have lunch at River Cottage Café, where Mommy and I shared the vegetable mezze board. Then I did my mouthwash (a most unpleasant experience when there are actual bits of food in there, ugh) in the car and we set off to come home. There had been a decision made to avoid the motorway because it was going to be a nightmare, but I was not party to this knowledge. Anyway, it resulted in the longest journey home possible.

So everyone was very tired when we got home at gone eight o’clock. Mommy made a risotto, Christine and Daddy unpacked and repacked for Italy, and I stayed out of the way with the cat.

My own bed tonight will be sweet.

The 23rd of May.

Well the first day back home it never super-exciting. I woke up in time ti say goodbye to Daddy and Christine before they went to Italy, but I stayed at home because Anne-Marie was coming to flush my line.

I have seemed to spend a lot of the day giving the cat hugs. I think he has missed us a lot. Poor kitty. Also watched a few things the box recorded while we were away, and I unpacked and tidied my room. Oscar came up there too because he was lonely (Mommy was at Tesco).

My mouth is being problematic because there are ulcers inside my top lip, and the ones on my tongue keep catching on my teeth when I talk, so I’m having to accommodate some sounds which gives me a slight speech impediment. I do hope it gets better soon.

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The 20th of May.

Another beautiful day in Lyme. This morning, Daddy and Christine were talking about going to see the ruins of some abbey which sounded (to me) like the worst idea in the world, so it was decided that they’d go there and Mommy and I would potter around here.

We went to get pasties for lunch, then went to The Sanctuary, which is my favourite bookshop in the whole world. I always get a Discworld novel, plus whatever other gems I can find. Then we made it about halfway to the Town Mill Bakery when my body just gave up – my back is gone from my strange walking over the past few days. So Mommy went to get the chair, and I waited on a step. She came back and took me to the bakery for coffee and cake. The cake was huge but the coffee was terrible. We wrapped up the remains of the cake (it really was huge) and came back.

Tonight we went to Hix! I had some fancy fish fingers and mushy peas (and a couple of ships), then the Peruvian Gold chocolate mousse which was divine. Super airy and whipped and I am desperate for the recipe but I suspect one needs some form of kitchen gadgetry.

Christine gave me a piggy back from the car to the house, and I got out of breath just holding on! I also nearly strangled her. Now, time for Mr. Drew, then sleep!

The 21st of May.

We have been so lucky with the weather this week, yet I have miraculously not caught the sun!

Spent my morning reading the paper again, and Christine went up to Amid Giants and Idols and brought me back a latte which was very nice.

After lunch, I walked down to the sea, popping into a shop to buy some burger earrings that I saw in the window (because why would you not?) and a Moomins magnet on the way. I sat in the sunshine with my iPod for about an hour, just feeling the sun on my skin and watching all the fun dogs. I walked down to Aroma again for another coffee, and I got chatting to two ladies who’d eaten last night at the restaurant we ate in this evening. They saw the picture of Lewis in my phone case and asked who he was, so I then had to explain the whole saga of my life. They couldn’t believe that I could look so healthy on the outside, while my insides do God knows what. My appearance is deceiving, mainly because I don’t want people to see me and immediately  know that I’m sick. When they left, I read the first chapter of The Quarry and bought a bag of coffee beans as I’ve nearly run out at home.

Tonight we went to The Millside for dinner and I had lobster linguine, climbed a lot of stairs through a swarm of midges, then needed Daddy to get the wheelchair to get me home, where the neighbours were having a ukulele singalong.

You said, remember that life is
Not meant to be wasted
We can always be chasing the sun!
So fill up your lungs and just run
But always be chasing the sun!

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The 18th of May.

Today has been very quiet. I had a terrible sleep (or lack thereof), being too hot and cold and needing to turn over every minute. I got up at nine o’clock, feeling incredibly sick, and staggered to the bathroom. My calves are not thanking me for the amount of walking I did yesterday.

I lay on the sofa all morning, just sipping water. At the end of Sunday Brunch, I went back to bed for an hour and a half, and when roused by my two o’clock alarm, I felt a little better. I get dressed and I’ve had a couple of slices of bread which have been okay.

This evening we’re going to watch the BAFTAs and I’ll have an early night. Silly body!

The 19th of May.

Today has been better; good sleep, no feeling sick, legs moving slightly more freely.

I got up and my hair was a total mess, so after breakfast, I stuck my head under the shower so I could blow dry it into a more aesthetically pleasing style. I was a bit desperate for coffee so Mommy went to Costa for me, and I watched This Morning while I painted my nails.

We went up to The Good Food Store for lunch, where I had a crab sandwich which was very yummy – no shell, nice granary bread. It took me a while to get there as I’ve really hurt my ankles with all my walking. I also nearly feel down so it was a good thing that Mommy went with me. We went home again for about half an hour, then went back out to pick up Christine from Axminster! We popped into the River Cottage Café where we bought some pies and I got a mint chocolate brownie which was very good.

Tonight there’s thunder and lightning – no more mini-heatwave!

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The 16th of May.

There is nothing like returning to a place that remains unchanged to find the ways in which you yourself have altered. [Nelson Mandela]

We are back in Lyme. Some of the shops may have changed, but the cobb, the beach and the rolling sea remain very much the same. I was incredibly out of breath, walking from the car to the house, which was not the case last time. It was the summer of 2011, and something magical made my lungs work for a glorious few months. I was wheelchair-free and could go where I pleased. That won’t be the case much this year, no matter how many squats I’ve been doing.

The first thing I did was stand on the balcony and take in the view. You can smell the sea. Tonight we’ve had fish and chips and I am exactly where I need to be.

The 17th of May.

Today was a good day. I had a bit of a weird sleep (the pillows here are super squishy which I am not used to) but I extracted myself from bed at about half nine, sunshine trying to force its way through the curtains.

I spent the morning reading the weekend Guardian and thinking about the fact that I needed coffee. There is a Costa across the road but I really wanted to avoid that if at all possible. I googled “good coffee lyme regis” and found two promising results; one up the hill, one down the hill. I chose the downhill option: Aroma.

Well they make an excellent latte, and I had a really fabulous lunch of a chicken, mozzarella and guacamole with soft herb oil and chilli jam sandwich on granary bread with salad and it was delicious. I had to ask for a spare plate as I couldn’t eat it neatly. I needed more space! But yes it was really good and I’ll definitely be going back. Plus one of the guys working there was vastly amusing so that’s a bonus.

For the rest of the afternoon, I walked down to the cobb and back which took me a good two hours with rests. Now my left hip is hurting a fair bit and I think I might be hobbling tomorrow.

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The 14th of May.

It’s over now. Well it will be soon, once the news stop reporting it. I am sad that he has gone, for those who loved him and will miss him every day for the rest of their lives. But a small part of me is somewhat thankful that I won’t be having the word “terminal” rammed down my throat by every media outlet in existence. There are a lot of terminally ill young people still out there and I don’t know about them, but just seeing his face all the time is like someone sitting on my shoulder saying “You’re going to die pretty soon too, and guess what? No one will care nearly as much as this, and you’ll be forgotten like a passing breeze”. It feels like there’s no point in me even trying to raise awareness of my own condition, of all the shit you go can go through when the “cure” goes wrong. When what saved you will kill you. Because it’ll just be forever compared to what he did. So why bother?

I left Twitter and Facebook and the rest of the media to carry on, and I sat in Bad Apple and let James paint my hair all different colours before Katy Perry. I met Rachel at the LG about twenty past eight, and we got drinks and went to find our seats which were actually really good! She played the oldies and the goodies and I did a lot of dancing in my seat. Roar and Teenage Dream were probably my favourites. Go Katycats!

The 15th of May.

You would think I’d have a lie-in after the late night I had, but no, I was up at eight. A dress that I ordered from G-Star came yesterday and was too big, so I wanted to exchange it for a small before we go away. The shop in the Bullring is actually completely inaccessible to disabled women – the ladies’ clothes are up a lot of stairs and they have no lift, which gives the impression that I am not the sort of person they want wearing their clothes. The sales girl had to go and find me the right size, and I just had to sit and wait. So that made me feel good about myself.

We needed to do that early because Oscar had to be at the vet at ten past eleven, and Danny was coming to train me at one. We did a mini circuit of kettlebell squats, swings, snatches and russian twists. I was knackered by the end. Then I had a phonecall at half two with a chap called Dan at the Sutton Observer just to keep him up to date with life. I was sorry I hadn’t much to tell him.

When we hung up, I watched Hannibal and last night’s Masterchef with Mommy, then I got out my clothes for the week.

I can’t wait to get away. Far away from all of this.

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