Archives For October 2013

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The 29th of October.

I have got to stop expecting life to be even vaguely normal now.

It started with the post (again). A complete stranger has bought me two tickets to the Harry Potter Studios (a big shout out to Simon Pooni, wherever you are), which made my mama get teary. Then Maria Hanson and Sarah Degg are basically sorting out The Hand and Flowers, and Sarah’s friend is going to arrange for a limo to pick us up, take us to Harrods, we’ll shop, then take us for tea at The Ritz and bring us back!

I’m just blown away.

Alison came round this morning and she was telling us about the Sunday breakfast at the Hard Rock Hotel in Florida and it sounds like the greatest meal ever. I’m incredibly jealous and incredibly gutted that there are all these things I will never do, places I will never go. I can try and substitute like for like within Britain, but I know it isn’t the same. I’m trying not to think about it.

This afternoon, Sarah Falkland and Paul the cameraman came to talk to/film me for Midlands Today. They were here for nearly two hours! We talked, we both nearly did a cry but kept the tears in, and they force-fed me cake. I haven’t been able to watch the piece because it is too cringe-worthy.

Becky (and James, eventually) came over and we had tea and watched TOWIE because their existence is a wonderful form of escapism.

I am having an early night. Knackered.

The 30th of October.

It is a quarter past nine and I’m in bed, exhausted. I know I’m really tired because my breathing has been terrible all day.

This morning I got my mama to wash my hair, then we went into Sutton because we both had errands to run – I needed eyeliner and a lightning cable, she needed to exchange some trousers and do a thing in Nationwide. While we were there, I decided to transfer the money in my ISA to my normal account, so I’m feeling rather flushed right now. The lady in Nationwide was asking if I wanted to open another savings account. I just smiled and said it wasn’t necessary. I suppose I shall need to make a will. I don’t want to die intestate.

This afternoon, Becky and I went to Moor Hall for their “Chocolate Indulgence” afternoon tea. It involved finger sandwiches (we ate two each out of politeness), meringue sandwiches, chocolate chip scones, a chocolate tart and coconut-coated-chocolate-covered sponge. We were very sleepy by the end, having had so many carbs and being sat by the fire. Tomorrow she’s off to Disneyland. I am very jealous; I love Disneyland.

This evening, Jo Phillps came over and we watched Hollyoaks and some GBBO. We both find Paul Hollywood very creepy and his hair looks crunchy. That is not a word one should have to use to describe hair.

I am so sleepy. I want lots of Christmas jumpers.

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The 27th of October.

Surreal is the only word I can think of to describe today.

It began ordinarily enough – went to hospital for obs and to see James, which was all over and done with in half an hour! Discharge tomorrow afternoon to avoid driving in the storm. Before we went home, we went to the Bullring to get advice about my mama’s phone battery, then I needed to replace a mascara and a scarf that the pixies have stolen. Bastards.

We had venison with a whiskey jus for lunch which was very tasty. One of the main reasons I love Autumn is that it’s game season! Then this afternoon, Helen, Rosie and Rachel came round for tea and cake, and we spent several hours eating, drinking and wondering what the hell we were thinking in our youth. I have missed them.

Oh God, I forgot, I started the day on the front page of the Sunday Mercury! Next to Amanda Holden and a woman in a bikini, because all our stories clearly tie together. Now, I suspect they have the same parent company as the Daily Mail, because tonight I’m on their website with photos from the Mercury’s photographer. Right next to the sidebar of shame, my life’s ambition has been realised.

I never thought I would be on the DM website, but I must use it as a force for good. The blog traffic is already mad.

I’m just a bit shellshocked.

The 28th of October.

First morning that I haven’t had to wake up for anything. Stellar. And we had no discernible storm, so I slept the whole night through. Then I didn’t get out of my pyjamas until about midday. Mainly because I just didn’t have to.

After lunch, we spent our entire afternoon in hospital but it was worth it as I now don’t have to go back until a week on Wednesday! Saw the doctors who all knew about me being on the Daily Mail website because Dr. Shah reads it. I love this image. I am not in the print version. At least not yet.

Got a massive bag from pharmacy which will keep me going nicely for a while. Derek flushed my line and we went through all the drugs, and the community IV team will come out to me next week.

I had a phone call this evening from Claire from the Observer, asking if it was okay for her to give my phone number to someone, and the upshot is that someone from Midlands Today is coming round to interview me tomorrow!

This evening I have discovered that I am big in Brazil, I put up a blog post putting a few things straight, and I received a hilarious and brilliant video from Joe Gilgun.

People are pretty fantastic sometimes.

  • I no longer have leukaemia. I haven’t had cancer since 2008, when I had the second bone marrow transplant from the German chap.
  • Those of you offering your organs and bone marrow are very kind, but unfortunately they will not do me much good. The only option for me was another liver transplant, and because of the situation with my lungs, I cannot have that, so the only way to prolong my life is to treat the bugs with antibiotics until they become fully resistant. Then I will die, and no chemotherapy or other treatment is going to stop that from happening.
  • While I’m mentioning “other treatment”, any more messages concerning nonsensical remedies that are not going to do me any good whatsoever will be deleted and not even dignified with a response. Also, I don’t believe in God. Please respect that.
  • If you are considering signing up to be a bone marrow or organ donor but have concerns about whether they will take you due to a pre-existing condition or any other reason, please contact the Organ Donor Registry or the British Bone Marrow Registry, as they will be much better equipped than me to answer your questions.
  • Unless I know you or there is a pretty good reason, I will probably not accept you as a friend on Facebook.

Comments_‹_In_one_of_the_stars_I_shall_be_living._—_WordPress

Comments like the above are not acceptable. I do not believe in God, nor your bullshit fruit cure that is “stronger than chemo”. I don’t need chemo, I need an entire new fucking body and trying to tell me that some bollocks you are peddling is going to work is plain fucking insensitive so kindly fuck off.

That is all.

stephen fry

The 25th of October.

My lie-in was a massive anti-climax because I woke up at one, two and four. That really rather ruins a good sleep.

Becky had put an Observer through our letterbox because guess who is plastered across pages four and five? Yours truly. The article was much better than previous ones that have been written about me and I don’t look hideous in all the photos, so I’m quite happy.

We went to hospital for half ten for obs, to see Charlotte and to allow James to “clap eyes on me”. She told us how she’d been to Find Your Sense of Tumour and it sounds very different to when I went. My time seems like much more fun. Then James and his entourage came in. They were pleased with my general appearance and the team are hopefully sorting out all my drugs. I said “Go team” and they all found this vastly amusing. Back tomorrow and Sunday at half ten, then formal discharge on Monday!

This afternoon, I wrote up a blog post, hid from the window cleaner, babysat the phone which did not ring, and watched Misfits. Joe Gilgun is now that program’s only redeeming feature, but I must see how it ends.

Tonight I am writing this in my own bed instead of the one in room 25.

The 26th of October.

Well today has been really rather fucking fabulous! I had a better sleep, and by the time I got downstairs, the post had come. Now this is not usually a tremendously exciting event, but today, along with a reminder from the dentist, I got a photo of Stephen Fry with a personal message and a verbal hug! So I started off the day very perkily and slightly trembly.

Went to hospital, had obs done, saw James in his casual-weekend-consultant-attire, had a discussion about pharmacy’s inability to send me more than one week’s worth of aciclovir at a time. It makes no sense. It’s like their strange habit of only giving me 12 neomycin tablets at once. They must waste so much money on brown glass bottles.

This afternoon, Ethel had been to see Grandma and taken the Observer. Having seen it in black and white, she had got quite upset, so I went in with my mama to see her so she could see that I still appear well and functioning to the untrained eye. On the way out, I got to play with a pug! It had come to visit someone else. I want a service from which I can rent tiny dogs to play with.

I had a visit from Sophie McCance-Davis who brought me the cake her neighbour made for me. It is like a FORTRESS OF CHOCOLATE. There is a wall of Flakes and layers of cookie dough and Oreos. It’s a good thing I need to put on half a stone!

Tonight I have retrieved a load of old photos from my broken hard drive and looked back on them fondly.

Twitter has also been very good tonight and some exciting things might happen but shhh.neighbour cake observer

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The 23rd of October.

I am a social butterfly today! Well, more of a press butterfly.

After my morning drugs, we got home in time to have breakfast before Claire and the photographer from the Sutton Observer came. We took some photos in my room – have no idea what they look like so that’ll be a fun surprise! Then we sat at the dining table and I told her the entire saga from beginning to end. Because it’s my life, I forget just how complex and frankly, utterly shit it has been. Our reaction to my impending demise has been “Well, that’s pants. Right, let’s carry on.” and I think that shocks people a little bit, but really, what else can you do?

This afternoon, I just had time to have a coffee before Alison from the Birmingham Mail came, she met Oscar, and I related my tale once again. It turns out that she went to school with Christine! She was two years above her but recognised her. What a small world. Then after she left, Becky and Alison (different Alison) came over and Becky has asked me to be her maid of honour! Not that she’s getting married yet, but it really is a question of when and not if, and she had planned that I would be in that role. So we will do planning and dress shopping while I’m still here, so I’ll be there in spirit and fabric if not in person.

Tonight I have Derek who is a super good military nurse. Hooray!

Tomorrow is the last day that I have to get up at 5.10am. For now, anyway.

The 24th of October.

My last dose of antibiotics tonight for a while, anyway. Derek appears to be in hiding, but I am assuming that means he’s in the IV room. I hope so.

This morning we got home with time for me to make porridge and catch up with Homeland before going back out to meet Ang. I arrived before she did, so I got a latte and had a brief chat with Aaran until she appeared. She had brought me pastry-based desserts! But half past ten is too early for pudding, so we settled for coffee and chat. Then we both had Eggs Royale, which involved tiny muffins which are the best kind. We just had a nice time reminiscing about old times and updating on new times. Nostalgia is a side effect of dying.

Leisa did my lunchtime drugs and changed my dressing, then we got home about ten minutes before the photographer from the Mail arrived. He was a pleasant chap; we talked about our respective cats and how awkward hands are in photos. Oscar was completely freaked out by the camera flash.

After he’d gone, I finished an email to Alison from the Mail who had some more questions about how I feel about my death. Honestly, I am trying not to feel anything about it. If I sit and let myself really wallow in the fact I will probably not see my 24th birthday, I will never get married or even have been loved in a romantic sense by the time I shuffle off this mortal coil, I will just drown in misery and I can’t do that. I don’t think I’d have the strength to come back to the surface.

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The 21st of October.

After the total crap sandwich which was my day yesterday, today could only have been an improvement.

And it was, vastly so. Aaron (not Owen, as it turns out) was very skilled at getting blood for my colomycin level, but he has had handy experience in vascular where no one has any veins. Julie was prompt, as was Lucas for the second bleeding!

We drove home in the pouring rain, watching all the students going to nine o’clock lectures, trying to stay dry but it was futile. I did not envy them.

Lunchtime session went well, then we hung around to see the doctors because we needed to ask them how regular neomycin is going to be. It appears I’m going to be “disinfecting my bowel” once a week. Lovely. James was very apologetic – I think as he’s my consultant, he feels bad that he hadn’t really registered how bad my lungs were, and it was only when Dr. Thompson spoke at the meeting that they all realised that a transplant was just not feasible.

This afternoon Oscar complained about being wet and I drank coffee and harassed people about sharing my blog.

Tonight, things have been a bit slow to start, but they’ve got going now and Mel knows I need to be home by 8 tomorrow morning.

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The 22nd of October.

Busy! So busy. But I would rather be busy and tired than bored and full of energy.

We left hospital at eight this morning because I needed to be at Bad Apple at nine, and it’s a good thing we did! The traffic was so terrible – what should’ve taken us thirty minutes took an hour and a quarter! As soon as we arrived, I legged it to the bathroom because peeing was all I could think about for the entire journey.

So I sat down with James and Kayla and we discussed what we were doing, and now I have a silver-white bob with a very blunt fringe. Neither of then had seen what was happening, so I had to break the news again. It’s really difficult to say “I’m dying” without sounding incredibly melodramatic.

My mama picked me up and we went straight back to hospital, so I didn’t actually go home again until about three. This afternoon I sorted out my room a bit, despite having very little energy, and Becky came over. I gave her my old iPhone 4S because her phone’s screen’s cracked, but I refused to let her pay me. What would I do with her money? It hardly makes sense.

Oh I had some lovely post! A postcard from Valentino the puffy kitty, which is now sitting on my bookshelf, and an amazing fruit basket arrangement from Sue Mills! So we will definitely all get out 5 a day for a couple of days. Grapes everywhere.

Tonight we got to hospital a bit early so we were definitely here in time to watch the Bake Off final. Frances won, which was expected, and it was fine because she wasn’t Kimberley.

Now I am very sleepy.