Archives For Still Standing

The 22nd of February.

Today has been most boring and not particularly fruitful. Plus I am in quite a serious amount of pain. Not only have I been sitting badly at the computer all day so my back is dreadful, but I accidentally stabbed myself in the thigh with my crochet scissors which are incredibly sharp. I felt them go in and immediately screamed FUCK, then ran into my bedroom, grabbed a dressing from my drawer and stuck it on, putting as much pressure on it as possible. It hasn’t bled too much, but it’s pretty fucking sore.

So yes, at the computer. I hate to admit it but I keep being ready to clear things, then I find another job that needs doing first. That was backing up videos I’ve got of gigs that I’m not certain have been saved elsewhere and that has taken hours. I have finished season 4 of The Blacklist, and have deleted up to 2016. 2018 is the big beast – it’s where all the reborn photos live so that’s over 40,000 photos and I am not looking forward to it.

I got the money from Union Chapel! And our grand total is just over £14k! Amazing.

The 23rd of February.

Today has been half boring and half joyous. First half boring, because I was sat at the computer again. I can pretty much guarantee that is how I’ll spend my weekend too. Deleting, deleting. So tedious. I’ve got to halfway through 2017 now. Very close to the stupidly large 2018 folder that is a huge mess. Then I have to sort out what photos actually belong in this year. Ugh.

Came back downstairs for lunch, then Daddy and I went to see Black Panther! I couldn’t book the tickets beforehand because Vue have altered their system so you can’t get a carer ticket online for Gold Class. I don’t think it’s on purpose, because we could get them fine in the cinema – the website just needs fixing.

It is SO GOOD. Not just the acting, the story, the characters, but the set is fantastic, it is lit beautifully, the sound is used exquisitely, even taken away when the moment is right. It has all been thought through so carefully. I can’t imagine how it must feel for black people everywhere to see themselves and their culture represented so wonderfully. Maybe if I saw disabled actors playing characters unrelated to their impairment. Anyway. Wakanda forever.

 

The 12th of February.

Where to begin? I have been reluctant to start this because I feel like it might dilute the memory or I’ll forget stuff.

The journey down was nice and straightforward. The chap was even there with the ramp when we arrived at Euston! We got a taxi to Jen’s in Highgate, where I was going to try on fun clothes in order to find an outfit for the show. I was shown into a little room, one wall full of clothes, one full of shoes, plus a rack of dresses, the floor covered in more shoes and bags and jewellery behind me. First I picked some favourites to try one, because I had to be selective. I looked at four or five in the end, but eventually decided that the first one I’d worn was the best. A navy blue midi dress from Libelula covered in sequins with pink piping, plus some Nadia Vodianova shoes and massive clip on earrings and a two-finger ring. I left with a promise to leave it at the hotel reception in the morning.

We had lunch at the nearby Cafe Rouge (saw so many good dogs), then another taxi to the hotel. When checking in, we each were given a fresh warm cookie, which I ate on my bed very messily. Unpacked, then collected what we needed for the show. Next stop, Union Chapel!

When we arrived, we rang a buzzer and were met by Bea, who works the evening shows. She showed us the backstage/dressing rooms, the facilities, and of course the chapel itself. They had built me a massive ramp to get onto the stage, and I met the sound guys so handed over my old iPhone, plus the cable and power pack.

There was no point going back to the hotel, so I sent Mommy and Daddy to get coffee, then it wasn’t long before the Anthony Nolan team and Christine arrived (separately). I finally met Lucy, then she and her colleagues set up all their tables and banners, and I got changed into my spangly dress. I had a practise run up the ramp, then got talking to lot of Anthony Nolan volunteers, remembering some from previous events. Then the doors opened and it was time to meet my public! For a while, I just watched strangers coming in which was brilliant because they weren’t obliged to come, they were just supporting the cause. Then I started seeing people I knew, like Emmer, Charlie, Denise, Amy, Joy, Lauren and Hannah. Mark and Shereen came over and I gave him a huge hug. I’m so glad he could come. Acaster arrived, then Suzi and Flick, and I went backstage with them. Soon Nish appeared, and before long, it was time to start the show! First up, aside from our lovely host, we had James, during whom Sara arrived, and then Felicity. Nish then introduced me, and I drove up (nearly off) the ramp onto the stage, giving a royal wave. The cheer was immense, and I had to tell them to stop because I was going to cry. I said most of what I’d planned, plus I gave Mark a shout out because he deserves to know what a hero he is. In hindsight, there are things I wish I’d said, but no matter. Everyone said I did really well, and I was happy.

In the interval, I gave Josh the bear for his baby, and met the Anthony Nolan patients who’d come backstage and lots of photos were taken. Josh opened the second half, followed by Suzi and Sara. Everyone was brilliant, it went better than I could have hoped. I said goodbye to the people who had waited at the end, and Nish, Sara and Suzi.

So many hugs. And it was all over. I put my socks and boots back on, and we made our way back to the hotel. Pyjamas, Graham Norton, wind down, bed.

The 13th of February.

I didn’t fall asleep until about three, and woke up at seven. Made myself a cup of tea, and got everything packed back up. I left the garment bag for Jen at reception, then we had coffee next door at Saint Espresso. Breakfast was required, and as it was pancake day, we went to The Diner nearby. We went past The Breakfast Club and its huge queue, but found The Diner nice and quiet, where I had buttermilk pancakes with bacon, maple syrup and whipped honey butter. So good, but I couldn’t finish them.

A last cab back to Euston, where I got another coffee, and we trundled home. This afternoon, I have put all my warm clothes on, curled up in my armchair. So happy.

 

The 10th of February.

Woke up at 6. Let’s be honest, I’m probably not going to have a good sleep until maybe Tuesday night at the earliest? My mind might not be feeling nervous but my body obviously is. I know this because this morning we were talking about nothing in particular yet I nearly burst into tears. Clearly I am not as relaxed as I think I am.

Progress on the photo library bollocks is minimal. It has taken almost the entire day for it to repair, then I tried to be clever to sort them more efficiently but that backfired, so I’ve left it doing something the very slow and tedious way. Be back to it tomorrow.

I have, however, planned what I’m going to say. I’ve decided to keep it short, because nobody wants to hear me wang on for ages and get emotional. After that, I crocheted the monster scarf and watched The Blacklist. Now rugby, dinner, bed.

The 11th of February.

We have sold out.

I couldn’t belive my eyes when I saw the email this morning. I would have screamed, but I was in the bathroom and didn’t want to cause concern. I settled for not being able to stop smiling for a good hour. Unbelievable.

It’s been rather a calm day, to contrast the hectic stress-fest that will be tomorrow. I finally set the computer to do its photo exporting task and have been checking it periodically. I think it will be done by bedtime.

I tried on a dress I’m taking with me in case the thing with Jen falls through, just to check it still fitted, and got out everything I can pack before the morning. Got a list for before we go out. Convinced I will forget something crucial.

I finished the giant chunky scarf, and it will certainly keep me warm when I require it. It’s really heavy! Then I watched some more of The Blacklist, just trying not to think about everything. I don’t think I’ll sleep much tonight. 

Today is World Cancer Day. This time ten years ago, I was feeling pretty pleased with myself. I’d been diagnosed with leukaemia the summer before, and had made it through three rounds of chemotherapy and a stem cell transplant relatively easily. I had very few of the horrific side effects, and thought I’d got away with it. I didn’t know that in fact, my cancer story was just beginning.

I’ve told my tale enough times for it to seem superfluous now. Leukaemia, stem cell transplant, relapse, stem cell transplant, graft vs. host disease, liver failure, liver and accidental stem cell transplant, photopheresis, biliary reconstruction, sepsis, pulmonary embolism, collapsed lung, pneumonia. And that’s just the bare bones of it.

Anthony Nolan found my second stem cell donor. Without them and him, my transplant would not have gone the same way, my body would not have reacted in the same way, and my liver and third stem cell transplants would not have happened. I would almost certainly not be here. Not only did they find me a donor, but they have been a continued source of support after my transplants.

In 2016, their Patient Services Team offered me the opportunity to become a Young Ambassador for them, a role in which I am able to use my experience to benefit other people who will receive transplants in the future. My goal is for nobody receiving a stem cell transplant to have to go through what I have, because although I am still here, it has by no means been easy. I have survived, but at times it has felt like that is all, and to really live is something just out of reach. We all deserve the chance to live.

I am not ashamed to say that sometimes it is very difficult. It is no secret that people with chronic illnesses can struggle with depression, and prior to working with Anthony Nolan, I was beginning to feel like despite doing my best to raise awareness, I was not having much impact, and I could not see a purpose for the life I had. I did not feel the world would notice if I stopped. But now I do. Maybe not the entire world, I am not quite so egotistical to think that, but since I started working with Anthony Nolan, I feel like I have been able to make more of a difference, most of all when I have been with them to parliament to speak to people who can really force change for the way stem cell transplant patients are treated in this country. So not only did Anthony Nolan give me a chance at life, but they gave me a reason to live.

A lot has changed in the past decade. When this all started, I was a teenager, completely self-involved yet oblivious to the fact that I was harbouring a fatal disease. Now, I’m still self-involved, but more out of necessity than narcissism, and only too aware of every horror occurring in the wider world. I would say that is partly down to the technological leaps made in the last ten years (for example, I had a flip phone back then), but also due to my personal growth. I’d say it’s almost impossible to confront your own mortality and not be changed by it.

Most immediately, I learned to appreciate my family. Nothing says I love you like a mother who will get up to turn you over in the night when you’ve lost all your muscle mass, a sister who will donate her own stem cells to try to save your life, and a father who continues to work to support a household alone and spend every minute he can with you too.

I’ve also learned a lot about grief. When you become a cancer patient, you become intimately acquainted with it. I have been to more funerals of friends than I can count, and that is something usually said by people sixty years my senior. It doesn’t get easier. It never hurts any less. Even when you know it is coming, you can try to prepare yourself, but you are never ready. Last year I lost a friend I truly loved and the world is a darker place without him, but I am trying to use each day to make him proud and I am so grateful to have known him, even though grief is the price I pay for the privilege.

And I am have grieved for myself. This is not the life I planned, expected, or hoped for. I have lost people I never got to know – the partner I might have loved, the children we could have had. It was a choice I had to make: lose them, or be lost. I wasn’t ready to leave, so I chose the sacrifice.

For all of it, I think I am lucky. I am loved and have people to love; I have enough bodily function to get by, and to enjoy the things in life I like; I know what is important, and who will be with me until the end of the line. For the most part, I am comfortable, and I am happy. It is not our circumstances that make us what we are, but our choices. I choose to celebrate the life that I have, rather than mourn for what I do not. In a week’s time, I am hosting a night of comedy called Still Standing at Union Chapel with my incredible friends Nish Kumar, Suzi Ruffell, Josh Widdicombe and Sara Pascoe in order to raise money for Anthony Nolan and remember how wonderful life can be. Tickets are available from the Union Chapel website here.

 

The 9th of January.

Well it’s been a curious day. I had to get up at quarter past five to ensure I had time to drink a litre of water before 6am, from which I had to be nil by mouth.

We arrived at about quarter to seven, and had to wait outside the Short Stay Wellcome Unit until someone let us and the two nurses without working passes in. Then we sat in the waiting room and watched Good Morning Britain until someone came to take me to my bedspace.

I was in the corner of the room – it used to be the ICU when it was the main hospital, so the bedspaces are massive and it means I am not crammed next to loads of people. I have been here before but we can’t remember what on earth for.

Mr. Titley came to see me, and he ran through once again what was going to happen. Examination under anaesthetic, possibly biopsy, possibly smear, possibly photographs. In the end, none of those things happened, just the exam. I signed the consent form, and off he went. Then I met with the anaesthetist, Dr. Allan, who was very nice, as all anaesthetists are. We talked about why he didn’t want to knock me out – same as Dr. Thompson, in that I’d end up stuck in ICU and if they ever did wake me up, my lungs would be in worse shape than they were going in which we can’t have. He had to talk me through all the risks of epidurals and regional blocks etc, which I was happy to take, then he went away and I finished being admitted by the nurse.

Miss Byrom wasn’t expected to arrive until about ten, so I didn’t get changed until twenty to, and I’d not been ready long when a porter came to get me so my timing was impeccable. I started off in the little anaesthetic room, where the trainee anaesthetist got stuck up against a valve in my wrist, so Dr. Allan had to stick the cannula in halfway up my forearm. I needed it so they could give me a bit of antibiotics and fluid so there was a balance against the spinal injection when he did it. When it came to that time, I had to sit with my legs over the edge of the bed, and hunch over my pillow on my lap. I got sprayed with super cold cleaning spray all over my back, then there was a small amount of local which felt the same as always, and then he did the regional block injection which I didn’t feel at all. All I noticed was a spreading feeling of warmth from my bum downwards, which was sort of nice but also disarming. I could move my legs to get them back on the bed, then I had to wait for them to get heavy before we could do anything more. I didn’t expect the sensation to be so acute – despite my brain knowing that I have the muscle strength to move my legs, I physically could not lift them, not even using my arms. It is absolutely bizarre.

At that point, we could move through to theatre, where my legs were put in the stirrups, and nine strangers got to see my vagina. That was interesting, because I could see them being flopped about into different positions, but I had no feeling at all; it was like they were broken, like they belonged to someone else. Then my vagina got sprayed with the cold spray to test if I could feel anything, which I could not, so they were able to begin. As far as I could tell, Miss Byrom tore through the adhesions again, then there was just a lot of shoving – I was aware of pressure, but no pain. It is entirely scarred, so no biopsy would tell us anything, and Mr. Titley cannot do any surgery to help. It took them about 20 minutes of shoving and looking to decide this, then some packing and a catheter were put in, and they started discussing what might be done next. It sounds like I’m going to end up with some kind of custom made silicone dilator but we will have to see. Emails must be sent.

Once covered up, I was taken to recovery, where I got a hot blanket which was so beautifully toasty, and we waited for my theatre notes so I could come back to the ward. And here I have sat since twelve, waiting for the anaesthetic to wear off and the catheter to come out. I have had coffee and a panini, and can move my legs independently again, which is nice. It still feels like I am sitting on a cushion of jelly, five hours later, but the catheter is out and I’m hoping to be able to pee in the next half an hour so I can then go home.

For all the NHS crisis talk, you wouldn’t know it here. I have been taken care of wonderfully, they are showing no signs of stress and I haven’t got angry at anyone.

The 10th of January.

I was woken up by Mommy telling me she had to go to Grandma’s because she was being taken into hospital. The cough she seemed to be incubating has definitely matured into a nasty chest infection and as the day has gone on, she has had tests and been admitted to have IV steroids and antibiotics while being on 5 litres of oxygen. That’s more than I was using even when my lung collapsed so she is really quite unwell. Apparently the doctor was not exactly optimistic.

My day has been a pretty quiet one, as one would expect the day after surgery. I was supposed to be going to a clinic at St. Giles but I cancelled that – I’m not sure how productive it would have been, and we’ve agreed I’ll reschedule once I’ve had my fancy MRI.

I had a couple of other phone calls; one with Adam from Black Sheep about my hair colour, one with the eye department at the QE to sort out an appointment, one with Lucy from Anthony Nolan to discuss press for Still Standing, and one with a lady who is going to come and view the kittens on Friday.

Speaking of them, I watched some more of Big Little Lies with them asleep in my arms. I’m almost reluctant to allow their adoption!

The 1st of January.

Happy New Year!

I am very warm and very sleepy. Staying up until half past one and only getting eight hours of sleep is not good for me. I know, eight hours, woe is me. I have had a small coffee so that should keep me going until bedtime.

It’s been a very sedate New Year’s Day. This morning I wrote my last blog post of 2017; will have to retire that diary to the collection in my bedroom. I’m annoyed that Moleskine have stopped doing The Little Prince stuff but this will do. I also finished the shawl! Finally. I will not be using that wool again – it’s so full of static. Then I went to give the kittens some individual cuddletime, especially Amber as she didn’t get any yesterday.

Grandma came for lunch, and we had duck and goose, not that I could tell the difference between the two. Both tasty though. And leftover puddings for pudding, because we were building up a larder.

This afternoon has been film-watching and trying not to overheat. I had some good news this morning – enough tickets to Still Standing have sold to pay the venue! Now, as long as the insurance is paid off, all extra sales go to Anthony Nolan. Got to have a chat with them about some press.

The 2nd of January.

My ribcage hurts where I had the chest drain, has done all day. I don’t know why – my breathing is no worse than normal, and I haven’t made any weird movements. I’m at the chiro tomorrow, so maybe Trine will be able to help.

Said goodbye to Christine this morning because Daddy was driving her back to Twickenham, then Mommy and I spent until lunchtime inventorying my wool. Went through both boxes and worked out what belongs together, by brand, colour, weight etc. It took ages! But now I know what I have and I can decide what to use for projects I’ve already got in mind.

This afternoon, I started reading Gnomon, and sat with the kittens so they could roam around while I watched the first two episodes of How to Get Away with Murder season three. I know I’m very behind but it’s only just come on Netflix. Amber and I are becoming quite good friends now. Ava not so much, she still runs away a lot. Will have to bribe her with treats.

The 19th of December.

Oh lord I am so tired. I got home about half eleven last night (the gig was much fun), and it took me hours to fall asleep, then I woke up several times so the sleep I did have was not of good quality. I am going to have Zopiclone tonight. Stupid lack of sleep.

So I have been really sleepy all day. I did a blog post this morning, and rummaged through my back up hard drives to find the original photos that were taken during my first stem cell transplant. Ten years ago today, I had my first cells from Christine. All the versions of the photos on my phone were rubbish quality, and I knew there had to be a better one somewhere.

Once I’d found it, I spent a lot of my afternoon trying to compose a tweet to send out to promote Still Standing. It took a stupidly long time for something so insignificant. I’ll probably do the same again on Thursday. Maybe I’ll be better at it then because my brain won’t be mush from not sleeping.

I can’t wait to go to bed.

The 20th of December.

Zopiclone worked. Nice big sleep, thankfully. I could not have coped with the wrapping pain if I was exhausted.

This morning I brought all the presents downstairs and wrote all my Christmas cards. Tidied up the living room table so we can fit food on there. Not much else for me to do until after lunch, really!

Mommy went out to Grandma’s then to pick up Christine from the station. I took everything into the dining room, made myself a peppermint chocolate drinking fudge, put The Polar Express on and it was wrapping time! I thought it would be best if I wrapped everything in the paper first, then did the ribbon on them all after, otherwise I might not have been done by the time Mommy and Christine got back. My paper was stupid and didn’t want to stick together, so I was glad I’d bought string as well as ribbon. Maybe next year I will not do glitter paper.

When The Polar Express finished, I watched a funny little film on Netflix called Pottersville. It was quite amusing, kept me entertained while I covered everything in glitter.

Now I am finished and my back is excruciating but I am done. It was worth it.