Archives For Sara Pascoe

The 3rd of May.

I woke up at 5am. Like I’m not going to be sleep-deprived enough this weekend. I couldn’t even force myself to stay in bed as long as I normally can so I was up at half past seven.

Still, it meant things got done. Mommy made some bread, then we went into town where I got some lipstick from Selfridges and a box from Paperchase so I could send Esmée the fox to John and Maddie. We were home by half past eleven. Then Mommy went to vote (I already sent off my postal vote ages ago) and I watched Riverdale.

After lunch, I sorted out some clothes to take to Mach, then sat and watched more of Scandal. I’m nearing the end of season 5 so if I commit I think I will do this. I don’t think I’ve watched so much of anything so quickly before. I also put the luggage tags on the dogs, so all that’s left to do is pack in the morning! I’m so excited.

The 4th, 5th & 6th are pictured.

The 7th of May.

Oh boy, I am so tired. Beyond tired. I think I had about five hours of sleep and considering that’s on top of two short sleeps, I am wiped. We had to be out of the house by ten, so I got up as late as possible, but still spent most of the journey home with my eyes shut, cold from the air-conditioning and in agony from my back. When we got to the services, I had a second coffee and broke out the Pom Bears I bought yesterday which perked me up until we got home.

I curled up in my armchair as soon as we arrived, and we watched Professional Bake Off while having lunch. Then, while the rest of the country was basking in the sun, I went upstairs, shut my curtains and had a ninety minute nap. I am never tired enough to nap unless I am ill, so fingers crossed this is an anomaly.

I couldn’t stay up there all day, so I had an iced coffee to try to make sure I stay awake until bedtime. I’ve put up a bunch of photos and videos from the weekend. I don’t know how to write about it. Maybe just photos.

The 8th of May.

Sleep last night was so good. A solid ten and a half hours, oh it was beautiful. My bed is the best.

It’s been a quiet day – the start of a week of recovery. I have a couple of appointments and a gig on Friday, but the rest of my time is going to spent doing not a lot. I might go to the gym on Thursday, but that’s only if my early morning lung function tests haven’t worn me out.

So, I have been sat in front of Scandal, keeping my fingers busy crocheting nothing of note, resting my back. This evening I had a chiro appointment, and that was incredibly necessary – so much kneading of knots in my neck and stretching out my back as far as it would go. I’ve had the ice pack on my neck since I got home. Looking up for three days straight is really bad for one’s muscles. 

 

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.

 

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 7th of December.

FINALLY I can announce the secret exciting event I’ve been working on for months: I am hosting a comedy show at Union Chapel on 12th February next year to celebrate being alive ten years after my diagnosis with Nish, Suzi, Josh, Sara and hopefully we can rope in a couple more to round off the bill. It’s called Still Standing and you can get tickets here.

This morning, I got a blog post done, then made a call to Chapel to find out when the tickets would go on sale. I had to pay the deposit first, so I got them to send over the invoice so I could get the thing on sale!

Once I had paid, I had to just sit and wait for the link to appear online, so I did Christmas crochet while periodically checking the Union Chapel website/my email. It appeared about half three, so since then I have been generally all over the social media, promoting the shit out of it. I will continue to do so until I have sold all the tickets, and there are a lot!

I am beyond excited. I just really hope it’s a success!

The 8th of December.

I had forgotten it was supposed to snow, so the white blanket covering my garden this morning was a lovely surprise. I would have liked to have put on my knitted Christmas trousers to keep cosy, but I know the kittens would tear them to shreds and I can’t have that, so it was fleecy velvet leggings instead.

My main objective today has been to finish my Christmas shopping. I had only three more items to get, but it’s taken me all day to decide on them. Admittedly I did stop for lunch and to wash my hair, and that took a while because my lip balm rolled under the bed. I spent a good ten minutes swiping a hanger around to try to retrieve it, but to no avail. It’s a good thing I had three spares in my drawer.

I also took a shopping break to work on Mommy’s present because she and Daddy went to get a Christmas tree and logs for the fire, although she did walk in while I was squirrelling it away. Hopefully she didn’t see what it is.

Now I just have to decide on a wrapping theme!

The 29th of April.

Today has been so exhausting and so good.

I slept less well – super cold last night and no lung capacity to get more layers so I froze until I was too tired to care. This morning, I decided not to climb the stairs so as not to waste oxygen, so I just hung out in my bedroom until it was time for us to go out to see Tez Ilyas. He was great, as expected, i mean that’s going to be the case for every act I mention. I had to help him out at one point because the members of the audience he picked were not answering the question he asked correctly. Not paying enough attention!

He ran over slightly, so afterwards I literally just had time to grab a coffee before heading over to The Youth Wing to see Phil Wang. That was problematic, because the way I went meant I got stuck at a flight of stairs, but thankfully some very kind strangers offered to carry my chair down the steps (without me in it) and then I was back on my way. I got in and parked on the end of a row, and ended up with various members of sketch groups Pappy’s and Daphne to my right, with Tom Parry sprawled across the floor, snorting with laughter. For a work in progress, it was pretty slick, and I’ll be keeping a lookout for the finished product on tour.

I had Lolly Adefope straight after in The Canteen, so I left The Youth Wing the way I should have gone in, so I could get myself some more coffee before making my way back round to the other side of the school. On the way, I bumped into one of the women I hung out with last night, and she was going to Lolly too.

Coffee in hand, I drove down to The Canteen to join the queue. Being in the chair, I got moved to the front, which turned out to be a blessing and a curse. She was due to start at 4, but there were technical issues – there were cables that were needed and I watched people running back and forth trying to get hold of the right ones. This went on for just over an hour, and every time somebody came back, the hearts of the queue lifted, only to fall again when the doors didn’t open. I felt really bad for the guy who was checking the tickets – he knew nothing more than we did, and there wasn’t really anything he could do, I could hear people behind me getting (understandably) frustrated because this was going to impact upon their attendance of their next show, so they were having to decide who they wanted to see more. I was okay to wait, because my next show wasn’t until 7.15, and I was glad I did.

Her show is a reply to her reviews from her last show at the Fringe, in which she was criticised for not referring to her race enough and for talking about it too much. It would be like me doing a show and discussing or not discussing my disability. I have to applaud her too for her excellent singing, and for dealing with groups of people leaving towards the end of the show. Super impressed.

It ended just before six, and I was starving, having only had coffee since my crumpet at breakfast time. I got myself a smoky sausage in a bun (relatively easy to eat and no danger of spice) and ate it while watching all the fun dogs around. I even met a famous dog, Rosie, who is regularly heard on Rhod Gilbert’s Saturday morning show. She is a very good dog.

My next show, The Griefcast with Cariad Lloyd, was up stairs, but when checking the venues yesterday I’d been informed that there was a lift I could use. Today there was a worry because they had put an Out of Order sign on the door, but that was just to put able-bodied people off using it. Sneaky.

It was a small room and VERY HOT. Lots of people crammed in. The guests were Phil Wang, Kiri Pr’chard-McLean and Nish. Usually, the show is Cariad interviewing a comedian about a particular death, but today the topic was just death in general. In an amusing fashion. The last topic was “last words”, and Cariad asked them all what theirs would be. Phil missed a trick with his answer, and Cariad asked if there were any questions. I put my hand up and Nish pointed me out. I could have asked something poignant, but I had to say that surely, Phil’s last words should be “Wang out.” I saw the pun and had to say it. I don’t know if it’ll be on the podcast but I hope so. The only time I think my brain has worked that fast.

My next show wasn’t until 11.30 and also included Nish in the line up, so he met me back downstairs and the rest of the evening is a blur of faces and saying “Nice to meet you.” I did mean it each time, I just met a lot of people! We went to the bar in Y Plas where pretty much every comic at the show was.

Honestly I couldn’t tell you what we talked about, I just remember that for once, I wasn’t telling the story of my life ten thousand times, people just treated me like I as part of the gang and that pretty much never happens with people who don’t know me. It was just the most fun.

My oxygen ran out in the middle of Beat This, so I had to text Mommy and get her and Daddy to come and swap it over for a new one. I thought that might be enough to tide me over, but thinking about getting the taxi back on my own, having to deal with the chair, I just knew that it was going to be horrific. I cancelled the car, and sneaked out the side door. Knackered, but elated.

The 30th of April.

Going home early. It’s fine, we just don’t have enough oxygen for me to do another night.

We had to get into Mach earlier today, because there was a massive cycling race that started in the town and was going to close the road that we use to come in on. We got in at about eleven, and I sat in the car while Mommy and Daddy went to get coffee and some sort of breakfast pastries. I ate my co-op cinnamon swirl, then set off to Y Tabernacl for Pappy’s Flatshare Slamdown. Matthew and Ben said hi on their way in, and when the queue started to move, I went over to the lift to go up half a floor so I could enter the hall. There was a step down to the pews, so I just parked my chair at the best vantage point. Josh was a guest, and he saw me so he came over. Kiri was meant to be on the show but had yet to arrive, so other comedians were being texted en masse. Who turned up but ol’ Nishy Kumar? Kiri appeared shortly after, so we just got an extra person’s-worth of funny for free. I had a joyous time, particularly enjoying the quickfire round jingle that Tom and Ben recorded with Nish and Josie last night at Y Plas when Josie was full of Pinot Noir. I can’t wait to hear it when it goes out.

They ran over, as one has to expect, so then I had to bomb it down a rather steep hill to The Mach Arena for Josh and Friends. The wheelchair view in there was less good, but enough that I could just about see. We had stand-up from Josh, Matthew Crosby, Nish and James Acaster, then he read out some classic scrapes from his book which are all hysterical.

Upon coming out, I bumped into Amy, and we talked while Mommy and Daddy went to get food. I informed her of the racist attack Nish had just endured (Josh threw a massive ball at him but he was not injured), then they went to get lunch and we went to eat ours. We discussed oxygen levels, and we only had one full bottle left, so came to the conclusion that I only really had one more show left in me. Mommy and Daddy went back to the house to pack up, and I went to get more coffee and see who I could see before it was time for Sara Pascoe.

Happily, a lot of my lovely pals were still around, so there was Nish, Josh, Fin, Tom, a whole host of people. We whiled away the time together until everyone had to beetle off to our respective shows, and I left loving my wonderful gang.

Sara was fantastic as always, and I look forward to seeing the finished piece when she takes it on tour. I didn’t have time to hang around to see her afterwards because Daddy was coming to pick me up. We returned to the house, packed everything into the car, and we set off on the long drive home. I am so happy and I’ve had such an incredible weekend – definitely going again next year. Hopefully without any extra oxygen.

The 20th of December. 

I am home! Ohh so happy to be back where I belong. 

Last night I wore earplugs which helped me sleep a little longer this morning, although any remaining tiredness was very quickly shaken off when the woman next to me shat the bed. The stench. 

Different consultant but same junior doctor today, and I said I was pretty much losing the will to live waiting for this scan. I also explained that regardless of the outcome, I would be discharging myself today because I could not spend a fourth Christmas in hospital (and I did a small cry). The consultant was very sympathetic and instructed the junior to hassle ultrasound about getting me scanned asap, and having all my drugs and paperwork ready to go. 

A haematologist came to see me with the thought that I might have a fungal infection, and he wanted me to have another kind of scan, but the consultant above him felt that was not necessary, thank god. 

So then all we had to do was wait for ultrasound. A woman turned up shortly after two, and proceeded to scan me right there in my bed! Once again it was commented upon that I am lovely to scan, and having covered my right side in gel, she found no evidence of a clot. Obviously we informed the doctor of this immediately and by three we were out of the door. Just a tiny visit to Pandora on the way home to get the charm for yesterday’s anniversary, and now I am at home in our living room. I have petted the kitties and tonight I am out at The Glee for Joe’s Crisis at Christmas gig. 

I’m just SO HAPPY. 

The 21st of December. 

Sleeping in one’s own bed does not get old, let me tell you. 

I had lots of fun last night – Joe’s friend Ben who I met the other day was sat in front of me, with Jess Phillips (MP), and they were both amazed by my mug of sausages. I pointed out that they too could order one, they are always available. 

I went into the dressing room at the interval and at the end, and got to spread the Anthony Nolan word some more. We also had some chats about which was the best gay Christmas pun, and wondered whether Sara would make it. They were all lovely and really funny; will definitely make an effort to see them again. (On the bill we had Joe and Sara, Guz Khan, Fin Taylor, Andrew McBurney and Mo Amer.)

Today I finally finished my wrapping, watched Elf and decorated our tree. Daddy came home with Christine while I was mid-tree, so she helped me finish. My right arm is still huge and I’m coughing but I’m trying not to care. I’m okay and I’m home which is all that matters. 

Today is eight years since my liver transplant. Back then, nobody thought I’d even see Christmas, yet now I’ve had eight more. At what should be the best time of the year, my donor’s family went through the hardest thing I think there is: the loss of a child. But they were selfless enough to know that they could stop another family feeling that pain, and they gave us that. A Christmas miracle. 

 4

The 11th of June. 

It is Daddy’s birthday weekend, so we are having family bonding fun time. 

We have celebrated by going to the Cholmondeley Power and Speed Festival. We were leaving at eight, so I was the first one up, at six. I don’t know why I require two hours to be ready, I just do. The weather was supposed to be pretty grey all day, so I did not take my sunglasses. As soon as we arrived, I realised this had been a mistake. It was cloudy, but too bright for me, and I was struggling. Thankfully, Daddy had his clip-on sunglasses and they fitted on my specs too. Without them, I’m not sure what I would have done. Probably bought some sort of hideous hat with a large brim (not that hats with large brims are hideous, I look great in them, but this was not the sort of place where they would sell good hats). I was also grateful we’d brought the manual wheelchair, because although I do not love being pushed around, the motorised chair would not have coped with today’s terrain. There was a stand selling fancy off-roading chairs but they cost about £4000 and I am not in regular need so I don’t think that’ll be necessary. 

To be honest, there is not a great deal to say about what we saw. Lots of cars and motorbikes, some helicopters and a plane. Oh, and many retro ice cream vans. I had a pulled pork bun for lunch which was only a tiny bit spicy so my mouth could tolerate it, then we had some tiny fried funfair doughnuts and frankly I could have devoured the whole bag on my own. 

We left when we’d seem everything we wanted to, about half two, and on the way home it chucked it down, so I listened to Pillars by Josh Record and my sore eyes didn’t really matter anymore. 

The 12th of June. 

I came downstairs today with arms full of presents, and I interrupted Daddy’s viewing of the Grand Prix qualifying to give them to him. I bought him a Rubik’s Cross (like a cube but harder) which I suspect may never get scrambled, and a Vinyl Pop figure of Flash, the sloth from Zootropolis, who brought him much joy. 

My breakfast was very exciting because it was an enormous crumpet! I have wanted to try one for ages but we couldn’t find them in shops, and suddenly Tesco decided to stock them so I got to eat a crumpet as big as my face. Hooray!

I let the kittens have a run around while Christine and Mommy were very busy in the kitchen, ganache-ing Daddy’s cake and making delicious foods for us all. Grandma was collected from up the road to join us, and we were round the table by half past one for roasted venison, followed by our favourite, chocolate mousse. There was also rhubarb galette but I had no interest in that. 

Spent the afternoon watching the Queen’s celebrations, letting the food to down, while I crocheted a dumpling kitty (as it’s called in the pattern). We paused for birthday cake, chocolate and vanilla marble, then Daddy took Christine to the station so she could go home. 

This evening, I went to see Sara Pascoe at The Glee. I was sat on one of the side benches, along with all the other lone people. So cool. Obviously she was brilliant, even when a lady fainted in the middle of the first half. Lights went on, the line “Is there a doctor in the house?” was heard, and Sara told us some lovely stories about Lanzarote and did some impressions (once we we fairly sure the passed out woman was awake and okay).

I went to see her in the interval, any we talked about her book and the dramas of the first half (she was fine, awake and talking, paramedics in attendance), then she had to work out if she needed to cut stuff so I left her to do that. 

I’m still trying to compute the massacre in Orlando. Their laws won’t change, because the NRA is too powerful, and they love guns so much. Gay clubs are supposed to be a safe space, somewhere to escape the stares and prejudices of Straight White World, and that security has been shaken. But I am heartened by the queues of people wanting to give blood for the casualties. Most people are good.