Archives For Nish Kumar

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 31st of May.

My own bed is a beautiful place. I had such a nice sleep.

It has been a busy first day back in the real world! This morning we had to take Sam to the vet for his first set of vaccinations, then they were running so late that we only just had time to take him home before going back out to the chiro. Trine was not impressed to hear I’d been back in hospital for essentially the entire time since I saw her last. Today parts of my back that I didn’t even know were hurting needed working on. Such a mess.

We came home, had lunch, then I had to get information off Catalog to fill in a form about Sam because I didn’t have an ID sheet for him. His adopter was coming about half past two, so when I finished at two, I went to sit with Sam to say goodbye. He just wanted to sit on me, as always, and we watched the new Pretty Little Liars until the doorbell rang.

Well, they were instantly smitten. I was not surprised because he is lovely and there was no reason for them to not want him. He even stuck his tongue out, just to be extra cute. They were gone within the hour. I’m expecting a photo of him on one of their laps this evening.

Once they had left, I returned to the living room and watched new iZombie while doing Cats Protection admin. So exciting. Then this evening, Mommy and I (and my oxygen cylinder) are off to The REP to see some comedy to raise money for refugees. Nish, Joe and Tez are all on but I will not be hanging out because I am still a bit wrecked. Hoping they are all on in the first half because then I can go home.

The 1st of June. 

How is it June so soon? I have written off this year already. For the whole of it, I have been sick and swollen and in pain. I need the next seven months to be better.

Lots of little jobs to do today. Sorted out all the chargers and power packs to take on holiday, and put my iPod and old iPhone on to charge so I will have all the things to listen to in the car tomorrow. I spent my morning having a mini Agents of S.H.I.E.L.D marathon and putting all the posts I have written over the past three weeks up on my blog. Glad to finally be back up to date, although I need to write them all down in my hand written diary so they match. I still haven’t done the ones from March.

During our lunch, we watched the Bake Off Creme de la Creme final, and the military men won! We were very pleased as they were our favourites. Then we went upstairs to wash my hair and sort out my clothes that I’m taking away. It is not going to be particularly warm, so it will be a week of jeans and jumpers/cardigans.

Back downstairs, I painted my nails, but had to get Mommy to do my toes because I cannot see the outline of them clearly. I don’t understand why my eyes are getting worse again when the treatment seemed to be working. It’s not just that stuff is blurry, I’m really photosensitive and it hurts 90% of the time. At least my breathing is improving a bit – I’m only in 0.5 litres of oxygen now so I might be able to do most of the wedding without a tank at my feet.

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 27th of April.

It’s been a very peculiar sort of day. Started with respiratory clinic, where I had to talk to Dr. Thompson about the bronchoscopy. Curiously, from his perspective, it went quite well. I couldn’t have more sedation because I might have stopped breathing. Apparently when I got down there I was very uptight, anxious and in control. As soon as I had the sedation, all the emotion I’d been holding back came out and actually made everything worse. He also thinks it has been made worse in my brain because I have some sort of PTSD from NG tubes. So would you if you spent six months of your life having them shoved up your nose and down your throat, then vomiting them up along with chunks of your own dead stomach tissue several times a week. Basically, my brain has fucked me up for these sorts of things.

After this chat, we moved on to how I am now. He is not majorly concerned about my cough or CRP, we just need to keep an eye on it. He did send me for a chest x-ray to see if my right lung has inflated any more and it has, so that is pleasing.

 We left the hospital and had a quick trip into town so I could get another jumper, seeing as my fat arm isn’t going anywhere any time soon.

Got home about two, so we ate lunch, then packed up all the stuff we were taking to Mach. Daddy got home from his hearing aid appointment, had his lunch, and we finally left the house about four.

We drove straight here, so it took us only two and a half hours. The house is nice, the only downside is that it has no wifi. We also have the slight issue of the fact that Mommy forgot to put the breakfast foods in the car so she and Daddy have had to go shopping. She is poorly, it’s not her fault.

The 28th of April.

I slept surprisingly well, for not being in my own bed. It’s a novelty to sleep in a single bed that isn’t a hospital one. This morning was pretty quiet, just breakfast and writing about yesterday. I think that’s how this weekend will be done, considering I’ll be out at my normal writing time.

We went into Mach at lunchtime to a) buy me some toothpaste (forgot mine; had to use Mommy’s and it was so minty and painful), b) do some recon on gig venues and c) have some lunch. Well, the only toothpaste they had at the co-op was all minty, so I got one for children that is only mild. We checked out all the venues I’m going to and they should all be fine with the wheelchair. Then lunch! There are many cafés, and we went to one called The Quarry where I had some much needed coffee and some spinach, squash and sweet potato pie. It came with an enormous salad which I was incapable of finishing but didn’t want to waste, so we got a box to take it away in.

We then returned to the house for a little bit before Daddy took me back into town for my first show, Stuart Goldsmith, at 7. I went a bit early so I could get some food (a cookie), then I wanted some wine, but the bar did not seem accessible, so I had to ask a nearby stranger. She was very obliging and came back with a large Grig in a pint mug which I think I was supposed to give back. Oh well, it’s mine now. We had a nice time chatting while we waiting for our respective gigs – she and her friend were going to see Mat Ewins and Fin Taylor, so I wonder if they managed to enjoy both shows. Unfortunately, next to where we were waiting were several fire pits, and once they were lit, my breathing was fucked, and I had to put the oxygen on for the rest of the evening.

I really enjoyed Stuart’s show, very very funny. Could not recommend him more. My next show, Marcel Lucont, was at the school, where Nish had just been doing a show, so I went down there and met up with him and his girlfriend, Amy. Together, we went down to Y Plas because I had 40 minutes to kill and on the way we bumped into many of their friends, all the names of whom I have forgotten, They were all very lovely though. At quarter to nine, I needed to get going, so Nish and Amy walked with me back there, and we said goodbye until tomorrow when I’m seeing him (unintentionally) in two different shows. 

I was one of the last people in, so I was at the back with my oxygen. I didn’t enjoy it as much as the first show, but I think that’s partially because I felt like total garbage. He was good, I just wasn’t up to it.

Mommy and Daddy were seeing Ivo Graham at the same time, so we all went home together. Hope my oxygen levels return to normal tomorrow.

The 12th of November. 

So the adoption didn’t go ahead last night because the lady’s daughter (who was driving her) got stuck at work so they’re coming this evening. 

I ended up arriving at the mac before Nish, but I had a nice time with a kitty who was sitting outside courting attention. A very big pretty floofer. 

We met up and went to the theatre, but then had to shout down to someone to let us in. The tech guy materialised and opened the doors, then Nish ran through the music and lighting cues with him before we went to his dressing room. We had tea and talked (inevitably) about Trump, still unable to really comprehend it, then quickly moved onto lighter subjects like Joel going to the jungle, other reality TV shows, the shows of other comics, his mum’s appearance on It’s Not What You Know, The Outcast Comic, all sorts of junk. I love him, we have such a good time. 

Obviously the show was excellent, and even improved by an appearance from an audience member who called himself “The General” looked like an Asian version of Angelos. He started interjecting in a rather nonsensical manner and ended up closing the first half with an utterly dreadful freestyle rap which rendered us all helpless. Amazing. 

Today has not been as fun. Amy got adopted this morning, which was not easy – she had to be pushed into the carrier. I did chuck a lot of treats in to make it better. I think she’ll be fine – happy to get away from the kittens!

I then had the rest of the day to myself, as Mommy and Daddy got invited by Uncle Peter (who is not technically my uncle) to go and see Kiss Me Kate by the WNO so they’ve been there since lunchtime. I have filled my time crocheting my Christmas scarf, watching Rise of the Guardians and eating chocolate buttons. I also went to give all the kittens a good stroke and a fuss to make sure they were okay, but they don’t seem to have noticed Amy’s gone. Which is good, to be honest. 

Now just waiting for Ava and Amira’s adopter to arrive. I hope someone in the family has an email address. 

The 13th of November. 

Today certainly ended unexpectedly. I sat with Archie this morning because he was making lots of sad noises after his sisters were adopted. We took the cage down, he has been having lots of fun (in between the sad mews) rampaging around the room. 

My back has been terrible since Friday night – I think the seats at the mac are to blame – so I spent my afternoon in a comfortable chair, crocheting things which I then unravelled. I eventually started working on some Christmas baubles, when my phone rang. It was the adopter from last night, and she told me I had to have Ava back because she’d gone mental and taken a chunk out of her finger. I was very taken aback by this, and said I’d have to speak to one of my colleagues and get back to her. I rang Shaki, and we decided she’d come to my house and we’d go and assess the situation together. 

When we arrived, we ascertained what had happened, and made the decision that we would refund their money and take both of the kittens back. (Obviously a lot more than this happened but I can’t put it on here. Sorry, I wish I could share!)

Now I have three kittens again, Archie is thrilled to have his pals back, and everything is fine.