Archives For cancer

The 1st of May.

It’s our last day with Little Pidge! Shaki rang this morning to discuss arrangements for her, because she’s off to Exeter tomorrow. Shaki will be here about quarter past eight in the morning, so I’ll say my goodbyes tonight. I’ve written up some bullet points about her but it’s very basic. She’s a good kitty, I’m sure once her wound clears up she’ll be homed really quickly because she is lovely.

This morning, I wrote up a blog post, we cleaned Little Pidge’s wound, then I wrote the little bios of the dogs I’m taking to Mach on luggage tags. I also managed to help out a girl who’s going and was looking for tickets for some shows, two of which I could assist with. We’re going to go to a couple of shows together, so I’ve done a good deed and made a new pal!

After lunch, we popped to Tesco to get some instant coffee for Wales. Last year I had none and was sleepy until I got into the town every day. I bought mochas because they’ll be slightly less awful than the lattes. It’s a last resort.

Then, I sat with the cat and we watched Scandal some more. Tomorrow I won’t have my companion!

The 2nd of May.

My back is dreadful this evening and that does not bode well for this weekend. Two very long journeys (well, three-ish hours) are bad, just sitting in the car. Today all I’ve done is sit in the living room. I think I’m just going to have to drink enough to not notice the pain.

The weather has been horrific for most of the day, and I had a book being delivered (new Joona Linna eeeeee), so I decided not to go to the gym. Instead, I put together the present I’ve made for Esmée, then tried to come up with a way to occupy myself for the rest of the day.

We’d just started to eat lunch when I looked at my phone, and found out that John Underwood died two weeks ago. I am stunned. I have known him for a few years, since before his transplant, and we talked a lot about GvHD and how it is to live in hospital. He’d had his ups and downs, but he had seemed to be improving. It was slow, but he was taking steps, both literally and figuratively. I don’t suppose I will ever know what happened and that is difficult. I suppose I’m just in shock. I did not see this coming.

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 4th of September. 

Keeping busy. I had a reasonable sleep, thank god, and today I’ve just been trying to keep my mind concentrating on different things. 

This morning, I wrote up a blog post, and rang up Lydon’s to book the kittens in for their first vaccs. Mommy stood on Harvey’s foot last night and was worried that she’d hurt him, but he was running around and putting weight on it soon after, so I wasn’t massively concerned. And of course, I’ve started up another doily. 

After lunch, it was time to go to the vet. We weren’t going to try to take Henrietta, seeing as I can’t touch her and Mommy is only vaguely tolerated. Packed the two kittens into a carrier and off we went. They were more stressed by the experience than I expected, not even wanting treats when they were on the table. They both are pretty much heavy enough to be neutered, but their balls are too small so we’ll leave that a while. Got some decongestant powder for Henrietta and tablets for the kittens so that’ll be joyous to try to administer. 

Since we got back, I’ve booked a trip to London. An installation has been put up in Paternoster Square of the names of blood cancer patients to make blood cancer visible as part of blood cancer awareness month. It’s only on until the 30th so I’ve had to book a special trip!

The 5th of September. 

I got a message from Adam this morning, telling me to put Victoria Derbyshire on. I assumed there was just going to be a piece about Dean, as I knew she had spoken to him via Twitter. I was beautifully surprised to see Adam, Drew (Dean’s brother) and Josh (Dean’s friend and the co-founder of HISKIND) sitting on the sofa, ready to tell the viewing population about him. And they were so brilliant. Adam spoke so movingly, and was able to not fall apart. And people sent in really lovely comments about him – even in a short segment, it was obvious what an incredible guy he was. He will be loved forever. 

This afternoon, I’ve been crocheting and catching up on Nashville. Also we tried giving the kittens the worming tablets which didn’t really work, so we smushed them up and put them in their food, and put the decongestant powder in Henrietta’s, which she gobbled up. Hopefully she’ll start breathing a bit more quietly. Bless her. 

Haematology clinic in the morning. Good. I need more eye drops. My left eye has been bad for a week, and doing the dexamethasone drops twice a day isn’t enough. Back up to three, need more drops. 

The 2nd & 3rd; Dean is gone.

September 4, 2017 — 3 Comments

The 2nd of September. 

Tired. Got in last night about ten and I’m not sure what time I fell asleep but a long day in the wheelchair equals tired body. Back hurts a lot. 

This morning, I wrote about yesterday, which took pretty much up until lunchtime. I should have then put it into a blog post but I had not the impetus to do so. That can wait until tomorrow. 

Lunch was disappointing because M&S didn’t have any pretzels or cinnamon swirls, boo. Then I went upstairs to lie down, give my back a rest. At least my eyes have been less terrible today. No make up has helped. 

Then, back to crochet – some more wool got delivered yesterday and hidden in the porch (I ran out of purple, annoyingly) so the rest of my afternoon has seen me catching up with Bones and Celebrity Masterchef while working on the doily. I’m on the penultimate round now, and I really fucking hate Lesley Garrett. She is one of the most irritating people in the world, I think. 

I am yawny. New X Factor tonight, then bed. 

The 3rd of September. 

Dean is gone  

No, not gone. Cicero said the life of the dead is placed in the memory of the living, and those of us that knew him will never forget. He had such an open heart and a brilliant mind, and I feel so lucky that he took me up on my offer of cancer chat. 

Adam broke the news late this morning, and since then I have felt somewhat numb. I can’t talk about it, not out loud. I don’t want to be hugged. Then everything will spill out. Tears have come and gone, on my own. 

I just don’t know what to say. I feel like I have been punched in the throat. Since I heard, I have buried my head in crochet, and have finished the doily. It’s enormous. Where it will end up living, I don’t know. I was going to give it to Grandma but I’m not sure there’s space for it in her room. 

At least there is some comfort to be taken in knowing that his agony is over. I wish it hadn’t been this way, that his death wasn’t the reason so many people are talking about him today. He deserved more. 

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The 15th of August. 

Quiet day in the Cartwright household – I’m on my own because Mommy and Daddy took Grandma up north to see Aunty Audrey, so it’s been a day of carbs, crochet and crime drama. Well, only a little bit of crime drama but I enjoyed the alliteration. 

This morning I did a blog post and watched the last three episodes of Glow. I finished off the little teddy, but because the wool is mainly pink, it looks more like a pig than a bear. 

I sorted myself out some lunch, and had got engrossed in trying to de-pig the bear when the doorbell rang. I had a chap coming to view Betty and had completely lost track of time. I let him in and took him to see her – very much your average viewing, as she is an excellent kitty and showed herself off to the best of her ability. They’ve had a cat for twenty years so I know they can look after one. Just got to confirm, but I’m pretty sure we’ve found Betty a home!

Since then, I have been trying to write a blog post for tomorrow. It will be ten years to the day since I was diagnosed with leukaemia, since this all started. What a decade it has been. 

The 16th of August. 

Happy 10 year anniversary to me!

It has been a lovely day. I had a good sleep, woke up at an acceptable time, and had my breakfast and coffee while I put together a blog post about the day. I put my new charm on my Pandora bracelet, which I think we can now say is full. Convenient – ten years is a nice round time to stop. 

I wanted to make cinnamon buns, so when Mommy got back from Grandma’s, I printed out a recipe I’d found to make them in 45 minutes and we gave it a go! To be fair, Mommy did most of the work, and I did the easy bits, like sprinkling the cinnamon sugar all over the dough. When they came out of the oven, I poured the icing over the top, and let them cool while we ate our lunch. We tore them apart for pudding and have to say, they have been a success!

This afternoon, I went to Black Sheep to get my hair dyed. I had taken inspiration from Love Symbol #2, the colour Pantone released to honour Prince, and mixed it with a dark teal. I have unintentionally matched my glasses and sunglasses. No bleach today, so it didn’t take very long, so there was time to come home and get changed before going out for dinner. 

We went to Water’s at Resorts World, because we’ve known Andy for a long time and know he doesn’t do weird food. I ordered a peach and passionfruit bellini, and set about perusing the menu. I decided to go for a saffron risotto with chorizo and deep-fried squid to start, and a marinated duck breast with spring onions, creamed potato and pak choi to follow. While we waited, we were given tiny tomato soups as an amuse bouche which was delicious. I love bonus food. My risotto was really good, although quite filling, so I had to leave more than I would have liked because I had more food to fit in. I was very glad I did, because my duck was excellent, soft and pink, and I’d been worried that it might have been spicy but I had no trouble. At this point, I had to stop – there was no more room in my belly. I think if we go back I’ll skip the starter and have a dessert instead because Mommy and Daddy were both delighted with theirs. 

I’m very tired and very full and very grateful to be alive.

Here’s to ten more.

August 16, 2017 — 3 Comments

“We found leukaemia cells.”

I was woefully unprepared for those words. It was 2007; I had a Samsung flip phone and no hopes of Googling “causes of anaemia” while I waited for bags of other people’s blood to drip through and tried to ignore the snores of the father of another patient. There hadn’t been much chance to chat with my family about what I might have, as I’d been admitted the evening before, given all the blood, had a bone marrow trephine and lumbar puncture the next morning, then spent the rest of the day sleeping off the general anaesthetic. When the doctor came to speak to me and my parents and took us to the nurses’ staff room to talk, I didn’t yet know that being taken somewhere private is code for bad news, so I went into that room with no sense of trepidation whatsoever. I came out with my life as I knew it completely changed. 

I’ve told the story of the next few years so many times, I’m not going to now. It’s here, if you need the background. 

Whenever I meet someone and inevitably have to tell them about my life, they almost always ask “Are you alright now? Are you better?” and I don’t know what to tell them. I tend to say “Well, I don’t have cancer anymore” because that’s the only answer that’s true. What is alright, or better? If we’re comparing my body before cancer to now, I used to be of a healthy weight but not mind, smoked, drank a lot, took drugs and was not a great person. Sure, I could walk around and do as I pleased, but I was a deeply unhappy sixteen year old and I’m not entirely sure I like the path I was headed down. One good thing getting diagnosed with cancer did was put a pause on my life; all my bad habits had to stop, I had to talk to my family, and become friends with my older sister, who became somewhat vital in the saving of my life. The vague ambitions I had for my future had to be put on hold while I considered what I was really equipped for, whether I was healthy or not. All my friends did their A-levels, went to university, moved out of our city to jobs and lives elsewhere. I still see some, but we are different people now and our lives don’t fit together the same way. The world is very different now too. When this all started, I couldn’t live-tweet my A&E trip because that concept didn’t exist – the only way I accessed the internet during my inpatient chemotherapy was through a dongle attached to my mum’s work laptop. Facebook still said “Kathryn Cartwright is…” for a status update. I wasn’t able to join the worldwide community that you now find if you start blogging about being ill. I didn’t know how much you could worry when a cancer friend you only know from Twitter goes quiet for more than a few days. I didn’t know I could care so much about how this country is run, that I would be the person worrying at night about how I might survive if things carry on the way they are, that it could be so scary to be really vulnerable. It is terrifying to become disabled overnight, when I used to feel so invincible. 

But now I feel invincible in another way. I was given terrible odds, even to begin with – 20%, at the start. When I relapsed, they dropped to about 4%. When my liver failed, I had days to live by the time I got to transplant. What happened after that, I logically should not have survived. Nobody else has. I’ve had a pulmonary embolism, a collapsed lung, pneumonia, sepsis, a very persistent superbug called klebsiella, my bile ducts had to be reconstructed, I was told in 2013 that I needed another liver transplant but my lungs wouldn’t support me off the ventilator, so every infection since is my potential killer. People keep telling me I’m going to die and I still haven’t. People also keep telling me that I should bottle what I’m made of, because it’s strong stuff. And that I’m lucky. I think lucky is a relative term. I am lucky in that I have survived, but I am unlucky compared to some of my fellow patients who are living completely “normal” lives now, with no ill health to speak of. We are all better and worse off than people we could measure ourselves against. I choose not to really think about luck. Neither luck, nor cancer, nor any of the other things that keep getting thrown at me have made me the person that I am today, ten years later. 

And what a decade it has been. I like this person. I have a great relationship with my family now, I love my friends, I actually give a damn about people other than myself and am doing things to make a difference. I love being able to work with Anthony Nolan, helping them by telling my story to people who matter and raising awareness about the work they do. I have a better understanding with my body, working with it, not against it, the way I have in the past. I am empowered by the things I can do, not discouraged by what I can’t. I try to use my experiences to inform other people who are going through them for the first time, navigating a system that can be tricky and unhelpful. I always wanted everyone to know my name but I never really knew what for. Now I think it’ll be fewer people, but I hope they’ll remember me for a more important reason. And I’m not done yet. I have books to read, things to make, shows to see, people to meet, words to say, wrongs to right. The last ten years have by no means been fun all of the time, but the highs when they come are beyond measure. I know it’s taken a long time to get here, but I feel like I am just getting started. Here’s to ten more.