Archives For cancer

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. 

The 3rd of May.

I have been putting this off because writing it down makes it real.

It’s been a pretty quiet, mildly shitty day. I still have this stupid dry cough which wakes me up throughout the night, although my throat is less scratchy now, which I suppose is a plus.

We went into Birmingham this morning so I could pick up my copy of the new Jeffery Deaver novel, The Burial Hour. I also needed to get a thank you card to give James tomorrow when we have our last ever appointment, and Mommy wanted a blank card to put a cross-stitch in but couldn’t find one.

This afternoon, I phoned Andrew’s secretary, Emelda, again, but he hadn’t got back to her and there were no spaces in his clinics until the beginning or end of June. At this point I got upset and I tried to explain about the wedding. I didn’t do it on purpose, but she then said she’d keep trying for me and I’d hear back as soon as she spoke to him.

Mommy then went to Grandma’s, and I watched the new Pretty Little Liars and started the book. Mid-programme, Emelda called me back, and I’ve got an appointment for 25th May, so I will “go to the ball”, as she put it. I didn’t tell her that really I need to see him much sooner because she’s obviously pulled strings to get me in there, but I’m going to have to attend the wedding in my wheelchair, on oxygen and with a giant, swollen arm. I am so tired of this. My hateful body.

The 4th of May.

Nothing like bad news from a friend to prompt a reality check. Dean had his operation on Wednesday to remove the tumour on his rib. That part went as predicted, but what the had not expected was to find new tumours elsewhere that weren’t visible on his scan four weeks ago. Obviously this has been a shock to everyone, so they don’t know what the plan will be. I am just devastated for him, for Adam, and his family. I know how it feels to relapse but he hasn’t even been in remission yet. He knows I am here, for whatever he needs, This is the worst of days.

Up until hearing this news, I was having a pretty good day. I don’t think I have coughed so much today, but I won’t get my hopes up about improvement just yet. I had an appointment at Black Sheep to see James to re-tone my hair, my last session with him! I gave him his crocheted monkey and a card with a rainbow sheep on – I thought it was the most appropriate. I was not there for so long today, he was just going over the colour again, so now I’m a bit more vibrant. It has been our best work.

Home briefly, then back out, to the QE for my physio assessment. They were very on time, so I had barely started reading my book before I was called through. I filled in a questionnaire about my pain, then a chap came to see me. We talked a little bit about medical stuff and my current limitations re: oxygen, then he wanted to see what I could do. He had me stand up and bend forwards and backwards, then sit on the bed and twist left and right. Apparently I am quite stiff when going backwards and left. I then had to lie back and do some stuff with my pelvis and legs. Basically, he can give me some exercises/stretches to try out for a few weeks, then I’ll go back and we’ll see what progress has been made. He was very impressed with my enthusiasm and determination, which made me laugh because I used to be so terrible with physios, always pretending to be asleep when they came. I learned the hard way that that is not helpful.

The 3rd of October. 

Ugh. There has been a cloud over today as I found out last night that a woman I had become friends with over Twitter who had recently had a transplant, Amber Fox, has died. I knew she had pneumonia, but I really thought she’d pull through. It’s a feeling of disappointment I know far too well, but it never gets any easier. 

So this morning I just ambled around, feeling generally shit about the world and this fucking disease that just never seems to be diminished by the fight back. I wrote up the very long blog post about Christine’s birthday weekend, and made myself a cheese toastie for lunch. 

After lunch, I pretty much sat and worked on the crocheted present constantly. Nearly done. It will be very cute. Although I had to redo one part because I wasn’t paying attention and didn’t read the instructions properly. 

The lady from the new family next door came round with baby George to give us their phone numbers in case we ever see a burglar or something, and we gave them the keys Joan had given us. George is cute but he was grumbly because he is a bit poorly so I did not squidge him today. 

Shaki phoned to ask if I could take a kitten for a few days, so she’s bringing this five week old one round at some point this evening. It’s going to be so small!

The 4th of October. 

Shaki did not appear last night because her evening turned into a total disaster, so we had kitten delivery at ten o’clock this morning. Oh my god she is perfect. Her name is Olivia and she is so small and cute and soft! I could just look at her for hours. It’s such a shame we only get to have her for a few days while Shaki’s away. 

This afternoon I’ve been back at the gym and Vlad actually left me alone! Nice to not have to stop what I’m doing to have a conversation I don’t want to have. I didn’t see anyone who irritates me, and was even gently amused by the enormous toddler wearing cycling shorts under his normal shorts. What is it with guys at the gym who like to pull up their shorts so you can see their entire thigh? Not necessary, thank you. 

Upon getting home, I went straight back to the kitty. Looks like she will need lots of company because right now she is climbing the bars of the cage and doing tiny sad mews because she wants to escape. We can’t let her roam around too freely because she’s so small, she could get stuck anywhere.  

The 13th of September. 

I have had just the most perfect day. So happy. I got up and had time to write up a post before we had to leave for the station, where I got a flat white from Starbucks that did not taste like garbage, and got settled on the train. My plug sockets weren’t working which was not ideal, but a nice man at the next table down let me use his spare one to charge my phone. 

The man with the ramp was very prompt for once, so I swiftly alighted and got a taxi to Kaffeine where I was meeting Suzi. The cabbie was very chirpy, whistling a happy tune as we made our way through the traffic and I was only a tiny bit late. We sat outside because it was a) gorgeous weather and b) much easier than wrestling the wheelchair inside, and we basked in the sunshine. I had a really excellent dark chocolate brownie and flat white by the way, I would recommend. I elaborated on what the event tonight was, and told her about the situation with my back, and she caught me up on how Edinburgh had gone, and explained what she’s working on at the moment which all sounds very promising and I’m excited for her. While we were sitting, a man walked past us into the shop, and I said “That guy looks like Dexter” (as in, Michael C. Hall from Dexter) and she said “That is Dexter!” so that was my London celeb-spot for the day. No idea why he’s here but whatever. I was later reminded that he had a stem cell transplant a while ago and I should’ve got him to come tonight. I am not quick-thinking enough. She had to leave at quarter past one, but was going in the same direction as me, so we headed towards Selfridges until she had to split off to go to her meeting. It was so nice to catch up; she is such a babe. 

In Selfridges I bought some rainbow bagels and a cinnabon, which I ate in the Starbucks on level 4 while listening to an hour long podcast to kill some time. I had a browse of the book section, where I had to disappoint a girl who wanted to know where I got my hair done. Sorry, you have to travel to Birmingham for this. 

I gave myself plenty of time to get to Zizzi where I was meeting Lauren for dinner, and had a few stops on the way. I went past Workshop Coffee where I bought some Square Mile Sweet Shop beans, and then made a stop in Konditor and Cook for two brownies – I was very restrained. That was just round the corner from the restaurant, and I was only about ten minutes early, so they let me sit down and peruse the menu while I waited. When she arrived, we pretty much ordered straightaway, and our pizzas arrived very quickly. I was still quite full from all the cake, so I only managed about a third of mine, but it was fine, I took the rest away in a box. We got to talk about her joy at finishing her MA and being able to read books for fun, and how her nan is having a great holiday in Ireland with all her friends. 

We paid, then had to find our way to the BMA. First we went the wrong way, but Google Maps put us back on the right track. We met up with Amy outside her office building which is basically next door, and we had a tiny group hang before Lauren went to meet her other friend and Amy and I went into the BMA. We picked up our passes and followed the signs that said Anthony Nolan. I had to get in a teeny tiny lift to get down to the room we were using, although we then very quickly left it to go into the attached garden. Ben was out there with a large folder of papers, and he said hi before going to greet guests. Amy and I sat at a table in a slightly shaded area, and various people gravitated towards us for chats. Some Anthony Nolan people I knew like Richard and Henny, some I didn’t, Charlie Craddock, and we had a delightful time discussing podcasts with a guy called Owen who’s a donor and his friend. They’re doing the Birmingham half-marathon in October but not to raise any money, they’re saving that for the full marathon that comes next. I also briefly got to meet Alice Byron’s dad, and we talked jaundice and liver drugs, then before we could talk more we were being ushered inside for speeches. First Henny, then Charlie, then me. It was fine, much better when I had it written out, and much less crying this time. Lots of people came to speak to me afterwards, including Nadia Martini, Yaser’s sister, so it was super nice to meet her, and I spoke to other people who’d had transplants or had family members who had. Everyone told me how inspiring I was, and Ben presented me with some beautiful flowers. At nine, it finished, so I said all my goodbyes, and Amy and I headed back to Euston where I gave a homeless man my box of pizza. She sat with me until her train came, then mine was delayed by fifteen minutes, so by the time we pulled into New Street, I was more than ready to be home. Toast, then bed. 

The 14th of September. 

Didn’t get as much sleep as I would have liked because I had an appointment to get my hair cut at quarter past ten. While I was in Starbucks yesterday I just had the overwhelming urge to chop it all off again and lo, it is done. Wonderful Michaela. She’s undercut the sides and it’s longer on top so I look a bit shaggy in a good way. So glad it’s done. 

When I got home, I had lunch which included the fudgepacker brownie I bought at Konditor and Cook, then I sat for about an hour, writing about yesterday. So much to say!

One of the effects of me sitting down all day was that my feet had puffed up with fluid. My back is actually not terrible, I think because I got out of my chair as much as possible, but there has to be some sort of punishment for going out. To try and combat it, I went up to my bedroom where I lay on my back with my legs up against the wall, trying to drain the fluid out of my feet while I watched the first episode of American Horror Story. We’ll see how that goes – if it gets too scary, I’ll find something else. 

Back out this evening for an Old Hallfieldians reunion. The traffic was ghastly, so I was half an hour late, but when I arrived, Celia was the only one there. After some sleuthing, we determined that the MailChimp email didn’t go out. Thankfully, other people did start to arrive, but most excitingly, my friend Steph came! I have known her since we were five but haven’t seen her since we were sixteen as she went to Rugby for sixth form, then university in Nottingham and New York, and has been travelling since then. 

She’s an artist now, and has been artist in residence at The Met in New York and The Museum of Tomorrow in Brazil, so she’s just a bit great. She’s back in England for a month, so she and her mum came to the pub and we had dinner while chatting about life now and back then. Things like the controversy of the elocution competition, the school play of Sleeping Jack Whittington and the Seven Bears, and the time we did an assembly in which I had to wear Steph’s mum’s fox fur coat. No idea what I was meant to be, but it was huge and really soft. Such random things I remember. 

We left just after nine, and I gave her the biggest hug I could muster. Not leaving it ten years until next time!