Archives For cancer

The 15th of August.

Such a long day of travelling and oh my back hurts so much.

Off to Wales to see Taid! Set off just after nine, and I spent the whole journey listening to the Hidden Figures soundtrack and reading The Beautiful Cure. When we arrived, Taid was wearing a very jazzy orange shirt. Apparently he has two more in the same pattern! He is full of surprises. Anyway, we let him finish getting ready, then we went to a pub for lunch (not the one in Conwy so no dogs).

It was quite a nice place, and I ordered a “light bite” of fishcakes which ended up being incredibly filling, so what a full meal might have been I dread to think. It was good though! No complaints from me. That might have been different if I’d had a coffee like the others – they came with squirty cream instead of milk and was apparently disgusting.

When we got back to his house, Mommy and Daddy did his washing up, and I made a space in the living room amongst the piles of post so I could sit and do the puzzles in the Telegraph.

We were on our way back in good time for once, so we got home about seven. I love my comfortable chair.

The 16th of August.

Today is the 11th anniversary of my cancer diagnosis. It’s been a good day.

I was up early again because I had clinic with Andrew. I wasn’t sure how he was going to react to my arm because last time I saw him, he said he didn’t think I should have lipo. Thankfully, he was delighted! I think he is just happy that I am fixed. He’s still confused, but he said I made his day so I’ll take that.

Went into town for anniversary treats. I got a new lipstick from Huda Beauty, a cruller from Krispy Kreme, and The One Who Wrote Destiny by Nikesh Shukla from Waterstones. While we were in there, we saw Mr. Tobin from Hallfield! That was a lovely surprise. He doesn’t age, I swear.

This afternoon, I have had a lovely time starting a baby blanket and watching House. I even got some early strokes in with Dolly! She doesn’t usually allow that until the evening. I’ve also been getting lots of nice comments on a poem I have written about this day. I can’t remember the last time I wrote anything vaguely resembling poetry so I wasn’t sure how it would be received by it seems that people like it!

We are having venison for tea. Happy.

10 years of remission.

July 30, 2018 — 5 Comments


I imagine death so much it feels more like a memory

When’s it gonna get me?

In my sleep, seven feet ahead of me?

If I see it comin’, do I run or do I let it be?

Is it like a beat without a melody?

See, I never thought I’d live past twenty

Today marks a decade of being in remission from cancer for me. It is the tenth anniversary of my second stem cell transplant, the date that I received the cells that finished the process of obliterating the leukaemia. Only 26% of AML patients reach five years of remission, so considering I have doubled that, I should be celebrating, right? People think that being in remission means that you are fine, that it means the ordeal is over. I am not fine. I am so far from fine. I am physically and mentally broken. And, in the past six months, I have become totally preoccupied by the notion of my death.

I suspect my body’s reaction to the transplant and everything that happened afterwards probably means that my cancer is incredibly unlikely to return, but that is not what I am worried about. The lung disease that I developed in early 2009 has been steadily reducing my lung function since then, leaving me with just 23% after I became ill with pneumonia last year, and my right lung collapsed. Every activity required time afterwards to catch my breath, and by activity, I mean putting on an item of clothing. I mean brushing my teeth while sitting down. I mean rolling over in bed. It was terrifying, and the only thing that got me through each day was knowing that I would get better. I spent every hour waiting for night because I was a day closer to improvement. I am never allowed to have a general anaesthetic ever again because my lungs would not be able to support me afterwards. I am one accident or infection away from grave danger.

Struggling to breathe in the dark is like being buried alive.

Being legitimately breathless is petrifying. I don’t mean the out of breath feeling you get when you’ve just legged it for the train and leapt on as the doors are closing. True breathlessness feels like you are suffocating. It feels like you will never breathe normally again. It is the mental fight between the two halves of your brain; one wanting to panic and hyperventilate, and the other having to force those thoughts back down because that will make it exponentially worse. It’s climbing the stairs, knowing there is an oxygen cylinder at the top, attaching the specs to your face, having four litres per minute stream into your lungs, yet not being able to close your eyes to concentrate because struggling to breathe in the dark is like being buried alive.

And I’m so afraid. I’m afraid of the point in the future where I’m trapped in a body that won’t cooperate with my mind. It still refuses to resign itself to the facts of how little I can do. In my dreams I can still dance. In reality I can’t get through a verse of a song. My brain doesn’t want to recognise that, the way Nigel Lawson doesn’t want to acknowledge climate change. Welcome to Denialtown. Population: Me.

I have felt like a burden before.

I am not afraid of the act of dying itself. I don’t want to die in a hospital but I think I probably will. I anticipate that if it is some strain of infection, as is most likely, then I will fade away, somehow, and the machines will stop beeping because my heart has stopped beating. Maybe that is just a romantic notion and it’ll actually be violent and distressing but even so, it’ll be over, and I’ll be gone. No, what I am scared of is what will go on around me, before and after. In the before, if I become terminal, and we have to live with the weight of that sadness…I don’t know how to be the person that gets lost. When people I love have died, when I knew they were going to die, having to leave their side knowing I would never see them again felt like tearing off a limb. How do I be the person that is said goodbye to? Perhaps it is telling that for all my talk of being realistic and practical, I still haven’t planned my funeral.

Because that is the after. At least prior to my death I can still hold my mother’s hand to try and comfort her. Afterwards I’m just a memory. A ghost haunting everything I leave behind. A sudden reminder in something they know I would have loved and the searing pain in the remembrance I will never experience it. I know that grief isn’t linear, that it follows you around and blindsides you at two o’clock on a Wednesday afternoon. It punches you in the gut. And I am scared of the overwhelming guilt that comes as the free gift with the awareness of your impending death. The sense, however illogical, that I will be the cause of such anguish, and the sheer powerlessness of the lack of ability to change that. I have felt like a burden before and the gravity of my depression rendered me barely able to speak. I don’t want to go back to that place.

Nothing in this world that’s worth having comes easy.

Most of all, I’m scared it will come before I am ready. The dangerous thing about staying alive all this time is that it has tricked my mind into believing that I’ll just keep going. Because of that, I keep making plans, putting things off, living the only way I know how now. And I really love it. I am so lucky. I have the most phenomenal family, who support and take care of me no matter what. My friends are kind, smart, magnificent human beings who treat me like a normal person, and it gives me so much pleasure to watch them achieve such great things. I love the comedy gang, catching up before shows, seeing their new work, cheering them on as they make waves. I love the cat fostering, being able to nurture them into happy animals that go to homes that will love them for years, and the friends I’ve made through doing it. I get a huge amount of satisfaction from crocheting all the things, because I can make anything from scratch and share them with people, and hopefully they’re lasting tokens of me. Finally, I love it when I am able to use what has happened to me to make changes for people like me in the future. Whenever Anthony Nolan ask me to speak, or I get to talk to the press, or somebody new tells me they’ve signed up to be a stem cell or organ donor because of me, that is everything, because that is potentially a life saved. And I want to stay here with these people, doing all these things and more. I’m never going to be finished. I’m never going to be ready. I’m really sorry for all the loose ends I’ll inevitably leave behind. You know how I hate an ambiguous ending.

But I can’t help feeling like my expiration date gets nearer with every year that I keep defying the odds. It’s coming, and when it does, I want to know I meant something. If I leave anything behind, let it be the way to stop this happening again. Keep recruiting new donors, keep telling people about my case, keep believing that things can change. Find a way to fix lungs without the need for a transplant. Save someone else from pain. It won’t be easy, but in the words of Dr. Bob Kelso, nothing in this world that’s worth having comes easy. It hasn’t been for the past ten years, but the good parts have made it so worth it. So when the inevitable does come, and the choice is between the easy thing and the right one, know that you have the strength to do the latter. I have been told a million times of my resilience. As long as you keep me alive in your heart, you’ll have it too.

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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