Archives For #WorldCancerDay

The 4th of February.

I am cold and tired, and I think one is feeding the other. I don’t know why; I didn’t have a particularly bad night but maybe my body is just furious with me for trying to exercise. My back has been absolutely horrendous today, to the point where I still can’t even force myself to stand up straight.

This morning, I wrote up a blog post while watching Sunday Brunch, then I made the antlers, ears and arms of Heinz. I also put together a post on World Cancer Day, using some bits from the Anthony Nolan blog that they didn’t keep, and adding some extra paragraphs to make it more suitable for today.

After lunch, I went upstairs to get dressed (I couldn’t be arsed to get out of my pyjamas this morning) and take some photos wearing my Anthony Nolan Links badge for the blog post I then put up.

Back in the living room, I put Heinz together, and now all the Christmas dudes are finished! Off to Iceland they go.

The 5th of February.

My MRIs on Wednesday cannot come soon enough. Last night, my right arm and calf felt really heavy and swollen, and today it feels like something is being squeezed in the arm. I could blame it on the fact that I’ve been crocheting for a lot of today, but that’s no different to many other days when I haven’t felt like this.

This morning, I suddenly had no project to work on, so I decided to look at the jumper I started over a year ago before my arm swelled up. I’m far less keen on wearing the wool I used, so I unravelled it and instead I am using it to make a chunky cabled scarf like the one I made for Christine for Christmas. It’s going well, but my arms need a rest now.

This afternoon, my Edward’s Menagerie Dogs book arrived, so I won’t be short of projects for long. There are so many great patterns, I can’t wait to make them all, although some will be very wool-heavy and time-consuming.

Can’t believe it’s only a week until Still Standing. I do not expect my sleep pattern to be good until then.

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 February. 

I do not like diuretics one bit. So much peeing. If this makes no difference to my arm in a couple of days I will be rather annoyed. More annoyed, I should say. I’d really like to wear jumpers that aren’t massive and coats that are actually warm. Sigh. 

Blog post this morning during Saturday Kitchen, then I had to be at Lyn’s house at twelve for another Cats Protection meeting. Part of it involved going down her garden, so I stayed in the house and made friends with her big black kitty. Very soft and floofy but also moulty, like Oscar was. 

It wasn’t a long one, but I was still quite hungry for my lunch when we got back. Then this afternoon, we have made Nigella’s quadruple chocolate loaf cake. It is a behemoth. 

Today is World Cancer Day, and I’ve been wearing my Anthony Nolan Unity Band. I can’t quite believe this year is ten years since I was diagnosed. I don’t know what I expected my life to be at this point – I suppose I thought I’d be fine, or dead. Certainly not this weird, in-between state, constantly breaking down in ever more creative ways. Sure, I’d like to be fine, but I don’t want to give up the good things in my life for that and I think I’d have to. I’m willing to pay this price. 

The 5th of February. 

If it’s not one thing it’s another. The arm is still exactly the same, and my back is really bad – the right side of my lower ribcage is super stiff, so deep breaths are a problem, standing and walking are even worse than usual. God I wish the bloody pain team would just give me an appointment so I could get a drug that works and doesn’t make me sick, unbearably itchy or incapable of breathing. 

Day largely spent in front of the television – Sunday Brunch and rugby, while I crocheted a sock. It’s just a practise, not going to be wearable, but if it works then I can do it again properly. 

This evening, I’ve been out at The Glee to see David O’Doherty. I planned on using the lift as my breathing is still worse than usual, but then I was told to ask inside the venue and they’d take me to it. Unfortunately, that kind of defeats the purpose because to get to the lift, I’d have to leave again to walk to the back door where the lift is, which makes me breathless anyway. So I climbed the stairs, and was taken to my seat which of course was as far from the door as possible. At this point, I was out of breath to the point where it scares me. I just have to sit and wait for it to get back to normal. 

The show was great, just what was required. Denise from Cats Protection was there with her husband and we were saying that we really needed some relief from the awful world. He definitely was that.

The 4th of February. 

I fixed the crochet that was upsetting me. That’s the first thing. 

Second thing is I went to the GP to chat about the fluid in my hand. It’s only in my left hand, doesn’t make sense. He didn’t say much. Felt my hand, suggested I take my bracelets off. There isn’t much to do because it isn’t inflamed. I suppose I just have to watch it, see if it gets worse? Blah. 

It’s #WorldCancerDay today. It’s difficult for me – I have a lot of mixed feelings. No doubtedly it fucked up my life good and truly, but a lot of really incredible things have happened that wouldn’t have otherwise. I have no idea what my life might have been like if I were healthy, it could’ve been utterly dreadful. 

I’m also incredibly grateful to the places I was treated and the treatment I had. My donors, too. However, I resent them for not being quite good enough to fully fix me. I know I shouldn’t be bitter but it’s hard when I see so many other people who got through it scot-free. 

I suppose I just feel like I can’t put it behind me, like it’s never over. If it came back in another form, I wouldn’t be surprised. The amount of oestrogen I’ll go through in my lifetime could certainly cause me problems of nothing else does first. 

I suppose I’m just scared. I’m afraid to try and make a life in case it gets taken from me. 

The 5th of February. 

It has not been an especially busy day. 

I managed to get my own breakfast and coffee this morning, which has made me hopeful for my return to the gym next week. 

The majority of my day has been spent crocheting the lilo for my crochet doll to lie on (yes I know). I took a break after lunch for Mommy and I to go out to town so I could take my Bluetooth mouse into the Apple shop. It was my first trip in the courtesy car we’ve been given while they fix the minor bit of damage that was done the other week when Mommy scraped the car outside Black Sheep, and as soon as I got in I was hit with a wave of smell from the bubblegum air freshener. It’s awful. The mouse is still under AppleCare so they should just replace it. However, for them to do that, I need an actual appointment, and to get one today, I would’ve had to wait three hours. I’m at the dental hospital on Monday anyway, so we’re going to go into town early and go to the Apple shop first thing, so hopefully I can get sorted before I go to see Mrs. Richards or one of her minions. 

We also had a brief trip to John Lewis to get a 2mm and a 5.5mm crochet hook for other projects within the book. I’ve been through it and checked that those were the only ones I’ll need. 

I’m going to have to text Shaki; I want more kittens!

This photo was taken just after I had a tumour that was in my face biopsied in 2008.