My cancerversary.

Last week was my cancerversary; one year since the day I was diagnosed.

I was unsure how to ‘honour’ the occasion since I didn’t want to celebrate it but I didn’t want it to just pass me by either. I was worried that I might feel bummed out so I decided that I wanted to do something enjoyable to take my mind off things and encourage the day to be a happier one.

Cosy cuddles with my love the night before my cancerversary.

Matt and I had bought all the men in my family tickets to a rugby world cup game in Cardiff for Christmas so they were out all day and night. My sister took the day off work and along with my best friend Ellis, we decided to go to one of my favourite places in the world: IKEA. I love it there. I can spend hours locked inside that place and never fail to spend a fortune. It baffles me to see someone at the till spending less than £50. Ellis once spend £17. Crazy.

Ellis is currently writing up her PhD and she lives a two minute walk from the Queen Elizabeth Hospital where I go to my weekly clinic appointments and where I also had my stem cell transplant and two subsequent admissions for shingles and GvHD. She accompanies me every week to the clinic and then we go for a nice lunch somewhere or do a bit of shopping. I really love our Wednesdays together, it’s proper quality time with my bff.

So we went to my clinic appointment early as usual and then headed off to IKEA and we ended up having a great day. My spending was even more excessive than usual. In fact, for the first few weeks out of hospital after an admission my spending always gets a bit out of control. I think it’s a combination of not spending any money for weeks on end with the exception of the extortionate hospital TV packages and having a bit of a detached, disregarding and almost “fuck it” attitude towards a lot of things. I read the side effects on the Prednisolone tablets and they said that you mights have symptoms of feeling high or hypomania, so I am going to blame them. After an admission I actually have a very passive appreciation about a lot of long-term ideals: I spend loads of money and I eat loads of crap food (usually whatever I’ve been madly craving while staring at another dry cheese or egg sandwich while in hospital), or just becoming generally a bit obsessive about food.

Anyway, IKEA was great. We went straight to the restaurant where Ellis and Katherine had the meatballs and I had the veggie meatballs followed by a cuppa and the most delicious fudge cake I have ever had in my life (see photo above). I bought loads of stuff including a lamp table for the lounge, a new side table also for the lounge, lots of candles, four bamboo place mats, a white enamel jug, a small lamp for the conservatory, a new lampshade for the other lamp in the conservatory, two blue cushions with a beetle on one and fossil on the other for the bedroom, a tray for my perfumes, four bowls, a frame for a gorgeous Cat Coquillette print I bought from society6, a white letter storage caddy, a wooden storage box for the bathroom, six throws for Leo’s side of the sofa, a lambswool throw for the footstool, a plant and a fruit bowl.

Don’t judge me. I know it was excessive.

We got there at 12.30 and left at 5.00. Then we went to Boots where they had started to put the Christmas stock out (eek!) because I needed to get some skincare stuff to attempt to deal with the folliculitis on my face. I’ve never liked putting a lot of harsh chemicals on my skin and have always tried to use as natural products as possible. I’ve actually always had good skin without having to do much to it and it’s always been one of my best features. I usually just remove my makeup by washing my face with a face wash (usually whatever is mild, not tested on animals and on offer or cheapest) followed by moisturising. For the last year or so I’ve been using a natural honey moisturiser that my mother-in-law-to-be got for me (and subsequently repurchased) while on holiday in Devon. But since I’ve had the folliculitis on my forehead, eyebrows and slightly on my cheeks, I just feel like I need something a bit more. So I bought an exfoliating face wash, some tea tree and witch hazel night gel and a botanics clay mask. I think the redness and amount of sebum has been reduced but until the steroids are low enough I’m just going to have to put up with it.

Afterwards we all came back to my house, Katherine brought her doggy, Leo’s cousin Oscar the cavilier King Charles spaniel, and Ellis’s boyfriend Josh came over too. We watched The Great British Bake Off and ordered a takeaway curry. There are about seven curry houses on our local highstreet and all of them are pretty good but “Dreamers” is my current go-to favourite. It has loads of really diverse and traditional dishes on the menu rather than just all the usual korma, bhuna, dhansak, madras, sagwala etc. I had Jumbo prawns in pomegranate and dill which came with griddled peppers, onions and new potatoes served with roasted coconut oil and shared a ginger and lime rice with Katherine. It was SO GOOD and everyone was really impressed and happy with their meals.

Katherine bought me a lovely bunch of flowers and Ellis got me a card which I’d championed and admired since I was first diagnosed, designed by Emily McDowell who creates cancer empathy cards which are actually empathetic. The one Ellis bought for me reads “When life gives you lemons, I won’t tell you a story about my cousin’s friend who died of lemons”. She also bought me a pretty little pot of Whittards loose leaf Earl Grey and a tea strainer in the shape of a whale which is probably my favourite thing I have ever owned as I am completely whale obsessed.

So in the end, my cancerversary was a good day, and I really didn’t think about cancer all that much at all. In fact, since then I’ve been doing really well and I have been feeling way more positive and full of energy recently. My liver results are continuing to improve and my doctors are continuing the taper of my Prednisilone (I’ll be reducing to 60mg per day on Sunday). And this week I had some fantastic news in that my haemoglobin level has risen again (more significantly this time) by itself. So it looks like my blood group is finally changing or the EPO injections are starting to really kick in, or a combination of both. Either way, it was was perfect way to round off the week.

The battle against cancer and why war metaphors are a bad idea.

I beat cancer. Or perhaps I should say I am beating cancer. But some people don’t. Did they not fight hard enough? Were their tactics wrong? Was their ‘strength of character’ not strong enough? Was it their fault that they died?

Of course not. So why are we assigning so much violence and guilt to a concept already so devastating? This is victim blaming at its rawest and most sinister. 

It is nobody’s fault when someone dies of cancer. But if we discuss cancer in these war-like terms, of battles and fights, of winners and losers, of defeaters and defeated, then invariably we are assigning these binary notions on an undeserving population. If some people beat cancer, then it stands to reason that some people lose to cancer. And people are not afraid of saying that either. She lost her battle with cancer. She lost the fight. She’s a loser. And what about those with terminal diseases? No matter how much they fight, it will be futile in the end and no amount of rallying the troops is going to change that. Surely that is damaging to a person’s already fragile psyche?

Some people’s bodies respond to cancer treatments and make a full recovery. Some people’s bodies do not respond to treatment and the disease overwhelms them and they die. It is as simple as that. It has nothing to do with moral fibre, strength of character or a positive mental attitude. No one is to blame but the cancer. I feel very passionately about this. I feel uncomfortable when anyone tells me that it is something in my ‘character’ which has enabled me to get better. No. It was a team of highly skilled doctors, some hefty doses of chemotherapy and a stem cell transplant from a benevolent sister. 

And yet it is so prevalent and so persistent. Fight cancer. Let’s beat cancer. If you beat cancer, you are a cancer SURVIVOR. You were brave… These concepts are not only shouted at us from advertising campaigns, charities, well-meaning celebrity spokespeople, but family members, friends, acquaintances, even nurses and doctors. It’s impossible to avoid. 

The irony is that cancer is from within. Cancer is our own cells that have got out of control. It’s not some external army - if it is a war (it isn’t) it is a war with oneself.

I began having these thoughts right from the outset of my diagnosis. As a healthy person, I had never thought about the problems with our linguistic understanding of cancer. In fact, there are a lot of things that it is difficult to appreciate until you’re on the other side of it (wait for my rant on the Teenage Cancer Trust). But I felt like that in telling me to fight my disease, people were also telling me that I had to be stoic. Some days, I just wanted to be a mess of tears and self-pity. And there were indeed many days and nights spent that way. A lot of the time I was, and still am, bloody miserable that my life has had to be put on hold, that I almost died, that I am infertile, that I look like a freakin’ hamster. But what would people say if I just moped around? What would my obituary say?

“Last night, Grace Ward lost her battle with cancer. She didn’t really put up much of a fight. In fact, she kind of deserved what she got. She never saw that silver lining and she certainly didn’t look on the bright side. In fact, everyone was surprised she didn’t give up sooner. What a loser.” 

Of course not. Even if I did mope about all day, everyone would forget that and convince themselves and each other that I fought the hard fight. That’s the funny thing. It’s actually completely beyond a patient’s control. Whether you are perceived to be strong and composed, or whether people see your obvious struggle, they will still say that you were brave and that you fought hard. Like everything else, it’s beyond your control. As I said, these ideas struck me almost straight away and I felt alone in my thoughts (and also somewhat like an ungrateful cow). But during my third round of chemotherapy I read “C: Because Cowards Get Cancer Too” by John Diamond and in it there was a whole chapter on exactly these thoughts. It was one of those rare moments in literature, articulated perfectly by Alan Bennett by way of Hector in The History Boys when “you come across something - a thought, a feeling, a way of looking at things - which you had thought special and particular to you. Now here it is, set down by someone else, a person you have never met, someone even who is long dead. And it is as if a hand has come out and taken yours”.

And yet, a quick google of John Diamond reveals an obituary from the Daily Mail entitled “Diamond loses battle against cancer”. It’s infuriating! An obituary written by someone who hadn’t even bothered to read his book. 

The Guardian did him proud by commencing his obituary with these ironic lines: “The journalist, writer and broadcaster John Diamond, who has died aged 47, did not battle his illness bravely. Nor was he courageous in the face of death. He developed cancer and, despite treatment, it killed him”.

So if this thing ever comes back and my treatment doesn’t work, I plead to you through cyberspace… don’t think I fought in any other way than that which came naturally to me. I did not step up my game. I just did what I felt like on a day to day basis, and some of those days were easier and better than others. And some of those days I felt thoroughly fed up with the whole thing and I am not ashamed of that in the slightest.

More Leo less cancer.

For a blog entitled “Leo after cancer” there seems to be a lot of talk about cancer and not much in the way of Leo. So let me correct that right now.

Leo is a border collie cross who I adopted from the Dogs Trust in Kenilworth when he was aged 10 months old. I first saw him on the Dog's Trust website and I immediately fell in love. Matt and I had always wanted a dog, and we decided that once I was 100 days post transplant, and feeling well and capable of looking after the day-to-day needs of a dog, that it would be a good opportunity to adopt because I would be able to be at home a lot to help settle the new pooch. So for my birthday at the beginning of July, Matt bought a whole heap of doggy paraphernalia including bowls, leads, treats and toys. That week we went to the dog’s home and saw this beautiful creature curled up on his bed while his kennel mate, a much larger dog boxer-type dog called Jasper, bounded back and forth barking and peeing all over the place. We knelt next to the glass window and Leo tentatively made his way towards us and considered us for a while before heading back to his bed and curling up once more. I think we were smitten from that moment. We had a look around the home and one other collie called Dexy stood out to us because he was completely white with a black pattern on his face which made him look like he was wearing a batman mask.

We filled in the form with both Leo's and Dexy’s details and asked to speak to one of the rehomers. They informed us that Leo was a nervous and worried chap who would need a lot of time and space, that he was disinterested in food, toys, and people. Dexy on the other hand was a wild manic thing who needed three hour-long walks a day. My heart broke for Leo, and I knew that Dexy wouldn’t be a right fit for us because I wouldn’t have the energy to look after him.

There wasn’t much information to go on with regards to Leo’s history except that he had come from Ireland, that he was chained up a lot, and that he could clear a 7ft fence. Apparently the Dog’s Trust receive a van load of dogs from Ireland each week due an overwhelming amount of strays in the country and a lack of resources and facilities to deal with the demand for rehoming. My Grandad was an Irish orphan too, so perhaps that’s one of the reasons I felt such an affinity for him.

We said we would like to meet Leo and they arranged for us to see him. He trotted in and I just wanted to rush over and scoop him up but we were told that we would need to let him approach us on his own terms and that physical contact would need to be built up gradually. We were also told not to make direct eye contact as he might perceive it as threatening. When touched or stroked he would freeze completely, but he was better than we thought he would be and pottered around the room nibbling biscuits and treats that we'd scattered on a large duvet in the middle of the room. There wasn’t much to discuss, we both knew he was the one.

A few days later we returned to the home for a pre-adoption talk including a special chat with the dog behaviourist to help us with caring for a nervous pup. And afterwards we took him home! He settled in so much sooner and so much easier than we imagined. There have been a few teething problems along the way and things we have had to learn. There were the obvious housetraining issues in the first few weeks and if he was left alone in the kitchen while we popped out we would invariably return to a thoroughly scavenged bin, whole loaves of bread torn up and eaten, things knocked off the kitchen counters etc. He even flooded the house once after jumping up and accidentally knocking the tap on (I am sure it wasn’t malicious!). This caused carnage in the way of broken sugar caddies, a ripped up calendar, destroyed door frames and torn up bedding as he was probably terrified by the ordeal. Luckily, with the exception of the door frame, there was no lasting damage. It was just a learning curve for us all and we eventually figured out that a bin lock and a crate were our best options.

He eventually learned to trust us, though he was very wary of Matt at first, and still is of some men. He is incredibly bright and I taught him basic commands such as 'sit', 'lie down', 'come', 'paw', 'in your bed', and 'up' within weeks. At the moment we are working on 'stay'. He loves his treats and is easily bribed with a tasty morsel, but he also has a stubborn streak and often refuses to move from his favourite spot on the sofa, especially if he knows it is bed time. When he first came home he was completely disinterested in all toys, it was like he didn’t know what play was. If he saw or did something which got him excited he wouldn’t know how to react and he seemed afraid of his own instincts. I had to train him to like toys and to see play time as a fun and rewarding activity. I began by treating him every time he looked at a ball, then making him work a little harder, for example, treating him when he touched the ball with his paw and eventually picking it up with his mouth. Now his favourite thing is tennis balls. The kid lives to play fetch. He also loves rope toys though these tend to be destroyed within days and he has two soft plush toys: an elephant named Elliott and a rat named Rufus but for some reason he doesn’t destroy these.

Now he is the biggest fuss pot out, verging on clingy. He loves to run upstairs and get into bed with me the moment Matt closes the door to go to work. And recently he has been a real daddy’s boy because Matt takes him on his long walks and plays fetch at the community centre. During my most recent admission to the QE for my GvHD he stayed with Matt’s mum and dad for two weeks because Matt was away for the first week and then was working full time and visiting me on the evenings so it wasn’t fair to leave him alone for so long. He became very settled there and I think that because he has been so transient in his short life, from wherever he was born, to wherever he was homed, to being rescued in Ireland, to the dogs trust and then to us, he probably thought that nanny and grandad's was just his next home, so when we brought him home again he seemed to regress somewhat and began whining at night which has been difficult for the last few weeks.

Yesterday we took him for a walk around the reservoir and he was off lead for the majority of the time playing fetch and his recall was excellent. I felt like such a proud mama! Sometimes I forget that we’ve had him for less than three months, I can’t remember life before we had him and I can’t believe how much love I could have for such a beautiful creature.

Late-acute Graft versus Host Disease of the Liver (and breathe).

When you've been stuck in hospital and haven't seen your boys in over a week this just has to be done.

It’s been quite a while since my last blog post, but with good reason. When I initially started this blog my instinct was to go back to the beginning and tell the story until the present moment, but I have realised that that just isn’t realistic and I would be missing out on the right now. It’s also kind of tedious and time-consuming which made it seem like a bit of a chore and that’s not what I want this blog to be about. I want to enjoy the process of blogging and treat it as both a cathartic and an informative process. So I have decided to just write about whatever I feel writing about with no particular timeline. But just for a bit of context, the last couple of months my health hasn’t been on point and I was readmitted to the Queen Elizabeth Hospital in Birmingham with a diagnosis of late-actue graft versus host disease of the liver.

In a nutshell, graft versus host disease (GvHD) is a condition whereby the stem cells that I received from my sister during my transplant (i.e. the graft) are recognizing me (i.e. the host) as foreign and launching an immune response to attack my “foreign” cells. In my case, the graft is attacking my liver but GvHD can affect many parts of the body, particularly the skin and gut. 

There are two types of GvHD, acute and chronic. Historically, “acute” GvHD was considered to occur within the first 100 days post transplant, and “chronic” GvHD was considered to occur any time after this. However, medical professionals now tend to base their diagnosis on the clinical manifestations of the disease rather than the timescale. Thus I was given the almost chewable diagnosis of “late-acute GvHD of the liver”. It all started towards the middle of August. No, strike that. It must’ve started in June. That’s when I had another inpatient admittance due to a severe case of shingles which extended from my lower back, down my sciatic nerve to my foot. It was the second-worse pain I have ever experienced. But that’s another story for another time. As a result of the shingles I was put on a pretty high dose of a drug called Gabapentin for nerve pain relief. At the same time, I was coming to the end of the taper and eventual end of my Ciclosporin medication, an anti-rejection drug given to suppress my immune system to prevent my body from rejecting my sisters donated stem cells. 

At the start of July my liver function tests started to grumble. The Gabapentin can cause liver dysfunction, as can a lot of the other drugs that I was on, but there was nothing particularly concerning so things just carried on as normal. However, by mid August I started experiencing itching all over my body which would keep me up all night. I mentioned it at my clinic appointment but my doctor dismissed it and said to use an “emollient”. The following week I began to get symptoms of jaundice, mainly the yellowing of the pigmentation of my eyes and skin. My liver function tests all showed abnormally increased levels, particularly my bilirubin level, and so my doctor decided to send me for a liver scan to make sure there was no blockages or damage to my liver. They also decided at this point to wean me off the Gabapentin medication.

At this point I was convinced it was the Gabapentin causing the problem because my dosage had been significantly increased over the last few weeks because I wasn’t coping with the residual shingles pain. The liver scan was organised for the following day, and showed no obvious problems but before I had even left the hospital, as me and Matt were sat in Costa having lunch, I received a call from one of my doctors saying that they wanted to admit me to perform a liver biopsy. There was no bed available right away so I went home and then travelled back later that evening.

Now all of this was happening at the most inconvenient of times; Matt was going away for ten days the following day with his scout group on an abroad holiday to Spain which they organise every other year and he was the main leader responsible for about fifty kids. It was typical. The last time Matt went away was in January when he went skiing and I developed a hideous infection in hospital which was so bad it required a specialist infusion of donated white blood cells because it was between my final chemo and my stem cell transplant at a time when I had absolutely no immune system of my own. I've told him he's not allowed to go away without me any more because it's bad for my health.

So I was admitted to the oncology ward as there were no available beds on the haematology ward later that Thursday night and the biopsy was performed on the Friday morning. I didn’t expect to be in for long because, like I said, I was still convinced that this was due to the Gabapentin. Unfortunately, later that day the doctor told me that it was indeed graft versus host disease and that they were going to commence a first line treatment of high dose IV steroids (Methylprednisolone) right away. What the steroids would do is basically suppress the body’s immune responses so that they would stop attacking my liver. 

Everyone’s liver function fluctuates on a day to day basis, and it takes a while for the doctors to see if there is a particular pattern in the results or if it’s just a natural peak or trough for that day. Each day the doctors would do their rounds, tell me it was too early to judge whether there was an identifiable trend, and tell me to sit tight and wait and see.

After a week of this I was going out of my mind. My peak bilirubin level was 217 (I think it should be below 20, but don’t hold me to that). A week later and it was still raised, at which point one of my doctors came to see me on the ward, coat in hand as she was on her way home, to tell me that in all likelihood a second line of antibody treatment called Campath would be started the next day because it looked like I wasn’t responding to the steroid treatment.

That night my mind was in a whirr. Things had been slowly and steadily getting back to normal and I felt like I had taken ten steps backwards. Throughout my treatment I have done my best to avoid googling anything about treatments or survival rates or prognosis because the internet can be a very scary, a very outdated and a very dangerous place to look when you don’t really know what you’re looking for. But that night I googled, and boy did I google, and I drove myself half insane. I diagnosed myself with stage IV steroid-refractory GvHD of the liver with a poor prognosis. I didn’t sleep that night.

Campath sounded terrifying. It is a monoclonal antibody treatment used to target t-cells more directly and is used in some cases as part of chemotherapy regimes. Here we go again, I thought. More infections, one of which will likely see me off, I thought. But the next day my levels had dropped, so they didn’t start the Campath. The day after they had gone up again so they were still going to wait and see. The day after they went down, and again the day after that. That week my bilirubin hit 150 and stayed down and by the Saturday, I was allowed to go home. The relief was immense.

Since then, I have been going back to the weekly haematology clinic and my results have been up and down, but they have not risen so much to cause too much worry just yet and my doctors are slowly tapering my massive steroid dose accordingly. So it looks like, for now, fingers crossed, that things are going in the right direction. Apparently GvHD of the liver is a particularly stubborn one and can take months to completely normalise. If I’d had GvHD of the skin or gut which hadn’t responded quickly, it is likely that a second line treatment would have been considered sooner.

A word on steroids: fuck those motherfuckers. If there is one drug that can give you every conceivable side effect with the explicit purpose of demolishing your self esteem, then steroids are it. MY GOD it makes me wish I was bald again. They give you “moon face” which makes your cheeks swell up like you’re a hamster storing food; they make you put on weight but only on your belly, so you look like an orange with matchstick arms and legs; they give you cankles; they give you dry old-lady looking skin; they give you folliculitis all over your face which looks like acne; they give you insomnia; they give you anxiety; they give you high blood sugars; and in the long run they give you osteoperosis. 

But right now my energy levels and mood are in a good place and last week at clinic my haemoglobin level had actually risen by itself for the first time since my transplant! I have been reliant on blood transfusions every three weeks or so since my transplant because there is a mismatch between my sister’s A positive blood type and my original O positive blood type. Although my bone marrow is apparently now producing A positive blood, I have lots of leftover O positive antibodies that are killing them off, so I need O positive blood transfusions to keep the anaemia at bay. 

So that’s where I am right now, I am feeling positive about now and for the future. Let’s hope those pesky steroids don’t have other plans for me.

The first few days.

On that first day at UHCW I had a bone marrow biopsy (BMB) to confirm the diagnosis. A needle was passed through the bone in my pelvis to aspirate some fluid and a larger hollow needle was then inserted to gouge a thin tube of spongy bone marrow. I have since had a number of bone marrow biopsies. Once, a doctor I had come to know and like said that he often told patients that it was like a “dull ache”. After he performed a bone marrow biopsy on me I suggested that he have one himself so that he might be able to improve his descriptive talents.

The truth is, it hurts like hell. But in fairness to my doctor-friend, it is really difficult to articulate exactly how it feels. You first have to imagine how hard your pelvic bone is… they don’t really have much give. They are packed to the brim inside with spongy bone marrow. When someone inserts a needle into it, and extracts that marrow, it feels as though a vacuum has been created and the hard bones are bending and being sucked in to compensate. Does that make sense? It’s the best I can do.

For that first BMB (and every single one thereafter) Matthew was there squeezing my hand while a young and lovely SHO called Simon attempted to distract me by talking about television, America and our engagement. But I saw right through it and couldn’t really focus on anything but the pain.

The rest of the evening passed with bouts of crying, periods of silence and attempts to reconcile ourselves with what was happening. Matthew often says how I held it together the best in that first week, but in hindsight I think I honestly didn’t believe it was all happening. I think for perhaps the first six weeks of my illness, nothing really affected me because I didn’t believe it was happening. I still thought I had a leukaemia, not the leukaemia, remember? 

Mum, Dad and Katherine left around 9pm but Matthew stayed with me and barely slept in a reclining chair. He set up the hospital television, paying £50 for the full package and £20 phone credit. I drifted off to sleep early having not slept for days, barely waking for the regular blood pressure checks, fluid bag changes, IV antibiotics, blood transfusions.

The following morning I woke at around 9am. “Day two” I said to Matthew darkly. Soon, a porter had arrived at the door and was explaining that I should be going for a heart scan. Without changing, with greasy hair and dirty clothes, I was advised into a wheelchair and wheeled halfway across the hospital grounds for an ultrasound of my heart, feeling really self-conscious each time we passed visitors and staff in the corridors of the enormous hospital. The sonographer clicked away, taking hundreds of measurements as I lay on my side, naked from the waist up and with cold jelly all over my breasts. Matthew sat looking concerned in the corner of the room and I wondered if this was a routine test or if they also suspected something was wrong with my heart. That’s how I felt a lot during those first few weeks. There was a buzz around me, a rush to get my treatments started, to get all the right and relevant people to see me. To save my life as quickly and as efficiently as possible. 

The same consultant I had seen at George Eliot, who had given me the diagnosis, came to visit later that day. She explained a lot about the chemotherapy treatment, the timescales, what I should eat and drink, how to feel normal throughout all of this. She wrote her mobile number on a napkin and told me to text or call her any time.

The next day my family once again came to see me. My brother had driven back from Brighton where he was studying at university. My extended family had also started to get the messages of my diagnosis too. I got a drunken phone call from my cousin Marc, saying that in a years time we would look back and laugh and that we would all get pissed together and they will never forgive me for worrying them all so much. The texts were flooding in, aunties, uncles, cousins, friends, friends of my parents, friends of my friends parents. It was so overwhelming that when my battery died I didn’t charge my phone for days. My best friend Ellis came to see me that day too, she brought face cream and makeup wipes. We were wearing similar blue polka dot tops when she arrived. She said that she had told herself that she was not going to cry but then completely lost it as she entered the ward. We mainly just hugged and said “what the fuck” a bit.

By Thursday I was desperate to have a shower. Matt arrived early and after my drips had been disconnected, he helped me to wash my hair and shave my armpits. I had already began to sense a change in our relationship since our engagement – but this was something new. Having your fiancé wash your hair and body, feeling totally vulnerable, with no hint of sexuality but just complete care and tenderness, is something that really changes a couple. I realised there that he would prove himself as the man I knew he was through this, that he was in this with me and was going to be my rock. 

Later on Thursday I was moved from my private room to a bay in a four-person ward across the hall. I am not going to lie, I was furious. In the two days I had been there, I felt like I was finding my feet. I liked having an en suite. I liked my privacy. I liked having my own fridge. I liked having my family come to visit out of the normal visiting hours (It turns out that haematology and oncology wards rarely comply with visiting hour rules anyway). I think I was remembering the sleepless night I had had on the acute medical ward the night before I was diagnosed, which had been full of five elderly women who made inexplicable sounds throughout the night. 

My bed was opposite the communal toilet, and there was no door between the beds where we slept and nurses station in the middle of the ward. The patient buzzers sounded constantly and slowly drove me mad as I sat seething behind the curtain that I had pulled around me to shut the world out. There were three other women in the bays. One of the women was called Sylvia and deserves a post all of her own. The second woman was deeply tanned with platinum blonde spiked hair and neon orange nails. She made jokes about the staff and gave them nicknames that stuck for the following six months of my intermittent admissions. I never saw the third woman in the bay next to me, but that Thursday evening Ellis, my mum, Matthew and I heard her have an enema and a subsequent explosive bowel movement with only a thin blue curtain to separate us. Matthew was sat closest and his horrified face only served to set us up in a fit of hysterics. I think it was the first time any of us had laughed in days, and the lightness felt good. 

My diagnosis and the hours that followed.

“What do you think is going on?” a kind haematology doctor said. She reached out and held my hand with her own cold hand. “Do you want me to spell it out to you?” she asked. I nodded. She crouched down next to the bed and considered me closely, before saying softly “It is a leukaemia”. 

I swore loudly.

I didn't know what else to say. “How long have I had it?” I asked, searching for something to fill the silence. “Not long” she replied, “maybe a few months or weeks. Do you want to call your family?” I said I would after I had been to the toilet, and when I returned they had drawn the curtains around my bed in the middle bay of the six-person all-female acute medical ward where I had not slept the previous night.

I sat behind the curtain, listening to the breakfast being served, and Paloma Faith singing on the radio. A leukaemia. The phrasing fell oddly on my ear. In retrospect, my consultant probably said “a leukaemia” because she has experience treating many different manifestations of the disease. But to me leukaemia was leukaemia. And I must have a leukaemia, not the leukaemia. Not the leukaemia people die of. Not real leukaemia. 

First I rang my fiancé Matthew. He was working from home so answered his mobile quickly.

“Can you come to the hospital?” I asked.
“Is everything alright?” he replied.
“No, not really. Just come to the hospital now.” And I hung up.

Then I called my mum, she answered cheerily and asked if the doctors had been round that morning. I asked her to come to the hospital. She asked why. I said I would tell her when she got there. She said that she wanted to know if something was wrong. I could sense a losing battle so I said, with a voice beginning to crackle and increase in pitch, “I’ve got leukaemia”. She began to cry and said she would be there as soon as she could.

Then I sat alone for 20 minutes behind the curtain of my bay, listening to noises of people coming and going. A few weeks or months. I thought about what I had been doing over the last few weeks and months, wondering when that precise moment was. I thought about the day almost exactly one month before when Matthew proposed on a whale watching tour boat which we’d taken from Cape Cod during a holiday to Boston, Massachusetts. I’ve got a feeling that that day Karma and Mother Earth had a chat and decided that things were going a little too right for me lately – I had only one year to complete on a midwifery degree which I adored, Matthew and I were moving in together and now, we were getting married. Something had to give.

Minutes after our engagement while on a whale watching tour off Cape Cod

After arriving home I came down with a pretty bad case of tonsillitis. This sucked more than usual because I wanted to be showing off my antique 1920s 18ct gold sapphire and diamonds engagement ring. I wanted to enjoy attention and awe being lavished upon me. Instead I was at home in bed with my head in a bin. I’d had tonsillitis before so I knew the drill: a few days of agony, antibiotics, get well soon. My GP prescribed some penicillin and I dutifully took my tablets with fistfuls of painkillers while lying in bed feeling sorry for myself. But the course of antibiotics finished and I was no better so I dragged myself back down to the GP who prescribed a second course, this time of erythromycin. Again, I was a star pupil taking my tablets exactly as prescribed. This will do it, I thought. A few days later there was blood in my mucus so I called the GP who said he thought I may have Quincy and that I should go back to get checked over. At this point I had lost over a stone in weight having lived on a hearty diet of about nine grapes all week, I was pale, dizzy and breathless and almost passed out that morning in the shower. I explained all of this to the doctor who politely told me I didn’t have Quincy because I could open my mouth thank-you-very-much and goodbye. So home again, back to bed, casually ignoring the warning of the addictive nature of codeine on the co-codamol packet. I carried on taking my antibiotics. I needed to get better because that second weekend was my sister’s hen do and as Maid of Honour I had planned the whole thing complete with luxury cottages and a nudey man. I shouldn’t have, but I went. A lot of it was spent asleep and I drank only water. Everyone was really worried about me and on the Sunday afternoon my mum suggested that on the way home we stop at A&E. I refused as I felt exhausted after the weekend and felt convinced that we would have a five-hour wait to be told that I did indeed have a bit of stubborn tonsillitis. I just wanted to go home and go to bed, with the caveat that I would go the following day if I didn’t feel any better.

The next day I felt like death. I could barely dress myself. Matthew came over in the early afternoon and we lay in silence, too exhausted to speak, with him stroking my hair, until my mum arrived home early from work and took me to A&E at George Eliot Hospital in Nuneaton, the same hospital where I was also completing my midwifery training. We were waiting for around five minutes before being called through to a small side room with a bed, a chair and a sink. The door was propped open and I could hear the bleeps of medical machinery and the friendly voices of nurses cooing over the sick and injured. A small red-haired nurse arrived to take my vital observations as I sat on the trolley-bed. An ENT registrar arrived to check me over. He suggested that I may be suffering with glandular fever and prescribed IV antibiotics and fluids. I felt grateful and relieved at the prospect of finally feeling better. He inserted a cannula in to my left arm and took some routine bloods. A short while later, he returned with more blood bottles and a concerned expression. “I wasn’t going to but I am going to take some more bloods.” It transpired that the a&e department had a haemocue machine which has spat out a haemoglobin level of 66g/L. From my training I knew this was crazy-low – I had looked after women with 2-3 litre haemorrhages during their births and they hadn’t had a haemoglobin count as low as mine. Bloods were sent to the lab and I was wheeled around into a bay in the main A&E department. The curtains were open and everyone seemed to be moving very quickly. My IV antibiotics were started, I was helped into a hospital gown by my mum and fiancé and wheeled round for a chest xray which was over in a blink. Then I was told that the medical registrar would be along to examine me. When he arrived with two students in tow I recognised him as Dr Patel, a specialist in endocrinology and diabetes whose clinics I had attended as part of my outpatients placement. The two medical students, one male and one female, were nervous as Dr Patel is a forthright character who was obviously putting them through their paces. The female student took charge of my examination, all the while searching for nods of direction and approval. I answered all of their questions easily and seemed to pass the exam. I felt happy, there was nothing wrong with me! In hindsight it would have been much better if there had have been something to explain my seriously dodgy blood results which had since come back from the lab (my haemoglobin was actually lower at 52g/L and my platelet count was in the 30s). Dr Patel said that he thought I may have a virus which was attacking my bone marrow (the first clue which went completely over my head) and that my blood had been sent to Univeristy Hospitals Coventry and Warwickshire to the specialist haematology team (second clue – whoooosh). They admitted me and transferred me to the Acute Medical Ward. My throat was still in agony so I begged for some IV paracetamol which mercifully they supplied. I read my book for a while and text a few friends about my ordeal before settling down to sleep. During the night I was woken by a medical registrar who informed me that the following day I would be transferred to UHCW for further tests and to take a tablet which had been prescribed and recommended by one of the specialists (third clue – whoooosh).

The next morning, having barely slept, the haematology doctor had arrived with a nurse wearing a turquoise tunic. As a student midwife at the same hospital I knew her particular uniform meant she was a specialist in something. She stood at the end of my bed looking sad and not really knowing what do with her hands. The doctor introduced herself as Jhansi Mudanna, a consultant haematologist, and began by asking questions about how I had come to be at George Eliot, why had I gone to A&E? where did I live? were my parents around? did I have brothers and sisters? what did I think was going on? To this last question I explained that Dr Patel had mentioned the possibility of a virus attacking my bone marrow. “It is a little more serious than a virus” she said. That’s when she told me about the Leukaemia. “...but I don’t want you to worry as there is a lot we can do.” I decided that I liked her right away.

After a while a nurse arrived to change my fluids which had been running continuously all night. While she was fiddling with the infusion pump, I saw Matthew’s shoes below the curtain. He came into the bay and sat on the chair. I couldn’t look at him. I wanted the nurse to fuck off but she was taking her sweet god damn time. I held his hand, waiting for her to leave. When she did, I told him straight and we cried and cried and cried.

Before my mum and dad could arrive, I was transferred by ambulance to University Hospitals Coventry and Warwickshire. The paramedic had a German accent and talked to me about the most trivial things until I had to seriously resist the urge to punch him in the face. I arrived on ward 34, the haematology ward, and was placed in a side room with beautiful stencils of birds, foliage and the moon all over the walls. We waited for a while and after around half an hour my mum, dad and sister arrived. My mum and sister were in floods of tears but my dad just hugged me tightly and said simply “you’re going to be okay”. I still felt numb and didn’t cry. It felt like it was happening to someone else and I was just the stunt double who was lying in the bed while the final lighting checks were done. I was sure I would be told to go so they could get in the girl who really has leukaemia, poor thing.

Someone brought a baked potato with beans which I prodded a few times before a young-looking registrar, Francesca, a specialist nurse, Yvonne and an SHO arrived. Francesca was friendly and wise but I was bombarded with information about the type of leukaemia, how it was treated, how chemotherapy works, nutrition, hair loss, infertility, psychology, clinical trials. I don’t think I took the vast majority in but I remember somewhere among the melee she looked at me seriously and directly and said “our aim is to cure it”. And that really stuck with me. This could be cured. There was a cure. That had happened before. That could happen to me. There was reason to hope. I think I made the decision there and then that I wasn’t going to let myself become depressed. The little information I had gleaned from the copious amounts of information I had been given was that at that point we didn’t know what we were dealing with. Until after the first round of chemotheraphy, it would be difficult to deduce anything. So there was no point dwelling on prognosis statistics or fear. It was a scary prospect, the thought that I could die. I suppose the thought that you could die is always scary, and always present. Of course, I was facing my own mortality a little more directly than most, but at that time I was at the very start of such a long journey that my mortality seemed as peripheral and as abstract and as in-the-future as anyone else’s.

Dear Florence Kleiner,

I found your blog tonight, it was exactly the sort of thing I was looking for and the sort of thing that people like us need. I was diagnosed one month after you. A lot of people told me to blog through my experiences but I couldn't face it. You must have been pretty good at thinking straight when everything around you was so twisted. I am sorry to hear that your disease became too big in the end, you sound like one of the good ones. You left your mark, and lived your life deliberately. It seems that that continues. I am sending you peace and love inside your nebula, wherever that may be.