Fear Of Relapse.

I began writing this blog post some time ago. I stopped short of publishing it because the post was all about the Fear Of Relapse, and at the time that I wrote it I was so convinced that I had relapsed that I thought it might be in poor taste to post it, only to then have to write a follow-up to say that actually I wasn’t a manic hypochondriac and that yes, the leukaemia was indeed back. (It’s not).

That week that I was particularly convinced that I had relapsed actually culminated in tears, first of terror and later, of relief. On the friday afternoon I visited my GP for a number of reasons: a UTI, oedema and HRT (don’t get me started). I was sent for a blood test at my local hospital as the doc wanted to check the swelling wasn’t due to nephritic or nephrotic syndrome. The idea of a non-routine blood test raised my anxiety levels but I thought, okay they’re not thinking leukaemia, they’re thinking kidney disease. Leukaemia folk know: sometimes you hope for kidney disease. 

They told me to phone a week later for the results but I phoned first thing Monday morning because I knew I would drive myself mad not knowing. The receptionist said the results were back but there was no note to say the doctor had read it, so she couldn’t give me the result and asked me to phone back the following morning. On Tuesday morning at 9am I phoned once again and asked the receptionist if I could have my results, to which she replied “it appears you have some abnormal results, the doctor will phone you this afternoon”.

Stunned silence. Heart racing. Feeling sick. Stomach in knots.

“No, the doctor needs to phone me right away, I might have leukaemia.”

The receptionist seemed suprised but agreed to have the doctor call as soon as possible, so for the next few hours I paced the living room with the phone in my hand, periodically crying, phoning Ellis and frantically texting Matt at work.

At 1pm the phone rang:

“Hello there, it’s Doctor Lacking-Empathy here, I believe you’ve asked for a call back?”

“Err, yes. I need my blood test results.”

“Okey dokey, which blood tests were those?”

“Well I had quite a few…”

“Ah yes, you’ve had the full works haven’t you?”

“Mmm.”

“Soooooooo… your cholesterol is fine.”

“Right.”

“Your magnesium levels are fine.”

“Well, actually..”

“Your kidney function is great.” 

Shit, which ones are abnormal then? I think

Eventually I cut across him…

“What’s my hb?”

“Your hb is fine, 123.” I start to breathe again. 

“And my platelets? WBCs?” I ask,

“Yes all fine. The problem seems to be your liver. The levels are very elevated. Any idea what that could be?” (I am serious, that is what he asked me…)

“Well I had liver GvHD last year, could that be back?”

“Yes possibly.” Fuck, that means another admission. More steroids. Hopefully they work again.

“What’s my bilirubin?”

“Your bilirubin is normal.”

“Huh?”

“It’s your ALTs and ASTs that are raised.”

The penny drops. I cry with relief.

“Ohhhhhhhhhhhhh. That’s fine! Don’t worry about that! Jesus, I have been worrying that I had relapsed all morning.”

“Well, when they are are raised it indicates liver damage.”

“I know. The hospital knows. They said it will take ages, years even, for those levels to go back to normal.”

“Yes well the problem is is that we don’t know whether these levels are going down or not because we don’t have access to your other results.”

Silence. 

“Do you want me to phone and find out for you?” I ask.

“Yes that would be great. I’ll leave a copy of your results at the reception for you to collect.”

And so I did collect my results and I did phone the hospital and my liver results remain on a downwards trajectory. I don’t have kidney disease, I don’t have leukaemia, and I never did find out why my feet are swollen. 

What I have learned from this experience is that GPs and their receptionists should be more sensitive when giving potentially devastating news, that they should at least know why they are phoning you and should be prepared to convey said potentially devastating news but mostly I have learned that if you want a job doing, do it your bloody self. 

While I can laugh about the ineptitude of my local GP surgery now, the truth is that every single day I have a moment where my heart sinks and I think “is the leukaemia back?” Every single day. It might be because I woke up late and I wonder why I am so tired. It might be because I find a bruise and can’t remember what I bumped to make it appear. It might be because I have a sore throat and convince myself that history is repeating itself. There is always something. 

The signs and symptoms of leukaemia are subtle and insidious. Bone pain. Dizzyness. Breathlessness. Lethargy. Easy or excessive bruising. Nosebleeds. Bleeding gums. Fever. Pale skin. Frequent infections. They’re the sort of things, had you never been diagnosed with leukaemia, you would brush off. To me, they cause panic and absolute terror. 

Some days I reason with myself… “Grace, you’re light headed because you just lifted a huge box above your head and you’ve only eaten an apricot”. Some nights I lie awake, convinced that the backache is leukaemia cells spilling from my pelvis into my bloodstream. 

I don’t remember a time before I felt constantly anxious. It feels like when you’re leaning back in a chair and you lean too far and almost fall but catch yourself at the last second. It feels like you’re on a swing and right at the height of your arc there is a jolt where you fall faster than the chains and then they snap straight again as you fall downwards. It feels like a persistent, predictable, nagging sensation which is always there but can also leap forward unexpectedly, drowning out everything else.

Over the last few months, the Fear Of Relapse has got worse. Once you hit the one-year-post-transplant mark, the risk of relapse decreases significantly. And each year after that there is a steady trajectory downwards. In the first year after my transplant, my aim was to get to a year. Be alive one year on, that’s the goal I set for myself. Anything beyond that felt too big to handle. I couldn’t bear to think about the rest of my life and how it may or may not pan out. Whether I would return to midwifery. Whether I would get married. Whether we would find a way to have children. One year felt like an achievable goal. And I did it. And I celebrated with all of my favourite women in a beautiful mansion near Norwich.

Since then, I feel like I have lost my focus. I am muddling through the weeks, unsure as to whether I am sick or well. I don’t feel like I identify with the cancer crowd so much anymore… (I guess I never really felt like I did, but those feelings of not being enough, of undeservedness, are thoughts for a different post). It seems unfair for me to be moaning about my state of affairs when so many did not get this far, did not get to celebrate their first rebirthday. It seems unfair of me to be feeling sorry for myself when many are still trying desperately to achieve remission, to have their transplants in the first place. I simply don’t know how to feel, or how I am expected to feel.

Noone wants to hear about it anymore. I hear myself talking about it and I know what they’re thinking. Can’t we just forget about the whole horrible thing? But it consumes me. I don’t know what else to think about. I try different hobbies, like going to the gym, or walking, or sewing but I just cannot switch off from the thoughts that one day it might return and that when it does, I might not be so lucky second time around. 

In May, Matt and I went to Italy on our honeymoon. We had an amazing time, eating the most delicious food, luxuriating in thermal spas with pools of water that smelled of sulphur, having full body massages, walking around churches and ruins, driving around the whole perimeter of beautiful Lake Garda, having gondola rides in Venice, licking gelato, gelato, gelato. I thought about cancer constantly. I’d been so paranoid the week before we were due to go that I’d gone to the haematology clinic and insisted on a blood test and a throat swab. The result were clear but every twinge, every cough, every headache was cancer. 

A few weeks after I first began writing this post, something happened that would elevate my anxiety to levels of near solar altitude. NHS England announced that it would no longer routinely fund second stem cell transplants. It is devastating news for the cancer community. For me, the year-post-transplant milestone was about more than survival odds, it also meant that if the cancer came back there were options. There were treatments we could try and I could potentially have a second transplant if my doctors thought it was the best course of treatment. Now, if my leukaemia does relapse, the road ahead would be full of the sorts of difficulties and complications that no-one dealing with the shitstorm that is cancer should have to concern themselves with: funding, money, permission. Please Jeremy *unt, I would have to ask, is my life worth it? 

With my particular diagnosis, acute myeloid leukaemia with complex karyotype and 5Q deletion, things happen rapidly. There is no time for crowdfunding. There is no time to submit a special request for funding. With an acute leukaemia, your treatment needs to have started yesterday. 

NHS England writes that treatments may not be offered “because there is limited evidence for how well the treatment works in those patients or because the treatment is very expensive and doesn’t offer good value for money for the NHS.” However, in a petition signed by more than 18,000 people, including a letter signed by 30 experts in the field (including Professor Charlie Craddock MBE, my consultant and absolute darling) which asserted that “evidence suggests that there is a one in three chance that [patients undergoing a second transplant] will achieve the milestone of five year survival”*. In other words, second transplants are actually curative for 1 in 3 people. I would say that that is good value for money.

If it does come back, my treatment options will no longer be just a decision made by some very clever people who have studied for many years and know exactly what has the potential to save my life... it will be a decision made by some posh middle-aged white man holding a chequebook. 

If Jeremy *unt thinks he’s going to save a few bob by killing off a few relapsed leukaemia patients, then he might want to consider how much extra will need to be spent in mental health services for non-relapsed patients who can barely navigate day-to-day life because they are so gripped with fear. 

Please, I urge you, if you care about people with leukemia, email your MP using this link. It is imperative that we make sure Jeremy (okay, Hunt) takes notice, and the best way to do that is to ensure MPs address him directly. Thank you.

*Orti et al (2015), ‘Outcome of Second Allogeneic Hematopoietic Cell Transplantation after Relapse of Myeloid Malignancies following Allogeneic Hematopoietic Cell Transplantation’, Biology of Blood and Marrow Transplantation.

I always believed in futures (I hope for better in November).

I am very lucky. My entire life I have been told that if I want something, with perseverance and hard work, I can get it. I have known no limitations as to what is expected of me. I could have done anything I wanted, I could have been anything I wanted. I have been provided with the opportunities to make any number of decisions to lead me down one path or another, to wherever I wanted to go.

And then I got cancer. 

You might think that what I long for (and what I mourn) are the opportunities I am no longer able to seize, for example, I haven’t been able to finish my degree, or qualify as a midwife. But what I mourn more is the forward-thinking perspective on life that I used to take for granted. I used to plan things. I used to look into the future and see a long expanse of time in which to Get Shit Done. If I do A and B I will arrive at C. And I have plenty of time to do A and B. It was a neat and satisfying arrangement.

As cancer patients, we are suddenly told to live in the moment. People write it as watermarks over photos of some tanned and blonde person running on a beach somewhere in the southern hemisphere. We are told to feel everything profoundly and experience everything fully. It seems like the ideal and idealistic way to experience the world, to gain the most from every possible moment. But when the expanse of the future you have always known grinds to a halt, and all you are left with is now, and everything else seems vague and distant and out of reach, and you have no choice BUT to live in the moment, you don’t book a round-the-world ticket and go screaming into grand canyons and jumping out of planes; instead it leads to a kind of lazy fatalistic hedonism in which you find yourself sat on the sofa for the third day in a row, drinking a glass of wine and taking alternate bites from a chicken leg and a bar of chocolate. Because fuck bikini bodies. And you find yourself spending hundreds of pounds online shopping for lemon juicers and calvin klein tshirts and too many cushions. Because you can’t pay off your debts when you’re dead. 

Cancer strips away the future, and with it, consequences. 

When you realise you have no control over the future, you don’t stop trying there is simply nothing to try for. There is no way of trying. You can’t sit and grit your teeth and will the cancer into non-existence. You feel like an vessel for chemo and steroids and pain meds and junk food and blood products and antibiotics and stem cells. But you’re present present present. Don’t think about the future right now, it’s too much to handle. But don’t think about the past because there are hundreds of things you would have done differently.

My perspective on these things, on the future, and on how I relate to the present moment, change from one week to the next. There were times during chemo where I was more sure of myself than I have been since my transplant. And I guess that’s the nature of AML, the fact that they won’t say I am cured for four more years. This remission is limbo. It is frustratingly impermanent.

Some moments make me take a metaphorical step backwards. I call them snapshot moments. They are the instances in which I feel that if I could have seen a photograph of that moment in September 2014 or January 2015, those times when all seemed lost, when the future was not just out of reach but entirely absent, that it would have been so much easier to get through the long nights with only terrible thoughts, the beeping of an infusion pump and the night nurses, those angels, for company. Those moments: a year post transplant, my wedding day, climbing a mountain in Riva del Garda... they would have got me through. Instead there were unknown unknowns. It is that lack of perspective that is perhaps the hardest thing about having cancer, knowing that time didn’t stretch in only one direction would have changed everything.

5 ways to be a good friend to someone with cancer.

1. Get in touch.

This may be an obvious one, but get in touch. Call them, send an email, send a text, send a card, send a carrier pigeon (although if your friend is hospital-bound the latter might be a slight infection risk). Even if you don't know what to say, just say this: "I don’t know what to say, but this fucking sucks". If you still haven't said anything, and it's six months later, it's not too late. It's never too late. In fact it can be better because they are likely to be very overwhelmed at first and people tend to drift away. Your message could be just the thing to get them through a rough day. They may not reply (I didn’t always), but messages of love and support were what got me through. Do not underestimate the importance of letting someone know you care.

My recommendations for cards: 

Emily McDowell empathy cards (also available through Not Another Bunch Of Flowers and The Curious Pancake). Also look on Etsy, Not On The Highstreet and Paperchase for cards which definitely don’t say "sorry you're feeling under the weather".

2. Be there.

If you can, physically be there. Go and watch TV with them, make your way through box sets, chat about what's going on beyond the four walls they are contained by for weeks at a time. Go with them to clinic appointments, check ups, chemos. I thought I was pretty strong during my treatment, but as I look back I realise it is only because my friends and family were there to keep my mind off things. 

3. Listen.

Sometimes, distraction is not the best therapy. Sometimes, your friend will need to talk about what really scares them. It will be hard to listen to and you will probably both end up having a good cry but it is necessary. I needed to talk about things, and I ended up having sessions with a psychologist who I could talk to about all the awful things that I couldn't say to my family and best friend because it was too much. But if your friend has noone to offload to, please allow yourself to hear it. You don't need to say anything, you don't need to tell them that it will all be okay, you don't need to tell them that you understand, just listen. 

4. Don't romanticise it.

Some people, often people who have never been affected either directly or indirectly by cancer, can romanticise it. They have probably watched Stepmom or The Fault in Our Stars. They might think that there is a certain morbid glamour to it. They might think that for a day it might be nice to be the centre of attention. They may have imagined themselves being ill and idealised the notion of being an inspiration to others, plucky and full of courage in the face of adversity. Spoiler alert: cancer isn't like it is in the films. Cancer is painful and traumatic and terrifying and life-altering and obscene and visceral, but cancer is not glamourous. While I think that I have handled my cancer fairly pragmatically, I also understand that dealing with cancer is a unique and deeply personal experience. I can not compare my experiences to someone with a terminal disease. I can not compare my experiences to someone with tumours. I cannot compare my experiences to someone who might lose a limb, or a breast or an organ. Thinking you understand what someone with cancer is going through is the first step towards being a very shit part of their support system.

5. Don't expect them to support you.

This is undoubtedly a difficult time for you. However, it is important that you do not make your friend feel like it is their responsibility to support you or shield you from the more troubling aspects of their experiences. Expecting them to be happy and positive and strong and brave and determined and all the other cancery buzzwords that cancer patients are expected to be is in fact a selfish act. Ask yourself, why do you want them to be so chipper? Is it because it makes it easier for you to bear? Of course, it is important to encourage a positive mindset because the depths of depression are not a good place for someone to constantly dwell, but it is necessary for them to explore those more sinister feelings and deal with them before they become too huge to handle. Generally speaking, you should encourage them to just go with however they are coping on each particular day, and allow them to really feel their emotions whether positive or negative.  

Shipwrecked.

Most of the time these days I am absolutely fine. I don’t usually sit around moping about cancery stuff. I do, however, live in constant fear of relapse. With every bruise and every back ache my stomach flips as I wonder, could it be back? 

As more time passes, I become less aware of my cancer and other things fill my mind. Wedding planning, getting back to university, plans for the summer, family, training Leo, decorating the house. But every now and then something will happen to uncork a flood of memories and I will be overwhelmed with those same feelings of terror and it’s very difficult to know how to respond to that.

I read something recently on the subject of grief, with the most perfect metaphor in the form of a shipwreck. As I read it I realised it could be applied to traumatic experiences such as a cancer diagnosis.

“ ...you'll find it comes in waves. When the ship is first wrecked, you're drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it's some physical thing. Maybe it's a happy memory or a photograph. Maybe it's a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don't even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you'll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what's going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything...and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it's different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O'Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you'll come out.

Take it from an old guy. The waves never stop coming, and somehow you don't really want them to. But you learn that you'll survive them. And other waves will come. And you'll survive them too.”

I think right now the waves are still 100 feet tall, and I don’t see them coming. It might be someone showing me photographs of their child and I realise I may never have children. Today, it was a phone call. I am learning that I will come out the other side, that everything is going to be okay, that the ship may have been wrecked but that I was lucky enough to survive the storm.

Happy (re)Birthday!

My immune system is one year old! 

Tomorrow is my hen party with all my favourite people. If I could have had a glimpse of what my life would be like one year on, I wouldn’t fear a single thing. I can’t quite believe it. It is such a milestone. One year down. Four years to go until I can say I am cured. What a year it has been.

Today marks one whole year since we sat around for hours, nervously waiting for the moment when the nurse would come along with a little bag of reddish yellow cells that had been extracted from my sister’s arm a few hours earlier. Transplant day. Day one. My (re)birthday. 

The moment itself was anticlimactic. The process was no different to the many bags of red blood cells, platelets, chemotherapies, fluids, antibiotics, antifungals, and everything else that had dripped steadily into my veins over the previous 6 months with the ultimate aim of “making me better”. But this felt different. The potential energy was palpable. 

At that time, I think the fear had largely dissipated. I was most fearful throughout January and would cry myself to sleep most nights, but by late February I felt much calmer. The night before the transplant I wrote a letter to Matt and sealed it in an envelope. I don’t think he knows to this day that I ever wrote that letter. It said that I loved him and that I was lucky to have met him and that if things didn’t work out how we were all hoping that I was thankful that I had loved someone so fully, and been so loved in return. I placed the letter at the back of my journal (where, as far as I am aware, it still remains) in which I had been writing poems, quotes and song lyrics during the conditioning chemotherapy during the weeks before. I remember that song “take me to church” by hozier was everywhere and I wrote the lyrics out over and over as an attempt at mindfulness, a technique the psychologist had taught me at Coventry which rarely worked. 

Mindfulness, as I understand it, is the awareness and acknowledgement of the present moment and of one's surroundings. I have forgotten if I have already written about this, but I had a few sessions with a psychologist who said that she often recommends the process to cancer patients as they have a lot to think about and that practising mindfulness can be a calming influence. She suggested the example of washing up: instead of worrying about the future or the “what ifs”, I should instead focus on the way the water feels on my hands, the temperature, the smells, the sounds etc. 

To be honest, I thought the whole idea was a bit stupid. It’s like trying not to laugh in church: the more you try not to do something (in this case, “think”) the more you can’t help doing it. You can’t tell someone that they might die and then tell them not to think about it. And anyway, I said, I’ve got a dishwasher. 

I don’t think I could ever not think. The majority of my life happens inside my own head. I remember having a conversation with my friend Emily about the concept of reality: most people consider the things we do and see and feel and smell and touch to be the benchmark of “reality” when in fact, much of what we actually experience happens largely inside our own heads. Who is to say that that is not reality? 

This actually invokes one of my favourite lines from literature:

“Of course it is happening inside your head, Harry, but why on earth should that mean that it is not real?”

We filter these subjective experiences in our minds and transform them into objective reality, but it is the processes that allow us to reach logical conclusions about reality that fascinate me. Death is certainly real, but so is fear, so is terror, so is love, so is desire. To me, telling a cancer patient to not think is one of the worst things you could tell them, because to them there is a lot of living to do.

If I could write a letter to my former self just after I was diagnosed, the one who has just been told the news, the one sitting in that hospital room, hearing nothing that was being said, hearing only the ringing in my ears, the resonating sound of the aftermath of an atomic bomb, I would say this: 

There is nothing anyone can say, myself included, to prepare you for what is about to happen. There are no comforting words for the pain you will feel, the emotions that will rage through your body, the overwhelming desire to LIVE that will possess you like you never could have imagined. But if you find yourself lying in bed in the early hours, silently crying, terrified, needing reassurance (and you will), here is what I would say...

Love yourself. Believe in the extraordinary things your body is capable of. Doubt is normal... but don’t let it overwhelm you. Take it in, take everything in, but don’t let anything become you. Just go with it, you are the flotsam riding through white water rapids and over waterfalls who will wash ashore, apparently unaltered but entirely changed. Good things will come from this experience. Every sunrise is the bud of a bud, beautiful and significant. Make more of an effort to see it, really see it. Everything is profound, but it won’t last forever. 

A disclaimer.

I wanted to make a quick disclaimer about the content on this site. 

Everything written on this blog is either my own opinion, 

or, conclusions and recommendations based on the best available scientific research (to the best of my knowledge) or the trusted expert opinion of health care professionals.

I feel it is necessary to write this because recently I have come across a number of instances in which people who have a widespread influence, particularly through social media, who have no discernible scientific backgrounds, espouse the pseudo-scientific benefits of eating this or not eating that, without citing any scientific research or resources.

I approach most things with a healthy amount of scepticism and I believe strongly that you should always question everything that is likely to influence you, whether positively or negatively. I wrongly assumed that everyone would weigh up everything they are told with the same rational thinking and reasonable doubt, and yet comments on instagram posts, facebook statuses and youtube videos tell a wildly different story. Many people blindly believe what they are told by someone who posses no specialist knowledge on the subject, and are insanely defensive of their favourite instagrammer or youtuber if anyone questions it. Indeed, two of my most hated sayings are “apparently…” and worse, “they say…”. They are covers for lazy ignorance… who are they? why should we trust what “they say”? 

I believe it is the responsibility of anyone with a certain amount of putative authority or influence to be honest and informed, and to provide evidence of any recommendations which may influence the health and wellbeing of their audience. 

Therefore from now on, as the reach of this little blog grows, I will endeavour to provide more links to scientific, evidence based research and expert resources. In the meantime, check out the link bar at the top for information from charity and reputable organisations (with the exception of Wikipedia, but I find it useful if you look at the references for original sources), and perhaps more importantly, question everything you read, do your own research, and don’t believe what “they say”.

I was a rock.

Swallow Falls, Betws-y-Coed, 2013

I was a rock 

I was a rock
&
had edges like teeth
my mouth swallowed whole
gallons of rain

the cold cracked me open
&
I absconded with the salmon
from their freshwater birth rivers
which softly smoothed and soothed me

now I am a pebble

&
washed up on an unfamiliar shore
buried for years
anticipating the unremarkable day

I am flung back into the sea

I am with the skeletons

I am crushed beneath the weight of an earth 

once again

to be a rock, once again

My Treatment: part four.

Chemotherapy round three - FLAG-IDA

As Christmas approached I was acutely aware of how much of autumn I had missed. Autumn is my favourite season, and it was very strange to not be a part of it. I managed to have a couple of weeks of normality, buying a Christmas tree, decorating the house, seeing friends and family, etc. Then, on 15th December I was admitted again for my third and final round of chemo, another dose of the FLAG-IDA protocol. Again the admission and administration of the chemo was uneventful and I was discharged home for my recovery and to spend Christmas with my family on 21st December. The next day on 22nd December Matt and I attended an appointment at the Queen Elizabeth Hospital in Birmingham to discuss my upcoming stem cell transplant and the date was set for 2nd February 2015.

The appointment was terrifying. They talked me through all of the possible complications, which included: sickness, diarrhoea, mucositis, alopecia, infertility, low blood counts, infection, bleeding, viral reactivation, Graft-versus-Host-Disease, death (15-20%) and relapse (30-35%). The chance that my leukaemia would be cured (i.e. the chance that I would be alive and cancer-free 5 years after my transplant) was 50%. 

We walked the ten minute walk to Ellis’s house almost without talking. We were both completely shell-shocked. We had never concerned ourselves with statistics because we both knew that anything you read online is probably wildly inaccurate, out of date and only relevant if you’re an entire population, which I am not. I am one person. One person with a 50/50 chance. As much chance of dying as of living… but crucially, as much chance of living as of dying.

Christmas came and went, I spent the day with Matt’s family and the evening at home with my parents and siblings. But two days later, on the 27th December I was at Matt’s house (which is now also my house but we didn’t live together then) and I began feeling unwell. I went and lay in bed for a few hours and I knew I was developing an infection. I checked my temperature and it was within the normal range but I was wrapped up in a dressing gown and fleece blanket and I was shivering. Matt rang the hospital and they advised us to go to A&E. I got there and my temperature was in the 40s. They diagnosed neutropenic sepsis and started me on IV antibiotics before transferring me to the haematology ward. 

I was subsequently in hospital for the next five weeks with numerous infections, and it wasn’t until recently that I realised how sick I actually was. My counts had not recovered after the FLAG-IDA so I struggled to fight any of them off. I had severe perianal soreness with generalised inflammation which no-one could get to the bottom of (pun not intended!) despite numerous CTs and MRIs. My blood cultures grew klebsiella pneumoniae, a nasty bacteria which caused me to develop pneumonia and a urine infection. My second Hickman line was removed, but further bloods and urine grew e-coli. I was given a smorgasbord of different antibiotics and anti-fungal infusions but I continued to spike high fevers. 

This was the time that everyone was worried about me. When people are worried about you they fuss over you a lot. When you have been in hospital for more than a few weeks, you don’t want people fussing over you and you start to rebel. I occupied myself for a whole week in January by having a passive aggressive war of attrition with my nurse over my fluid balance chart. Since my very first admission I had been responsible for completing my own chart - I filled them out all the time at work and it wasn’t a difficult concept to grasp. It kept me briefly entertained, gave me some sort of purpose and also prevented me from having numerous mind-numbing conversations every day regarding my piss. All the nurses and HCAs were cool with this until a new nurse, who was lovely and didn’t deserve my intolerance and grumpiness, obviously didn’t get the memo and proceeded to complete my chart herself. Rather than just telling her that I was happy to do it, like any normal person would, I chose to glare at her and convince myself that she was trying to make my life a misery. When she had wrongly completed the chart I would very deliberately cross it out and mark the correct measurements. I would bitch about how incompetent she was to my mum and sister. I would rage if she left the chart outside my door rather than at the end of my bed which is where I kept it. My mum would try and placate me and would say that she really wasn’t that bad. I became a bit of a monster. But never to her face, I might add, it was generally a lot of pouting and glaring and two-faced bitching. 

In fact, the only member of staff I have knowingly and deliberately been rude to was a HCA who, around the same time as I was having my battle with new-nurse, treated me like an infant on a daily basis to the point where I flatly refused to talk to her. Once, she came into my room after I pressed my call bell because I was feeling unwell. I was lying under the blankets shivering like mad, my teeth chattering, my heart pounding, feeling sick. She raised her eyebrows and in a mock-baby voice said “naughty girl, has someone got a temp-witure?”... “No.” I said defiantly, through gritted teeth. She left and returned with a thermometer, it read 39C. “Aha, I knew it!” she cheered triumphantly “you need to start behaving!”. I could have jumped from the bed and beat her over the head with that thermometer right then and there. I had been in hospital over new year, I had been lying in bed, close to death for week and she was telling me that this was MY fault?! That I was causing HER a problem?! She was absolutely infuriating. After that day, I spoke to her only when she asked me a direct question. I didn’t have time for her shit anymore. I was done with it all. 

After about four weeks, my usually happy and bubbly consultant had changed to someone with a concerned expression permanently etched on her pretty face. She referred me to a psychologist and a dietitian. The psychologist was wonderful, the dietitian not so much. Then it was decided that I would have a granulocyte “buffy coat” infusion. It is designed to transfuse white blood cells to help fight off the infections. As I understand it, they are not given very often but it became apparent that I wasn’t getting over these infections on my own and my counts were still stubbornly not recovering. 

A few days later I began to feel better and my temperature was stable and remained within normal limits for a week. Then at 38 days post-chemo my counts started to recover. By this time it had become apparent that my stem cell transplant would have to be postponed as I would need a couple of weeks to rest and recuperate before the super duper chemo before my transplant. I don’t really remember those days before I was readmitted at the QE for my transplant, I guess I was probably just happy to be at home, in my own bed, eating my own food and hanging out with my family. The last night before I went in I wanted to do something normal so Matt and I went to the cinema to watch The Imitation Game which was a wonderful but tragic film about Alan Turing breaking the enigma code in WW2. I figured being in a ‘dangerous’ environment such as the cinema was worth the risk because a) I was about to be admitted to hospital and b) there was a 15-20% chance of death in the subsequent weeks anyway.

Just a little time.

I’m back. Did you notice I was gone? Is anyone even out there?

I decided to take the month of December off from blogging. As you may have gathered from the last few posts, I was starting to dwell inside my head and a lot of issues which had been simmering simmering simmering began to boil over. I know it probably seems counter productive as this is supposed to be a blog where I can be candid about my experiences with cancer, but I didn’t feel like I was in a place to offer any advice or be of benefit to anyone. Right when my own issues were coming to a head I was knocked sideways with an avalanche of shit news relating to loved ones and “cancer” friends I have met along the way. There was crying and there were cuddles and I decided that I didn’t want to blog about it. 

I was (and remain) cancer free - but it was all around me. I needed to step away for a while.

I will write about it more when the times feel right, but for now I am working on a few posts about my stem cell transplant, replying to emails, and planning our wedding with a vengeance. 

2016 doesn’t feel like a new beginning or a fresh start. But I resolve to do at least three productive things every day. So far I have managed it four times. Today I have hit the magic three including the five minutes it has taken to write this short and simple post. The other two were getting out of bed and toasting a bagel. It’s impressive, I know.