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.

Are we live?

How do I feel about what happened to me? 

This is a question I have been asked a number of times recently. The question itself confuses me. Am I done? Is it over? It doesn’t feel over when you have to take a day to rest after throwing a ball for fifteen minutes in the park. 

Last week, Matt and I went out for dinner with some of the other scout leaders. We were chatting and something related to my transplant was briefly discussed before Matt smiled at me and said, “anyway, that’s all in the past”. Just like that. He was being positive; he intended it to be reassuring to me and everyone there that I was better now. But as much as I want this whole thing to be in the past, the truth is that it’s just not there for me yet. It is still very much my present. It is the reason I am not working. It is the reason I spend my days at home, doing the same things, becoming exhausted by the same mundane tasks. I felt weird as soon as he said it, guilty for dragging this whole thing out, conscious that people are getting bored of the whole cancer thing. 

Mentally, cognitively, introspectively, I know I have been changed. They call it “chemo brain”. It’s like my mind has a fogginess which prevents me from remembering things clearly, if at all. It also affects my vocabulary; humble words I once frequently used dance around in my subconscious, almost-remembered and tantalisingly out of reach. I feel like I have lost the capacity for creative thought and now find it so difficult to think clearly or organically or uniquely about anything. So when I am asked these huge questions, how do I feel about what happened? how do I feel about cancer? what is having cancer like? I just want to be able to answer in a concise but articulate way but it just doesn’t come.

I’m not a journalist, I don’t want to be famous, I don’t want to go viral (in my world going viral is no good thing and involves a hospital admission and hefty dose of Aciclovir! #cancerlolz). I just want this mist to clear, this cloud to dissipate from around me, for things to be so much clearer where the future is clearer too. I know I am changed. I am more tolerant in some ways, and less in others. I feel like I have things in perspective and that at least, is very clear to me.

During my treatment, Timothy Spall was a guest on The Graham Norton Show. He spoke about being diagnosed with a terminal illness (turns out it was AML, and turns out it wasn’t terminal after all). He said that when he was ill things took on new meaning: trees were somehow more beautiful and everything was profound. And he said the day he knew he was better was when things weren’t profound anymore. We used this as a benchmark throughout my treatment. My sister would ask, “is everything profound?” and I would look outside at the view that never changed, where the sun rose each morning over the fields, where I would imagine foxes running beneath the hedgerows, which was so beautiful it almost made me forget where I was and why, and I would reply, “yes, everything is profound”.