Saturday, 17 June 2017

Chronic Skin GvHD.


It’s been longer than I care to remember since my last proper blog post. That sounds like I’m about to confess my sins, or regale you with stories of my alcoholism at an AA meeting. Alas, the truth is far less compelling; I’ve simply been busy, not very cancery, and not felt like there was anything worth writing about, and so writing a cancer blog seemed a bit redundant. 

The fact that I now have something to write about is bittersweet. I’ve missed writing on this blog, but I had been getting back to a new normal, which was nice, and not immersing myself in thoughts about Leukaemia and the cancer community was nice for a while. In fact, there was a point last year when I began to question the benefit of engaging with people who had been through the same things as I had. In October, a Canadian woman living in London called Amber, who I spoke to regularly, died. She had AML and despite undergoing treatment and a stem cell transplant, she died. Amber was a couple of years older than me, and we seemed to have similar interests, values and points of view on cancer, feminism and the world. I could relate to her. When she died, though we had never met, I felt a deep sadness for a long time which I struggled to shake. I felt sad that she was gone, but also angry with myself because her death reminded me of the peril of my own disease which made me feel so guilty that I should be thinking about myself at all when she had lost her life. Then, in February, another virtual friend died. Alex was a postdoc researcher and wrote a blog called Alexisallin about her experiences with Acute Lymphoblastic Leukaemia and transplant after being diagnosed in 2015. She had been doing really well, but she was admitted with a stomach virus and ended up spending her 30th birthday in hospital. I spoke to her on her birthday and we had long instagram exchanges about chronic GvHD and the general shitstorm that is cancer. Then I found out via a twitter post from Bpositive that she had died. I was so shocked that I burst into floods of tears. It was saddening and at the same time it was terrifying. And so I questioned whether engaging with people was good for me.

Fast forward to now, and I find myself with a new health issue and I found myself wanting to reach out to others. Or maybe I just want to get some of these thoughts out because my brain feels like it’s pushing maximum density these days.

So you might remember that after my honeymoon last year I wrote a blog post entitled “Fear Of Relapse” in which I talked about the ineptitudes of my GP practice after I was told that I had abnormal blood results which turned out to be my abnormal LFTs which I had known about all along anyway. Well, the reason I had gone to the GPs in the first place was because my feet and lower legs were incredibly swollen. After the whole debacle I was so thrilled that the leukaemia wasn’t back and that I didn’t have some sort of kidney disease that the swollen feet thing kind of got forgotten about. I mentioned it at my regular clinic appointments (albeit not to my regular doctor) and was told that it was probably just because it was summer and I had been on a few aeroplane flights. 

A few more months of swollen feet and wearing nothing but flip flops and I decided to be more persistent, I knew something wasn't right. I had pitting oedema on my feet and legs and the skin was becoming dry and itchy. I saw a lovely consultant at the QE who until then I had not had much contact with, and he took me very seriously. I was prescribed Furosemide tablets (which make you wee like a racehorse) and the oedema went down a little. But the skin became worse and worse. 

In November I started back at university on placement on the postnatal ward and every day my skin was in agony. All over my body my skin was like sandpaper; it was as if my body was making too many skin cells and they were pouring out from my pores. You could literally squeeze them out like blackheads. My calves and feet were the worst affected and here the skin was cracked, raw and swollen. Then the skin around my ankles started to thicken and tighten with scar tissue; I couldn’t wear a pair of heels because I couldn’t straighten my foot and literally couldn’t stand up in them. Dark patches of skin appeared where I had previously had small scars, mostly from cannulas during treatment, but then great big patches appeared all over my stomach and legs. My skin became leathery, hyperpigmented and puckered so that it looked like cellulite. As if that wasn’t enough to make me feel like a sack of shit, dry skin patches around my ears and the back of my neck caused alopecia in those areas (I also have alopecia on my legs and armpits but these never bothered me as much for some reason). 

Eventually a skin biopsy was taken and just before Christmas it was confirmed that I had chronic skin GvHD. My consultant decided to treat it conservatively at first using steroid creams which allowed me to enjoy Christmas and New Year without fistfuls of medication. But in early January it was decided that the best course of treatment would be to start steroids, immunosuppressants and a new treatment called extracorporeal photopheresis (ECP). I was started on 70mg Prednisolone, Ciclosporin and got a physiotherapy referral to help with the restrictions to my ankles.

The hamster face was back. The belly was back. The appetite and the insomnia was back. Luckily the anxiety didn’t return and mentally, despite my self esteem being pretty much non-existent, I was okay. Going back to taking so much medication seemed like a backwards step and was frustrating. When you’re taking steroids and immunosuppressants you have to take a million other things to deal with their side effects: anti-virals, anti-fungals, two types of anti-biotics, tablets to protect your bones, vitamin replacements, hormone replacements and tablets to protect your stomach from all the other tablets you’re taking. 

Then in March I started ECP. It’s a treatment which once started needs to be continued over a period of 12-18 months, depending on bad the GvHD is and how well it starts to work. Initially I have to go to the apheresis unit on two consecutive days every fortnight. The treatment itself takes approximately 3-4 hours. You get hooked up to the ECP machine via two large needles inserted into the veins in each arm. Blood gets drawn from one arm, spun in a centrifuge to extract the “buffy coat” of white cells and the blood is then returned via the line connected to the other arm. When enough white cells have been collected they are injected with a drug (8-methoxypsoralen), exposed to UV light, and then reinfused back into your blood. The idea is to kill off some of the T-cells which are in overdrive in people with GvHD.

I feel pretty drained after my second day of treatment, but apart from bruised arms and a numb arse from sitting in the same position for so long, there don’t appear to be any side effects from the treatment. The goal is to get off the steroids and immunosuppressants, get my face back, and get on with life. My doctor can’t say how well the treatment can reverse the skin changes such as the hyperpigmentation, thickening and restrictions around my ankles but we’re hopeful that it won’t get worse. After almost three months of treatment I don’t think it is getting worse and I think there has been a slight improvement, but it’s hard to tell when the changes are so gradual. 

One thing is for sure, I don’t feel like the healthy, getting-back-to-normal person I was a year ago. So I guess I am back, and I am ambivalent about it. I've got a lot to get out of my brain so expect more posts in the coming weeks. I've got stuff to say on fertility, hair loss (the updated version), how my attitude towards others has changed post-cancer as well as more about living with a chronic disease.

If anyone is out there, reading my little corner of the internet, please do get in touch and leave a comment, particularly if you are also experiencing this. Because despite it all, despite the sad and shitty times, I think it's better to not feel like you're totally alone. 

My questions for you: what does it feel like to live with a chronic disease? do you consider yourself to have a disability? do you think there is enough awareness of the late-effects of cancer?

Saturday, 25 February 2017

My immune system is two!



Tomorrow my immune system in two years old. It’s my second rebirthday! Two years post transplant. Two years since we sat around, waiting for the slate to be wiped clean, and then the anticlimactic slow drip of those beautiful cells. It was simultaneously momentous and underwhelming. But now, two years on, it remains one of the most important days of my life. It is one of the few specific days associated with my cancer that’s worth celebrating. For a stem cell recipient every year is a step further away from the chance of relapse and a step closer to that magical, distant land… cure. 

The last week has been a big week for the stem cell community. NHS England overturned its barbaric decision to stop routinely funding second stem cell transplants for relapsed leukaemia patients after a fierce campaign by Anthony Nolan and other leukaemia and blood-related charities. Since the decision was made, people have died because they were denied treatment and that’s not okay. It should not have happened and they should have had a second chance at survival. I feel incredibly lucky that my disease did not return during this time, and even though I have remained cancer free, the last six months have been trying both psychologically and physically. 

My last post was all about the fear of relapse and over the last six months that has been heightened more than ever. This week felt like a release. Of course, I still dread every clinic appointment until the moment my bloods are confirmed as (relatively) normal, but knowing that if it did come back that I would be given treatment means that relapse isn’t a death sentence anymore. And that’s quite nice. 

Physically, things have been up and down. I was diagnosed at the end of last year with chronic skin GvHD. I have started writing another blog post on the subject because there is a lot to talk about, but that’s not the subject of this post. So stay tuned!

So tonight I am going out with my favourite people (minus Ellis and Josh who will be en route home from Australia straight to my lovin’ arms on Sunday morning). And we will eat and drink and spend time together because after everything, after all the pain and terror and life-affirming moments and joy and fear and anxiety and love and exhaustion and tears and laughter, there is nowhere I would rather be than with the people who mean everything and who I love more than a few words on a blog post could convey.

Saturday, 13 August 2016

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.

Tuesday, 28 June 2016

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.

Wednesday, 11 May 2016

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.  

Monday, 21 March 2016

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.

Thursday, 25 February 2016

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.