On Happiness

I’m not happy. If I’m being honest I haven’t been happy for a while, and I’m not sure this feeling is going to go away unless I do something about it. The worst thing is that I keep swinging like a metronome between not knowing what to do, and thinking that I’m unable to do what I want to.

I know exactly what’s causing my unhappiness however, which I suppose is a positive. I’m incredibly unfulfilled. I’m disillusioned, unhappy and bored with my life. I need some variety; to make some changes and take on some new challenges, but I’m not sure if I’m able to. I don’t know what I really want to do, and worst of all I’m not sure if any of it is going to be worth it in the long run.

I’m skirting the real issue here.

I’m not sure I’m going to be alive long enough for any of it to really matter.

Before I was diagnosed with cancer I loved nothing more than making crazy plans for the future. I would spend hours looking into exactly what plants and vegetables I would grow in my home garden that lasted one short summer, or exactly what equipment I would buy for my home gym that didn’t ever materialise. At one point I was planning a new life for myself living in the South of France as an English Teacher. It didn’t bother me that many of these plans didn’t ever come to fruition. They were literal pipe dreams; dreams I indulged in to clear my mental and creative pipes, but they had a real purpose. They let me clarify what my real goals were, if something didn’t stick then at least I had tried it; if it didn’t stick around then it obviously wasn’t meant to.

Now my fear of the future paralyses me and whenever anyone mentions plans to me I think to myself “December, no I can’t make plans for December. I might have relapsed by then.”

You might think that after living through what I have, I would have developed a new attitude where I lived completely in the moment and believed anything was possible but I think I have veered too far off the road in the other direction, crashing off the road and ending up stalled hanging half out a shop window. I remember actually trying to escape from a party once when a drunken friend decided that now was the perfect time to hear about how wonderful my outlook on the world was now, and how untroubled I must be by the pettiness of life. Obviously trying to escape from her unfocused and intense gaze hadn’t sent the signal strongly enough and I wondered if I was feeling up to climbing out the nearest window. I settled with avoiding her until she forgot all about the wisdom she was hoping I was going to impart.

In those moments I feel like a fraud. I feel like I’m letting the side down. But who is the side? The stereotypical image of the Cancer Patient as the new age guru; only concerned with their legacy and not at all troubled why the day to day minutinae that gets so many people down? I know that’s probably most people’s mental image but it’s not really one that aligns with my own experience.

Does living with cancer change your outlook on life? Of course it does. It’s impossible to imagine it doing anything else. But does it somehow transform you into Buddha? Not quite.

My own experience is the only one I can talk about with any authority and Cancer has changed me. My new personality is like looking at my face in a cracked mirror. I know it’s me, and I can just about make out my reflection, but the pieces don’t quite line up with how I remember.

Some of the cracks have shaved a few metaphorical pounds from my reflection. I’m more patient now, and much more understanding than I have ever been before. Where I was quick to fly off the handle before now I seem to find it easier to empathetic, and to make peace with people. This doesn’t mean however that when I’ve eaten the last two eggs and forgotten to pick more up I don’t shut the fridge a little bit heavier than I should or when the bus takes an unimaginably long time to get me home I don’t feel rage building inside me every time the driver presses the brakes.

Some of the cracks have disfigured parts of me beyond recognition. In an attempt to keep it real I have worked boring day jobs for as long as I have worked. I also have a desperate need to be liked which means I become passionate about my jobs. I’m the worst kind of colleague because I care. I want people to think I do a good job. Don’t worry, I know just how annoying it is to work with someone like me.

But now I just don’t have the patience for it any more.

I have made choices in what has been my first year since being discharged which have been sensible but haven’t inspired me or made me feel excited by my life, and that’s a feeling I really miss.

Instead of going off on holiday to let my soul relax, I went back to work just two months after being discharged.

Instead of telling my supervisor I was struggling with the workload I gallantly struggled on and would crawl into bed for a ‘nap’ as soon as I got home.

Instead of telling people how much I was psychologically struggling I just hid it and pretended I was fine because I could tell people were getting sick of hearing about ‘my cancer’.

In the middle of this maelstrom I bumped into a friend from my life before cancer, who now also has cancer and she made a flippant comment to me that completely changed the way I looked at everything. While discussing a recent career change she had embarked on she threw me a nugget of wisdom that I think even Buddha would have been proud of.

“I didn’t fight for my life to be unhappy when I go into work.”

I think I probably stared at her slack-jawed after that. The weeks following our chance encounter in Semi-chem stuck around me and gradually I started trying the words out for myself, albeit in smaller and probably more irritating ways.

“Mum, I didn’t fight for my life to wash those dishes.”

“I didn’t fight for my life to watch my weight.” (This one usually said between mouthfulls of pizza.)

“I didn’t fight for my life to watch football on T.V. all night.”

Over time however the sentence got shorter and shorter; simpler and simpler until I was left with the core idea melted down into a solid ingot that explained how I now looked at the world.

“I didn’t fight for my life to be unhappy.”

And to begin with when I said it people laughed and I flashed them a look that I like to think showed them just how serious I was. In reality I probably just looked constipated. If Facebook has taught me anything it’s that how I think my face looks and how it really looks aren’t always the same thing. I think I am smizing and looking intense when in reality I just look like I’m staring at something in the distance that I’m utterly perplexed by, and it’s the same look I get from people when I try to spin my simple magic spell on them. They look about as convinced as I am that I have a strong future ahead of me as a model.

But still, through the storm of every day life that tries to sweep across the bow and sink my tiny lifeboat-come-mantra I just keep repeating: “I didn’t fight for my life to be unhappy”, and I didn’t. At times it took everything I had to not rip the bag of poison down and go darting through the hospital corridors to let the chips fall where they may instead of holding on to life with the grim determination which has become my trademark.

I know better than most that life sometimes looks like a storm to which there is no end, but all I want is the opportunity to look out from my raft that I’m clinging to and see a spear of light and calm burst through every once in a while, and to not be too afraid to paddle towards it. Instead I pull in the oars, drop the sails and languish in the torrents of today, tomorrow and then the day after.

Like all other decisions in life, it’s one that is purely my own, and I need to be Captain and face these challenges head on. If I relapse and the Kraken of Cancer surfaces from the depths of my bone marrow (I promise I’m done with the sea analogies now, I was just really enjoying them) is something which is frustratingly outside my control and I would then be guilty at surviving round one and doing absolutely nothing with my life, which is a greater fear to me than relapsing at all.

On Life Lines

I remember the day I first started Chemotherapy. Thankfully not like it was yesterday, but I remember it all the same.

It all started with possibly the most painful part of my diagnosis up until that point.

I had to get a Hickman Line fitted.

For those of you who aren’t up to date with your high dose intravenous chemotherapy standards, a Hickman line is a delightful plastic tube with a number of lines coming out the end (mines had two) that goes straight into one of the main veins of your heart. This is because the Chemotherapy is so toxic it can damage veins and tissue, so putting it into a large, strong vein like the jugular vein, and into the vena cava (which has a little less to do with sparkling wine than I would like) is safer for a lot of reasons. Mainly to stop you getting stuck with needles all the time, which can introduce foreign bacteria to the body; dangerous if your immune system has decided it’s not playing any more. It’s also just pretty irritating to get stuck with cannulae regularly, and you’d be surprised how easily a vein can break down, even if you’re a relatively fit 27 year old.

Image courtesy of MacMillan

I remember a nurse coming in to explain the procedure to me, only to be interrupted by my Consultant, as he was imparting some more devastating news to me. He seemed to believe that if he hit me with enough bad news in a short space of time I’d eventually become numb to it. He wasn’t far wrong. It says quite a lot for his plan that I can’t even remember exactly what piece of terrible news we got that day. All I know was that the nurse never got to fully explain the procedure to me. And that’s probably just as well.

Before I knew it I was shivering in a cold hospital corridor, picking at my delightful gown waiting on being admitted to the X-Ray theatre, so they could watch the line as it snaked around my veins to make sure they got it in the right place, and they didn’t start delivering chemotherapy into my lungs, or something equally strange.

The anaesthetic was just as painful as it usually was, but it was bearable. “After everything I’ve been through in the last few days,” I told myself “a couple of injections in my chest is nothing. Nothing at all. “ I even managed to stay calm when the nurse asked me if I wanted to listen to some Doris Day while I got my procedure. I chose Fleetwood Mac instead.

Then the cutting and pulling started, and I couldn’t really feel it. It was more just uncomfortable as the doctor pulled my man-boob around like it was a particularly juicy bit of brisket. I think I was still calm right up until the bit where they cut into the nice, full vein on the side of my neck and I felt the spurt of blood arc over my shoulder like a macabre bra and pool in around my hair. It lasted for probably about two seconds, but I can still feel it to this day. I didn’t know it was normal. I wasn’t expecting it. I panicked, brayed like a demonic horse and my blood pressure dropped all at once.

Then, in what was either an incredibly touching moment of human kindness, or a very thoughtful piece of hospital theatre convention I felt a gloved nurses hand curl into mines and the owner of the hand asking me very reassuringly to take some deep breaths, because it looked like I was going to faint. This calming influence could not have come at a better time, because the strangest feeling I have ever had in my life happened after that. I felt the end of the now accursed Hickman Line moving around in my veins and I freaked out.

I don’t mean that I started writhing around on the table like a demon straight from the bowels of hell, but that didn’t mean that I didn’t want to. I probably would have if I wasn’t so acutely aware that there was still a hole in my neck where a particularly well moisturised patch of skin used to be. I wanted to escape, but instead I kept a grip on my sanity, took some deep breaths, and before I knew it the doctor was stitching me back up and telling me I was all done. I sat up on the side of the operating table and collected myself and before I knew what was happening I was walking back to ward with two shiny new plastic tubes swinging from above my right nipple that my dad would eventually start affectionately referring to as my Predator Dreads.

An accurate representation of how I looked during chemo

Later that night, feeling like I had been punched squarely in the chest by Buffy I looked down at my new appendage and was struck by how handy it actually was. I could now sit and write, type and draw without worrying that the movement in my hand was going to stop one of the veins letting what ever magic potion I was getting in.

In time, over the months, I became to be incredibly grateful for my Hickman Line. It definitely made transfusions and getting blood taken every day a whole lot easier. I didn’t have to sit through needles getting stuck in my hands and arms all the time. When it eventually had to be removed because I had developed an infection in it (an incredibly common thing to happen, no matter how careful your nurses are) you feel genuinely lost and irritable without it. You soon remember how irritating and at times painful cannulas can be. Over time you even forget how bizarre the entire situation of getting one fitted is. And when it comes round to getting another one fitted for your final round of chemotherapy, you’ll take it all in your stride as you remember just how much it benefited you the last time.



Then, when you go back to your every day life and you’re no longer worried about it coming out in the shower, or someone pulling it out when they hug you, when you can finally sleep through the entire night without having to wake up every time you roll over to move it out the way, you’ll catch sight of the scars you’ve been left with and remember it and how much of a life line it was for you.

On Bad News

I have cancer. Leukaemia to be specific, and Acute Myeloid Leukaemia to be even more specific. I registered this blog name during a strange emotional high on my second morning of chemotherapy, after a week in hospital connected to drips full of red blood cells, platelets, fluids and antibiotics, intrigued by the new plastic tube running from my heart, through the skin and sitting just six inches above my right nipple. Continue reading “On Bad News”