On Time

I took the same tablets every day for eight months, and I was religious with them. I always took the correct doses at the right time. I used the special medical grade mouthwash the hospital gave me to stop me getting mucositis five times a day like I was supposed to. I even made sure I used my eye drops every single time I was meant to so that I wouldn’t get chemotherapy related conjunctivitis. I was so involved in my medical care that sometimes I would catch members of staff in the haematology ward giving me side-long glances, saying to themselves “Calm down Josh, looking after this stuff is supposed to be our job.”.

I know exactly why I was as involved as I was. It was my coping mechanism.

Being diagnosed with cancer took away all the structure I had in my life and replaced it with a weird imitation where every need of mines was taken care of by someone else, and the idea of that made me really uncomfortable. So I rebelled by becoming really involved in my care and leapt into full research mode so that I could have intelligent and involved conversations with anyone who’s path I crossed. I wanted to know everything. I knew the mode of action and the reason behind every substance the hospital gave me and I took pride in my knowledge.

I was never going to be the patient who sat back and let things happened.

I was thinking about this the other day, Spring has a habit of making me poignant, and I couldn’t remember the name of one my drugs. And not just any drug, the special one I got because I couldn’t tolerate the standard one they give to patients with no immune systems of their own.

I tried as hard as I could, but no matter how hard I tried I couldn’t remember it. I eventually had to google it because it was bothering me so much.

This is something I’ve noticed happening to me more and more recently, and happily it’s not down to the dreaded chemo brain but something much more simple.

Time.

It will be two years in April since I was diagnosed; over a year since I finished treatment. I spent the whole of 2016 in remission. That’s something I never thought would happen, but I’m not the most positive person at the best of times. It’s simply been that long since I was actively taking any medication that I can’t remember the names of everything. That in itself isn’t particularly interesting, but the fact that the emotional impact hasn’t lessened with time is, at least to me.

Instead of getting better, the emotional aspect of being someone with cancer has turned into a new, amorphous fear compared to the very immediate terror I experienced before. When I was hospitalised my fears were that the treatment wouldn’t work, or that I couldn’t tolerate it. On some easier days the fear was tied to the next bag of chemo coming rolling down the corridor towards my room on that hellish squeaky cart that I sincerely pray they have replaced. My fear was mixed with trust that if there was anything wrong with me or my treatment the doctors and nurses would find it, and would try their hardest to fix me.

Now, my heart beating a bit too fast or a bit to heavy after climbing stairs is enough to send me into a tail spin of anxiety where I convince myself I’m dying again in almost record time. And in the eye of that hurricane of fright, anger and loneliness I’m crouched in a fragile bunker of my own making trying to piece my life together again.

But the pieces are slowly coming back together. I’m working full time again. I’m looking to the future. While I might not have the emotional strength to make any plans, having an easy glance towards the future from time to time at what I might do is pleasant even if it doesn’t come to anything.

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.

Predator-Reboot-Shane-Black
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.

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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”