My cancer experience

Content note: cancer

I found my breast lump on my birthday. I was in bed, lying on my front and I thought “ow, that’s uncomfortable”. I reached over to adjust my breast and felt a lump – and not one of those “grain of rice”-sized ones either – this was huge, a good 3 cm or so. I tried to tell myself it was just a cyst, but I knew it wasn’t. I went to my GP and got referred onto the cancer pathway. And from there it should have been straightforward, but it really really wasn’t. Or at least it didn’t feel that way.

I remember certain moments very distinctly:

  • my GP asking me, incredulously, if I really hadn’t noticed the lump earlier – uh, no? or I would have come to see you before
  • my breast surgeon giving me the results of my biopsy by asking me what I thought the results were – that is definitely not how to break bad news, mate!

The rest is a bit of a blur. I remember the frustration of being given minimal explanation of why they chose my treatment regime, and searching online for more information and finding more information but less detail than I really wanted. Mostly I remember trying to get information out of the hospital – appointment dates, where I needed to go for my surgery. It should have been easy, but unfortunately my cancer nurse went on leave for 3 weeks just after I was diagnosed, and the other cancer nurse she gave me the details for was quite unfriendly, so I was not motivated to ask her for more help. This rendered the entire process way more stressful than it had to be. There was a lot of crying at work after yet another fruitless phone call to someone who couldn’t – or wouldn’t – help me. Somehow everything seemed to be going simultaneously glacially slow (when I was waiting for results or trying to get information) and super-fast (when they needed me to do something).

After all that, the surgery was actually kind of a relief.

About 7 weeks after I found the lump, I had a mastectomy and axillary lymph node clearance, which was both more and less traumatic than I thought it would be. On the one hand, it didn’t really hurt, although there was (and still is) total numbness in that area and some surrounding areas. On the other hand, it was surprisingly traumatic having a breast removed (given my ambiguity towards my breasts), although I guess that was due to it not really being my choice.

And then there was chemo – everyone’s favourite treatment (no, not really).

Chemo was a truly horrible experience with some amusing bits (orange pee!) and a whole host of appalling side effects which weren’t really mentioned – everyone knows about the nausea and hair loss and fatigue, but then there’s the neuropathy – I had to pull the plastic seal off the milk bottle with my teeth, because I couldn’t grip it with my fingers.

There’s the weird taste effects – everything tasted like it had come out of a drain.

There’s the fact that nobody can tell you when or if the side effects will go away – all you get is “well, they go away for most people”.

There’s the fact that you never know which side effects you’re going to get – I got the agonising bone and joint pain (days when I could literally feel every bone in my body, because every single one hurt; days when I felt like my bones had splintered beneath my skin), but I avoided the oral thrush (thankfully). And although I got a couple of infections, I never got neutropenic sepsis or ended up in ITU, so I got off lightly in that respect.

Then there was radiotherapy, which was both more intense (5 days a week for 3 weeks) than chemo but also far less difficult. The hardest part was lying still for 30 minutes. The best part was playing the world’s crappiest computer game – trying to hold my breath so as to keep one bar within another bar on the screen that I could only see via a mirror above my head. That was surprisingly difficult some days. The worst part was that the side effects peak about two weeks after you finish, which happened to be during Christmas, so I basically had a really really bad sunburn over Christmas.

And then I started the end-phase: 10 years of hormone therapy.

The whole process of cancer treatment, for me, was like getting on a roller coaster. I had started the ride of my own volition, but after that I didn’t have any options – it was go here, do this, have this test, take this treatment. And all with minimal explanation. Which, okay, I get it, doctors are busy and there are set protocols for treatments for various cancers, but… I didn’t feel like I was taking part in treatment, I felt like it was happening to me. And it’s fast, too fast to really take in as it’s happening. I genuinely thought I was fine with having cancer for about 6 months, and then I suddenly realised that I was not fine at all.

There’s a metaphor about the storm of cancer, which I was introduced to during a post-treatment, moving-on-after-cancer course:

Before cancer, you’re sailing along in generally fair weather. You’re travelling in one direction. You have maps, navigation aids and provisions. You might even be part of a flotilla – you and some other boats, sailing in the same direction at the same speed. Life is fine, good even.

Then a massive storm hits – cancer.

Your boat is seriously damaged. Maybe parts of it are lost or broken. Your maps and provisions are swept overboard. In the eye of the storm, you lose all sense of direction. Your main terror is that the boat will sink.

Then your cancer care team appear. They are your lifeboat; your rescuers. They attach ropes, patch your boat up and keep it afloat; they come alongside you, and take control of the steering and direction. Slowly, they tow you back to port….

But then your boat just stops…. you’re moored just outside the mouth of the harbour. Then your lifeboat, and its team, goes. They drop the ropes into the water and sail away.

That didn’t resonate with me at all. I definitely felt, at the end of active treatment, more like I had just gotten off a roller coaster: faint, wobbly, and a bit sick. Treatment was not a journey or a battle for me; it was an experience that rendered me powerless. My cancer team were not my rescuers. Some of this may have been due to being a healthcare worker myself – I have too much of an insider’s perspective to see my team as saviours. Professionals, yes, but not saviours.

Before I got cancer, I always thought it was, let’s say, over-hyped. Yes, it’s an awful disease, but so are many others. I never quite got why cancer had this special place in our culture. Then I got cancer, and it really did make me rethink everything, question who I was and who I wanted to be and what I wanted to do with my life. It felt like my body was betraying me on a really fundamental level – it couldn’t even manage to do cell division right! And having cancer means thinking about dying – and facing the fact that you might die much sooner than you thought. And acknowledging that your cancer could come back, multiple times, and there is very little you can do to affect that.

So cancer has absolutely changed me, both for the better and the worse. The worse is mostly physical, side effects that haven’t gone away or an exacerbation of my previous conditions. The better? That’s more on the emotional and psychological side. I’m happier – which is kind of a weird thing to say, right? But I am. I guess because now I know, in a really visceral way, that it absolutely can be worse. So until it is worse, I’m going to try to enjoy whatever time I have left.

© bardofupton 2018

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