“I just want to be me again” - Jon's story, volume 2

Image of a waterfall

We first heard from Jon in the first of his blog series where he talked about his diagnosis, and what led him to share his story. Our members often talk about ‘scanxiety’ and how difficult it is in the run up to getting a scan, and then waiting for results. In today’s blog, Jon talks a little more about his experience of ‘scanxiety’ and the impact it’s had on him.

Scanxiety

It’s been going on for a while now.  It always follows the same routine.

Somehow, subconsciously, I just know it’s coming.  I start to tense up, and my sleep starts to suffer.  The sleep I manage to get, I spend grinding my teeth.

When I’m awake, I’m just snapping at people or being irrational.  Cancer does that to you.  All that broken sleep ages you too.  “Oh you look tired?”  “Yeah Karen, I haven’t slept in three weeks”. It’s not actually ‘the cancer’ though.

It’s the fear of it coming back.

“Why do I feel like this?”

I’ve been in remission for a year now, and I’m writing this a day before my next scan.  It will be the 8th surveillance scan I’ve had since they last found any new disease.

When I was first diagnosed with penile cancer in 2019, it was all a bit of a whirlwind.  By the time my staging was complete, I was told that I had stage 3, grade 3 cancer.

It had spread from the primary tumour in my penis to the next set of lymph nodes in my groin.  After having nodes removed in my pelvis as a precaution too, I got the incredible news that there was no sign of disease.  Or, that as some like to say...  that I was cancer free.  

Next I went through a few weeks of chemoradiation to give me the best chance that cancer wouldn’t come back.  It was tough, but I knew it was worth it.

“It’s just great to be me again, while it lasts”Jon, in a hospital gown

The scans and the months go by, and in the gaps between, you grow in confidence.  Things get back to normal, and the smile comes back to your face.  You’re not a victim anymore.

Then, just as you’re thinking how great the world is, the call comes...  “hello, your consultant has asked us to contact you about coming in for a scan.  How is three weeks this Thursday?”

Well, it’s terrible actually.  I never want another scan in my life.  But you know you have to.  You know that speed is everything when it comes to cancer.  The earlier you catch it, the better the chances of killing it.

But as soon as that appointment is made, the clock starts ticking.  The little arguments start at home, lashing out at the people you love.  The silly frustrations at the simplest tasks, and being overcome with emotion about the supermarket being out of edamame beans.  The dull aches in your sides and the pit of your stomach that mimic a tumour.

“So many questions”

What if it’s come back?  What if they didn’t find all the microscopic disease?  What if the surgery wasn’t radical enough, or if the cancer took a detour and it’s growing further up my body?  What happens then?  It took less than three months to grow a tumour the size of a tennis ball in my groin.  What if it’s in my liver or something?  That’s the right side of my body.

Am I being irrational?  Of course I am.  But cancer does that.  It destroys your belief system, and what you think is normal.  Simple logic becomes difficult to handle.  Surely I’d know if it had come back?  I only ever ask myself the questions that I know I can’t answer.

“I just want to be me again”

The really crazy thing, is that I’m not scared of the treatment.  I’m not bothered about operations, or spending time in a chair getting chemo.  I’m not worried about the radiotherapy.  The side effects are the worst part, but I can handle those too.  I know what to expect.  

But it’s the disruption that bothers me.  My cancer puts everyone’s lives on hold, and everything has to revolve around me.

I’m supposed to be a parent, and a husband, and a leader.  People depend on me to be there, to be involved.  More than anything, I really want to be there.  I want to be me.

That’s why I hate scans, because I know that I’m only ever “I have some bad news”, from taking me away from the best job in the world.

We’d like to thank Jon for continuing to share his story with us on the Community and for taking the time to write for our Community News Blog. In his next blog, Jon will be sharing more about his experiences of side effects, particularly lymphoedema, and sharing some of the things that help him manage those. You can read Jon’s whole cancer journey at https://knob.blog

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