Holding my breath at appointment number four

I am fine, I tell myself. I repeat this mantra over and over, sometimes with slight variations.  I am totally fine.

I’m actually on appointment number four of 2015. I wrote about the first one here.  The second and third were long appointments for an immune-boosting infusion (12 hours added on to my calculation for the year). But this appointment is for a scan of my thyroid.

In 2010, while I was being scanned for non-Hodgkin lymphoma, a small ‘nodule’ in my thyroid lit up a PET scan. I’ve had this reviewed by ultrasound and biopsied numerous times. There is no conclusive evidence for what it is: it’s not cancer, but it’s also not not cancer.

I have learned that thyroid nodules are common and that because more people are being scanned more often, they’re also being found more frequently. The best course of action when faced with one though, seems open to interpretation. The first doctor I saw thought I should have half my thyroid removed. I refused on the grounds that I was waiting to see if the lymphoma would kill me; if it was going to, I didn’t see the point in going through an operation that would need two weeks recovery and leave me with a scar across my neck (that’s me: vain ’til the end). This has often been described as an ‘unusual approach’ by my various  clinicians but given that this thing in my thyroid hasn’t really grown in five years, they also have to concede that perhaps I was right.

Except what if I’m not? Today I meet the doctor who is doing the ultrasound and she tells me she can’t easily compare the scan she’s doing today to earlier ones because they’ve been archived. If it’s big, she’ll try to do a biopsy but otherwise she’ll look up the old files after I leave.

While I lie on the examining table, memories of my diagnosis and treatment for lymphoma flood me: the aborted liver biopsy, the doctor yelling at me to say I was ok after I had a core biopsy of my breast (which hurt like a m*therf*cker). The lights in the room, the paint on the walls, the low hum of the machines- it brings everything close to the surface.

The doctor begins the scan and stops talking, apart from giving me directions (“Turn your head to the wall”, “Now the other direction”). I realise I am simultaneously holding my breath and interpreting her silence. Is she quiet because she’s thinking of how to tell me that it is big? That I’ll need a biopsy? That, terribly sorry, but it looks like cancer? Or is she just concentrating?

At one point she sighs and I feel a rush of panic. She mentions wanting a closer look at the lymph nodes in my neck and I swear I can feel a light sweat break out on my upper lip. The part of me that has been chanting ‘I’m fine, I’m fine’ over and over becomes well and truly drowned out by another part of me. This is the part of me that finds it hard to distinguish between a viral infection and a lymphoma relapse; it is hyper-vigilant, on alert, braced for the worst.

In the end, she asks me to look at the screen so she can show me what’s there. In the second it takes me to turn my head, I again try to interpret her words. Is she showing me just so I know how bad things are? Or just for interest? I keep holding my breath.

The nodule, I learn, hasn’t changed size; as far as the doctor can see, my not cancer/not not cancer has remained stable. This is good news (though not quite as good as it disappearing which was what yet another, more optimistic part of me was hoping for).

As I leave the hospital I’m exhausted. I’ve been there less than an hour but feel like I’ve run a marathon. I should go home to do some work but instead I go and sit quietly reading a trashy magazine.  My brain is fried.

When we talk about managing our health, it is often, I think, moments like this that don’t get counted.  You can easily document how long you spend with a doctor or how many minutes it takes to administer a medication, but the mental strain of appointments, the time it takes to recover enough to get back to ‘normal’ is  invisible.  If I had a boss, I’m sure they’d want me back at work; after all, the appointment is over and everything is fine.  While I feel relieved, I also long for the days, pre-serious illness when I didn’t worry about medical appointments because I didn’t think anything particularly bad would ever happen to me. Do I add 1 hour or a full day to my self-management total for the year? I’m still deciding.

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