Throughout
my treatment last year, many women in my support groups would talk about ‘scanxiety’,
which is the period between having scans (or being referred for scans) and being
told the outcome, whether it’s good or bad. During this window of the unknown, your
mind can wander down all the possible pathways, and in many ways the ‘not knowing’
is worse than bad news. I definitely felt this to some extent in the first five weeks after my initial diagnosis, before I found out my full prognosis and had
a treatment plan. But generally, I’ve not experienced this over the past 18
months of my treatment. Instead, I would go for my scan, and await the outcome,
knowing full well that I could not influence it with any amount of worry so why
worry until you get the results, right?
Well this
last couple of weeks I’ve come to know the true feeling of scanxiety and it’s
not much fun. Basically, I went to my GP to talk about this hip pain I’ve been
experiencing lately. I’ve always had problems with my hip and back, and I just
thought that it’s being exacerbated by the fact that I’ve increased the amount
of exercise I’ve been doing lately, to shift my chemo weight. But I’ve been
experiencing acute pain in my right hip, and it’s been getting worse. I asked
her to refer me to a physio, which she did, but at the same time she referred
me for an X-Ray, just to check there wasn’t anything structurally wrong with my
hip. A few days later she called me, and said that my bones look fine, but they
spotted a ‘subtle lucency’ (shadow) on my X-Ray behind the bone which concerns them, so
they need me to have some more scans so we can find out what it is. So this
Monday I had a full body bone scan, and on Friday I will have an MRI. Right now
I don’t know what the outcomes of these scans will be, but because I have spent
the last 18 months reading and researching about cancer, and hanging out in
online support groups with all kinds of women at various stages of the disease,
I have a pretty good idea of what the different possibilities are. And instead
of keeping my cool, awaiting the outcomes, my mind is wandering down the
various paths in a way that is keeping me awake at night.
I want to
be open and honest about how hard this period is for me, and not sugar coat it.
I know that I’m looking much healthier than I did when I was going through
chemo – I’m gaining hair and losing weight, my skin is much better, my nails
have grown back and I have much more energy. But right now is the hardest time in
many ways, because I’m coming to terms with what this whole experience means
for the rest of my life. No, I haven’t ‘kicked cancer’s arse’, it is living
with me, and will live with me forever. I have to re-learn how to be in the
world and navigate everything that comes with it. I am trying to be positive
and optimistic, but in reality I have to live with the sword of Damocles over
my head. At any time the cancer could return. And I have no watertight way of
preventing it from doing so. My challenge is to embrace my chance to live,
without having any level of certainty about my long-term health. And this is
hard. Exhausting, actually. But what’s even more exhausting is navigating the
expectations of others that I should ‘move on’, and ‘put the cancer behind me’.
As if it’s that easy, surely I can just forget about it and get on with my
life. But this is my life, I can
never go back to the person I was before my diagnosis, and I want to give
myself the space and the permission to feel the emotions I’m feeling. I don’t
want to have to cover up my pain and frustration just to make other people feel
better.
Over the
last few days I have had thoughts about my own death which I have not had at
all for the last 18 months. Stupid things, like waking up at 4am and mentally
writing a practical checklist of the things I need to send Tanai, like my
Australian superannuation details and my social media passwords. Being choosy
about what books I pick up because I probably won’t have enough time to read all
the books on my ‘to read’ list. Composing speeches to my co-workers. Feeling
bad for leaving Tanai before we have the chance to grow old together. Looking
at old people in the street or on the tube and thinking how fucking unfair it
is that some people get to grow old and other people don’t. I remember the
moment a few years ago when I realised I was becoming a proper adult, when I made
a significant purchase (I can’t remember what it was, a sofa or a suitcase or
something) and I though ‘I wonder if that’s the last one of those I’ll ever buy’.
Well now I’m thinking that about vitamins. Is this the last packet of cod liver
oil tablets I’ll ever buy, because I’ll run out of time before they run out?
And I don’t want to be thinking these thoughts, they’re just coming into my
head, unbidden, and taking over. I thought that maybe by writing this down I
would feel a little better, like I’d shared my problem, and relinquished some of
the burden. And I do, a little, I think. Thank you.
So there
you have it, no resolve, just scanxiety. I’ll fill you in when I have my
results.
