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The limbo of surviving cancer

By Mindo - 25th Apr 2019

Woman in silhouette, sitting on a bench in a moody landscape at water's edge. The lone woman may be widowed, divorced, or lonely, sitting in solitude, contemplating her grief, sadness, or depression. The lighthouse in the distance is a symbol of finding hope or direction in a sea of troubles.

A life after cancer is still a gift, even though things will never be the same, according to Dr Sarah Fitzgibbon

I have a fairly robust catalogue of defence mechanisms to help to keep me vaguely sane, the chief of which is to fill my brain with ‘other stuff’ and ignore the ‘fear and dread of cancer’ as much as possible.

But the fact of the matter is that I am now living in a parallel ‘alive’ universe when I am supposed to be ‘dead’. An actual real-life limbo.

I was diagnosed with the kind cancer that everyone knows would kill you stone dead in a matter of months. I had the full range of reactions from doctor-friends that reinforced this truth – the ones who said “Oh, don’t talk like that” and then crumbled into tears, the ones who looked at me knowingly with “You’re a goner” scrolling across their faces, and the ones who crossed the street to avoid having to decide which version they wanted to be. I never had the ‘how-long-do-I-have?’ conversation with any of my consultants because it was appallingly apparent to us all that the answer was “not long”.

That was four-and-a-half years ago. Now no one, least of all me, has a bloody clue what to say. Am I cured? Will I live as long or short as anyone else? Do I have cancer now, if none can be seen on a CT?

What I have are the constant reminders.

I cannot donate blood, because I was lucky enough to get two units of it when my Hb was 7.6.

I cannot donate my organs, as far as I know.

I cannot get life insurance or mortgage protection (but I got them before the diagnosis, thankfully).

I cannot lie properly on my right side, because I have a portacath in my upper chest wall, that is now so tethered and ropey that having it removed would be tiresome. So I toss and turn in bed, woken by the numbness in my right arm when something happens that must be related to my subclavian artery, or vein, or something [I am putting this little snippet in here in the hopes that a clever vascular surgeon will write in to the editor to explain this phenomenon for me.]

I have to do complicated maths on the economics of having a long-acting contraceptive [LARC] device put in. I mean, how long-acting will I actually need?

I need the LARC, though, because I cannot have any more children in case my cancer recurs and I would have to choose between me and the baby, and I cannot say hand on heart that the baby would win. I mourn for this potential baby that I might never have had.

I am periodically surprised by the reminder message on my phone that it is time to have my portacath flushed. I bluster my way through this experience, jovially fielding the “my God, aren’t you so young/so lucky/so unlucky” comments that come with each new CIT nurse.

I say nothing when people talk about their plans for next year, or talk about getting old.

I try not to dwell on potential milestones – first days at school, fiftieth birthdays, wedding anniversaries.

I say “yes” when people invite me to events in the future, knowing that my seat might be empty.

I have recurring dreams that I have left my children alone somewhere.

I lie when I go to fancy spas, and tell them that the scars all over me are from a “minor procedure”. I count on the lighting being so soothingly low that they will not notice the radiotherapy tattoos, and I brush off the portacath as a “medical device”.

I say “yes” to the dentist’s enquiry if I might be stressed, when he discovers the huge crack in my molar from violent bruxism.

I have stopped making virtual friends with fellow cancer sufferers online because – you know what? – many of them died.

And then there are the scans. And the ‘scanxiety’. And the somatisation. And the erosion of the gastric mucosa while waiting for the results.

On a day when my head is bursting to the brim with conference-organising or website-building or network-working, it is only the occasional little ‘You’re going to abandon your children’ thought that squeezes its way into my consciousness. On the days where I have neglected to cram in as much brainwork as possible, the visceral dread seeps up to my shoulders and billows out into a filthy putrid cloud around my head, and makes me lose my breath. The chest pain starts and the hyperventilation, and the bile rises into my throat.

On those days, it is a half-life that I lead.

But it’s a life I have been gifted and I live it every day.

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