I’d rather have cancer
I’d like to start by asking you a question – have you ever heard anyone utter the phrase: “I’d rather have cancer?”
The chances are that you haven’t, and yet amongst sufferers of IPF the sentiment is not uncommon. I think there are two reasons for this. The first is based on a brutal fact – people are increasingly cured of cancer, yet no-one has ever been cured of IPF.
The second is a little more subtle. Bear with me here. Clearly I know nothing of your background or personal circumstances but I’ll assume you remember puberty and the ensuing emotional roller-coaster that was your adolescence? It was a time of realising there were things happening inside that you didn’t understand followed by a burning need to form some kind of identity, to be popular, attractive and dare I say; normal? You will have been accepted by some kids and rejected by others as you stepped awkwardly into the baffling world of being a fledgling grown-up. Or was that just me?
I mention this only because those feelings of uncertainty and rejection came flooding back to me a while ago as I was walking through the new Bexley Cancer Wing at St. James’ Hospital in Leeds. It is truly wonderful – fresh, huge open spaces displaying artworks in a calm serine atmosphere not dissimilar to a classy hotel foyer or an upmarket shopping mall. But this ‘shopping mall’ has a very ‘special offer’, one that most visitors simply take for granted, one that is emblazoned on the walls and embedded in the very core of the building and the staff, yet one that is not afforded to the likes of me.
I refer of course, sadly, to hope.
I was suddenly back in the playground feeling the pain of being insanely jealous of those who saw life through gleaming, confident, attractive faces, free of the shackles of acne, spectacles, an encyclopaedic knowledge of military aircraft and a debilitating fear of P.E. Fortunately time has shown my teenage worries to be quite character building, rather than debilitating, however being in the hospital that day presented me with an altogether more adult test. I stood there – and I challenge any IPF patient to do the same – and observed how the building cloaks its inhabitants in a calming sense of positivity, and how its beating, hopeful heart is evident wherever you look.
Might I also ask that as you stand there observing this well oiled machine, you allow the penny to drop that this is actually not for you, it’s for others, presumably less fortunate than yourself; people who are clearly worthy of such investment, such riches, such hope. Then remind yourself that you too carry a serious illness, one with no known cause, no cure and one with a far worse prognosis than many of the cancers we hear so much about, one from which no-one recovers.
The media is full of tips and advice to help us fight off the ‘Big C’. There’s rarely a newspaper, documentary or news bulletin that doesn’t speak its name. Its current popularity is high as the Grim Reaper appears to be running rampant, autograph book in hand, laying claim to a string of recent celebrity victims.
But forgive me – any momentary bout of self-pity on my part shouldn’t be seen as in any way detracting from the horrors of any serious illness. My heart, just like anyone else’s, is broken by the thought of families losing a loved one. All that we – IPF sufferers – ask is that our illness is offered the same respect and parity in terms of research funding and national exposure as other terminal illnesses to help us raise awareness, find better treatments and, ultimately, that Holy Grail…a cure.
In the meantime we’ll stand here, breathless, guilty of no contributory negligence in our diet or lifestyle, yet stricken by a cruel twist of fate that leaves us, just occasionally, dreaming that one day we’ll come home from the hospital with a glimmer of hope in our eyes, embrace our loved ones and announce that things might just turn out fine, saying;
“It’s not IPF after all darling, it’s cancer”.
More from Tony
Read Tony’s second blog post “My Journey with IPF, so far”.