After illness: things are never the same again

When I read about fellow author Stephanie Butland’s article about why coping with life after cancer is harder than the treatment (links to Daily Mail website – my apologies), I felt I’d found a kindred soul.

A decade ago, I had multiple life-saving lung surgeries after being diagnosed with recurrent right-sided pneumothoraces.

lungs

After it was all over, the procedures, the time in hospital, the half-recovery, like Stephanie, I didn’t bounce back.

For whatever reason, my right lung had started to perforate in patches and collapse and I needed surgery to remove the most damaged section and glue my lung to the plural wall to protect it from further collapses.

(I needed more than one surgery because the initial procedure was unsuccessful and my first pneumothorax after my surgery resulted in my right lung collapsing to the side of a tennis ball.)

While in hospital and recovering from my surgery, my focus was to fight – and it’s labelled a fight by everyone around you. You are taking part in a battle and you must win. In Stephanie’s words, you are given “a sense of purpose”.

Afterwards, when the fight is over, people see you differently. You are victorious. You should be happy. You should be grateful.

As Stephanie says, “You go from patient to survivor and somehow, despite still feeling battered and emotionally exhausted, you’re supposed to greet every day as though it’s a huge celebration.”

While Stephanie worries that the cancer could return, my condition has never gone away. My right lung still perforates, it’s just no longer able to fully collapse, removing the risk of the pressure from a right-sided collapse to cause a pneumothorax in my left lung.

My medical team have admitted they don’t know why I’ve had recurrent lung collapses. A pneumothorax is usually a one-off event – recurrent collapses are rare – so there’s no research to fall back on.

There is a possible link to be being an IUGR baby (links to Wikipedia), but this is speculation. So I’m left with a half-diagnosis and no way to reach closure.

Stephanie recalls post-operative pain and drug side-effects that caused nausea, breathlessness and crippling cramping pains in her legs. Her treatment also caused “crushing tiredness”.

In her article, Stephanie doesn’t say if she still suffers from any of these symptoms – and I really hope she’s symptom-free.

My breathlessness and chest pains are a constant reminder that I’m living with my condition. I have post-operative neuropathic pain from intercostal nerve damage which, although it has lessened from the intense pain it was 10 years ago, can still cause lightening-strikes of pain that will leave me doubled over. I also suffer from frequent bouts of pleurisy.

There are also the strange side-effect, such as the frozen shoulder on my right side from years of sleeping tense. And this has a knock-on effect in other areas of my life. It never occurred to me that having a lung condition would make tying my hair up difficult. I’ve taken to wearing it in a side ponytail.

At the end of her article, Stephanie writes: “I’m not saying for a moment that women like me will never learn to live with our scars, both physical and emotional.”

I think the key thing here is “learning to live with”. Anyone who gets a diagnosis of a life-threatening medical condition, who goes through treatment, and comes out the other side has to adjust to a new version of themselves.

Ten years on, I’m nothing like the person I was before my surgeries and I know I never will be that person again.

What do you think?

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