Information overload: being diagnosed with cancer
If you’re fortunate enough to have avoided a chronic or life-threatening condition, you may never have considered what actually happens when someone receives bad news from a healthcare professional. We’ve all seen it it dramatised in films and on TV, but I wanted to share my experience and thoughts about how mine went down in real life.
In mid August, I was excitedly setting my out-of-office message in anticipation of a fun weekend in Amsterdam when the phone rang. It was a doctor from the breast clinic at Llandough hospital. The call went something like this:
‘Hi Nia. It’s — from Llandough hospital. I have your biopsy results, and you’re going to have to come to the hospital this morning so we can discuss them.’
‘But I’m going on holiday today.’
‘I’m really going to need you to come in as soon as possible.’
‘My flight’s at 3. Can’t you tell me over the phone?’
‘I’d feel more comfortable discussing it in person. I really need you to come in.’
That’s when the penny dropped.
‘Shit. It’s cancer, isn’t it?’
Her refusal to tell me over the phone confirmed it was bad news. By not telling me the results, she had essentially told me it was something sinister.
We went around in circles for another minute until I had some sort of panic attack and passed the phone to my partner who was also starting to freak out. We called a taxi and tried to hold back the tears. Within an hour of waking up, we were at the breast clinic. There we were led from the standard waiting rooms and wards to a small, off-white room with comfy chairs, a heap of interior design magazines from 2014, and offered tea and coffee. It had that unnatural feeling you get stepping into an IKEA showroom.
The phrase no one wants to hear
Once you’re sat in that room, there’s no turning back.
We met with the doctor and my newly assigned breast nurse. The biopsy results showed that a lump in my left breast was cancerous. But I’d need a number of tests and scans before we could assess the gravity of the situation and decide a course of treatment.
I was handed a colossal folder bursting with leaflets covering everything from what cancer is to chemotherapy side effects, and was reassured that there would probably be a number of treatment options available. Breast cancer “survival rates” were better than other cancers, apparently.
When you’re told you have cancer, the last phrase you want to hear is ‘survival rates’. You’re overwhelmed, scared almost to the point of paralysis, and the word that you latch onto is ‘survival’.
As a content writer dealing with the intricacies of language and communication, I understand the need for clinical terms. But I also firmly believe in giving users (or patients, in this case) the information they need, when they need it, and in a way they can easily digest.
Looking back, what information did I really need at that first appointment? Without further tests and scans, all I knew was that treatment would be a combination of chemotherapy, radiotherapy and surgery. When that would start and how long it would take were rough estimations. Yet this was the information I needed to get my head around the situation. And perhaps the reassurance that everything would be okay, one way or another. The mere mention of survival rates made my head spin.
My partner sat in limbo as I was led to various rooms: I cried when they used what I can only describe as a wall stapler to insert a titanium clip into the tumour. I closed my eyes as they used a long needle to biopsy an enlarged lymph gland in my armpit. I gritted my teeth as they clamped my breasts between two cold mammogram plates. I put on a brave face when I was led back to the off-white room.
Leaving with a plan
Our first meeting thankfully finished with a plan: I was booked in for more appointments the following week, and we were sent on our merry way to “enjoy ourselves in Amsterdam”.
It reminded me of a funny anecdote from a friend who, when recounting the birth of his son, told me about the incredible support you receive during the birth, only to be quickly ushered through the exit the moment the baby arrives with little idea of what to do with it. In my case it was cancer, but it felt the same. (What the fuck?! I had cancer!)
Within the space of two hours we found that our way of thinking had radically changed from focusing on the future to taking things day by day. Not knowing the extent of the cancer was ghastly. But we had a plan for the next week, something we used to calm each other whenever panic rose.
There was no point spending a weekend worrying (or worse, Googling) at home, so we passed it in a bit of a daze wandering Amsterdam’s canals and parks with friends. We kept things quiet from our families until we had more concrete information and a treatment plan.
Lacking information vs information overload
Lacking information can be frustrating. But an excess of information can be petrifying and difficult to digest — especially when you’re under stress. The realities of the digital age also mean that we now have access to more information than ever, but that doesn’t mean it’s relevant, or even true.
My advice to anyone in a similar situation?
- Make a list of the information you feel would help you better understand your situation, and take it to appointments.
- Take notes or record your conversations with healthcare professionals so you can go through them when you’re feeling up to it.
- Set aside any literature that’s not relevant to you at that point in time. You can come back to it later.
- Don’t be afraid to clarify words or terms that you don’t understand.
- Be careful what you Google, the rabbit warren of health forums can be an anxiety-inducing place.
Finally, listen to your gut and if something doesn’t feel or sound right, be sure to say so. As the wise Karl Pilkington says:
“The problem is, these days you have to listen to too many parts of your body. Sometimes I go with my gut feeling, some say go with what your heart says — it’s only a matter of time before my appendix will have an opinion. This is probably why there are so many helplines these days. No one knows who to bloody listen to!”
― Karl Pilkington, The Further Adventures of An Idiot Abroad
