Patient perspective

A Cancer Story – by Adele Cubitt Cohen

Adele Cubitt Cohen
Adele Cubitt Cohen

 

I had breast cancer. Six months ago now.  I was diagnosed last July, went straight to IVF, then chemo, then surgery, and now I’m cancer free. Not treatment-free; I’ll have herceptin infusions until September and be in clinical menopause for five years or so.

What was my life like prior to cancer? I’d just got married, we’d moved into our first home, had seen my GP for some folic acid to start trying for a baby, and was blissfully unaware that my boob was not okay.  That I was not okay.

My sister is a doctor. She asked if there was anything I’d like to share about my experience.  Oh, yes. Yes there was.  Because I don’t think people share enough.  I think those with health issues (which, let’s face it, is all of us at some point) don’t talk about it and those without them think these things simply happen to someone else or when we’re seventy-nine years old.

I was like that.  I didn’t check my boobs; never considered cancer a possibility. Even after knowing two women in their 30s that had breast cancer, I still didn’t coppafeel.  It was not anywhere on my radar and thus I shrugged off the idea when I first found the lump.  But, once the diagnosis was made and reality hit, a new world opened up to me that I had no idea about – and I was terrified about entering it.

About the IVF, to start.  We don’t talk about the experience of infertility openly, nor the rollercoaster of IVF, nor how to live well knowing you won’t have the kids you so wanted.  Even when I asked people what to expect, they didn’t tell me that egg retrieval was going to hurt or that I’d start panicking when the counting of the follicles began.  Or that my husband would feel helpless in what is supposed to be a joint endeavour.  Or that the fertility clinic’s waiting room seems sadder than the oncology one. Luckily our IVF was successful – you definitely don’t want to find out you have fertility issues while trying to preserve your fertility pre-chemo – and luckily we have six embryos on ice.

Then chemo.  The idea of this was terrifying. I’d seen those cancer movies. I assumed I would be couch bound, like one big, bald, sick baby.   But, I wasn’t.  I was still me –  admittedly, a very bald me: I still had fun, I still exercised, I still went to gigs and dinner, I still saw friends.  There were bad moments and bad days, especially at both the beginning and the end, and I was in a perpetual chemo fog and had to limit my work, but I was not consumed by chemo. It didn’t change me.

I would’ve loved to have known this upfront, to see others like me, still being themselves, still laughing.  I imagine that’s the case with any illness or condition – the idea of it is worse than the reality, as you adapt to your new normal, and you can still be you, even when it’s shit. And, let’s face it, you don’t have a choice when it’s happening to you: you just do as you’re told and put one foot in front of the other to survive.  You’re not brave, you’re not a “fighter”, you’re basically a sheep.

My oncologist was fabulous.  Her first question was to ask what was important to me. One was being active and the other was having a baby.  So this became important to her, and she made a point of referring to it without prompting.  I felt like she was on my side.  She even hooked me up on a date with another one of her patients who is now a good friend. Having ‘someone like you’ to talk to, who is going through the same thing, is gold.

Then surgery (times three – one thanks to a complication).  That was the hardest, I admit.  No one wants to be in pain and to be immobile, but it wasn’t cancer.  So I put on my big girl pants and just rode it out. And when things went wrong, I was impressed with how much I seemed to be a priority – over Christmas no less. I did feel overwhelmed and debilitated by the fear of making the wrong decision on what surgeries to have, even though there wasn’t much of a choice in the end.  If I could have my time again, I think I would have valued more information and discussions upfront that addressed my fears.

Other than a few stints in the oncology ward with weird side-effects, I ended up in the Emergency Room twice: once after egg retrieval and the other after surgery for a suspected infection.

The first time I was in pain, and ended up staying overnight. I remember it taking a long time to see a doctor, but a nurse gave me morphine quickly, and for that I was grateful. I was transferred to a gynae ward, where it took even longer to be seen (well past my bedtime.) With the timing, it seemed standard to keep me overnight by that point, which may have been an unnecessary expense to the taxpayer. Maybe I could’ve gone there directly or someone could’ve popped in to the ER? Is there an additional step in your screening process that is missing? It’s clear you’re all swamped, but often busyness or costs are barriers to making changes that can decrease busyness and costs.

The second time was kind of fun.  I was not in discomfort, was with my parents, and the staff were hilarious. It helped. Again the ER doc transferred me to a surgical ward for a review, and another wait, before being sent home. But I was used to waiting by then. Waiting was my new normal.  I imagine that’s far from the case for most people whose lives are not dominated by waiting to see health professionals.

So. My takeaways?

  1. People are kind. I knew this before, but then I knew knew this only once I had cancer.  From my medical team, the volunteers, people I encountered in the hallways, friends, family, other patients, and strangers alike. So kind. It helps.  Oh, and the wit.  I’ve never laughed so much.
  2. Know your body’s own normal and do something about it if it changes. Make sure your friends and family do too.  And then your patients.  Hell, let’s change the world and include “Know your normal” in our schools, GPs and work places (they pay for flu shots after all).
  3. What about regular health (mental and physical) check ups (like a vehicle inspection for your car!) with all of us regularly getting checked out through a standardised checklist (which could be taught at schools as part of “Know your normal”!)? This could reduce the reliance on (unreliable) humans knowing and remembering symptoms, and ensure all GPs beat from the same drum (the one I saw was certain my tumours weren’t “pea-shaped enough” to be cancer). I know this happens with the elderly and probably under insurance pre-screening, but couldn’t it be more of our norm? Could we switch our crisis, “ambulance at bottom of the cliff” approach to be more proactive and standardised? Maybe you guys could even band together and think up a stellar solution and talk to our education providers, media, employers, insurers and who-knows-who-else to make a big change?
  4. Let’s talk about health issues and conditions more to normalise and humanise them. It’ll make things less scary – and trust me they’re scary – to hear from people you relate to in advance (think more Triple J than pamphlets!) and it’ll help all of us be more informed about what to look out for.  The old people in the chemo ward were old hacks at the cancer malarky because they knew so many people who had it.  We need to bring that experience into all age groups, all conditions and disabilities to show what living with it is like, which can help us be aware of our bodies, proactive about our health, and less scared if the shit hits the fan.
  5. And, a bit of a re-think about communication for those who have been diagnosed would be great too, especially in this digital age. All the pastel-coloured pamphlets and long-winded printouts from medical sites weren’t really that helpful. Maybe you can start compiling a FAQ and top tips that you hear and turn them into online comms, or make little videos showing what to look out for?  We want practical advice, not platitudes or generalisations. If we don’t get it from you, we’re getting it from each other, google or quacks, and how reliable is that?!
  6. We’re not exactly paying attention when you’re telling us scary stuff either. Make sure we have someone in the room who can take notes or email us with a summary. (And no, we can’t decipher your medical reports. Use real language. I didn’t even know what febrile meant).
  7. Remember that (1) we talk to nurses more than doctors; and (2) patients compare notes (often in social media forums!). So, consistency and quality of information is key.  Sometimes my nurses said different things to my doctor, or a nurse said something different to another nurse, or a doctor from a different speciality said something else entirely, or another patient was given a tip to combat a side effect but I wasn’t.  I know we’re all different, and being entirely on the same page isn’t plausible, but maybe there are ways to share information a bit better? A bit of a ‘to do’ list to ensure we’re at least being told the same things upfront would be a start.
  8. We don’t really get all you doctors. There’s a speciality for everything.  This means (1) sometimes we don’t know who is our primary carer (2) it can get awkward when our doctors disagree; and (3) we’ve got a crapload of appointments at different places looking at different things, which all begin with us repeating ourselves.  I’m not sure what the answer is, but just know it’s hard being on the receiving end of that.
  9. Oh, please sort out the food! Probably different in the private system, but you really can’t preach to people to be healthy and then feed them crap. No one’s going to want to eat kale when miserable, but healthy options for hospital food is a great way to educate.  As someone with cancer, simply saying “Eat a Mediterranean diet” doesn’t really go far enough.  Give us detail, tell us how we can thrive and help ourselves, and debunk all the myths!
  10. Exercise kept me sane, got me out of bed and out of the house, helped me feel I had some degree of control, prepared me for surgery, and perhaps even helped me manage side-effects. My motto was “do it unless I really can’t”.  So, pay it forward and tell your patients – maybe even partner with studios to make it cheap or free.
  11. Waiting makes people anxious. People are already scared and waiting around for an unknown time and hearing all the sounds makes it worse.  If there was a way to give people a time indication or a screening process beyond triage if at the ER, that would help.  Or screen them online and get them to come closer to a time? And have volunteers to chat if people are alone.  And put plants in your waiting rooms.  And partner with a supermarket to get updated magazines. Make your waiting rooms less scary, people!
  12. And, a final big one from me, connect with those that you care about. Find time to laugh and enjoy life.  Stress and unhappiness are simply not worth it.

About Adele Cubitt Cohen

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