Repeatedly naked in front of strangers - my year of cancer

 “As our body journeys through life, and life journeys on our body…. life will leave marks on us too. From the creases of our wrinkles to the birthmarks on our bodies to the tattoos we decide to place.”

    ~ Lauren Klarfeld, author

I don’t know if I have enough distance - either emotionally or through time - to truly “review” my year of cancer, but my archaeology study starts soon and I won’t have the time nor inclination to write any more blog posts. So this is it, most likely. Before I start I want you to know how much you reading this means to me... I get SUCH a thrill when a post gets read. Thank you, thank you!

Naked and afraid

The title “Repeatedly naked in front of strangers” tickles me, and is a phrase that sums up my 2021 - a large number of strangers (medical professionals, but still strangers!) saw my naked boobies, which was really very odd. I later realised how conditioned I had become to nudity when I accompanied a friend to a medical appointment and was so surprised that she stayed dressed while being examined!

There is something so strange about sitting there with a hospital gown on, open to the front, while someone gets in really close and feels your boob. There is always at least one other medical person in there, plus my own companion, and so I always find myself looking up at the ceiling and trying not to crack awkward jokes to entertain my audience.

Plastic surgeons are the WORST as they take a step or two back and look at you - really look at you, in all your naked discomfort. In that case I look right back at them, searching their face for clues as to how badly I’m failing their symmetry test.

Thank god for oncologists, who have no interest in nudity at all. Well, a naked scalp, of course, but I got to keep my clothes on for that!

I think this must be post-surgery as I look high as a KITE! But look at all that hair :)

The diagnosis appointment is both etched deeply in my memory and yet also weirdly dream-like, as I didn’t take much in after the big C word was mentioned. I do remember though, getting my first surgeon’s exam, while my partner and the breast nurse both looked at me with a mixture of pity, worry, and sadness. At that point my body still felt like my own, and not the impersonal medical domain it became a few months later, so it was very confronting having my breast examined.

A couple of visits later and I started stripping off as soon as I sat down and the surgeon looked terrified and told me to wait for the nurse - whoops! My boobs had ceased to be my own private parts and had become like weird cancer bags that I carried around in my bra.

Cognitive dissonance

I don’t actually know if ‘cognitive dissonance’ is the correct term for this, but it’s the term I use to describe the utter weirdness of: a) being naked in front of strangers when I really didn’t want to be, and b) being friendly to people who were inflicting pain on me. A big part of treatment was having really nice nurses do really mean things to me, and me telling them it was fine and to keep going WHEN ACTUALLY IT IS NOT FINE AND I SHOULD PUNCH YOU AND RUN AWAY!

I knew, of course, that these wonderful people were doing everything they could to make me well and they didn’t want to hurt me. They were just doing their jobs and so I would say “you’re all good, carry on”, “do what you need to do”, or “I’m fine just do the thing” over and over. When in reality it wasn’t good, I wasn’t fine and I didn’t want them to do the thing!

I think that was where my (usually unhelpful) need to people-please came in handy - I was able to put my short-term pain to one side because I knew they were there to help me and I didn’t want to put up any barriers between myself and treatment. Also I wanted them to like me and tell me how awesome I was doing. Approval-whoring is not a great coping mechanism, but it’s the one I’ve got and it mostly worked well these past 12 months.

Dr. Google ain’t great, but sometimes it IS cancer!

Looking back I knew something was wrong for a while - I hadn’t felt right for a long time but couldn’t put my finger on it. Apparently the fibroids and the breast tumour could have been growing for up to ten years!

I tried so many different diets and supplements and exercise and therapies but nothing ever sorted it completely. Along the way I learned I have Hashimoto’s Hypothyroidism, which felt like a huge deal at the time but is quite manageable now.

Say "aaah crap you know everything about me"

I definitely felt the “Google says everything is cancer!” shame along this path, and would like to go back to those people and tell them to pull their heads in... sometimes it IS cancer, and being told that you are a stupid / hysterical / naive woman for looking at health resources online is actually really damaging. Perhaps I’d have noticed the estrogen link between fibroids and breast cancer if I didn’t automatically filter out anything cancer-related for fear of ridicule.

But these types of thoughts ultimately aren’t helpful on this side of treatment, which is a nice dovetail to...

Lessons and gifts

A year ago I wrote an episode called Lessons and Gifts where I said: Right now my December 2020 breast cancer diagnosis is too new and too raw for me to clearly see where the lessons and the gifts lie, but I trust that at some point soon I will look back and know. This blog will help with that. I’m grateful that I have space to rest and reflect, but it’s a strange time of healing and waiting and wondering what comes next.

At that point I was in the liminal space between diagnosis and surgery, and we didn’t know very much, other than the fact the tumour was Grade 3, which is the most “active” cancer grade. (Not to be confused with the Stage - I had Stage 2a cancer but we didn’t know that then). I was recovering from a hysterectomy and trying to learn about breast cancer without freaking myself out too much. Chemotherapy seemed like something from a horror movie, and I hadn’t told many people about my diagnosis. It was a strange wee time for sure.

I was right that writing this blog was extremely helpful in processing what was happening, and helped me find the lessons and the gifts for sure. If I had known then what I know now I wouldn’t have had the hysterectomy, as the fibroids would have begun shrinking after chemo and the aromatase inhibitors I now take.

I probably would have gone straight to the mastectomy and saved myself a lot of extra surgery... although having said that we now know that the breast tissue was totally clear so I didn’t actually need the mastectomy after all. Dammit. But by having the mastectomy I avoided radiotherapy - you can see how it’s a trap for circular thinking!

Ultimately the “cancer rollercoaster” (I finally found a replacement for “journey”!) I have been on was the one that I had and there’s nothing I can do about it now. Everything is different in hindsight... if I have one thing to say to cancer newbies then that is to buckle up and roll with it - things can change so much at each pathology result, each doctor visit, each infusion. I’ve had to learn to not get too tied up in pre-planning or mulling over things too much as everything can change in an instant.

My top three lessons:

Not everything happens for a reason - sometimes shitty things happen to good people. I didn’t “cause” my cancer - it will be a complex combination of genetic, environmental and lifestyle things plus some dumb luck.

Initially I felt really embarrassed about getting cancer because vegetarians are supposed to be healthy, right? But very quickly I stopped caring about what other people might say about my cancer and focussed only on what the doctors said and how I felt.

I’m not as into natural health as I thought I was - I had always assumed that if I was given a scary diagnosis I’d go full green-smoothie-mode but I didn’t. I definitely explored complementary therapies but for me they were things to complement my treatment, not alternatives to treatment.

Maybe it was the homeopath telling me that my fibroids were my body’s way of saying that it wanted me to have a baby (yes, this ACTUALLY HAPPENED!) or maybe it’s the fact that the wellness world is getting caught up in the whole (I’ll spell it out so I don’t get harassed) anti vee-ay-ex paradigm.

Whatever it is, I’m still a believer that good food, sleep, movement, and stress management are super important for health but it’s chemo and surgery that removed my tumour, not meditation and essential oils. Meditation and oils helped me relax and that’s important, but it’s the conventional treatments that did the heavy lifting.

I’ve gotten better at not always trying to fix things - I apologise for every time I’ve tried to make you feel better by starting a sentence with “oh well at least...” or some other platitude. I’m sorry, I didn’t understand how totally unhelpful that is.

I am always super uncomfortable if someone is unhappy or a situation is not right... I want to fix it, to make everything ok, and to make you happy again. But I’ve learned that we need to work through our tough stuff, to feel the feelings, and having it minimised by someone wanting to cheer us up isn’t good.

It’s taken me 47 years to work that out but I’m here now. I look forward to learning more about how to hold space for people in their tough times.

My top three gifts:

I know exactly how strong I am, and exactly how loved - someone told me that saying at the beginning of my cancer rollercoaster and it made me cry at the time... it seemed so beautiful and I didn’t feel at all strong. I’d also always struggled with feeling unlovable so it felt like it wouldn’t apply to me. But it did! I found strength I didn’t know I had (mostly because there’s not a lot of choices... do this thing or risk dying), but I still surprised myself at how I handled things - one step at a time.

And the love... so much love from people! People I’ve known for decades, people who are newish to my life, and even random Instagram people... I’ve felt the love and it kept me going.

But most importantly, and most cheesily, I’ve truly begun to love and value myself - accepting and appreciating the “flaws” along with the fab, and that will make the second half of my life a million times better.

I’ve got my priorities sorted - there’s nothing quite like a cancer diagnosis to sort out what really matters. I think this is why, for all the hard times 2021 threw at me, I don’t wish I’d never had cancer. Perhaps it’s my self-preservation kicking in, but I have grown so much and gained such clarity over what I want to do with my time that I can’t wish it all away.

I’d gladly cherry-pick the good bits and leave the - I dunno - chemo-induced diarrhoea in the “no thanks!” basket... but I think that without this shitty (pun intended) year I’d not be studying archaeology. Or really truly liking who I am. And if I came to the end of my life without having done that I reckon I’d be really sad.

Our health system is amazing (but needs help) - I think every health system in the world needs help of some kind (I think it’s because we focus too much on being an economy not a community but that’s a whole other rant). However, having read about what the American health system puts people through is sobering. Sometimes on chemo I couldn’t think beyond getting to the couch after my shower and yet patients in the US are made to repeatedly justify their treatment and fill in forms, make calls, do all sorts of things that I know would have been well beyond me.

I’m so grateful for our health service but bloody hell our nurses need better staffing levels. If you feel like writing to your local MP about that, I’d be very grateful.

So, what now?

It is SO NICE to have active treatment over with - no more surgery until 2023 - and to get to know my body again. I have changed a lot, I feel like a very different person to the one who sat in that diagnosis appointment. For a couple of months now I’ve not had to be nice to people who are inflicting pain on me, I’ve not had a random doctor / nurse / medical student / imaging person see me naked, and I’ve not seen a pharmacist or phlebotomist. These things are all good things.

But it’s not over, there’s side-effects from hormone treatment just starting to make their presence felt, I still feel very connected to “cancer land”, and I’m still processing things that happened. It was a LONG year. Not all of it went smoothly and there’s some trauma to work through.

Something that surprised me recently was feeling grief about my hysterectomy - it got so lost in the cancer diagnosis that it’s only now I’ve got breathing room that it’s popping up to say hi. I have a lot of anxiety around the cancer coming back, I think about that multiple times a day. My body image is a bit all over the place - to be honest I kind of look like I’ve been through a blender, which can be hard to deal with sometimes. The scars will fade but my body still feels less mine than it used to.

Covid is a worry, and it’s scary that NZ is no longer protecting the vulnerable but leaving it up to us to self-isolate. It’s awful knowing that a lot of people prioritise their ability to go to a concert over my actual LIFE, but I’m grateful that covid is hitting us post-vaccine and post-active-treatment. I’m so worried for the nurses and people with underlying health issues. Our health system has been good to me but I could see it was tearing at the seams even before covid hit.

I know things will get easier as time goes on, and I’m generally pretty happy in my day-to-day life. If I’m not able to balance the need for symptom vigilance with avoiding hyper-vigilance then I’ll seek help. Same goes for the anxiety. I’m absolutely cut out for sheltering in place as I love being home all day every day but I do worry I’ll become a bit reclusive. It’s hard to tell where the line between safety and avoidance is some days.

Just like during treatment, it’s helpful to not look too far ahead - there’s enough going on to still be taking each day as it comes.

So that’s my year of nude boobs for youse. I hope you’ve enjoyed reading these episodes - I know cancer isn’t exactly cheerful subject matter but there’s always a bit of dark humour lurking around the hospital corridors. I’m really proud that I kept my promise to write each month, and it has reminded me how much I love writing. I’m even looking forward to writing academically again!