June 29, 2023

So you survived Cancer, now what?...

A little trigger warning and note from me before we begin. I feel privileged to be able to write this blog. It's a very personal account of my Cancer roadtrip, a Cancer that was thankfully caught early through Mammogram and responded as expected through treatment. This is not always the case and I want to honour those who live with metastatic cancers, cancers that are constantly being monitored and those who do not recover. You are all heroes to me. I use humour in dark times and some of that is shared here.

“It’s been a year already Michael, let it go...”

Anyone else remember that Vogels ad? The American girlfriend ate her Kiwi man’s last slice? Or maybe she burnt it? Anyhoo, it’s a great line that I’ve always remembered and have used it for humour for years. Why now you say? Long story short, it was my one year full-pathological response (that's no evidence of Cancer team) Cancerversary this month and it seemed totally appropriate to roll it out again.

But here's the thing, while life is full steam ahead again, that it's been a year already is almost laughable. Cancer never really leaves you metaphorically and sadly for some, physically.

So to honour the road-trip I've been on, to demystify it for others and to ensure I never forget, here's my honest review of the past 18 months.

So, am I over it yet?

No, not by a long shot. But I'm working toward accepting it.

After an initial period, post major active treatment, where I felt high on life and wished that everyone could feel like me, I got brought back to earth with a thud. Cancer never really leaves you see, it's like a bad smell coming from your rubbish bin and no amount of cleaning can get rid of it. It's not so much the disease, or the low-key fear of it recurring for me now. It's the side effects of the meds and the admin post cancer life still requires.

So back in November, I got a telling off from my plastic surgeon for doing too much post another surgery - symmetrising surgery. While totally justified, I felt like I had failed a bit and it was to be major set back (reader, it was not in fact a major set back, I just needed to simmer down and not run before I could walk). So learning to do things more slowly is one of the toughest lessons I have learnt so far. I am not in fact able to do it all now. Bugger.

Plus there's the daily reminders of the scars I have, under each breast, no nipple on one and a hip to hip smiley face that makes me look a little like Frankenstein. The scars are jagged little reminders that my body ain’t what it used to be. That's not a negative, just more of a philosophical rhetorical thought.

The loss of control was an unexpected alien presence in my cancer road-trip. Evidently I’m more of a control freak than I thought. Bodily autonomy, not working the way I wanted, having to show so many people my breasts, it was all very dehumanizing - and I stress that I had the most amazing medical team and my experience was wonderful with all technicians. It was just the way the cookie crumbled.

And then there's the Hormone blockers I'm on for the next decade. The first one (Exemestane) was too brutal for me, the migraines and headaches I had at the start of the year were almost on par with chemo and I went into my shell again. A change in meds (Letrozole) has eased the symptoms somewhat and I'm grateful. Though managing my medication side effects and refilling the pill box are now two rituals I have had to put in my Google calendar to remind myself to do the admin.

So no, I'm not over it, because it won't let me go,but I'm working on radical acceptance of the situation. One phrase I used constantly during cancer is still apt now, 'it is what it is'.

It’s been 581 days since I was told “I’m sorry but you have Breast Cancer”. The two hours following and the 9 months after that moved like a slow moving line of traffic in peak hour. So this is my cancer roadtrip in review, a sort of dissection of it all and a bit of a rating scale...

Let's begin. November 2021 - August 2022

We crawled along through a lumpectomy in December, finding out I needed Chemo January, then Chemo itself from February to May, then a mastectomy and reconstruction in June, with a long slow recovery. A dash of Covid in July.

Being diagnosed with Cancer sucks. Telling your kids you have cancer really sucks. Looking into my husbands eyes when I was told, sucks. Sharing it with my darling mum, my dad and step-mum and my in-laws in Wales, all sucked. Telling my best mates, sucked. I went on a rampage of telling people because I could control that and I so desperately needed control. But it left me reeling & vulnerable afterward.

The chemo fog. It’s only just dawning on me how much chemo made my brain shrink and my confidence tumble. I was heavily reliant on my husbands presence for a feeling of safety. I couldn’t really converse that well and couldn’t really be bothered to do much. I would come “up” toward the end of a cycle, just before the next round and then find myself on the downward slope again. To be fair I do believe that it numbed some anxiousness around cancer, I felt like I was in a bubble and I couldn’t really hear or see much on the outside and that was ok by me. Keeping all things light and breezy worked and kept me feeling safe.

Chemo made my lifelong migraines really chunky, left me with a permanent sense of nausea and the fatigue was like nothing I have ever experienced.

Covid made mine and many others going through cancer, a very different experience. Isolation doesn’t help healing and inspires loneliness to take root. I combated that by sharing my story on social media, writing blogs I thought might be helpful to others and dressing up to the nines for every chemo session.

Losing my hair; now that loss of self hit hard. My path was to shave it off as soon as it started to fall out. Control begets control right? This technique won't be for everyone, but if you're on the fence, it may help you to know someone who did it immediately. I couldn't wait for it to slowly fall out in its own time. The lead up was horrific, the shaving bit was too, but within 20 mins of having a shaved head I felt better, freer, more in control. There's a theme here isn't there!

I rate this period 1/10 for overall shittyness

The Rapture September 2022 to November 2022

It turns out post-Cancer euphoria can be a thing and so can the slump that follows. The euphoria was quite something while it lasted. I felt like a million bucks (with battle scars) and thought I could leap buildings in a single bound. I told everyone I could how fucking joyful I was, like seriously people, you need to get in on this action. Invincibility was the vibe and I was surfing the wave.

I started working again, socialising, baring my tennis-ball-fuzzy-babysoft-grey hair (growth is more apt) and wearing all the fabulous things I had purchased during chemo. Life was a roller coaster of happiness, reconnection and savouring the world again. The hugs I had with my friends again, the time I spent 1:1 in deep connection with them again was nothing short of miraculous.

This period I give an 11/10, I wish it had lasted.

The beat down December 2022 - April 2023

After my final major surgery in mid-November - symmetrising and adjustment surgery for my two boobs - one real, one made of my tummy fat (minus a nipple) - I didn't feel the euphoria of the other surgeries. Mostly because that one wasn't about getting Cancer out of me, it was about aesthetics, so the profound joy I had felt at the other two, didn't follow. Then I started Hormone Blocking treatment - a monthly injection and daily pill. Then the side effects of these took a choke hold on me and didn't let go. Until I had the balls to tell my Oncologist I couldn't cope with nearly daily migraines and headaches and fatigue. Oh fuck me, the fatigue. Here it was again.

It's important to note, I am fortunate to have a drug available to me to help recurrence of my hormone positive Breast Cancer. But the side effects can be brutal. The hot flashes that I got from my daily medication, Exemestane, were comparable to the very worst of menopause, with the added surprise of exclusively sweating from my face. So I realised that 10 years of living like that wasn't possible and changes were made. Some moments of ok and delight, but too much time spent in bed again, starving the migraine of light and noise. Too much neediness again made me feel sick again, I hated it.

This period gets 4/10

The Now - April - June 2023

So now we're here. My medication side effects aren't as brutal and I feel hope and happiness again. I feel more joyful, more consistently again, though the initial wash of euphoria has distilled to a light sprinkle. I’m more aware of my life and it's purpose and where I want to place my energy, aware of my loved ones and their needs along with mine and there feels a deep pressure from within to get this next stage right.

I don’t quite know what that means to my life yet, but seeking the answers is a process that I am enjoying uncovering. I'm open and curious to life and wanting to achieve the nirvana of balance. That's one we could all learn to do right?

This period gets a solid 8/10, room for improvement - but there always is right?

So was there anything good to be found on my road-trip?

There sure was. If you're reading this as a partner or caregiver of someone who is sick, or as someone recently diagnosed, please know there are ok days, there are happy days, there are days you will laugh . You may not belly laugh, but you will have days that are ok. That was some of the most precious advice that was shared with me, that really stuck with me and helped me on down days.

Cancer comes with such a heavy weight of angst and sadness. Feeling ok, happy or joyful seems an emotion too far from reality. But it's not. You can have lighter days, you WILL have lighter days.

Having Cancer has irrevocably changed me, I hope for the better. I feel now like I'm just getting started, that I have so much I want to do, achieve, see, experience and enjoy. I believe having had this disease inside of me, has given me an insight into what true joy can be. I like it, I want more of that, so I will continue to seek it.

My family were always my priority, especially trying to navigate my two young teens through this crazy new reality. They made us so so proud, handling life, one in the first year of high school and the other the first year of NCEA, as best they could. I love them so much and am so happy they're ours. An additional joy has been that my husband and I, after 24 years together are tighter than ever. The potential toll on our marriage really scared me at the start, but quickly evaporated when I experienced the care and devotion he showered on me. We laugh more, we now have a hand signal when the other needs to pull their head in and we don't tend to dwell on the small shitty stuff any longer. I consider that a win.

I'm not going to give the experience an overall rating, that seems needless. Let the numbers speak for themselves at the time they were appointed. There endeth the blog. Thank you for being here, reading along and being such wonderful confidentes.

Before I sign off, I'd be delighted to have conversations with you about this blog, please share your own journey, answer your questions and/or comment below. Let's connect! The more we can share about Cancer experiences, the less mystifying it will be for others coming up the road behind us.

Finally, a cheeky listicle, I know you love a list sisterhood, so here's 10 things that are helping me to rebuild my life, my body and my mental health post Cancer;

Weight training, shadowboxing and working out. I use Shadowcamps by Moni Meredith - who is my online trainer. I joined just prior to being diagnosed and it's been a massive part of my recovery and the first sort of fitness regime I have ever stuck too. It makes me feel strong.
Manicures & Pedicures - I have wierd, gross alien nails growing underneath the new nail, thanks to chemo induced neuropathy, so I have BIB Builder Gel put on, to foster growth and it works a charm.
Breathwork - my friend Sarah Lamb runs Breathwork NZ and using her classes and techniques are a fabulous edition to my life
Gratitude - everyday, 3 things, writing it down, it helps. Manifest that shit baby!
Skincare - my lifelong obsession stepped up a notch and I'm happy to be here. Taking care of my face is important, but, remember you have skin below the neck too! Applying body moisturiser - particularly on scars daily. I make it a non-negotiable to moisturise my body daily.
Planting some veggies and propagating my plants, who knew I could keep things alive, eat them and spawn them. Calming, pleasing and helpful in untold ways. I'm a plant lady now.
Nutrient Rescue - I have it daily, it's my thing.
Regular massage. I used to think this was a nice to have. But it's become an essential tool in helping my body re-calibrate.
Acupuncture - to help with the hot flashes and my energy flow and it forces me to stay still for an hour. Highly recommend for post-cancer and menopause sisters particularly.
Being Alcohol free. It's a story in itself I think, but life without it is just as sweet and celebrations just as wonderful. The benefits outway the initial buzz I used to love and having experienced chemo, hangovers are something to avoid at all costs. But also, the truest of reasons - it has a direct link to causing 7 different cancers, including Breast. I can't see past that as a reason to drink right now.
I couldn't not include this one, so we have eleven. Get yourself a Cancer Crew - perhaps you might meet them online like I did, bonding over shared experiences, or at a Look Good Feel Better Class, or maybe they're sitting in the chemo chair opposite you. A group you can call on (What's App is a great group chat option for this) and ask invasive, personal questions, moan about things without fear and get a second opinion on the weird tingling sensations you've been feeling. You won't regret it.
12. evidently I can’t count. But this should be the final one; looking after my mental health and working through it all with an amazing Mindful self compassion psychologist has been a feeling profound and moving and endlessly helpful exercise.

And finally, please sisterhood, check your boobs and your bits. If anything feels amiss, get it checked out.

EJ x