N.E.D - 4 Years On

It was four years and many moons ago....

To my boobs, it's been four long, short, confusing, happy, joyful, frustrating years since you became your new form and I was told there was NED.  No Evidence of Disease.  The closest I will ever get to being "cancer free".  

Mastectomies are a strange thing when faced with one (or two).  My experience was that my breast was a diseased limb that needed to be gone.  I was accepting of that.  But what a trip it was regardless, saying goodbye, stung.  You can read my goodbye to my boobs love/hate letter here.  

But now, four years later, my cancer roadtrip still hasn't run out of petrol, it's like an energiser bunny, never running out of life and there's always a little reminder, never far from the corners of my mind. 

Whether it's a blood test for oncology check ups, a scan for migraines that I automatically things is a brain tumour or the 'shadow' on my gum that I thought was mouth cancer, turns out it was an abscess.  The Cancer patient is never far from cancer, even when you're through the worst and have N.E.D. But the horror is dimming and the glimmers have started to blossom again. 

It was June 15th 2022 when my boob was amputated and a new one made from my stomach.  Thank you old me for growing a little soft pouch that allowed me to be the perfect candidate for a diep flap reconstruction.  Since my mastectomy and reconstruction, I've had further surgeries but nothing that had cancer as the reason.  It was cosmetic or due to the medication causing some complications, or a tooth abcess that led to extration - another thing my body rejected.  Oh well, that's alright, that's okay.  Right?  I should be used to all this body rejecting, morphing and changing thing by now.  Well it's a process and here's some things I've learnt in the past 4 years.

Good stuff I know to be true 

(This is the photo I sent my family, prior to going into surgery on this day, 2022. With COVID restrictions, my husband had to drop me at the door of the hospital and I had to go in alone.  While that was tough, I actually ended up skipping into surgery and loved the feeling of going under.  Finally, the final piece of the cancer puzzle would be solved.)

I realise I married the best man for me, the one who has never let me feel like a complaining blob, who found fatigue and migraines as her daily reminder that cancer left it's mark.  Through it all, you've helped me, soothed me, sought answers and chose to be a calm and constant presence for our family and me.  Thanks H, you're the best. 

I realise that my kids are absolute superstars, going through their mum having cancer in the middle of COVID and being forced to have a house with no visitors for 9 months or a very present mum for the best part of three years, was a card that no teen needs. Thank you my darling boys. Seeing you thriving and spreading your wings now, is a true delight.

I know what I want more than ever and I'm so happy in my world.  I don't need endless optimisation anymore.  I just want and need good people, love, my animals, some hobbies and movement and travel, lots of travel.  

I learnt what love I already have in my life and I am the richest person because of it.  I was able to reflect recently on all the people that guided me through cancer.  They're the real ones, the notes, texts, gifts, food, encouragement, help, care and funny memes.  I'm a lucky woman for the community I have in my life.  I am rich, rich, rich because of it. 

I have found the movement I love and I'm finally capable again of lifting heavy, doing pilates, playing padel and tennis and walking my dog.  It's only taken me 52 years but I'm so grateful for figuring out what's best for my body.

The fatigue and migraines from medication side effects and menopause that I now have to raw-dog without HRT, is much improved and I feel like I'm finally getting my life back - four years post treatment.  

I see the world and life differently, sweating the small stuff isn't an option anymore, because the big thing happened.  I hated the effects of treatment but I am glad for the learning that life and people are precious.  After all, "He aha te mea nui o te ao? He tangata, he tangata, he tangata. What is the most important thing in the world? It is the people, it is the people, it is the people.”

Some learnings on post-treament life, for those coming behind me.

Firstly, I'm sorry you have had to hear the words, "I'm sorry, but you have cancer". However, one thing I have learnt in all of this, with cancer, you are generally very well cared for.  You have a team, surgeons, oncologists, nurses that you can call on and find out more from.  You are generally given a path to follow and you follow it, step by step, day by day.  But that's not always the case for those with other diseases or chronic illnesses and I'm grateful I had the care I had.  But I have so much empathy for those that do not have that. So when someone says to me, 'my issues are nothing like yours" I say "yes they are", because everyone is going through something, everyone has their own story, and it's important we don't assume that one is worse, it's just different and the experiences are all so disparate.  Cancer sucks, but so does plenty of other things that our friends and families go through.  

Whatever you do, allow yourself the grace post-treatment.  My brain fog has really only lifted fully in the past year.  That's 4 years post treatment and I definitely don't run on the same brain power or energy that I used too.  I make allowances.  You'll get frustrated and want answers, but things that have helped are: lowering or stopping alcohol in take, brain games like WORDLE, getting help when filling out forms, telling those around you that your brain capacity or fatigues is a bit of a sticky situation and you may need extra time, movement and sleep - so much sleep.  

Advocate for yourself and don't skip any medical appointments, even when you're scared.  Your life has changed with cancer treatment and you'll likely react quite differently to what was your normal before.  I didn't go to a friends 50th in Sydney, because I ended up in a cataonic state when I found out I needed a fairly routine surgery to clear my uterine lining due to a Tamoxifen side effect.  The story I told myself was, it was cancer again.  This isn't to scare you, it's to say, shitty experiences will still happen, we're not immune to them because we once had cancer.  But I knew something wasn't right, I was sent to a specialist and more surgery was needed.  I took it in stride, but it destabilised me and sent me into a spin for a few weeks.  Recently, I had a dental issue and the word shadow came up in conversation.  I assumed I had cancer again.  All this to say, get yourself checked, despite what might come your way, because what I know to be true is knowledge is power and you can work with knowledge, not guess work. 

You will think about cancer a lot, but one big change I made was to delete all the dates I had put in our google calendar, naming every big moment of cancer - the day of the mammogram when they found it, the next day biopsy, the dates of every surgery,  the date of diagnosis, the chemo start and end dates.  It was my darling husband that sat me down one night, after I was sad he hadn't acknowledged one of these dates, and said' "why are you celebrating the sad stuff still"?  This changed my perspective instantly.  We deleted all the dates and now their vaguely remembered.  I even forgot that this date, the one I'm allowed in the diary, was coming up.  I even got it wrong, I thought it was the 14th.  Turns out, time and healing does help and happen.  Now, I recognise June 15th, not as the mastectomy date so much, but as I mentioned earlier, the date that I got the sign off on N.E.D.  That's so worth celebrating.  

When you can and especially if you're midlife and most especially, menopausal, start lifting heavy shit.  Whichever way you can.  We gals need this for future selves, getting out of chairs and moving into times where we can't take movement for granted.  But most importantly, we need it for bone density.  This is particularly true for those who've had Breast Cancer that requires hormone suppresants following treatment.  They turn you into a dry, brittle husk, but strength training is your answer.  And it feels flipping good.  Like seriously, I can lift and I can kick cancer.  Does that make me bad ass?  I'm gonna say yes.  

What more is there to say

I'll mark 5 years NED next year and that's going to be a hell of a time, because that's when oncology suggests the recurrance window is the highest. I don't fear what may come around for me anymore, it is what it is and as my post cancer/turning 50 tattoo says "let it be".  But to get to 5 years will be a good thing honey.  

So to my cancer warriors who read this and to all my midlife warriors too, get yourself checked, don't shy away from knowing your body, ignorance is NOT bliss. Get familar with it and acknowledge changes or get them checked.  Growing old is an absolute privalege.  We want you here for a long time AND a good time. Early detection in Breast Cancer is so very successfully treated.  We can all do hard things.  Check your boobs and your bits.

Thanks for being here and reading my story.  Ask any questions, I'm happy to answer them.

Love EJ x