Sunday, April 14, 2024

Honest Chats About Breast Cancer: ‘Feeling the Feels’, Chemo-Insomnia and Why You Need to Ignore Google

As we near the final days of October – Breast Cancer Awareness Month – we’re here just to give you another friendly, gentle reminder about being breast aware.

The age for getting a free mammogram may still be 45, but breast cancer is continuing to affect those far younger – and at an increasing rate.

Helen King was just 37 when she was diagnosed with an aggressive form of breast cancer. It was mid- 2018 when she discovered a small, hard lump in her right breast as she took a shower. She’d had a hell of a few years – a divorce, depression, and was due to start a new job the very next day. After a mastectomy, chemotherapy and radiation, Helen had her regular mammogram this last June and is now two years post diagnosis without recurrence.

This year, just a few months back, she started up a refreshingly honest podcast called The C Word, which she presents and produces, with some help from her side-kick and guest presenter, Belinda Tran-Lawrence.

Helen uses her platform to give people who’ve lived this experience a voice, to share what they’ve gone through, what they’ve learned – to uplift and educate others.

Here, Helen talks to us about the ins and outs of her podcast, her own cancer journey, why Googling is the worst and why, sometimes, it’s okay to just be miserable.

Can you tell us a bit about The C Word? What do you discuss and what it is all about?
Mostly we talk about how cancer has impacted our lives – we often go on tangents – I tease Belinda with some of my more horrific chemo stories. We discuss the things no one tells you about; what it’s really like going through early menopause, that when your hair falls out during chemo ALL of your hair grows out, and that it’s normal to be exhausted long after treatment ends. 

It must be an amazing resource for women who have found themselves in that club no one wants to join – the breast cancer club. What do you hope your podcast achieves?
We want to create something for the person who is awake at 3am from chemo insomnia can listen to and know the fear is normal. And that it gets better, you just need to get through the rough part.  It was really important to us to create something that felt real, that doesn’t gloss over the sometimes cruel reality of cancer. You don’t often see stories about the tough few years after treatment finishes – that isn’t to say it’s all bad. More that healing takes time and it’s really normal to feel different once treatment ends. 

What has been the response so far?
Really positive! We’re slowly gaining a loyal audience…that isn’t just family. Recently I’ve had a couple of people message me to say they love the show. One woman said it is filling the gap of post treatment care because there really isn’t much for you once treatment ends. And another thanked us for being vulnerable and real, I was really happy when I read that because that’s what we are hoping to do. 

I’ve heard you talking about how breast cancer is often seen as this “nice, pink, friendly” cancer – but, really, that couldn’t be further from the reality of living through it . Why did you feel it was important to create a platform to talk about cancer where you talk openly about what it’s like to experience it  – including all the negative?  
I think people want to see cancer as this thing you battle, that a person is brave for ‘beating’ it. The reality is cancer is brutal, we aren’t all cured of it and those living with cancer aren’t any less brave than those who go into remission. I think Kiwis find it hard to talk about their feelings, we’re creating a space where people can talk about the ups and downs. I guess we’re trying to normalise the entire experience and educate people that cancer doesn’t stop once you finish treatment. It’s a life changing event for many people. Basically we’re saying it’s Ok not to be the cancer warrior, you can be a miserable cancer patient if you want because cancer is miserable. 

Helen undergoing treatment in September 2018

You were just 37 when you were diagnosed with breast cancer. Often there is this mentality that it’s not something we need to worry about until we’re 45. What’s your message to younger women – who are increasingly being diagnosed – about being more aware of their own breast health?
Never feel something is not important enough to get checked out by a doctor. I’ve had people message me since my diagnosis saying ‘it’s probably nothing, I don’t want to bother the doctor’. I tell them they should definitely bother the doctor! It’s better to know, in my case the cancer was very aggressive and leaving it a month or so would have meant the difference between curative treatment and life extending. And if they don’t feel the doctor is taking them seriously, push for a test.  Sarah Gandy joined us this week and we were amazed with how similar our stories are – we were lucky we got onto our symptoms quickly because breast cancer can be so much more aggressive in younger people. I love her message with Change & Check because knowledge can save lives. 

What don’t we talk about enough, when it comes to breast cancer?
How it impacts a person’s life when you’ve had it and it will take a while to figure out how to pick your life back up. 

What do you know now that you wish you had known right at the start when you were diagnosed?
That I’d be in bed for four months….and that is OK! Your body needs the time to heal, what you’re going through is a massive, life changing event and there’s no right way to respond to it. 

What would you say to a friend who has just been diagnosed?
Don’t Google anything, ever….listen to your oncologist and the rest of your medical team – at the moment conventional medicine is the best we have, you’ll be inundated with unsolicited advice and most of it will be useless. 

What can we expect to hear coming up on The C Word?
There are some pretty awesome guests coming up in the next couple of months, David Downs is coming on the show to talk about his extraordinary cancer experience, British researcher Kat Arney is coming on in a couple of weeks to talk about her latest book about cancer ‘Rebel Cells’ and I’m working on a special episode with another person about how having cancer led to my Adhd diagnosis this year. 

Check the show out! Find it on Spotify and all major podcast platforms. 

Belinda’s story

“I was diagnosed in December 2018 at 43 just after I spent two amazing months in Tonga – in fact I found my lump while in my second month there. My first chemo was the day after boxing day and 2019 will always be known as the year of cancer in our family – the basics of my treatment was chemo, first mastectomy, herceptin, then second mastectomy. My last surgery was in March of this year and I am no longer in active treatment – so I am very much hoping I am done with that phase! 

I feel like cancer in our society is talked about in two ways – either the inspirational, hero, ‘you’re so amazing’, ‘I don’t know how you do it’ kind of way or the ‘poor you’, victim, hopeless, kind of way. Both of these are often true of course – but they just aren’t the whole narrative. People have cancer, real people, and people are complex, unique, interesting and different!

And the way cancer is experienced are as diverse and complex and people are. As soon as you are diagnosed many of us feel like we lose such a big part of who we are and simply become the person with cancer – and others have very definite ideas of ‘the person with cancer’ – it’s like you lose your individuality and just get subsumed into this amorphous group identity. On ‘The C Word’ we want to keep it real and diversify that narrative – because failing to do that makes people with cancer feel completely invisible in and of themselves. We want everyone to feel seen – and the realness of their experiences acknowledged.

I’ve been thinking a lot about it recently, while it is Breast cancer Awareness Month. Do you know what I realised? The way we talk about breast cancer is different from all the other cancers – and I think the reason is because it mostly affects women and it’s about breasts. We have some pretty strong ideas in society about both breasts and women – and a lot of these are reflected in how we discuss breast cancer. It seems like with the other cancers we talk about people who are sick – with breast cancer we talk about breasts. Interesting don’t you think? 

The one thing I wish I’d known right from the start of being diagnosed is that it is ok to feel like shit – a lot of the time . But that is reality – and not the reality seen in the overwhelming breast cancer narrative. Someone said to me, ‘feel all the feels’ and I would very much agree with this. As women, we tend to put others needs first and have ridiculously high expectations of ourselves – this then translates into a heck of a lot of guilt when we can’t do or don’t feel what we think we should be able to do and feel. I hate that word ‘should’ – it needs to be banned! And women are so good at guilt. I found chemo very, very hard. I am pretty sure I had every damn side effect and it really threw me. A lot. However I spend a lot of time feeling guilty about that – maybe I was doing something wrong? or not doing something I should be? or perhaps I just needed to be tougher and rise above how I was feeling? These feelings were influenced by both my oncologist saying previously that I would breeze through (there was no breezing) and the narrative I saw in the media and from others. Crikey, I read about one woman who kept running marathons all the way through! And that is awesome for her – but some days I couldn’t get out of bed. 

I now admin a FB group for anyone diagnosed with breast cancer in NZ (or NZers overseas). One of the nice things about this is a get a chance (and so do others) to say to the ‘newbies’ at the beginning of their journey what I wish someone had said to me. I think top amongst this is to treat yourself as you would the person you love most in the world. Be kind to yourself. Feel what you are feeling and put yourself first – don’t waste energy worrying about how your husband, your mother or your best friend will cope. Right now it is all about you – they can seek support elsewhere. At the beginning, cancer is a full time job for most of us. And it is exhausting, and so very scary. But we almost always have the strength to do what is in front of us right now, this second. Just do that, don;t worry about tomorrow, next week or next month. Be kind to yourself and just do now.” 

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