A Chronic Entrepreneur: Kere Baker
Kere has generously given a 2021 update, which can be found at the conclusion of this article
Kere Baker is one of those humans who has an infectious personality, optimistic soul and wholehearted approach to life. She has built a lifestyle and a life, alongside multiple chronic illnesses, of which you’ll find out more about, and some incredibly hard moments that are hard to put into words which is why we’ll leave it to Kere to share her story in the way that feels right below. Alongside these challenges, Kere founded Loobylou Candles – some of the most gorgeous candles going around – and underground ARTspace. She was nominated for a GALA Ethical Award in 2018 for her I AM…MORE THAN THIS range which donates all profits to the Leukaemia Foundation. Discover Kere’s story below and check out Loobylou Candles online to get your dose of deliciousness.
What’s your Chronic?
Straight to it you’re starting with a challenge because it’s a ‘which one’ scenario for me – so this is a hard answer. In our family, we refer to the ‘Chronics’ as ‘The Consequentials.’
I’ve lived alongside Polycystic Ovarian syndrome and Endometriosis, and subsequent hormone-related Fibromyalgia since puberty. Oh and let’s not forget anxiety. I can be anxious AF, but I know my triggers, and know how to work fast to get through it, which I reframe as survival skills because, frankly, for anxious people – they can feel like it!
In 2008 I was diagnosed with Thyroid cancer and had a total thyroidectomy and ablation treatment. In 2011, following my fourth miscarriage at 12 weeks, I received the life-changing ‘Stage 4 Angio-Immunoblastic T-cell Lymphoma’ diagnosis. This involved chemotherapy, radiation therapy (today body irradiation) and all kinds of other cocktails. I first attempted an ‘Autologous’ bone marrow/stem cell transplant where they force your cells into remission, then transplant them back – like an immune system reset somewhat, but ultimately it failed and I relapsed within three months. I then underwent an Allogeneic donor transplant, using stem cells from an unrelated donor. In my case, a young man in Germany, 20 years of age – a perfect stranger – offered his cells to save my life.
So, ‘the consequentials’ are referred to as that, because for the most part they are equally caused from the consequence of the treatments above. Cancer treatments, for example, threw me into menopause at age 34 – yet the lingering endocrine/hormonal issues still reign supreme. Things like, insulin resistance, and living without a thyroid, mean that your body doesn’t process food and energy the same way, nor convert it appropriately to energy.
I underwent my bone marrow transplant in May 2012, so my immune system is but that of a five year old, and will never be as strong if it were my own, but I’m so blessed to have one at all, and to be here to try to protect it.
Having a compromised immune system just is. Whether you work hard and chase your bliss, or don’t work at all – you still have a compromised immune system. I didn’t fight my way back to not have the best crack at my new life as possible. It’s exposure to bugs, germs and allergies that are the risk factor, so you need to really be able to trust the people in your life to take that seriously. In my case, that hasn’t always been the case, so I’ve had to learn to be my own advocate, even when it’s hard and I feel like a fussy ninny about it. That has, and will continue to mean, walking away from people who don’t understand and respect that. It’s hard, and can be confronting – but my health and the protection of it, has to be my priority.
Treatments and learning about my new way of life are ongoing, as are the risks of developing more illnesses than I can list. I’m monitored really closely and carefully, and we are so lucky in this country, in that once we have a diagnosis, we have options and opportunities that many don’t. I now take part in medical research trials so we can all learn more about life post-bone marrow transplant, and what can help – both me, and those that come after me.
I was horrified to learn recently that only one in five patients agreed to participate having undergone transplants themselves. I think it’s our duty to support the medical teams that gave our lives back, so they can pave the way for future treatments for future patients. I get that people want to put their cancer behind them – but had our predecessors thought like that, we’d not be here to even have a journey. It’s an honour code for me.
Where were you when you were diagnosed?
If I may borrow a soap box or a megaphone for a moment, I have a point I really want to make that I’m passionate about. Especially shouting this out to women out there.
YOU KNOW YOUR BODY BEST. YOU DESERVE TO BE TRUSTED AND TAKEN SERIOUSLY!
My thyroid symptoms came on following a miscarriage. I recall telling a doctor that I “didn’t feel like I was firing on all cylinders.” Said GP spent a long time attempting to convince me I was depressed. I know what depression looks like, and I’m the first to admit I have extreme episodes of anxiety and the black dog nips at my heels from time to time. I feel blessed to my very core that I don’t have depression. I don’t think I have ever had full blown depression, or the feeling that the darkness wouldn’t pass. Not even when my prognosis was horrific and the hits kept coming. Even when I am in the thick of it, I still find gratitude, and that gratitude is directed at the fact I know it will pass.
So it was confronting for me. His reasoning was that I’d had a miscarriage so I was obviously depressed. There I was arguing with him that, yes, I was heartbroken and sad, but I wasn’t depressed. A good friend had not long before delivered a stillborn son, and the fact that I viewed my miscarriage as an act of kindness over that – well, I don’t think that’s how depressed people think. Depression has touched the lives of people close to me my entire life, and two of them are no longer with us as a result of it, so I take it very seriously. But there I was, refuting all his reasonings. But he was a doctor – we’re supposed to trust our doctors.
I reminded him that my symptoms were having less energy, physically worn out (not emotionally) and not being able to tolerate the heat, all kinds of symptoms I now know are typical thyroid warnings. It took three or more doctors all saying my symptoms were consistent with depression, before I filled the prescription for anti-depressants. Don’t get me wrong, I’m a massive advocate for treatment the way you would treat any other disease. I’d hazard a guess that depression claims as many lives as many diseases – I just wasn’t convinced I had it, and never took the pills.
I then, fortuitously, had a minor car accident. The seatbelt across my neck caused a minor thyroid bleed and swelling. It was an ultrasound that revealed the thyroid cancer, and began the testing. Over the course of at least four months I couldn’t get a doctor to hear me, but a car accident could.
Lo and behold, I’m about to repeat the story. In 2011, following another miscarriage, and just not being well, unexplained abdominal pain and limited energy alongside dizziness, I again tried to get medical help. My own GP by this point was fantastic, and sent me for all the tests he could think of. I actually recall him saying that he was concerned about Lymphoma due to enlarged nodes around my liver added to the rest of the symptoms. He unfortunately then went on an extended trip and things got worse. I presented to my local hospital with scans, and at this point I’d gotten weird scabs on my body. They sent the team from infectious diseases in to clear me, but didn’t do much else. I was fading in and out a lot, but heard the words ‘hyperchondria’ and ‘phantom pregnancy’ to describe the unexplained swelling in my abdomen. They sent me home with a virus. I went to bed, and barely got out of it. At the time, Adrian (hubby) was monitoring pain relief around the clock. I recall him calling the hospital in tears explaining that my fever was 41, I was covered in sweat and couldn’t move. “It’s a virus love, it’ll burn itself out.”
By the time my GP was back and we made contact, he immediately told us to go to Royal North Shore. It was a tricky cancer as it hides. It had started to consume my red blood cells, which was how they eventually found it when my Haemoglobin was in its 30’s (should be 120+).
It had spread through my entire body, excluding only brain stem, and that unexplained abdominal swelling? That was ascites fluid – over 30 litres of it. Had an ultrasound been performed, my organs would’ve been floating around. I was dying, and my body was starting the process of shutting down.
I’m not adding that in to scare you, I’m saying it to MOTIVATE YOU. For reasons unknown, I survived with very minimal odds.
I was in hospital four months that first time, but I can’t bear the thought of anyone being so scared and in that much pain because the people that should listen to you don’t. If the lessons of my life have taught me anything, it’s that we have to be our own medical advocates. We have to trust our inner voice that whispers, “something’s really wrong.” We have to protect these precious lives of ours. Keep seeking help until you find someone who helps you.
What makes you an entrepreneur?
Interesting question! I have kept coming back to it, and even looked up the definition.
entrepreneur
ˌɒntrəprəˈnəː/
noun: entrepreneur; plural noun: entrepreneurs
a person who sets up a business or businesses, taking on financial risks in the hope of profit.
I don’t know even still. A desire to contribute, but to do so in a way that’s authentic to me, on my ‘path’ if you will. I tried it the other way, I worked in childcare for a long time, then corporate. I was good at it, and it was financially the ‘smart’ move, but there was something missing. Honestly, and I’ve thought of this a lot recently – I think that my fear of complacency, becoming bitter and not trying, will always be greater that my fear of failure. I’ve failed in epic proportions before, and I’m sure I will again – but the highs are epic, because they’re mine. When you assume all the risk (financial and otherwise) the burdens are yours, but the highs, well, they be sweet!
What came first, the chronic or the entrepreneurism?
In a strange kind of way, I think the chronics’ fed and fuelled my fight. They almost push you to live bigger – make it count. We live alongside the fact that life can change in the blink of an eye, so go big!
How did this path come to you?
In a few ways for Loobylou. I’ve been a retailer on and off since 2003/2004 and candles were the lifeblood of all my spaces. I burned them, I loved them and I gifted them. I always thought I was carrying good natural ranges, but because I always question things – I started to notice either a lack of transparency, and/or a lack of awareness about the materials and product – from the actual makers. I was also becoming fatigued with the same old. The candle market was growing, and I was bombarded by different brands offering me a different label, with the same pre-packaged fragrances they’d bought from the same place every other candlemaker was buying from. No blending, no creating, no original.
It was when I was in hospital fighting for my life that I decided if I really wanted to know what was in my candles, and wanted unique scents – I had to do it myself. It’s a really funny story, and I mentioned it to a nurse, who promptly sent in the transplants psychologist. There I was, in an isolation room, fighting to have a chance to go home – researching my next venture. They thought I wasn’t taking my diagnosis seriously. I was – I’d just decided I was more than just my diagnosis – and even at those awful odds, I still had some.
What do you wish you’d known before?
This has actually been one of the questions I’ve pondered longest – and while I openly admit that there would be things I’d do differently (and still have those experiences), some of my most epic learning and improvements have come because I made those mistakes – so no, I think journeys just are what they are if that makes sense? I try to be really helpful to others on similar paths (i.e. I know others that have set up creative spaces for example, and try to be who I wish I’d had around in those days, in as much as I know how hard they work, and I have their back) but no, to revisit is to have regret. So even when I whinge and moan, and play the violins a little – I move past it quickly. One big thing I’ve learned is to be careful about the information I share. I’m naturally really open, so have been burned and burned again – but I don’t dislike that about myself, so it won’t change. I’ve just learned to protect my ideas, energy and time more.
Did you go through any sort of 12-stages of grief with the diagnosis or take it in its stride – how did the process manifest itself – did you immediately reassess your life?
I think most people that have received a massive medical blow will agree that the waiting is often the hardest part. I remain certain that the term, “blood running cold” was coined by a blood cancer patient awaiting diagnosis. To be clear, treatment is no picnic, but the mental anguish and stress of trying to prove something is wrong? The emotional rollercoaster of fear that is waiting – that’s the worst kind of torment.
Once the diagnosis comes, then you know. You make a plan, and you do what needs to be done. There’s no choice for a lot of us – you gotta do the work because you’ve got to survive. This happens so much in the mind as in the body. This is the same for any disease or chronic illness – you might feel like it’s all spiralling out of control, your life isn’t your own – and it’s not entirely, but you remain the driver of your own mind. You decide fight or flight. I’ve seen too many people give up too soon, with odds way better than my own, and they never went home. We don’t all survive, not matter how hard the fight, but you’ve got to get in the ring. It counts regardless of the outcome.
I’m still reassessing my life. The choices I make, the people in it. I’m often in trouble with my doctors for not reporting things, or taking things seriously or acting quickly when I should. But then there’s honestly people that treat me like I’m making a fuss, or that my ‘consequentials’ somehow burden them, well, it’s irritating to say the least. Most of my real peeps know I don’t make a fuss, and if I call out for help – I really need it.
And as much as I don’t, and won’t, linger in self-pity (because, boring), I also don’t invalidate the experience that I had, or the seriousness of the diagnosis. I joke and I jest, but don’t for a minute take that to mean that I don’t cower at cancer as an adversary. The facts for me were simple – there was a 5-15% chance of still being alive at the five year mark. My husband discovered that on a brochure left at my bedside, before he’d even seen a doctor, and while I was lying in bed unconscious. The percentages increase with every year, and while I don’t overthink them, or let them dictate any choices – I do respect them.
Did you seek out or join organisations representing your chronic for support or did you find comfort and answers elsewhere – what would you recommend in hindsight?
Honestly, no. For me it wasn’t something I wanted to do. My reasoning was that cancer was already taking so much from me and my life, I didn’t want to give it more energy than it was already taking. Some people need that connection with other patients, but I didn’t. I don’t want to watch people fight (and often lose) the very illness I was fighting.
I also did, and do, seek other therapies to support Western medicine. With my thyroid, my go-to was acupuncture, but for Lymphoma it was Bowen therapy. I’ve always looked a little outside and beyond as I believe we are all a little outside and beyond.
The Leukaemia Foundation reached out to us with really practical support. It was great not to have to go looking and my main priority was that my husband and daughter (who was eight years old when this began) had support. I was forever trying to get them help. The focus is often on the patient, but this is as much of a journey and nightmare for the families.
What would you say to your younger self?
You spent your twenties trying to be who you thought everyone wanted you to be. Turns out the person you were was pretty cool and fun. Your thirties you had to fight your way back to be who you already were. You figure out at 40 that it’s time to stop apologising, and when you let your own brand of crazy truly shine, it’s a light for your tribe to find you. And they will, and it’s going to make sense.
How have you changed, if at all in your relationships, decisions, what you value?
I think I answered this above.
What advice do you have for others?
1) Live brightly and have a red hot go. Seriously – you don’t lie in a hospital bed regretting the things you didn’t attempt. All you want is to try to live big – even if you fail (you’ll fail, it’s important for success).
2) You are more than your illness / diagnosis / condition. Respect it, but walk alongside it, not behind it.
3) Music, art and comedy are must-haves for the soul. Laugh often – and if the mood is sombre, make a fool of yourself and make someone else laugh. It’s contagious.
What is your life philosophy and has this changed?
Not really – though I mentioned in my twenties I tried to go from a Levi and Doc Martins boot wearing hippy to a stranger who once wore a gingham twin set with pearls (not even kidding!). Just be as authentic and kind as you can, but that DOES NOT mean advocacy for being a doormat, or someone else’s version of you. I mean that about personal stuff, career choices, and taking risks. And I really mean it about wardrobe choices (not knocking the gingham twin set brigade if that’s who you really are of course). Authenticity rules.
Are you on any treatments?
There are medications I’ll be on forever, but presently nothing heavy duty. I’m even off all anti-rejection medications/prophylactic antibiotics and steroids now. I had to be re-immunised which is a must for transplant patients – so I’m a big kid with the immune system of a five year old now.
What is a ‘bad day’ for you?
Feeling any kind of hopeless, which is closely followed by fear and paranoia that an episode of something is looming that may or may not be more serious.
What do you do on a ‘bad day’?
If I can’t battle through it somehow, Netflix is my wingman. I’ve got some good friends who may pop in with coffee – but it’s actually the shift of focus and the company that is the fix. I pause, rest and revisit. If I still feel it after a good night’s sleep, or wake up in the morning feeling like I still need a good night’s sleep, I’ll check in with my doctor or whichever specialist the issue may relate to.
For the anxiety and stress stuff, I covered it in the advice part:
Music, Art and comedy – must-haves for the soul. Laugh often – and if the mood is somber, make a fool of yourself and make someone else laugh. It’s contagious.
What are your greatest fears?
Anything happening to my special two and not being there for them.
Who are your back up dancers?
Questions like this freak me out. I forgot to thank some key people in my wedding speech once, so I’m a little paranoid about it. I firmly believe that they know who they are and how important they are in my life.
Best bits of being a Chronic Entrepreneur?
I’ve admitted it in writing before, but I’m CONSTANTLY underestimated, and as such I’m a little motivated by people who tell me I can’t and shouldn’t. Don’t count us out – we’ve seen scarier things than doubt!
Worst bits of being a Chronic Entrepreneur?
I’m a planner, and hyper-organised. I mentioned earlier that some of my anxiety tactics are survival skills? Well, this last few weeks I’ve been down and out, but my business has been able to keep running, because I seem to always need to plan for a few weeks ahead. I never know when an episode of sorts will strike, so preparation is key for me.
Are you a 5-year planner or are you winging it?
Little from column A and B I’d reason?
Dream weekend plans and have these changed?
We found this divine little country house in the Upper Hunter. I can’t wait until it’s more resting and less fixing, but it’s all about quality time with the back up dancers I shall not name. Life has gotten busier and Sydney runs at such a fast pace, further hindered by horrific traffic, so I can’t wait for long moments of pause with my peeps, some good food, beer and conversation.
Ultimate dinner party guests?
Mike Patton
Noel Fielding / Julian Barratt / Richard Ayode
Stevie Nicks, David Bowie, Bob Marley, Louise Hay
Gosh I could keep going. And I’ve got just the venue!
What next?
SO MANY THINGS!!!!!
How can people find you?
Insta: loobylou_candles
FB: LoobyLouCandles
2021 Update
1. What's your frame of mind like at the moment? How have you survived the pandemic?
Taking each day as it comes I think? Things are very very slow at HQ, and we run creative studios where people are just not able to come. So many things cancelled, but not even Covid will entirely dull my long term optimism. I have found it hard to not take personally comments about "nature taking out the weak" or people questioning their own obligation to have to consider the wellbeing of others. It's kind of blown my mind, all the division, and nastiness. I know it's fear-based anger and we're hardly being held my stable politics; but as someone with long term health issues you're already aware you're who they're talking about. Logically I know my vulnerabilities have become my super powers, but it's a level of othering we've never had to consider before.
2. What have you learnt about yourself through this journey? How have you changed, if at all, in your relationships, decisions, what you value/your life philosophy?
I'm a busy person. I thrive on deadlines and am always on the go. I don't necessarily like that about myself, or dislike it; but I've been forced to sit with it. I can always find something to do, because I don't do boredom and I accept that about myself more.
My friendships that have stayed are easy, non demanding and open minded. The ones that have ended, absolutely needed to and made me realise how very much time and energy people had come to expect / demand from me. My bad, but now I know it, I can't and won't un-know it. I guess Covid has forced me to really address the things I wasn't addressing, and that's a silver lining in my inner world.
3. What modalities are in your wellness teams? E.g. chiropractors, kinesiology, acupuncture, etc... How do you manage your disease through a wellness team?
I couldn't person without Osteo / Chiro (I recently found out a back injury from 2016 was actually a broken spine!) and would like to have more frequent massages as a post lockdown goal. I check in with my Bowen therapist when I need to, and I'm desperate to have a session with Dara's kinesiologist. I also talk to a counsellor or healer when I'm getting in my own head and own way too much. Mental health tunes ups!
Let us know what you think below and share your story with us on Instagram tagging @achronicentrepreneur and using the hashtag #achronicentrepreneur.
