Did you know I'm famous? Unfortunately, I’m famous for the wrong reasons.... I'm famous around the Austin and Mercy Hospitals for having two primary aggressive cancers - both found within a week of each other.
In the days before and after my 36th birthday in late April 2017, I was diagnosed with a stage 3 brain tumour and a clear cell ovarian carcinoma.
Neither have a fantastic prognosis (aka: pretty bloody lousy survival rates). But I'm doing everything I can to remain positive and proactive with my treatment and my future. There's not really any other option as far as I can see. (Researchers: someone please find a cure for brain cancer!!).
I've been off work for 6 weeks now and can't see myself being well enough to return any time real soon beyond the odd bit of sub-editing here or there and small bits of project work from home.
Work have been generous, caring and great, but all my leave is about to be exhausted (only been there 9 months). This means I have no income indefinitely and a long recovery journey ahead.
Tomorrow I'm going to the Mercy for my third surgery in 6 weeks. This one will be a ‘radical hysterectomy’ and ‘staged laparotomy’. I won't explain what this is because it freaks me out completely - basically they remove all my baby-making parts, most of the non-essential abdominal organs and other bits & pieces of my body. Needless to say, it's major, painful and slow-recovery abdominal surgery (9 weeks-ish).
This all started when I went in to the Mercy for a routine keyhole surgery to remove a large ovarian cyst and som endometriosis tissue build up in my pelvis. Because they didn't expect my ovarian cyst to be a carcinoma and it was only keyhole surgery, they sliced the cyst open and drained the fluid from it into my abdomen.
This would have been fine, except that it was a very rare carcinoma, and now they have potentially spread cancerous cells elsewhere in my body. Unfortunately, these carcinomas are generally unresponsive to chemo and radiotherapy. This surgery is my one good chance at halting the ovarian cancer from spreading more. I’m so lucky they found it when they did – ovarian cancer is notoriously hard to diagnose, incredibly aggressive and there are no effective screening tools. Most women who get ovarian cancer die from it simply because it moves so quickly.
A week after the keyhole gynaelogical surgery I had a seizure in my sleep. Since then, I've had two stays and major neurosurgery at the Austin Hospital over the last month. People keep telling me I look better than they expect, but to be honest I'm terrified, exhausted and constantly frustrated doing things I previously took for granted. In fact, just writing these words is a struggle!
My neurosurgeon Kristian did an amazing job on a full craniotomy to remove the tumour. He had to saw open my skull and remove a section of my skull, carefully cut out a lump of brain tissue about the size of my fist and then use a titanium plate and screws to secure it all back together again. Only a month later everyone keeps being surprised by how neat it looks.
Thankfully, because of where the tumour was (frontal lobe), he could do it all under general anaesthetic - other patients with tumours near their spine have to do that surgery while still conscious so they can move their legs etc. to show they aren't being paralysed.
Kristian says he got 'most' of the tumour out and I seem to have only small cognitive impacts as a result. This is really amazing when you see the scans and see that the tumour was about 1/6th of my total brain. I'm so grateful to him.
Once I can walk again after the abdominal surgery, I will be very soon starting daily chemotherapy and radiotherapy at the Olivia Newton John Cancer Centre.
At this stage I'm looking at the best-case scenario of about 9 months of oncology. The hope is that the treatments will slowly diminish the remaining tumour and surrounding brain tissue, or (perhaps more realistically) slow down its spread.
Radiotherapy can actually cause new tumours also, but hopfeully not for another 15 years or so, by which time I hope they will have invented a cure for brain cancer if I'm still here!
All of these surgeries, treatments and procedures come with big risks and side-effects. The ‘fatigue’ is a very vague side-effect, but it's what's really driving me crazy currently. And it's likely to get much worse through treatment before it gets better.
I'm choosing not to dwell on the risks though. There's not much point, and there's a reason surgeons and cancer specialists get paid the big bucks.
One thing that I have been really worried about is having to move home to my Mum's house (but not because I don't love you Mum! xx) because I can't afford to stay living in my place.
As I am not allowed to drive following the seizure, living in Nth Warrandyte will completely remove any ability for me to be independent. Or even to get myself to hospital for outpatient treatment.
I am renting my place, and as you might expect, living in Fairfield isn't cheap (even when it is a one-bedroom apartment). I thought I had income protection insurance as part of my superannuation, but it turns out I do not. Big bugger: learn from my mistakes people - check your superannuation statement properly!
To break my lease will cost at least 2 months rent, so I think I'll have to stay here until my lease expires. And also, I just don't have the energy to move again yet.
Centrelink has some sickness benefits available, but they are pretty measly and aren't accessible until I'm flat-broke and then won't even cover my rent.
Effectively, I have no income, and being single, I don't have a partner to help me share the load either. (Don't even get me started how much more expensive life is if you're single!).
Any money donated will be used to cover my rent and basic living costs. Rent is hideously expensive as you know. Uber is cheaper than cabs, but really adds up when I need to catch one to and from the hospital everyday.
So as much as this pains and humiliates me to ask, I really need your help. At the moment I still have some cash saved. But it won't last long.
Anything you can do to help me keep my independence and continue to live on my own would be greatly appreciated.
Thanks to all my lovely friends, family and colleagues who have showered me in gifts and food lately.
I very much appreciate them, but quite honestly, please don't spend cash on presents, food and flowers. I have enough magazines, hand creams and frozen casseroles to last me a long, long time!
I'm only just getting around to it, but if you'd like to stay up to date on my progress, I'll shortly publish my blog (took a while with all that damned fatigue).
The blog URL (nothing published yet - don't get too excited!) is: https://jeniloucancer.wordpress.com/
Thanks for all your kindness, and thanks also for reading this very long post!
Lots of love,
- Nani Doodoh
- Emily White
- Jarron Hall
- Stefanie Maciulaitis