Holly's brain tumour, infusions with neurologist & support.
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Hi, my name is Holly & I am a multidisciplinary artist with a disability, living with her elderly mother in Northern NSW.
I love community, connection, nature, healthy living & my zen practice.
I survive on a DSP & occasionally get pocket money - which is essential with high medical costs on only a DSP & I am unable to work regular shifts/ hours - from teaching comics within my accessibility & doing tarot readings which comes naturally.
However, my medical expenses are generally through the roof. They always have been (that's why I can't afford rent) & I live fairly frugally but as ethically as I can, but don't go on holidays, do yoga classes or even get a haircut (ok, maybe every 4 years)!
However, this year is another big one.
I have no support from family, my own or with a partner (or kids) & don't want to lean on friends too much.
I spent 4 yrs doing two NDIS applications with Spinal Cords Australia as an advocate & legal aid support, took NDIS to tribunal & still lost as I couldn't afford to testify & pay my specialists to attend court in Brisbane in support of my claim (which was PhD perfect).
It was a demoralising & traumatic process I wish not to repeat.
I need help. I hate asking for help. Doing this at this time feels emotionally impossible. I am DONE asking for help. But if I don't, I am truly screwed.
Some of you also know what is going on in my personal life, which is just another layer of hard.
I have come a long way with my mental health, personal strength & I am making lemonade out of lemons, using both complementary & mainstream medicine, therapy, meditation, art, love & nature as my supports.
SO.
- I have a pituitary tumour which has been affecting my other glands & hormonal systems for a long time (I also have lactated for over a decade! No, not pregnant, it's a symptom). DON'T WORRY- I AM NOT DYING- it is likely benign re: cancer. But it is still causing me & has caused me big problems. I see the endocrinologist in June, though she wants to see me earlier now, due to the doom test results. Specialists cost a LOT, even with some medicare rebate. My recent bloods weren't positive & I have already started to lose my eyesight in my peripheral vision (had all the tests last week), which is from the tumour pressing on the optic nerves. I could possibly go blind if I don't take medication, but brain surgery is more likely if this continues to be the case, as I am already apparently experiencing some blindness (though I can't tell, it came up in the tests that were done- it happens slowly - but can still drive for now). As it's already started I need to get my eyesight checked very frequently over the next year, then yearly, if all goes ok, for now.
- At the beginning of 2024, my wonderful neurologist, Dr Raj put me on a new medication regime that has been a game-changer; from 19 episodes of occipital neuralgia (since Motor Vehicle Accident in 2004 (which is basically like a hard hammer of sharp nails in the back of my head on repeat) to 3-10 max episodes (they are still bad, but it is a huge difference for me). This treatment is 'sub-optimal' & Dr Raj wants to try & make it 'optimal', even try to eradicate it, with every 2-3 month, 1 hour long infusions at her clinic at Southport, QLD. These costs $250, no rebate. I will also need to have an appointment with her at the time as well as pay for a driver. I can't drive far with my back (see below) & risks of neuralgia when driving.
- I was born with severe Degenerative Disc Disease (DDD) & osteoarthritis as well as femoral anteversion aka 'inwardly rotated hips' which caused me pain as a kid but more pain now I am old(er). I have to tape my toes to walk & I have nerve damage in my big toe from my odd walking gait which you can actually see if I show you. With the DDD, well, that has been years of surgeries to no success. At least they didn't make me worse & though I do continually get worse by nature of this disease (as much as I denied this fact for a looong time), I use crutches a lot to help me stand if I need them & am limited in too many ways to mention here. But all the exercise, yoga & bodywork has stopped me needing to use a walker. Yay! I am an 'agent orange baby' (look it up) as are my siblings, who all had their 'thing' (I am not at liberty to disclose which is a bummer because this shit's real). OR the DDD could be from my great uncle Theo who was the only other in the family tree who had the same genetic colouring to me (red hair, blue eyes) & he was bent at the hip with a cane from 40 yrs. I remember this about him when I was a 'lil one.
- I have lived with severe endometriosis my whole adult life, infertility & the only time I conceived, I had a traumatic miscarriage which almost killed me (ectopic pregnancy that miscarried). I was lucky. But it was very painful. I would've had the baby. I wanted children very much.
- The things I do to support myself, the pharmaceuticals that actually have saved my life (they work), the natural remedies that counter-balance the side effects eg reflux from the medications, therapy and very occasional bodywork sessions cost A LOT. I have broken down the costs for you below, just for the rest of 2025.
- I had a level four, stage 3(c) Melanoma at age 23 which made me super sun-conscious & have had many BCC's & SCC's since, regardless of my suncare (the damage was largely done in youth). However, I still had a BCC so close to my eye last year, I had some heavy face surgery (see picture). Every time I have (another) major surgery, it costs me money, even under Medicare. Some procedures and specialists don't even HAVE medicare rebates. If you have a health condition or disability in Australia, it is HARD, unless you have NDIS or are privileged.
- In January this year I sprained a ligament in my knee (found on MRI). This is due to my arthritic, femoral anteversion hips/legs/ knees/ flat foot & ageing degeneration too. I dedicated myself to rest & rehab, but when it feels better (enough) I push it a little too far & I am back to square one. I can't swim & can barely walk. I use my crutch/es, & need to give more serious time to rest & rehab. It's incredibly frustrating. Swimming was my last vestige of simple-joy. Of course, there is always other joy. Driving also makes it worse (right knee) as well as weight-bearing (carrying heavy shopping, moving stuff about). Which is also why I need help with a driver.
If you feel this is all too much to believe, I hear you.
I can hardly believe it myself.
I went through a huge grieving period in my mid-40's i.e 3 years ago; when my dog & two friends died, severe chronic pain & facing my many failed surgeries...it took me 18 months to crawl out of that mental pit. But I did. Not without its losses. And not without being changed by it- for the better- strangely enough.
I think by nature I am an optimist. But even the most optimistic & 'resilient' (so tired of that word) amongst us still have limits. I definitely met mine then.
If you doubt any of my medical history here, you are more than welcome to contact my GP Greg Gover, Neurologist Dr Meenakshi Raj, Spine surgeon Dr Matthew Keys, Spine specialist Dr Matthew Scott-Young, Endocrinologist Dr Chelsea McMahon, Optomitrist (for eye sight tests) Mr Bernhard Kurtz, Psychologist Paula Lewis, Physiotherapist Claudia Mirdita AND I have dozens of scans etc with my name, D.O.B, & dates on them etc I ain't no 'Apple Cider Vinegar' girl!
REALLY IMPORTANT HERE (Thank you in advance):
PLEASE DO NOT GIVE ME UNSOLICITED ADVICE OR ASK FOR ADVICE FROM ME ABOUT YOUR CONDITION.
IT IS NOT THE TIME.
NOR IS IT WANTED: I HAVE ENOUGH TO DEAL WITH.
AND LIVING IN THE BYRON SHIRE FOR 33 YEARS - BELIEVE ME, I HAVE & DO / TRIED EVERYTHING.
SOME THINGS HAVE HELPED. OTHERS HAVEN'T.
Trust my experience and wisdom that I have and do what is right for me.
MAINSTREAM MEDICINE HAS ALSO HELPED.
BOTH COMPLEMENTARY & MAINSTREAM HAVE LET ME DOWN TOO.
I ALSO HAVE A GREAT TEAM, FRIENDS AND A LOT OF PEOPLE TO THANK. XX THANK YOU XX
Re: Byron-Ballina Community Transport:
I have used this service a lot in the past. But I started to find that because (once again) I 'look' able-bodied, I am not considered when mistakes have been made e.g. fellow passenger-patients make time mistakes & I am waiting in a waiting room for 3 hours after a series of intense injections in my spine.
This is just ONE example.
I also still pay about $100 for the transport, & after having to get my elderly mum to pick me up due to a mix up, I can't rely on this service.
I know they are a good organisation who help many people in my community, especially the aged.
I get it.
But it doesn't get me.
ANYHOO!!!
EVEN $10 makes a difference!
Please support me if you can.
Please share or forward if you feel it may be helpful! (It would!).
I don't want sympathy, condolences or pity!
Like many people with disabilities, I need financial support to survive.
It's that simple. But the other option is to swim out into a lake... because I don't have other options!!!
I have lost so much of my life to disability.
I don't always keep it honest in that way, sharing how hard it is and has been. Those close to me know.
But there is so much hurtful ableism in the world.
We just want to be loved, accepted and included for who and how we are.
My first 10 years of disability after the MVA, I just masked it as best as I could. I was in my 30's! I didn't want to be rejected. I was still trying to make my life work. Ha!
But as I said before, I make the best of it. AND it is still so isolating and hard. It is also a great teacher.
Budget breakdown* (for next 8 months of 2025):
- Pharmaceuticals (some of my mediations are not PBS) $100 a month / 8 = $800
- Lismore driver to see Endocrinologist (about pituitary tumour) 3 hr round trip. $50 per hr / 3 trips $450 + Endocrinologist appointments $200 (after rebate) / 3 $600 = 1050
- Southport driver to get 1 hr infusions for occipital neuralgia + Neurologist Appointment 5 hr round trip $50 per hr / 4 trips $1000 + Neauroligst appointments ( $200 a pop AFTER medicare rebate) / 4 $800 = $1800
- Psychology sessions (after I have used 10 mental health sessions with GP but still paying $60 an appointment with that! But I completely need the support!!!) 6 sessions $200 each = $800
- Bodywork (also essential to keep this machine moving) $140 a session 1.5 hrs / 10 sessions = $1400
- More eyesight tests / other pituitary tumour tests approx = $300
- Petrol to medical appointments for the rest of 2025 = $500
- Other unforeseen medical costs at this stage (there always is more ) = $350
TOTAL: $7000
I reckon I can pay / save $2000, so I am asking for $5000 for this Go Fund Me Campaign. I would be so grateful for any support!!!
My first infusion with my neurologist at Southport is in a week (1st May).
*not including all those goddamn appointments, natural supplements e.g. Aloe Vera Juice for reflux, quality supplements & healthy food.
Rent (yes, I do pay rent at mum's, though still less than I would ‘out there’ AND also always looking for more permanent, accessible accommodation which is financially impossible on DSP & I am NOT going to do O.F).
I have a cat & though that may seem indulgent, please don't underestimate the power & love of a companion animal. I need to care for her, feed her well & keep her happy & safe (which costs $$).
There may possibly be brain surgery costs which may or may not happen -I’ll leave that till 2026 because I just don’t know yet (unless it is deemed urgent) & it feels too overwhelming tbh BUT also MAY be completely covered by medicare. Not sure yet, will cross that bridge if and as it comes. I DO NOT HAVE PRIVATE HEALTH, NOR CAN I AFFORD IT.
Please again; no suggestions. I get them everyday & it is exhausting & underestimates my intelligence. If you do suggest something, I just won't reply. It isn't personal, I may still like you! I just have zero-f^ks left for disrespecting very clear requests.
ERMERGERD people! Thanks for reading and please give me grace and time if I don't get back to you straight away. Or mistakes in this process.
Being on screens & typing hurts my eyes.
Just doing this was an absolute nightmare, but I didn't feel I had a choice not to try.
Thank you so much if you have got this far!
I love you!
Holly xoxo
Organizer
Holly Hercules English
Organizer
Suffolk Park, NSW