I set up this website to tell my journey but I was forced to close it down by the Commander of the Southern LAC due to complaints that I might be doing something illegal!! I shut it down under protest in 2016 but now we've moved and I have relaunched the website (10/8/18)
I also built this website so that people who heard me speak out about my situation would have somewhere to go to see further information. But more importantly, to alert other women to the signs and symptoms, to be aware of their body changes - not to dismiss those "alarms", seek medical attention early, so that you can have the issue dealt with.
You'd think that today, in this modern age, with all conceivable testing machines and the high science we are surrounded with, that a person couldn't possibly be "misdiagnosed" or with my situation it was more a case of "non-diagnosis", but yep, here's my story:-
August, 2012, I was diagnosed with Hygrade Mucinous Ovarian Cancer Tumor.
I had never heard of such a thing before, but the fact that is was coming from the ovary meant big trouble. See Picture of the Mass when it was 19cm in diameter, to the left. Major pressure on spine and pelvic floor area. And it kept growing!
Over the year leading up to this diagnosis my stomach kept growing. Many different diets proved to be of no effect. At one stage I gained 8 kilos in 3 weeks just living on diet shakes. I then piled on another 15 kilos on a low cal diet. I was becoming more tired and lethargic and Doctors wouldn't find the answer to my problem.
I'd lost my father in March 2012 due to Multiple Myeloma and my Cousin in May 2012 with bowel cancer then an inoperable tumour. Both were very concerned about my health and dad said I should be checked for cancer as it was in the family. That was April 2011. Between April 2011 and July 2011 I saw three doctors at the local clinic and asked for tests for cancer. I was DENIED. One prick of a male doctor handed me a card for a psych evaluation! He said I had mental issues. He also said the breakdown of the skin around my ears was due to the cheap $2 earrings I was wearing (they were $350 gold and sapphire) - I'd seen six different doctors in all in that clinic and was fobbed off on each occasion.
One had the gall to say it was all in my head, I "only think I've got what my father has". Another recommended I see a counsellor, as I must be suffering anxiety due to my fathers ill health. I had tightness in the rib area and throat and woke through the night gasping for breath, not realising the growth was pushing everything up towards my chest. One doctor sent me for a barium meal x-ray which showed nothing. But hey, go on Nexium anyway! Better still, why not have lap band surgery because I "obviously have an eating disorder" and "I must be binge eating".
Not one doctor touched me, they just looked me up and down and made the "fat" assessment purely on viewing my large stomach. I was so tired from lugging myself around, I couldn't work any more, so I shut things down at home and online, and left my part time Barista job in November 2011 and stopped taking services at the local church. I didn't have a spare $3,800 laying around for lap-band surgery, and wasn't going to subject myself to unnecessary surgery. My own health issues were put on hold between November 2011 and March 2012 due to my father being on his death bed, but in May after my cousins death I went back to doctors again asking for help. No joy there!
In August 2012 I finally got a female locum doctor to assess me. Dr. Evelyn. I told her "I don't want you to just look at me, I want you to properly investigate." Yes, she actually touched my stomach and said: "Ooh, I think there is mass."
By the time I got into the local hospital for an ultrasound it was a 19cm diameter pelvic mass.
By 19th August I ended up in Wagga Hospital (hell hole!) 2pm ER with pain because my bladder was not voiding properly. It was crushed and folded in half, so only eliminating a little at a time. The student doctor couldn't get the catheter in. That in itself was a dreadful invasion of my privacy and an absolute disgrace to the medical society - jokes about my clitoris and "getting in there". I was disgusted! I pushed them away just as people were waltzing in and out of the Plaster room - the only space they could put me - spread eagle on the table for all to see as the door flapped open and shut. I was just a fat piece of meat to them It was dreadful!
They did a CT Scan at Wagga ER at 5pm and found the mass was a large loculated cyst with two malignant sections (an a shadow of a third). After one doctor saying "it will have to come out tomorrow" a Gynaecologist was brought in at 10pm who said it couldn't be done at Wagga because they didn't have the facility or the expertise to cater for such a large malignant mass. I had an outpatient appointment with her 3 days later, hoping she'd have an appointment time. NOT!
I was sent home to await being taken in by a city hospital. I was told to take the opportunity to "get my affairs in order". She said I could have to wait 2 weeks. She rang three days later to say Westmead were considering taking me and to have bags packed and ready. A week later, Westmead knocked me back due to "lack of funding". I was then told I could have to wait 3 months.
Getting my affairs in order?!?! WTF did that mean?! A lot of research later.....
I got my Will and Power of Attorney papers out and updated them. I put everything into my husbands name - bank account, car the lot! I researched and drew up an Enduring Guardianship and Advanced Care Directive (I got off Prof.Cartwright as I couldn't afford a lawyer) and sat down with the family to let them know what my wishes were. That was tough. (these forms are now available for FREE download off my other website kerryndunlop.com.au)
Most of my lectures revolve around this delicate issue. We need to plan now, get things ready now, not later - there might not be a later.
A Will only looks after your possession, other other documents looks after your body and what you want to happen in case you can't speak for yourself later on.
I was admitted into Wagga Maternity five days later, as they said I'd have a better chance of being taken up by another hospital if I was admitted to care. All they could offer was some pain control and daily a pathetic team on incompetent doctors and trainees/registrars would stand around my bed offering no solutions other than to WAIT for a bed either in Canberra or Sydney. They said I could be waiting up to 6 months. Apparently that was not uncommon! I had to ask: "What are we living in here? A third world country?" Meanwhile my body was copping more damage.
The stress of being in midwifery with crying babies was taking its toll. I can't count the amount of times I was asked "when are you due"?
I had to carry my stomach around and the skin was thinning, stretching and tearing, my legs were swollen, my hair was falling out from the stress. I could barely get around and I was now 26 kilos heavier than the 2008 surgery. Oh yeah! I had previous history. Two ovarian cysts removed in 2008 and one in 1983.
I was knocked back by two hospitals in Canberra and three in Sydney. After a week of hell in Wagga, I threatened legal action and blurted out some expletives. Well lots actually! That afternoon they gave me a date!! But it was a long wait. I had no other options. I had to be nursed at home for 23 days until RHW took me in. By the time I was taken up by Dr. Robyn Sayer, my angel surgeon at Royal Womens in Sydney end of September, the pelvic mass had grown to become an Abdominal mass of approx. 6 kilos in weight and 31cm in diameter. It was so large it had crushed my bowel, and my colon was pushed up tight to my diaphragm and the bladder folded in half and crushed to the side wall. I had no bowel or bladder sensation. I'd been on toilet timing and laxatives for over a month.
Cancer and tumour markers where present in the blood tests (yes, finally got one), and they went up considerably just before surgery, but a simple pelvic ultrasound could have found it three years prior. AND, I'd had previous history of ovarian cysts and surgery.
During surgery, I was cut down the middle (25cm) and my skin was so tight the mass burgeoned out and ruptured, losing approx. 1 litre of fluid from it over my skin and surgical drapes. Once removed, it filled the surgical bucket. I asked the surgeon for photos but by the time it was taken it was losing fluid and sunk down in the bucket a little. They said it reached the top of the bucket! I have some awesomes pictures of it.
I asked the surgeon to name it, she called it "the triplets" due to its size. They took my intestines etc. out and cleaned it and checked it for cancer. They also removed my Ovaries, Tubes (had hysto 10 yrs ago) and Omentum and severed many adhesions from previous botched surgeries and removed three barbs from my 2007 ventral hernia repair with that dodgy mesh that's been all over TV (another botched surgery by Dr. Stab-man Stenning at Bowral. Seriously. That's what the nurses call him!
Anyway, back to it.....
Diagnosis was a Highgrade Mucinous Ovarian Cancer Tumour - very rare. A Sydney laboratory requested a sample for their bank for future research as did CART Wheel in Melbourne who specialise in studies of rare tumours. It was a text book case. I also had a uni student interview me as she was doing a study on rare tumours. It was her thesis. At the end of the day I know it'll go no-where. Cancer after all is BIG business!
The day after surgery I weighed 6.8 kilos lighter and when I left hospital I was 11.5 kilos lighter than when I went in. I'd lost 25cm off my waist. Of most relief was the lightness I felt in the pelvic area. Finally, no pressure. I was also able to breath properly and sleep laying down flat, as there was no pressure on the diaphragm and chest or ribs. The pain in my lower back was gone, and I was able to put my own socks on! Yippee!!
It was highgrade, mostly borderline with malignant foci. As there is no proven post operative protocol for this type of condition, when I was offered chemo and radiation I refused. That in itself was a huge battle !!
Instead I decided to go the Natural/Alternative route. I used a homemade herbal concoction internally (name removed from website due to TGA), along with my Rotai healing methods, MSM, Liver detox, Turmeric and Cucumin for inflammation, Dr. Mercola's Probiotics, Digestive enzymes and filtered water with Prill beads and Quantum Energy stones to raise my bodies pH. I added other herbs and supplements and Percy's Powder end of Feb, 2013.
CANCER TESTS - I had to be tested every three months for two years, then six monthly for two years then yearly for two years, but the last two years I had 6 visits due to a breakdown of skin around the rectum and vagina due to an acid spill during an "investigation" . So, 6 years to wait for clearance.
UPDATE 12th January, 2018 ! Hooray ! I have finally been formally discharged from the hospital care. Held cancer markers in "normal range" meaning under 12 for well over 4 years so it's now just a matter of yearly maintenance through my local GP.
Here's the old timeline"
September 2013 - All blood tests within "normal range" - yippee! Twelve months and cancer free! Now the big challenge - to hold that for 5 years to get "clearance".
August 2013 - Bowel and Bladder functioning normally - finally! Tests last week showed no cancer in the bowel.
Still on herbal laxatives for the bowel, but my bladder is working now (proper elimination/void) and I have some sensation back.
My tests for January 2013 showed that CA125 markers were down by 30 points and the C19.5 down by one and the main Reche tumour marker was still in an acceptable range only going up by .5. Just need to stay away from stress.
My surgeon is very happy with the results, as am I. A long road to go yet, but I am still on my Natural Therapy regime and feeling very well as there are no side effects other than the detox I experienced post surgery and eliminating body toxins. My gall bladder was very toxic, black and full of stones. They didn't take it during my surgery as it was too invasive and there was no time to get a third surgeon involved. It will need to come out at a later date as it is too damaged. (Update: Removed 2016)
Here is some information I found helpful.
www.msmAustralia.com.au - that's where I got Percy's powder and MSM (for horses). If you ring them they can get you pretty much anything you need.
The Toni McMahon website is where I got the herbs and products to make the herbal concoction.
I got the gel caps through a local dentist and another local friend had stock of the ingestible herbal blood root etc. herbal capsules from before they were banned for sale by TGA (something has to be done with that mob! What happened to freedom of choice?)
And I have some e-Books I can send you if you request them for your own healing.
I suggest you watch Elaine Hollingsworth's DVD "ONE cure for cancer" (by Adrian Jones Qld. Naturopath). I'd like to offer them as a download from my site, but the TGA won't allow it. Her book is also very good.
Another good book is by Dr. Hulda Clarke - "Cure for all Cancers". I have some in stock if required.
So, onward and upward 2013! I'm back in business and some of my old clients are starting to come back.
It's good to be back.
PS - You know in yourself when there is something wrong with you. Don't take "no" for an answer, keep searching for a doctor who will listen to you.
Suffering a bad case of Shingles. Friars Balsam worked a treat at halting it's growth and took the heat out of it.
My hair has grown very thick and healthy. I had three inches cut off this week. All the dry dead ends gone. Skin is feeling much better. Seriously thinking of a move closer to family. Have to re-evaluate my goals and alter my dream board. Praying for a move. We are only in the planning stages. Will update later. (UPDATE: moved closer to family July 2013!)
Not feeling so depressed now. Cooler breeze, clearer head. I love Autumn, it will be here soon. I can smell it coming on the crisp evening air. An exciting year ahead with some changes around the bend...
(for legal reasons half my story has been cut out and names of products and people)