Ann-Marie

Hi, I’m Anne-Marie and I live in Goorambat, North East Victoria – Benalla is our nearest larger town. I’m 58 years of age, and was diagnosed almost exactly 5 years ago in June 2017 when I was 53, Stage 4 right from the start with secondaries in the bones (ribs/spine/sternum). I had a couple of weeks of radiation on my ribs to help with the pain.

At that time, my oncologist wanted me to start on Ribociclib (Kisqali) but it was not available except privately at a cost of $60.000 per year, which was way out of my league. However, I decided to push for it as much as possible, and persuaded around 500 people across Victoria to write to their local MP’s, meaning it had to be discussed in Parliament – I do have a big social circle! In the middle of all this, I was accepted onto the compassionate scheme after writing to Novartis (who I used to work for about 10 years previously). The compassionate scheme was for 40 Australian citizens at any one time. However, we decided to keep pushing for it to go onto the PBS and feel we were instrumental in getting it through on 1st July 2018. From October 2017 until then, mine arrived via USA/Canberra/Auspost, and there was a struggle each month to convince Canberra to post on a Monday, as it took a couple of days to reach the local post office, then would sit there overnight for delivery the day after – in summer if it was posted on Wednesday it could end up in a boiling hot office for the whole weekend, and was actually supposed to be kept cold! I was also put on Letrozole and Denosumab.

Around that time, it was decided I should have a left mastectomy (the right side had several non-malignant lumps) and so I had the mastectomy in September, and two weeks later my husband was due to have a sarcoma removed at St Vincent’s in Melbourne. Of course, he made it as far as the operating table before they cancelled, and it was postponed by 2 weeks, meaning he had the surgery in Melbourne the same day that I started 6 weeks of radiation in Albury, NSW – those were a very busy 6 weeks, especially as we have a farm and are both from the UK so have no relatives here and relied on local people to help out a lot, both with looking after the stock and helping with the long drives. However, we got through 2018, and 2019-20 were much better, with Denosumab going from monthly to bi-monthly, and all was stable or only very slight uptake in the bones (still ribs/spine/sternum).

In March 2021 I suffered septicaemia following some dental treatment in January, and spent 6 weeks in Wangaratta hospital, half of it in ICU before being airlifted to the Royal Melbourne Hospital after a heart attack. I wasn’t allowed out for so long because they couldn’t get my liver and kidneys stable, but once I was up to 60% kidney function in May I was allowed home, but taken off the previous medications totally as my liver had suffered a lot and I now had a heart murmur. In June I was diagnosed with a new breast cancer in my right breast, placed on tamoxifen/Denosumab, and had a second mastectomy in July, followed by 6 weeks of radiation starting in September. Luckily the same local people helped with the driving, which was made far more difficult by COVID rules stopping people travelling interstate, but our local politician, Steph Ryan, helped to get this sorted just in time!

Six weeks of radiation were followed by a month of burns, and a nasty infection in my mastectomy scar – this was the first time I really needed some support as everyone packed up for Christmas and New Year (GP, Oncologist, Surgeon and Radiologist) and I relied very heavily on my local McGrath Nurse, who is in Benalla one day per week. Once the holiday were over, she was able to put me on the list for both Palliative Care nurses and District Nursing, and the wound soon healed up and I was finally able to swim for the first time in February this year, a whole year after the last time!

A month ago I received the news that tamoxifen wasn’t working, and was moved to Fulvestrant injections. I had a PET scan in Albury a fortnight ago, which showed the cancer had spread and is now through my liver as well as pelvis and skull, and I had a brain MRI in Wangaratta last week for which I’m waiting for results this Thursday. She has already suggested that, depending on what this shows, I may have 6-12 months or I may be moved to Palliative Care. Of course, I feel absolutely fine and have no intention of dying at this stage!

As a bit of background, my husband Miles is 12 years older than me (70), and had a sarcoma removed from his thigh in 2018 from which he is totally recovered (except he is still waiting for reconstructive surgery), and he works full time. We have a small farm in NE Victoria, where we have horses and chooks plus a dog – we have downsized our stock a lot to make life easier. However, with my diagnosis coming a week before starting a new job as an Executive Assistant (to the CEO at Benalla Health), I found myself with zero income – having a farm larger than 5 acres means you do not qualify for any government help at all – and so we turned half our farmhouse into an Airbnb, and I run this quite successfully. This cottage is also registered with the Cancer Council for 10 free holidays per year for cancer patients and their families. We live on the top of a hill with a 360-degree view and after discussing it at some length decided we don’t want to move if we don’t have to.

I’m originally from England, Miles is from Wales, and we met when I took a year out in my mid-40’s (2007-8) to backpack around the world…and I stayed. We were married in 2009 in the garden here on the farm, and then later that year I was diagnosed with a massive brain tumour which was removed 2 days later at the Royal Melbourne (it was the size of a baseball). I’d never really been in hospital before that, but since then have had my gall bladder, appendix, and ovaries all removed at different times as well as the mastectomies. 

I don’t have children – my parents split when I was 10 and we stayed with Dad, and as the eldest, I had to run the house, cook, clean, do lunches, etc, whilst Dad worked 2 jobs back-to-back each day to pay the bills. Life was extremely tough then, and because of that I have not told either of my parents of my latest diagnosis as both are in their 80’s and have major health issues themselves. 

Previous hobbies were directing stage musicals, showjumping and all sorts of crafts. Now I have become an international showjumping steward (not allowed to ride any more of course), and taken up patchwork and quilting, and just started sewing clothes for my great-niece. I love to bake and preserve – currently I’m busy with cheese, quince paste, bottling olives, and getting them all ready for Benalla Show, where I usually pick up plenty of prizes.

We also have a new puppy, Dexter, a lab cross golden retriever, who is now just 6 months old. He’s meant to be an outdoor farm dog, but since my recent diagnosis has been keeping me company in the sewing room!