Hello everyone, thank you Sally for your kind introduction, and thank you everyone for inviting me here today, to tell my story. Where to start ………….perhaps by painting a picture of my life pre- cancer.
I met the love of my life Michael, when I was just 16, he was my partner for the local deb ball, in Goombungee. Michael was my rock, and has been ever since.
Roll on a few years, we married, children arrive, and what seems like a never ending drought, I went fruit picking, Michael truck driving, to support kids and farm.
I started working part time for Heritage, 13 hrs p/wk, with time, that increased to full time work, which helped tremendously to support educating children.
By May 2016, I’d been working for Heritage 15 years, holding the Role of Branch Manager for 3 years, at my local Community Branch, Crows Nest.
I’d hand picked and trained a wonderful team of five staff, all who were delivering a high level of customer satisfaction, and most of my business were now repeat customers, most I’m proud to say I now know personally as friends. Life was good, children all educated, and now tax paying citizens – Michael was just two years off 20 years long service, with his employer. Our plan was for him to retire to the farm, full time, with me continuing to work in a job, I loved, to fund our overseas travel plans.
May 2016, one month after my 50th birthday, while having a shower, I noticed a lump, small, but definitely a lump in my left breast. I had an immediate sinking feeling, as my maternal grandmother had had pre-menopausal breast cancer.
Before this discovery, I’d been to my doctor, on a number of occasions, I just had a feeling something wasn’t right, my bowel felt different, hard to explain, but you know as a child we learn muscle strength in our bowel, well I’d lost some of that – doctors did a colonoscopy, all good. At my insistence that something was different, they started testing the Gall Bladder, however every test came back all clear.
I started to think they were going to start testing me for mental illness or paranoia next!!
An appointment with my GP confirmed the existence of a lump in the breast, that needed immediate investigation.
THE ROLLER COASTER WAS IN MOTION
A fine needle biopsy was next. Sixteen fine needle biopsy’s were performed, bending the needle twice, on one lump. All of these occurring in less than 12mths from my last mammogram…….. my first piece of advice ladies, if you have a family history of breast cancer ……….. don’t rely solely on a mammogram, insist on an ultrasound as well!!
As I was leaving the treatment room, the young technician said “good luck” What did he mean by that?
THE ROLLER COASTER WAS PICKING UP SPEED
Sent home to wait for results to be received by GP in two days – Work became therapy during this time, but instinctively I started to tidy my files for a smooth transition by the relief manager.
The next day I had to attend a meeting in Brisbane with my peers. Outside I was confident and professional, inside I was crumbling.
A chance meeting in the ladies bathroom, with a colleague, who greeted me warmly, excited to know how the wedding preparations were going – my stomach dropped through the floor. My God, Ashlee’s wedding in October, 5 months away !!!
FIRST BIG DIP IN THE ROLLER COASTER of emotions.
The next day seeing the GP, Michael & I had our worst fears confirmed. The lump had a name – CANCER.
The next day my boss delivered my best performance appraisal of my career.
Nothing short of death, would have made me give up that job. Now I realise with complete clarity, that my job really didn’t matter, what mattered was every second I could squeeze another moment in with my family. So I gave my boss my news, and that I was taking indefinite sick leave, and tomorrow was going to be my last day at work, for a very long time. For once he was speechless.
The next day, telling my staff was the hardest thing, a box of tissues later, we said our goodbyes.
Telling my mum, had to come next. She stayed with my brother, and his new wife to care for her for 6 weeks, before they felt she could handle going home.
Michael’s parents, were next, I couldn’t deliver this news over the phone.
Katie flew home from Katherine, as soon as she could. Having her home was a tremendous comfort.
THE ROLLERCOASTER WAS PICKING UP SPEED AGAIN.
Next stop ……chest X Ray, Bone Scan & MRI. Followed shortly there after by meeting with a Surgeon, we discussed a lumpectomy, however the surgeon squared up to Michael, suggesting if it was my wife, I’d be insisting on a mastectomy of the left breast, which we agreed. He also introduced me to one of Toowoomba’s breast care nurses, who happened to be based and worked out of this surgeon’s office, she gave me her card with contact details, stating that she would check in with me after surgery.
Later that evening, I received a call at home from the surgeon. ( I’ll never forget these words) “Oh love, you’ve got spots on ya bones, it’s alright love I’ve known ladies who’ve lived with spots on their bones for years!!! We won’t be doing a mastectomy on Tuesday, you’ll be having a portacath put in, pour yourself a stiff scotch, you’ll be right, you have a meeting with the oncologist next, she’ll ring you with an appointment time, OK.”.
NOW THE ROLLERCOASTER WAS HANGING UPSIDE DOWN, and I was having a melt down !!!
Why wasn’t I having a mastectomy?…wasn’t I worth operating on?…. Never have I lost control, but I did, at this time, frantically I search for the card of the breast care nurse…. This poor lady, getting a call from a hysterical women, this late in the day… she calmly explained that spots on the bones were bone metastases or secondary cancer, that chemo was now the best way forward to halt the spread, that having surgery would delay chemo, as time would be needed to heal first. A portacath would accommodate direct intravenous treatment, and not compromise the veins which can collapse from constant tapping by an IV needle. A mastectomy might still be on the cards, but down the track.
ROLLER COASTER RIGHT SIDE UP AGAIN NOW
Oncologist, Doctor N was my next meeting, she IS amazing, and after taking the time to explain treatment options, she advised that a mastectomy was not a priority, now or in the future.
She listened intently as I mentioned my concerns regarding the bowel, she then ordered another colonoscopy, however this time requesting a biopsy of the bowel wall. She was spot on, the cancer was in the bowel, appearing as a thickening in the muscle, impacting on the muscle’s ability to contract.
She explained that in some women with breast cancer, cancer cells break away from the cancer in the breast. The cancer cells spread to other parts of the body, via blood vessels or lymphatic vessels and form a new cancer deposit. This can happen before or after treatment for breast cancer.
She also wanted a biopsy done on the pelvis, as it had the larger hot spot or bone met, to confirm that is was the same type of cancer as located in the breast and the bowel, that was another learning, there are so many different types of cancer. Mine is Lobular Carcinoma, HER 2 positive. Which means that my cancer feeds on Oestrogen and Progesterone.
Breast Cancer is the only cancer that you put on weight ladies, usually 10kg, because of impact of hormone treatment effects, Oh and chemo throws you into immediate menopause, this ride just keeps getting better and better.. but just to make sure we’ll surgically remove your ovaries and fallopian tubes, as well to also starve the cancer, but that comes later.
So to biopsy the bone met. they drilled into my pelvis. I had to lie face down, perfectly still, and not move a whisker, while the technician drilled into my pelvic bone using ultra sound to target one of the larger of the bone metastasis, whilst under local anaesthetic. Gee … and to think I was afraid to go to the dentist, there are worse things ladies, let me tell you!!
My community rallied around me. I had home-cooked goodies, letters and cards and emails of support. One good friend, who
knew my passion was my garden, spent a whole day building, planting and fencing (to keep the wallabies out) a veggie garden outside my bedroom window, so I could look at it every day, knowing I couldn’t resist, it would entice me out of the house. Three of my closest friends, arrived with a selection of hats and head attire, all colours, and fashions. A local church in Goombungee, who had one of my clients as a regular attendee, asked if their church, could come to my house and pray over me, yes please, this was when my family and I were in a terrible dark place.
This particular night in June was the night before the colonoscopy, and it was cold and rainy. 15 people came to my home to pray. I was, and still am, so grateful, and if anyone has had a gastroscopy and colonoscopy, you know the vile prep liquid you have to take, and it’s effects… so every couple of minutes it was … “hold that thought”!!!
My first round of chemo, was every 3 weeks, for 4 cycles. Michael and I weren’t in a good place at this time. The day after my 1st chemo, I had my first brain scan also, happy to report there was a Brain in there, and no metastasis.
I remember driving out to Ashlee at Meandarra, on about the 3rd week of a cycle, just before the next treatment, you just start to feel good or normal, then treatment knocks you right back down again. Anyway I was going out, to help her with wedding invitations or something wedding related. On the journey home, I cried all the way back to Dalby, gut wrenching sobs, this was Ashlee’s wedding, she was having it at near Dalby, and I felt so ripped off that I couldn’t share in the excitement with her, I was just so sick in between treatments, I couldn’t attend her pre-wedding parties, as with no immunity, I couldn’t risk infection. However I did make it to Brisbane with her, to help her pick her wedding dress, that was special.
Around this time I met Gaye, Breast Care Nurse, at St Vincent’s Oncology. I was having a heart to heart with her, explaining, that I just couldn’t cope, not knowing what my future looked like, would I be returning to work, should I start making my funeral arrangements. WHAT!!!
She told me there were treatment options, and depending on the progression of the disease, I could hope to continue with life, and some form of a future. She gave me a brochure about a group based in Brisbane, known as Advanced Breast Cancer Group (ABCG for short). It is facilitated by Mary O’Brien, a Social Worker and Psychotherapist, and Pia Hirsch who is an Occupational Therapist and Psychotherapist. The group receives Govt Funding, but is a registered charity. They meet every Tuesday, in West End Brisbane, and those of us living out of the metropolitan area phone in, and join the collective chat. It was through this group, that you got me as your guest speaker, so if you want a refund, send the bill to them!!!
This group was a God send to Michael and I, we all meet twice a year in Brisbane, and can take our partners & or support persons
I had so many Questions………… like
# I need new underwear, should I buy some, will I get the wear out of them, or should just use Michael’s
# Do I go back to work, I was currently on sick leave, and could also take a career break, without pay? What should I do… answer…It depends, what do you want to do? Oh… I hadn’t thought of it that way!
A lot of black humour goes with this new perspective on life. In the group one of the ladies had a recent birthday, and since diagnosis had received a lot of very expensive perfumes, lotions etc, “more than I could use in a life time”. She ended up having to say to her close friends, “look enough, of this smelly stuff!! Don’t you realise, my family will have to clean this out one day?” Now, maybe that could have been said a bit more delicately? However we rolled around with laughter, but we now have a new perspective on life.
A local mens group made us all beautiful wooden handmade boxes. They are intended as a memory box, for us to put special mementos in for our family to open, after our demise, to reflect and remember. Well Michael, practical as ever, reckons that’s where he’s going to keep me ( my ashes). I said I don’t care, so long as you take me travelling with you, well you can’t leave me home to gather dust!!!!
One of the ladies in our group, arranged her own funeral, it was a scream, from beginning to end, as this reflected her personality. She reminded her first son, of his first job in their family practise. How he said to his mother and father, that this wasn’t a real job, so come his first pay day, she paid him with monopoly money – well she reasoned, if this wasn’t a real job, then he wasn’t worth paying with real money!!!
Life expectancy… to be honest, I’ve never asked my oncologist this question, as I’m too frightened of the answer. The longest diagnosed member of the ABCG group is 17 years, she’s currently having a grand old time touring Canada. But also this depends on how aggressive your particular cancer is. And how you personally respond to the treatment. Some ladies only get a couple of weeks out of a particular treatment – sadly this is usually the case with younger ladies with metastatic breast cancer, the cancer is very aggressive, and they burn through the treatment options, very quickly, it’s very very sad, when there’s a young family involved.
My last chemo, Navelbine gave me two years.
Most oncologists say on average 5 years, but you could fall short of the average, or exceed the average, in truth, no one knows.
One lady told her oncologist, that she was stopping treatment. The oncologist was dumb founded, why, when treatment was working? But she had had treatment fatigue, she’d accomplished all her goals in life, was tired of ongoing chemo, ready to call it a day.
In most cases, we feel worse from the side effects of the chemo, I might not look 90, but with the aches in my joints from the chemo, I feel 90 most days. Michael reckons, that when the day comes that I can’t go out and work in my garden that’s when I’ll be ready to buy the farm. He knows me so well. He also reckons that I will have his life organised for at least 10 years after I leave this earth, and he’d be right!! I’m organising T shirts for all of my friends and neighbours, that say “ ARE YOU WEARING YOUR HEARING AID MICHAEL”!!
So this year has been 3 years since diagnosis, I attended Ashlee & Brendan’s Wedding, it was the best, and the most proudest day of our lives for Michael and I.
Now ladies, you’d think choosing a dress for your daughter’s wedding is hard. Well, try choosing what hair to go with that outfit! Would you like to be a luscious red head, long haired blond ?
Well I chose grey, as I thought for sure, that is what my hair colour would be, once it returned, but as you can see, nope not grey. Not curly either!!!
I attended the Look Good Feel Better workshop, and I had to learn how to draw on eyebrows, before the wedding!!
Michael and I have since travelled to Europe, and Canada. It was while having breakfast in Canada, that I thought about work, and thought do I want to go back to work. Why do I want to go back to work? I’d achieved my personal goals by working, educated kids, built our dream home. That was the goal after putting all the info structure on the farm, fences, water, yards etc. So I emailed my boss, sending him a photo of Vancouver, and my breakfast, saying life is great, too busy to go back to work.
Yes I’ve had to dig out my old recipes for sausages and mince.
But as the kids said, “don’t go back to work mum, you’ve never been more relaxed, you have time to visit, meet for coffee”. So I’m now Volunteer Treasurer for Crow’s Nest Museum, friend, and keen gardener, yes even in this weather, weaners and hay make for great mulch. Oh and most importantly, grandmother to miss Holly, 8mths. So now when I drive away from “THE DELL” Meandarra, I thank God… for ALL of my blessings, all the way home.
Conclusion to my story, I’ve had recent progression in my right leg, with a new hot spot, on the femur, so I will be starting a new chemo, in September, which will mean hair loss again.
Yes I bought new knickers, and I buy a block of Cadbury chocolate, anytime I damn well feel like it.
THE ROLLER COASTER OF EMOTION HAS SLOWED TO A NICE RIDE. However it picks up speed a little, every time I have my 6 monthly tests & scans I’m not dying from Metastatic Breast Cancer, I’m living with it!
We are delighted by and very grateful for the generous donation to the service from the lovely women from the Weengallon Pink Ladies Day. Thank you all very much indeed. We will think very carefully how to use these funds, keeping women from rural and remote Queensland very much in mind as we decide.