I do some strange things while scrolling through my phone at night. My insomnia keeps me awake for hours sometimes with only my screen for company. I wake up the next day with buyer’s remorse, usually because I’ve bought shoes or clothes that never fit me, or an appliance that never gets used. But this time I woke up with a sinking feeling in my gut because I had signed up to GO PINK, and agreed to dye my hair pink for breast cancer research.
I’m pretty conservative and have never dyed my hair any shade that could be considered flamboyant or radical. As an introvert I hate to stand out in a crowd. The thought of it makes me blush so I’ll probably end up looking like a flamingo with cheeks to match my hair. I needed some courage and that came in the form of my beautiful niece Ally who LOVES to stand out in a crowd and possesses such a lively spirit that she’ll boost my confidence when I need it the most. Ally has been a wonderful support to me over the last few months. She was the person I turned to when I knew I was having my mastectomies because she’s been through breast surgeries herself. Having someone to talk to who has been through this has been a blessing.
I’m doing this challenge because it’s to fundraise for a cause that is very special to me. I have written about my genetic disorder BRCA2 which increases my risk of breast, ovarian, pancreatic and renal cancers and melanoma. I inherited it from dad who died from prostate and pancreatic cancer (both caused by BRCA2). I’m at home recovering from bilateral prophylactic mastectomies, which is a risk reducing surgery along with the removal of my ovaries which I had done in March.
The very fact that I could have risk reducing surgeries is entirely due to the discovery of BRCA2 in the mid 1990’s. Before that, entire families were devastated by breast and ovarian cancer striking again and again through multiple generations. It’s now commonplace for family members to be tested for genetic conditions when there appears to be a genetic link there. Discovering this gene mutation in 1995 was a game-changer for breast cancer research. It allowed people like me to discover their inherited risk for cancer and do something about it. Increased screening, prophylactic surgery and medications to reduce the risk are all possible now thanks to breast cancer research.
In my case there were few cases of breast cancer in my family so that alone prevented me from being tested ten years ago. It’s not as well known that men can have the genetic mutation too. Prostate cancer and melanoma have cropped up in our family through multiple generations, including my 24 year old son who had a melanoma. My cousin was diagnosed with BRCA2 about 10 years ago, and because of that I could be tested for free. The cost used to be extremely high but improved testing methods mean that more people can now be tested for it under Medicare. My sons and any other close relatives are also eligible for free testing.
I am passionate about research into genetic causes for cancer and other diseases. That is why I signed up to the GO PINK campaign because it raises funds for breast cancer research by the National Breast Cancer Foundation. If dying my hair pink raises awareness and funds, then I’ll do it even though I’m feeling anxious about looking weird with pink hair! The big day is this Friday and if you would like to donate to this cause via our team The Tough Titties (Ally’s idea, because people who have cancer have to be tough) the link is below.
As I wrote in my previous post, I have been in and out of hospital since March, pretty much the whole time Australia has been in lockdown. Going through health issues during this time has been challenging to say the least. I was lucky to have my surgeries at all because elective surgeries were put on hold to make way for an influx of Covid-19 patients.
Getting through the door of a hospital is like running the gauntlet as you are met by staff who screen you for signs of a fever and ask questions about your recent exposure risks as you enter the building. Visitors are limited which is difficult when you’re going through surgery.
On the 13th of May I had bilateral prophylactic mastectomies because my risk of getting breast cancer was 60-80% due to having the BRCA2 gene mutation. The surgery went well. The following morning I developed severe swelling in the left breast and my Hb dropped very low due to bleeding.
I had emergency surgery to drain the haematoma but continued to bleed into the drain. I lost over 1.2 litres of blood and needed 4 units of blood transfusion. It was extremely scary to go through, and I felt like I’d made a huge mistake to have the mastectomies done.
My recovery has been slow because of this setback. I was in hospital for 6 days, waiting for my blood count to get high enough. I’ve had some really low periods during the last couple of weeks, days where I’ve been really emotional and cried many times. I guess many women undergoing mastectomies would be emotional, but my own low mood is affected by the fact that my surgeries have had complications.
I have been extremely lucky to be in the position where I can have surgery during the pandemic. If I was a public patient my operations wouldn’t have gone ahead at all. I’ve always had private insurance, but that doesn’t cover all the costs so I’m lucky I had funds set aside for emergency as I am thousands of dollars out of pocket.
In Australia, hospitals have been very quiet because of elective surgery being cancelled. This has worked in my favour because I have been able to have a nice quiet atmosphere to recover. As a nurse I am well aware of how busy hospitals usually are so it was nice to see the nurses looking relaxed and not stressed.
I received outstanding care from the nurses and doctors during my admissions to hospital. I felt very well looked after especially when I had the post-operative bleed. If the nurses hadn’t been so on-the-ball my outcome might not have been so great.
I’m now recuperating at home, which will take time because of the complications. I’m very limited in what I can do and need to rest as much as I can. I’m typing this on my mobile phone because I need to limit my arm movements. I’ve never been so reliant on other people for my needs
I have deep appreciation for my husband who has been taking very good care of me. He’s had to shower me and wash and dry my hair as well as do all the household tasks. My heart swells with gratitude for how he has cared for me and I feel more in love with him for the way he does everything for me so lovingly. He has been my rock through so many things in the past.
I have felt loved and supported by so many people in the last few months. Even though we’ve had social distancing laws and can’t always be together, I’ve had many messages of support which have uplifted me when I need it the most. Social distancing hasn’t prevented them from caring.
My boss has been incredibly supportive as well, allowing me to have time off to have these operations and medical appointments. I am really grateful to her for caring and empathising with my situation. It has made a huge impact on my morale going through all my health issues to know my job is secure.
I’m through all my surgeries now, and on the way to recovery. I’m looking forward to gaining some independence back because it’s hard relying on other people. I’m very bruised and I still have drains in. I can’t do much except rest as I’m not able to raise my arms above my shoulders or even go for a walk. I’m really looking forward to the day I can walk the dog.
This year has made me aware of what truly matters in life. It’s not possessions or expensive holidays that count. The things I value now are my health, my loved ones and my independence. I feel very loved by many people and that is the ultimate outcome of a year which has brought unprecedented change to everyone worldwide.
While the World Has been focused on the Coronavirus I’ve been beating cancer
While the World Has Been Focused on the Coronavirus, I’ve Been Beating Cancer
The World around us changed dramatically between my birthday and my best friend’s birthday three days later. We spent the weekend together with our husbands, the four of us celebrating by staying in a resort and drinking, eating and laughing together. After we went home the restrictions started suddenly so that it would no longer be possible to socialise in that way. Our last weekend together from 20-22 March is the last time we could eat out at a restaurant or cafe, drink in a hotel or even spend time together. It seems like the distant past now.
Restrictions in our State have begun to be lifted but we still can’t eat out together or cross the border to visit my family who live just an hour south. Social isolation has added another layer to my own health battles that began to unfold this year.
BRCA2 Gene Mutation and Cancer Risk
I was diagnosed with the BRCA2 gene mutation in March. You may have heard about Angelina Jolie having BRCA1 and undergoing bilateral prophylactic mastectomies and a total abdominal hysterectomy a number of years ago. BRCA2 is similar – it increases my risk for breast and ovarian cancer dramatically. It’s a case of not if I develop these cancers, but when.
I knew there was a chance of inheriting this gene about 10 years ago when I nursed my cousin who told me she has the gene. I had genetic counseling back then but it was not very obvious that the gene was on my side of the family as there wasn’t a high number of family members with cancer, especially breast and ovarian cancer. The genetic counselor thought my cousin probably inherited it from her father (no blood relation to me). So I didn’t get tested and opted for more stringent screening instead.
I’m a huge advocate for screening – I’ve been having early mammograms and ultrasounds for the last 10 years and I get my skin checked six monthly. Because I starting taking my sons for skin checks from a very young age, my son’s melanoma was picked up when it was just a stage 1 cancer. A lot of people ignore things til they’re so advanced but that’s not me. I get every little bump checked out because I’ve seen too many invasive cancers as a nurse.
The last few years have produced more cases of cancer in our family – my son, brother and sister have all had melanoma and my father had prostate and pancreatic cancer. It was always in the back of my mind that I should probably get tested for BRCA2 so I went back to the genetic counselor, was tested and found to have it. I inherited it from dad – I had a 50% chance of having it and my sons then had a 50% chance of inheriting it from me. My first reaction was not for myself, but rather for my sons – “I’ve given them a death sentence”.
BRCA2 Affects Males Too
Telling them was difficult. It would have implications for when they want to start a family, and it might even be a deal-breaker for some women who wouldn’t want to have the risk of having children with a genetic disorder. They surprised me with their reaction, however. They said they’d rather know if they had the gene so that they could more more aware of screening and getting any changes in their bodies checked out early. They underwent genetic counseling and were tested and we were surprised and ecstatic to find they don’t have the genetic mutation after all (even my son who had a melanoma which is even more surprising).
Risk Reducing Surgery
My first response to finding out I have BRCA2 was to swiftly decide to have prophylactic risk-reducing surgeries. That involves removing the organs most at risk of developing cancer – ovaries (I have a 20-40% chance of getting ovarian cancer) and breasts (60-80% chance). Having nursed women with ovarian and breast cancer for most of my nursing career, I know how devastating those cancers are and I want to avoid them as much as possible.
I had the first surgery on March 30th – a laparoscopic bilateral oophrectomy (keyhole surgery to remove my ovaries). This surgery is low-risk and most people bounce back quickly, with very little complications. Then there’s me. I seem to have the worst luck when it comes to complications to procedures – I went into complete heart block after an angiogram and required CPR. One medication landed me in hospital from a severe allergy. So to have complications after this small operation, while not surprising for me, was a shock to the system all the same.
I bruised. My abdomen got extremely distended. A lot of pain and nausea. But the worst thing – I couldn’t pass urine. I ended up going home with an indwelling catheter and it unearthed a problem with my bladder that’s probably been there for a long time but wasn’t apparent until I had pelvic surgery. I had follow-up surgery to fix it last week and while there was an improvement, I’ll continue to have issues for a long time because my kidney and bladder have been damaged. All my back pain was from my kidney, not my spine after all.
This week I will undergo my biggest challenge yet – a bilateral prophylactic mastectomy. I’m scared of having this operation after what I’ve been through, but I’m more scared of breast cancer. Someone said to me that I’m brave to do this – I don’t feel brave. In fact I feel just the opposite. The women who have breast cancer are brave. Imagine going through this operation as well as radiotherapy, chemotherapy and medications for life. That’s brave to me.
I feel like I’m cheating cancer by doing these surgeries, but there’s still the risk of getting a different type of cancer because of this gene mutation. BRCA2 causes pancreatic, prostate and renal cancer as well as melanoma so I’ll still have to remain vigilant. Of course I can’t get prostate cancer, but pancreatic cancer is hard to detect and my dad’s was too far advanced to have any treatment. It ravaged his body and he only lasted for 7 months after it was diagnosed. Poor bugger, it was a horrible way to die.
How the Coronavirus Has Impacted Me
So while the world’s attention has been focused on coronavirus, my attention has been on my own health issues. I’ve found it hard to cope at times because it’s restricted my ability to interact with the people who are my confidantes and support system. Talking on the phone is not the same. Even when I was in hospital I could only nominate one visitor for the whole hospital stay. My husband was sent away from the hospital and could only visit for 2 hours once a day. Going through mastectomies will be daunting without him there for my support. The thought of it upsets me a great deal. I won’t be able to have my sons and best friend visit at all.
Elective surgeries were cancelled in March but I guess I’m really lucky that I knew the surgeons personally and my first operation was pulled forward to beat the deadline before it would have been impossible. I feel a little guilty that I could get this preferential treatment but there has to be some perks for nursing alongside these doctors for the last 20-30 years.
Having to tell my brothers and nephews over the phone and Messenger that they too have a 50% chance of inheriting this really sucks. Social distancing sucks when you have to have these very full-on conversations. Worrying that I may get the coronavirus affects my health too, because I have co-morbidities that would mean I’d be one of the cases most likely to end up really sick from it. It’s been a very stressful time, and I’ll be glad when this is all over and we’re out the other side. One things for sure, the world will be a changed place when this pandemic is done.
Note to my followers: I’ll be out of action for a while due to my surgery this week. I may be able to post short updates via my mobile phone but my usual blog posts will be on hold for a few weeks. Thank you all for your support, I really appreciate it.
Mother’s Day has always been a day of mixed feelings for me. My mum passed away from cancer when I was 24. She was 54, the exact age I am now. A lifetime without my mum has been hard to bear at times, especially those times when your mum would be present for you, like the birth of your children.
When I became a mother, it was a time of immense joy tinged with grief. My mum had only passed away 18 months before so I was still grieving. I had post-natal depression after my first baby, and really struggled with motherhood. My baby had colic and screamed a lot, his poor tummy visibly rippling with the pain of bowel spasms. My mum would have been there quietly supporting me and giving me advice gently. Her firstborn had also suffered colic so her advice would have helped me so much.
You never get over losing your mum. 30 years later, I still miss her and wish she was still here. She was the best role model for motherhood I could have had. She guided her family with a soft hand, never raised her voice or hand, yet instilled respect and compliance from us.
Before she passed away I spent a few days sitting by her hospital bed. That time with her I hold dear because she talked about mitherhood and advised me on how to bring up my children using the same gentle approach as she. I have never forgotten the advice she gave me and used it as a basis for my own approach to bringing up my children.
Being a mother has been one of my life’s joys. As far back as I can remember I wanted to be a mother. I had trouble getting pregnant and my pregnancies weren’t easy, but it was all worth it. That intense love you feel when you hold your baby for the first time is like no other.
I have always felt very emotional on Mother’s Day. Some years I’ve been really sad because it’s a reminder that I can’t give my mum cards, presents and a warm embrace. A few years ago I decided to do something to honour my mum’s memory so I joined in the Mother’s Day Classic which is held in memory of loved ones and raises money for breast cancer research. By doing that I changed an emotional sad day into something positive.
In honour of mum my husband and I are walking 5km today. It’s a virtual walk because of social distancing laws, which means we can’t join with other participants but the online community is very supportive of each other.
If you would like to donate the link to my fundraising page is below (click on the picture). All money raised goes to breast cancer research.
I was featured on the Empowered Beauties With Brains website. This is a community organisation that aims to help, support, motivate, inspire, uplift and empower women. The website showcases women from all works of life. It was an honour to be interviewed by Tiya Gorain, the founder, who is an entrepreneur and a wellness & empowerment coach based in Sydney, Australia.
“My goals in life were to bring up my children to be the people they’re meant to be, to make a positive impact on others’ lives, and to create a life of peace and joy for myself and my family… Your health is your most important asset. Don’t neglect it. Find some way to fit it into your schedule”.
You can follow the organisation on the following social media accounts:
Originally Published on April 24, 2020 by empoweredbeautieswithbrains
“We are a women empowerment community organisation. We believe that every woman has beauty, brains & power within. She just needs to recognise it within herself. Our intention is to help, support, motivate, inspire, uplift & empower women. We implement various programs, workshops, events, training and coaching sessions for the benefit of women in Australia, Singapore and India.”
The last week has been pretty hard for me. I moved my website to another website host and, to cut a long story short, I lost most of Midlifestylist.com. Six months of work down the drain.
It’s really devastating and I felt like giving up, but my son gave me a pep talk last night which encouraged me to keep going. He’s a musician, music and video editor and music technician and he’s had his full share of devastating losses like this – one of his hard-drives burnt out and he lost a whole year of work a few years ago. I feel terrible because people who clicked on a link to my site got an error message, I apologise for this if it has happened to you.
The good news is, I have been able to move my website back to the original place and it seems to have been restored just the way I had it before! Enormous relief.
Anyway, I wanted to commemorate Anzac Day today. Anzac Day is a Public Holiday in Australia and New Zealand to remember our Service men and women who served in the Armed Forces. With great respect we hold dawn vigils and ceremonies in honour of these amazing people. This year was different because of Covid-19 – social distancing meant that we couldn’t gather at ceremonies so we stood on our driveways with a candle instead.
In honour of my grandfather who served in World War One, I published his story in my blog about my family history, This is Who We Are. You can read it here. It is his memoirs of his time spent serving in France for the British Army – he went to war at age 18 and spent 5 years in the front lines in Ypres, Somme and Maubeuge in many of the bloodiest battles of World War One.
I also Honour my Father-in-Law Ces Henry who served with the Australian Army in Korea. He doesn’t like to talk about his time spent overseas serving our country, but we know that he was on the front lines there and conditions were particularly horrendous for them.
My sister’s son Xavier is carrying on the family tradition and is serving with the Australian Army at the present time. I’m very proud of him – his mother unfortunately passed away after years of being unwell so he overcame a lot growing up. He was deployed in Iraq for some time last year.
They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn,
At the going down of the the sun and in the morning,
I was asked to contribute a guest post by Sue Loncaric for her Website Sizzling toward sixty. Sue’s passion is “helping and encouraging women in midlife to reach their full potential living a healthy & active lifestyle”. I encourage my readers to have a look at her website because it has so many resources for women in their midlife to inspire and guide them to live a healthy life. Sue lives on the Gold Coast and we’ve never met in person but I look forward to having a coffee and a chat with her when we are no longer social distancing.
This was my first guest post and I feel very honoured to have been invited to take part in her series Aging Well Living Well. I talked about some of the challenges I have faced in my life and how I overcame them to arrive at this point in my life. Here is an excerpt:
I want my remaining years to be as healthy as possible so I strive to overcome my health issues and live the healthiest version of my life as I can… No matter what your issues are, whether they are physical or mental, a lack of money or support, it is possible to live the healthiest version of yourself. Do what you can rather than focusing on what you can’t.
I am passionate about research into genetic causes for cancer and other diseases. That is why I signed up to the GO PINK campaign because it raises funds for breast cancer research by the National Breast Cancer Foundation. If dying my hair pink raises awareness and funds, then I'll do it even though I'm feeling anxious about looking weird with pink […]
As I wrote in my previous post, I have been in and out of hospital since March, pretty much the whole time Australia has been in lockdown. Going through health issues during this time has been challenging to say the least. I was lucky to have my surgeries at all because elective surgeries were put […]
While the World Has focused on the Coronavirus, I've been beating cancer. I have BRCA2 gene mutation which gives me a very high chance of getting cancer so I've decided to undergo risk reducing surgery to minimise my risk.
Mother’s Day has always been a day of mixed feelings for me. My mum passed away from cancer when I was 24. She was 54, the exact age I am now. A lifetime without my mum has been hard to bear at times, especially those times when your mum would be present for you, like […]