Music has a positive affect on our emotions. I have always used music as a tool to uplift my mood. Spotify sent me my list of songs I listen to the most, and it’s too good not to share. I have dubbed my playlist the Mood Boosting Song List for Midlifers because listening to these songs never failed to uplift me this year.
Music Evokes Pleasant Memories
Music evokes memories of growing up in a very creative family. My parents met because dad spotted mum singing in the Church choir.My parents loved music and we were brought up loving a variety of genres from classical music to rock. My mother was a beautiful singer and I learned to harmonise by singing along to Eagles, Simon and Garfunkel and Fleetwood Mac. At Christmas we would stand around the piano while mum played Christmas Carols, and we’d sing along. Mum would also entertain by playing the ukelele and singing fun folk songs.
Our family’s love of music goes back generations. Dad’s father played the piano while silent movies played at the cinema. Dad had 8 brothers and sisters and they all learned to play an instrument. As a group they would play on stage to entertain a gathering. Some of the extended family became accomplished musicians. My cousin played viola for the New Zealand Symphony Orchestra.
Passing My Love Of Music On
Both my sons both inherited the music gene and can play multiple instruments. My elder son has played the drums in several bands and has a Diploma of Music. He has made a business out of creating band tour videos and music videos. My love for music extended to singing in the choir. I taught my younger son to cook while playing our favourite tracks in the background. He is a content writer, but the first expressive material he wrote was song lyrics.
So you could say that music is in my blood. I have used music a lot this year to uplift my soul as it has been a really tough year. Music never fails to improve my mood.
Here is my Mood Busting Playlist for Midlifers:
What music do you use to uplift your mood? Please share in the comments.
Our self identity is what defines us. Self identity is formed in childhood, largely by our parents. It develops over time, much of it stemming from the roles we take on. These roles may be chosen by ourselves, or inflicted on us by chance. The roles we identify with most strongly are what makes us who we are, and form our self identity. My roles as a nurse, mother and wife are the ones I identify with the most.
One of my roles – My 30 years as a Registered Nurse
This month marks 30 years since I graduated as a Registered Nurse. I was one of the last hospital trained nurses to graduate from the Mater Misericordiae Public Hospital in Brisbane. Nursing has been an incredibly rewarding career, and it forms a large part of my self identity.
My nursing career has taken me to the Northern Territory where I spent a year in a tiny 10 bed remote hospital. We did everything there – Accident and Emergency, Theatre, and nursing paediatrics and adults. I even assisted the midwives deliver babies which was amazing. We had our own plane and pilot so we did retrievals to remote outback areas, and down to Alice Springs.
Most of my career has been in surgical nursing in hospitals. I did a stint in palliative care but got really burnt out – I’m not cut out for that kind of nursing and really admire those that are. It’s a rewarding job but incredibly taxing on your body, especially the type of nursing I do.
What happens when a role that we identify with, disappears one day?
I’ve been unable to return to work for over three months, since my bilateral mastectomies. Because of the demanding nature of my job, I can’t return to work until I’m able to perform CPR and all the requirements of working as a nurse. While I’m glad I’m not pushed back to work before I’m ready, I’m finding it incredibly hard to wait patiently while my body heals.
Because I haemorrhaged the day after my mastectomies, I still have residual swelling and pain on the left side. Even a small amount of activity like light housework and shopping, causes more pain and swelling. There’s no way to tell how long it will be like this.
Missing my role as a nurse
I was expecting to be able to return to week six weeks after my surgery. It’s probably a good thing that I didn’t know I’d be off this long as I would have seriously considered delaying the surgery. That delay could have been detrimental to my well-being as my chances of getting breast cancer were so high.
I’m able to fill my days with other activities like writing (thank God for my blog!), and cooking, but I miss working. Nursing is so much a part of me – a strong aspect of my identity – it feels like part of me is missing. Nursing is such a fulfilling career. There’s nothing better than being able to make someone more comfortable, and assist them to heal.
I miss my colleagues too. Nurses have a real camaraderie. We can laugh and cry together, knowing that our job will make us feel so many emotions, usually all in one shift. I know there are many healthcare workers working incredibly hard under stressful conditions at the moment because of all the extra precautions we have to take due to Covid-19. To be stuck on the sidelines while my colleagues are struggling is frustrating. I just want to help out!
Over the last few years my health has taken several blows and I’ve struggled with the workload and shiftwork. Physically I’m struggling to cope with the demands of my job, but I still feel I have a lot left to give. I really don’t know what the future holds but I know if I can’t return to work as a nurse in some capacity I will really miss it.
The roles we identify with may be learned from our parents
I’ve written about identity in the past, and I feel my strongest roles that I identify with are being a mother and a nurse. This month also marks 28 years since I became a mother. Being a mother has been incredibly rewarding. I had a strong role model in my own mum, and I have tried to emulate her. There is no way anyone could come up to her standard! Our mothering styles differed somewhat – she was a stay at home mum for one thing. I don’t know if she would have approved of me working throughout my kids’ lives (apart from 4 months’ maternity leave for each of them). She passed away before she became a grandmother.
My husband and I will soon be empty nesters because my son is finally moving out! I loved having them live at home but they’re well and truly old enough to spread their wings. Because I left home for good at 19 so it’s extraordinary that my sons lived at home till they were 24 and 28. I must have made it too easy for them!
Merging two families can cause conflict
My husband came into our lives when my sons were in their late teens. He doesn’t have kids of his own. He took the right approach and didn’t try to be their father, which wouldn’t have gone down well at all. We’ve all lived together for about 6 ½ years so it’ll be nice for the two of us to finally have the house to ourselves. We’re looking forward to it.
Merging two families didn’t go smoothly all the time. My parenting style was different to my in-laws’ parenting style. I was used to being independent and not having family around to help out. My kids were very independent as well. Phil’s family live 5 minutes from each other and spend a lot of time together. I can go months without seeing my family (especially with the border closures at the moment) but Phil sees or speaks to his family nearly every day.
There have been rocky patches, particularly between his mother and I. She couldn’t understand what I was going through when I was grieving my dad. My husband was working away for days at a time, week after week and it was very hard. I had a fall out with her that lasted a couple of years.
I sensed real concern for me this year when I was going through my surgeries, and that has helped smooth things over between us. I’m so glad we’ve been able to patch things up because it put a strain on the whole family. We’re having them over for Father’s Day brunch which will be the first time in a few years that they all come here.
My relationship with the rest of his family has been much better. I gained his parents, brother, sister-in-law, two nieces and a nephew when I married my husband. I’m so happy to have a close bond with them because I no longer have my parents and sister, and I don’t see my brothers and nephews much (especially since the border closed between my state and theirs).
When one of our roles disappears, our self identity suffers
Mother, daughter, nurse, wife, sister, auntie, friend – many of my roles in life, and a strong part of my identity. These roles have shaped who I am and when one of the roles is absent, I feel lost. I’m able to compensate by spending more time in the other roles. It’s been lovely having more time to spend with my loved ones, and not be constantly tired from shift work. The challenge now is to accept that I am still me, even though I’m not working at the moment. I can channel my desire to help people into this blog, and still feel like I’m doing something worthwhile.
My role as a mother is changing with my sons leaving home. I’m still their mother though! That will never change. I’ve done my part – they’re fully functioning adults. Now I can enjoy my role as a wife more. We’ll have more quality time to spend together without the distraction of young people around. It’s something I look forward to, as I want to grow old together with my husband.
The roles we have help form our identity. When one of those roles disappears or changes, it can affect our self identity. We can compensate by spending more time on our other roles, and adjusting the way we think of ourselves.
What roles do you identify with? If one role disappeared, would you feel like part of you wasmissing?
Who could have predicted how 2020 would pan out? This has been my most unpredictable year to date, and that’s saying something. It feels like the rug’s been pulled out from under me, and I’m not alone in feeling that way. It has been an unpredictable year for many reasons, both personal and external. Change and uncertainty can add to the emotional burden of the other world events such as the pandemic.
“Life is What Happens To Us When We’re Making Other Plans”
Allen Saunders, 1957
At the dawn of the New Year I wrote a post Don’t Hold Back. Full of optimism and excitement for the year ahead, I planned to learn new skills and apply for positions that would take my career into a new direction. My older son, inspired by my enthusiasm, planned to travel and push his music career to new levels. We often talk about how our year has not panned out in the way we planned it.
My son had to put his music on hold while we were in lockdown – he couldn’t drive to Brisbane to practice with his band, and gigs were cancelled for months while venues were closed. He was extremely frustrated – musicians need to perform. When their creativity is put on hold a major part of themselves is affected. Travel is also out of the question.
Changes in the Family Home
The first shock of the year came when my other son decided to move out. The Half Empty Nest is the post I wrote at the time when I was going through a grieving process as I came to terms with it. As it turns out, I’ve coped very well with my son moving out and very soon my other son is leaving too, then I’ll be an empty nester for the first time in 28 years! It’s wonderful to see my sons “adulting” – they need to move out for their own personal growth.
BRCA2 and its Impact on my Health
The next shock, in February, was my diagnosis of a genetic mutation, BRCA2, which increases my risk of cancer. At the beginning of this year I would not have believed that I would have four operations, two of them to fix complications from the other two, and that I would have most of this year off work. My recovery has been prolonged, and at this stage I’m looking at even more time off work.
As a Registered Nurse in a busy surgical ward, I am unable to return until I can complete my role 100%, including performing CPR and patient handling. The loss of that role has been extremely upsetting to me. I’ve been a nurse for over 30 years and it’s part of my identity. It’s taking me a while to come to terms with that. The impact of the surgeries and complications has also taken a toll. My body is different now, and I have new issues to deal with that will remain with me for life.
March saw the Pandemic drive us all into lockdown. I doubt if anyone in the world has not been affected in some way from Covid-19. I’ve been isolated from some of my family since then, and unable to spend time with some of my closest loved ones. Not being able to travel to be with family during life-changing events like a death in the family, has taken its toll on many of us.
I’ve now been at home recovering since mid-May, and had time off prior to that for my first operation. The only positive is that I’ve been able to spend time on my blog, and work on my website to get it the way I want. I really don’t know how I would have coped without this to do. I would have gone crazy with boredom!
New Home for Midlifestylist
In the last two weeks I have moved my website from WordPress.com to a different platform. I’ve been busy trying to get my website back up and functioning. In the transfer process the last seven blog posts did not migrate to the new host, so I’ve been republishing them. I can see the light at the end of the tunnel now.
I am so glad I took the plunge and transferred my website. The potential is amazing – I have lots of ideas on which direction I want to take Midlifestylist, so watch this space!
Ongoing Health Issues and the Emotional Toll
In order to cope with massive life changing events and my health issues, my ability to cope emotionally has been under strain. I’m not coping as well as I was a few weeks ago when I thought that my life would be back to normal by now. I reached out and I’m going to talk to a counselor to help me to adjust.
I don’t think there’s any shame in admitting that you need counseling. When your sleep is getting affected, and you’re crying at the drop of a hat, it’s time. I’ll be looking into other ways to assist as well, like meditation and mindfulness. Being proactive with your mental health is a sign of strength, not weakness.
I hope this resonates with some of my readers, and they find comfort in the fact that they are not alone in feeling stressed by the unpredictable events of this year. Our ability to cope with all that 2020 has given us has been pushed to the limit. Seek help if you’re not coping. Don’t struggle through on your own.
It’s five weeks since my bilateral mastectomies and in that time there have been triumphs and setbacks. I’ve been trying to stay positive even though things have not gone as planned, and my recovery has been slow. I’ve been filling my time to help deal with my recovery time at home.
First the triumphs:
Midlifestylist is now officially a business! I registered the business name on the Australian Business Register and applied for an ABN (Australian Business Number). It’s exciting to see my business name on official documents. I first thought of the name seven years ago and bought a domain name but didn’t officially start my blog until October 2019. If I start earning money through my website I’ll need to pay tax so I thought it would be worth registering the name officially.
My husband and I baked bread for the first time. He did all the mixing and kneading because I’m still not able to do anything strenuous. We ate 3/4 of the loaf with some homemade vegetable soup because it was so moreish. We have a bread-maker on order but it won’t come until July. It looks like everyone else had the same idea when there were shortages of everything in the shops.
Our vegetable garden is thriving and we’re already eating produce from it. Every year it improves because with trial and error we’re finding the best ways to do things. The weather has been perfect for growing too with lovely sunny days and plenty of rain. Winter really is the perfect time of the year in Queensland.
I’ve been collaborating with other bloggers on some projects which are new and exciting. One of the best things about blogging is the community of like-minded individuals that you meet online. Reading their blogs gives you another perspective as well.
Now the setbacks:
I still have a lot of swelling and the wound is taking a long time to heal because of the massive post-op bleed I had on the left side. I had to have another course of antibiotics and I’ve been very restricted in what I’m allowed to do. I’m supposed to start back at work on Monday but I’m not up to that because nursing is a very active job and I’m not allowed to lift anything or do strenuous work yet. I was referred to a haematologist to try to get to the bottom of why I bled so much. It may be genetic because I’ve had a few other instances in my life of unexplained bleeding. There have been days when it all gets too much and I’ll be very down in the dumps and cry, but I’m able to bounce back and am in a positive frame of mind most of the time. I’ve had a lot of support so that definitely helps.
Because my mobility has been restricted I’ve been very tired at times. The worst week was when my husband went back to work after looking after me for 3 weeks. I wasn’t allowed to drive so was catching the bus and tram which meant catching 2 buses to get to my doctors’ appointments and 2 home, plus walking. I can drive short distances now and that’s been a huge improvement. We hired dog walkers so that my dog didn’t miss out on his walk and now that I can drive I can take him to a dog park where I can park so close that he can jump out of the car and go straight onto the off-leash area so I don’t have to hold his lead. He’s a big boy and at the moment I’m not up to him pulling on his lead.
The Pandemic and Social Distancing
The social distancing laws are gradually easing in Australia which is a big relief. The border between Queensland and New South Wales will open in a couple of weeks so I’ll finally be able to visit my brother who lives an hour away. We have a camping trip planned for the last weekend in August which has been delayed twice before. We’re really hoping we’ll be able to go this time. My sister-in-law’s 50th birthday party can finally go ahead as well – she was waiting for restrictions to ease. It has an Alice in Wonderland theme so I’ve been making a costume – watch this space as I may be brave enough to publish photos!
I hope all my readers are staying well and coping with whatever restrictions are on in your part of the world. This year has certainly put a lot of stress on to people and we’re all having to cope with current events. There’s still a lot of unrest from the Black Lives Matter movement, which I wrote about in my last post. I hope that this year’s events bring about lasting change for the better. The world has now woken up and it would be awesome if we all learnt the lessons that are available to us.
While recovering from surgery there are triumphs and setbacks. It’s important to stay positive and look to the future as this period in my life won’t last forever. I don’t regret making the decision to do risk-reducing surgery as it means my chances of getting cancer are reduced almost to zero. No matter how hard things seem right now, it is important to focus on the bigger picture. I’ve been through much worse than this in the past and I know I have the inner strength to get through this as well.
Some time ago I was asked by Denyse Whelan to write a guest post for her Women of Courage series. I’ve been following her series every week and have been inspired by all the other guests so it was an honour to be included. Denyse is someone I admire because she has had her own battles with cancer. I look after people going through this type of cancer after they have surgery and it’s a huge deal – head and neck cancer is incredibly challenging but Denyse survived this and has gone on to write very inspirational blogs about this and many other subjects.
Since I wrote this guest post, I have had four surgeries – two planned and two unplanned. I had the surgeries with the intention of removing the organs that were targets for cancer – my ovaries and breasts. I have BRCA2 gene mutation which gives me a very high chance of breast, ovarian, and pancreatic cancer, and melanoma. Previous posts were written about it here, and about my surgeries here.
As an update to my last blog, I am raising money for breast cancer research by taking part in the GO PINK campaign for the National Breast Cancer Foundation of Australia. GO PINK encourages people to dye or shave their hair, wear pink or hold events in order to raise awareness and funds for breast cancer research.
The National Breast Cancer Foundation
“National Breast Cancer Foundation (NBCF) is Australia’s leading national body funding game-changing breast cancer research with money raised entirely by the Australian public. We receive no government funding. What we do, would not be possible without the support and generosity of people and organisations like YOU. Our mission is simple: stop deaths from breast cancer. How? By identifying, funding and championing world-class research – research that will help us detect tumours earlier, improve treatment outcomes, and ultimately – save lives. Since NBCF’s inception in 1994, the five-year survival rates for breast cancer has increased from 76% to 91%. It’s proof our strategy is working. More than ever, NBCF is focusing keenly on how we can do more with less in order to achieve great outcomes that will impact the longevity and quality of life for patients with breast cancer. For us, this means identifying new and effective models of funding and ensuring that we don’t stand alone but work collaboratively and creatively to achieve our mission of zero deaths from breast cancer by 2030.” Source: https://fundraise.nbcf.org.au/event/go-pink/why-we-need-you
Our team, The Tough Titties
My niece Ally, her friend Coralee, and I are the Tough Titties! Our dye day was on Friday. We went live on Instagram, so that our followers could watch us dye our hair pink. During the live feed we explained why raising money for breast cancer research is so important to us. We have raised $754 so far – our aim is $1000. If you would like to donate, here is a link to our fundraising page:
I have written about why I am raising money for breast cancer research in this blog post. I am passionate about raising money for research into breast and other cancers, particularly cancers that have a genetic link. Unfortunately I have the BRCA2 gene mutation that increases my risk of breast cancer to 60-80% and ovarian cancer to 20-40%, as well as other cancers as I have outlined previously. Both my parents died of cancer and my son, brother and sister have all had a melanoma. Ally’s grandmother also passed away from cancer before she was born, and her other grandmother (my mother-in-law) is suffering from lung cancer. In our family alone, cancer has had a huge impact.
Update on my Bilateral Prophylactic Mastectomies
I am recovering at home after my bilateral prophylactic mastectomies that I had done on 13 May 2020. (Read about it in this post). Recovery hasn’t been as straightforward as I would have liked due to complications after my surgery. My wound is healing slowly and I still have a lot of swelling and bruising. I’m seeing a haematologist now, to try to uncover why I had a large post-operative bleed. Even with all the complications I have had and how much this has impacted my life, I do not regret having surgery to remove my ovaries and breasts. With my high risk of cancer, I could be going through these surgeries with cancer which would have been so much worse.
Doing something positive like raising money for breast cancer research has given me something to do other than feel sorry for myself. I’m not saying I haven’t had days where I’ve been very emotional. I’ve had some days where I’ve been very upset. But having something to focus on has been really positive and helped me to focus on something during this time. I’ve also had some really great support in the way of lovely messages and kind words. That’s the sort of impetus I need to get me through.
Having our dye day was so much fun, especially with Banjo as our mascot. Here is a collage of photos from our photo shoot with him, which was hilarious!
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.
Why Breast Cancer Research is Important to Me
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 prostate 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. It 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. 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.
My Family History of Cancer and BRCA2 Gene Mutation
In my case there were few cases of breast cancer in my family. 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. Because of that I could be tested for free. The cost used to be extremely high. Improved testing methods mean that more people can now be tested 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. 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. If you would like to donate to this cause via our team The Tough Titties the link is below. (The name is Ally’s idea, because people who have cancer have to be tough).
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. Being a patient in a pandemic has increased the stressful experience a massive amount. I was lucky to have my surgeries at all. 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 enter the building you are met by staff who screen you for signs of a fever and ask questions about your recent exposure risks. Visitors are limited which is difficult when you’re going through surgery.
My Recovery From Bilateral Prophylactic Mastectomies
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. My haemoglobin 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.
A Prolonged Recovery Due to Complications
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 to be discharged. 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. 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. I’m lucky I had funds set aside for emergency as I am thousands of dollars out of pocket.
The Cancellation of Elective Surgeries
Hospitals have been very quiet in Australia 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.
Limited Movement Post Mastectomy
I’m now recuperating at home, which will take time because of the complications. I am 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 and 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.
Emotional Support For Mastectomy Patients
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.
Looking Forward To My Recovery
I’m through all my surgeries now, and on the way to recovery. I am 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.
I have had my own challenges while the World’s focus has been on the Coronavirus. This is a personal account of how the BRCA2 gene mutation has affected my life.
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.
We still can’t eat out at restaurants together, although restrictions in our State have begun to be lifted. We are unable to 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). Consequently, I didn’t get tested and opted for more stringent screening instead.
I’m a huge advocate for screening. I have been having early mammograms and ultrasounds for the last 10 years. Every six months I get my skin checked. My son’s melanoma was picked up during a routine skin test. This was possible because I starting taking my sons for skin checks from a very young age. My son’s melanoma was diagnosed when it was just a stage 1 cancer. Many people ignore things until they’re 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. I went back to the genetic counselor to be tested. Results showed I did have the BRCA2 gene mutation. 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. Their response was that they’d rather know if they had the gene or not. They were now aware of screening and get any changes in their bodies checked out early. They underwent genetic counseling and were tested for the BRCA2 gene mutation. The results came back negative. We were surprised and ecstatic at the results. Even my son who had a melanoma was clear 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 became 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. While there was an improvement, there will be ongoing 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.
My next challenge is Bilateral Prophylactic Mastectomies
This week I will undergo my biggest challenge yet – a bilateral prophylactic mastectomy. After my previous operations I’m scared of having this surgery. I’m more scared of breast cancer though. 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. My dad’s was too far advanced to have any treatment. Pancreatic cancer ravaged his body. 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
Attention has been on my own health issues while the world has been focused on coronavirus. I have found it hard to cope at times because it has 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. I feel really lucky that I knew the surgeons personally and my first operation was pulled forward. Any later 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. The world will be a changed place when this pandemic is over.
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.