Updated: 12th Oct 2024
This is the kind of post I never thought I'd have to write.
On the 18th December 2023 I was diagnosed with breast cancer. It is a journey I never wanted to embark on, but the only way forward is to focus positively on my recovery and take it one step at a time.
My primary focus for 2024 is healing, and as I look forward to my next chapters after this, I am even more excited about the amazing holidays I've yet to experience. Moments like this are the most powerful reminder that we have to make the most of all the time, and all the opportunities, that we have.
This post is a summary of my recovery journey. I'm updating it at key stages so that family and friends wanting more information can access it, and hoping that perhaps at some stage in the future, my journey may help someone else that finds themselves unexpectedly on a similar path.
My journey starts at the bottom of this post for those that want to scroll down, and the latest updates are at the top.
The Rollercoaster
When I was first diagnosed a very good friend told me that treatment and recovery would feel like a rollercoaster, and that it would be like taking on another job - in both cases she was very right.
From December to August the focus was aggressive medical treatment and it took all of my strength to keeping showing up for treatment. There are lots of different specialists you need to work with, and so many medical appointments. I wanted to run away and stop so many times, but my desire for a long, healthy, second chapter after this kept pulling me through.
I can't really explain the toll that this process has taken on me - I feel battered and shaken. I am deeply relieved to have finished the chemo, surgery, and radiation stages, yet feel daunted about how best to really recover. There is still so much raw grief, sadness, and fear, to work through.
I have been seeing a psychologist from Mind My Health throughout the process which is helpful, but no-one can work through this process for you - it's an individual journey which can feel very lonely at times, even when you have fantastic support from loved ones. I believe my mental, emotional and physical wellbeing need a lot of nurturing.
Radiation
I started radiation on the 29th July and finished it on the 16th August. I had to go to 15 sessions, every day Monday to Friday for 3 weeks. Although the radiation process was physically easier for me to handle than chemo or surgery, I was so mentally, emotionally, and physically depleted by this time that I felt quite distressed and cried regularly. I had my radiation at Genesis Care in Norwest and the team were incredibly kind.
Radiation therapy was recommended by my Doctors, and I completed it based on my trust in their expertise. At the same time, after months of intensive treatment, there was part of me that kept wondering 'is this really necessary' and I was desperately hoping it would not cause me any serious problems. One of the major reasons I'd chosen to get a DIEP reconstruction instead of implants was because I'd been told that implants can respond very badly to radiation.
I experienced some skin irritation/burning and was applying a recommended cream, StrataXRT, from the day I started radiation, and expect it helped a lot. They say symptoms can get worse up to 2 weeks after treatments end and my skin did get more irritated and tighter on the right side. I later found out it can take few months after treatment for everything to settle back down.
The radiation also caused one of my wounds to open up again, which meant regular visits for wound dressings again for a while, but a full 4 months after my major surgery everything has re-healed, and it will hopefully only be good news from here.
Surgery
After my early conversations with the surgeon in December, I thought I was clear on the surgery I was going to have post chemo. However, after looking at my April scans in detail, knowing that I wanted to remove any known areas of potential future concern, as well as the areas already impacted by cancer, the surgeon indicated I may need to consider a mastectomy on my right side.
This changed everything for me from a decision making perspective. If I needed to have a mastectomy I knew I wanted to have a reconstruction immediately if possible, and as we were also discussing removing at least an area of potential concern from my left side as well (it had tested as benign but kept flagging on my scans as abnormal), I eventually made the very difficult decision to do a bi-lateral mastectomy and DIEP reconstruction. Surgery also included removing some of my lymph nodes, and I had this surgery on Saturday 11th May.
I was in surgery for 9 hours and initially I thought I'd be in hospital for 7-10 days but ended up staying in for 16 (discharged 27th May). I had 6 drains & a catheter post surgery, which they started removing around day 4, however the last drain was removed after almost 3 weeks. Although parts of my scars were recovering well, I unfortunately got an infection in hospital which slowed down the healing process.
After getting home I went to the Community Nursing and Hospital in the Home nursing teams for dailing dressing changes initially, dropping back to every 2 days around week 4. I'd never gone to these teams before and I have to say that the staff in Goulburn have been wonderful - very caring and compassionate. Much to my surprise I was still getting wounds dressed up to the time I started radiation in August, with one small wound still being dressed for the entire time.
I knew it was major surgery but I hadn't let myself think too much about how hard the recovery would be as I didn't want to be more scared than I already was. Beforehand I'd spoken to two people that had previously done the same surgery which was helpful, but the recovery was really tough. Each week got a little better as I could do a little more than the week before, but the physical, mental, and emotional toll of everything has been brutal.
I was also upset to find out I had to have another surgery to remove the rest of the lymph nodes on the right. I'd been told it would be a possibility but had hoped it wouldn't be necessary. I didn't want to do it and was nervous of more potential side effects, but it's the current best-practice for my situation so I proceeded based on trust in my medical team. I had the second surgery on the 20th June.
With the second surgery I was only in hospital overnight but had another drain in for about a week. In turned out that they only got 1 more lymp node, meaning I had an unusually low number in total, but it did test positive for cancer, so I'd made a good decision to proceed.
It took me a couple of months to be able to walk upright properly after the first surgery but I think it will be many more months, if not years before I feel no discomfort. Because my wound healing was taking so long, and because I felt so shattered after my operations, I held off starting radiation until 29th July.
Chemotherapy
My Dr's made the decision to do chemotherapy first with a goal of shrinking the tumours pre-surgery.
I was originally told I had to do 4 fortnightly cycles on one set of drugs and then it was expected I'd do another 4 cycles on a different set of drugs. However, I had an incredibly tough time with the chemo sessions, experiencing major complications linked to 50% of my treatments (including hospitals stays, a seizure, vomiting, and potential heart complications), and my Oncologist made the call to stop after 6 cycles. I knew chemo wouldn't be easy but it was a really difficult experience physically, mentally, and emotionally, and the relief I felt to know that it was over is impossible to put into words.
I tried the cold cap for 2 sessions but I didn't keep enough hair to make it worth continuing that. Within 2-3 weeks of starting chemo I had large bald patches on my head, and over a week worked through the process of getting all my hair cut, then shaved off. Although I know it will grow back losing my hair has been a very difficult part of the process.
I completed progress mammograms and ultrasounds after the first 4 cycles which showed the tumours were shrinking which was really positive news. Following my 6th cycle, after we confirmed chemotherapy would stop, I had another set of scans before seeing the surgeon to confirm plans for surgery.
It's Always a Good Time for Good Surprises
It can be really tough for friends and family to know the right things to say, and to know how best to provide support. Although there is no right way to help, I'm a firm believer in the concept that 'it's always a good time for good surprises' - particularly at a time like this when someone has experienced a lot of bad news.
I have been really moved by the loving support of my family, friends, and colleagues, and Elliot's family, friends and colleagues, at this difficult time. I have deeply appreciated all the beautiful messages, calls, flowers, gifts, and visits, I've received, as they have been a source of joy in the midst of my challenges. 💖
A special thank you to Elliot's friends from the SES as well, who have been kind enough to mow our lawn a couple of times as a surprise, as well as send me flowers when I was in hospital.
Compounding Grief
Over 2 weeks in December my Stepfather Geoff died, I was diagnosed with breast cancer, and my younger brother Richard died on my birthday. Geoff and Richard had both been unwell for some time, but nothing could have prepared our family for losing them both over Christmas and New Year within 2 weeks of each other.
Richard was only 42 and he had suffered with a rare dehabilitating illness, called CIDP for several years and I started a small fundraiser for CIDP in his honour if anyone reading this would like to contribute.
I still don't think I've had time to process everything properly, but events like this help clarify who and what is important in life. Every day is a gift.
Right now I don't feel very strong, but I have a lot of supporters reminding me that I am.
"Strength doesn't come from what you can do. It comes from overcoming the things you once thought you couldn't." Rikki Rogers
Cancer Diagnosis
I went to a new GP on the 18th December 2023 hoping to be told the biopses were all clear. Instead, I was told that the tests confirmed I had breast cancer in two locations.
Thankfully one of my closest friends is an Anaesthetist and I'd spoken to her about the tests. She was the first person I spoke to about my results and she was able to recommend a breast cancer surgeon that she's worked with for many years. Being able to be referred to someone so trusted made the next steps slightly less scary.
The next week (the week before Christmas) was a whirlwind of appointments, where I met with the surgical team and the oncology team. There was so much new information to take in which was daunting, and plans were put in place for me to start chemotherpy in January.
At this stage I found out that there are several different kinds of breast cancer, as well as different stages, and the medical team working with me were developing a unique treatment plan based on my individual circumstances and age.
In this week I also completed a range of additional tests to check my heart and blood pre chemotherapy, as well as a PET scan and CT scan to see if there was cancer anywhere else in my body. I was extremely relieved to get confirmation that my cancer was limited to the two locations already known.
The Statistics
I was shocked to find out that the risk of being diagnosed with breast cancer in Australia for women is 1 in 7, and the risk of cancer generally for Australians is 2 in 5!
Mammograms, Ultrasounds & Biopsies
During my first mammogram with BreastScreen they explained that it's common to be called back for more tests, particularly when you are new, as this can help create a baseline for monitoring against in future years.
Due to the above I wasn't surprised to get a call back for more tests, and I'd read that over 90% of those called back did not have cancer. A little worry crossed my mind but I went into the second testing day positive all was OK.
I was told the day was set up to do any extra testing needed so it would start with 3D mammograms (instead of the 2D versions done originally), then if needed move to ultrasounds, then if needed a biopsy.
The second day of testing started with them telling me they were concerned about one section of my right breast. The testing started with more mammograms, then ultrasounds, which were all relatively easy and I was fairly optimistic I'd be told I could go home soon. However, when I was asked to repeat those tests again, I started to get more nervous.
By the time I was sitting with the Dr, I was expecting they may want to do a biopsy but I was not in any way prepared for her to say they wanted to do 3. Two on my right side and one on my left.
I have been scared of needles for as long as I can recall. Hearing they wanted to do 3 biopses was frightening as the fear of having cancer was becoming very real, combined with my fear of the biopses about to happen.
I found backing up for the 3 biopses traumatic, I was upset and scared, and having to be awake to work through the process was distressing. I had 5 local anaesthetic needles to numb the areas, followed by them taking about 10 samples across the 3 sites, they also placed markers in each area. The taking of the last sample was the most painful as they unfortunately went beyond the area of the anaesthetic to take it.
As I was scared and upset at this stage I sobbed through the entire process. However, if I'd only needed one biopsy and if I been able to relax and stay calm, I think the discomfort would have been limited to that of the anaesthetic needle.
At this point I wanted to believe the worst was now behind me and I'd be told by the Dr that the biopsy results were all clear. I was booked in to see the Dr on the 4th working day after the procedures.
First Mammogram
After you turn 50 there are some medical test reminders that start coming in the mail.
My first was the Bowel Screen Test which I completed and sent back, and received the all clear in the mail which was great.
The second, was the BreastScreen flyer, encouraging me to have what would be my first mammogram, as they are recommended every second year from age 50.
Women are always encouraged to see their Dr to investigate any lumps they may find at any age. I didn't think I had any lumps of concern, but I've also been irregular in self checks.
The breastscreen flyer had been temporarily left on the fridge as I knew I needed to get the test done, I just hadn't rushed to make the appointment. I'd heard a few stories about how painful mammograms could be and was nervous about the appointment.
Eventually I made the appointment, and about a week before I wondered if I felt a ridge in my right breast. I didn't know if that was new or normal, so I was pleased that it would be checked.
It was easy to get the appointment done locally and I was fortunate to find that the mammogram was less painful than expected. There were a few seconds of uncomfortable pressure applied a number of times, but overall it was a real relief to get it done and put it all behind me for another 2 years - or so I thought at the time.
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