It’s only 3 months of my life. 4 cycles of treatment. I can do this.
This morning I woke, and keen to follow all instructions I went for a walk around the block. With each step I felt stronger and more determined. I wanted to keep walking, if I could have walked to Bunbury, I would have! But I needed to get home and get steroids in, step two in the process.
My chemo buddy arrived to a stressed house. I was very anxious and rushing about the house with everything half done. Of course this was rubbing off on the other family members. Things were tense, but chemo buddy managed to diffuse the situation and get me sorted.
We headed to Bunbury. Once in the hospital I actually relaxed. I guess being a medical person, and being treated in a hospital I have worked in for many years, it was familiar and I felt safe. Probably the complete opposite to the average patient. I saw people I knew and got hugs in the hallway.
Early on, we got to have a great laugh trying on the free headwear. We really weren’t sure what this one was about or how it should be worn but agreed it looked like something out of Star Wars.
Had to wear the BooBee T-shirt too!
Once in the treatment bay, things got underway quickly and I am remaining calm and comfortable throughout. The dreaded cold cap is absolutely fine, it seems all those tight swim caps and winter lagoon swims were good preparation.
As I sit here with the second drug running. I can say this isn’t as bad as I thought. I think the hard part will be over the next few days when I really start to feel the effects of the drugs, but at least I know I can bear the cold cap and I am doing the best I can to hold onto some hair. But, if it goes it goes.
Cold cap sexiness
Thank you for all your kind wishes and messages of support over the last few days. These give me strength during this challenging time.
I’ve got this, and with the help of family and friends I will come through this stronger and wiser. Soon it will be a distant memory.
Wild, bushy, fluffy, thick, curly, ginger, beautiful. All words used to describe my hair over the years. So much of my identity in those many…… many strands.
If I lose it, do I lose my identity?
Of course not. As a friend kindly pointed out, I am much more than my hair or my boobs. I am tough, loyal, giving, a team player, a parent, a wife, a daughter, a sister and a friend. All of which I can do with or without hair.
For my husband, he has seen many transitions through my hairstyles, from quite severely short, to mid length, to long and back to mid length. This will just be another phase.
However, my hair ritual has always been very important to me. I have attended the same salon every six weeks, for sixteen years!! It isn’t just about my hair itself, it’s about the routine as my sister pointed out. The chat, the magazines, the cup of tea, the head massage and the connections are just as important as what is being done to my hair.
So today I went for my last full hair experience before chemo. Cut, colour, massage, blow dry and style. Plus the chat, magazine, tea, hugs and pamper. The girls made me feel special and today’s experience made me come to a decision.
I will fight for my hair, but I won’t put myself through hell to save it.
I have been deliberating over whether to try the cold cap offered to some chemo patients. The idea is to take the scalp temperature right down and constrict the blood vessels, reducing the amount of drug reaching the hair follicles. It is exactly what it sounds like, and means enduring an ice cream headache possibly for the duration of treatment (around three hours). Although some say after 15 minutes you go numb. It may or may not work.
So, I’ve had a chop to get good scalp contact and I’ll give it a try. If it doesn’t work or is too unbearable ………… well bald will just be my next phase.
Rocking the pre chemo chop
One thing is for sure, hair or not, I can still go to the salon every six weeks for a massage, cuppa and a chat. I’ll be welcomed with open arms and it will help me to feel ‘normal’
I have had three days to process the next step in my journey. I said the other day, I was shell shocked. That wasn’t quite right, I know enough about this stuff to know chemotherapy was always going to be on the cards. It wasn’t a complete surprise or bolt from the blue.
What I actually was, was deeply disappointed (thanks Dad for giving me the right word) and scared. I was disappointed that I was going to have to walk an unknown road, the road on which I have vast knowledge gaps. And what I don’t understand and am not in control of, makes me scared…….
I don’t know how the drugs will make me feel, I don’t know what will happen to my hair, I don’t know how my children will feel with a mother that will outwardly look sick and I don’t know how I’ll cope with looking and feeling sick. I am not good at sitting still.
But then I reminded myself, I have chosen to undertake chemotherapy because it will give me the best chance of never seeing this thing ever again and living a long and fulfilling life. I also reminded myself, there are plenty of people out there (that I know even) that have done this before as well as plenty that can help me negotiate it.
On Wednesday, I started the day by crying on a friend’s shoulder. Then, I got on with it. I read all of the information from my oncologist, I got on the phone and I started calling for help. I spoke to a McGrath nurse I know through work. After her initial surprise, she was straight onto helping to fill my knowledge gaps. She emailed information specific to my questions and referred me onto Breast Cancer Care WA for counselling support.
I made it my mission to understand as much as I could. A close and very special friend visited and insisted she would be my chemo buddy. This was a great comfort and another thing I don’t need to worry or think about. Others sent messages of support and reminders of how strong I am. I read every one and then I got my big girl pants on and started to flex those ‘strong’ muscles.
Thursday was all about my hair. I still haven’t made a decision about what I will do, but I researched cold cap therapy, debriefed with a friend and called my hairdresser. I talked to my children about what they would feel comfortable with, and I started ordering headwear.
So, that is where I am at….. my knowledge is improving and I am working towards just ticking that next box.
Tonight I don’t have many words. To be honest, I’m shell shocked. Chemotherapy starts on the 10th of March.
I’m tough and strong, but for some reason the prospect of losing my hair is more scary than losing my boobs. I guess it’s because I’m actually going to look like a cancer patient. At the moment, I look like normal Amber.
I know you are all behind me and I promise to ask and accept help, but for now I need some time to process.
No cancer journey is without setbacks. To this point I have been very lucky. I guess the biggest problem I have faced is the asthma. It is 4 weeks today since surgery and my breathing is still not right.
The greatest issue this causes, is talking (and for me that is a problem!!). Fortunately I have found writing because if I tried to say all this, I would have simply run out of breath. But, it is frustrating and worrying for me. I have managed my asthma for some 45 years and I don’t remember many times it has lingered like this. Usually it would have been hit with steroids by now, but the doctors are reluctant as it may disturb my healing.
What I have noticed, is the more I worry about it, the worse it gets. I never realised how much anxiety also plays a role. Of course, the anxiety I am feeling is not easily dealt with. Yesterday my asthma was terrible…….. later today I see the oncologist…… I see the link.
In the last few days I have suffered another minor but irritating setback. Over the weekend I had a reaction to the dressings over my wounds. Having been there for 3.5 weeks, I decided the best course of action was to get them off.
I am sure things will settle, but at the moment where the dressing were is red raw with rash, and it has spread over much of my chest. Somehow I am resisting but I want to scratch myself to pieces!!
The good news is, now that I can see them, the wounds are looking good. It is amazing how the body heals. In many places there is only a thin red line evident…… amazing. Others areas are slower but I guess that is normal.
So, today is a big day. First up, I see the GP for an asthma check up and hopefully a plan for my rash. Late this afternoon I see the oncologist for a plan on how we eliminate this nasty bugger forever.
It may well be time to hit the steroids (both oral and topical) to knock these setbacks on the head and give me the strength for the next phase. We’ll see, but whatever happens today, I am ready to face it head on.
I have never been very good at accepting help. I never, never ask anyone for help, because in my mind it is a sign of weakness. To me, it means I am not capable of sorting myself out. I would rather ‘bust a gut’, ‘run around like a headless chicken’ and almost systematically feed my anxiety, just to prove I can do it all.
But the situation I now find myself in, has made me look back and realise how silly that all sounds. Who was I trying to prove myself to??
The answer of course is……………. me. No one else ever put that pressure on me or expected me to do everything…………… except perhaps my children. But, that is purely because I created that kind of environment and those expectations at home. I did so much for them, that it became an expectation.
In this modern world, everyone is busy and caught up in their own stuff. None of us are immune. Sometimes we completely loose sight of those around us and what they can do for us, but also what we can do for them. We are afraid to put burdens on each other because we are barely coping with our own shit, without taking on someone else’s.
But when something like the big C comes along, somehow an army of people around me, created space in their lives to help. From meals and baking that arrived on my doorstep, to the crafts and activities, to the friend who sat and crafted with me, to those that drove me places, to those that made sure my children were doing ok, to medical advice and supplies, to today’s homegrown vegetable delivery and weeks of beautiful messages of support.
I didn’t ask for any of it, but I certainly appreciated every single bit of it. And for the first time I was able to accept it all without feeling terrible about troubling people. It’s because I felt like a had a valid excuse to accept it! (So silly) But what I noticed, was how much they were getting out of it too. Not only was it helping me, it was helping them to feel useful and needed.
It is proven that volunteering is one of the most healthy things you can do for yourself. It offers a sense of fulfilment, breaks your daily routine and offers new relationships. The whole crux of being needed as a volunteer is that someone asked for help in the first place. Nothing to be ashamed of, but something to be celebrated. It shows bravery, self awareness and a healthy knowledge of boundaries and capabilities.
So, one of the many things I am learning on this is journey, is that it is okay to admit you need help, to accept the help of friends and family as well as strangers. You never know what beautiful relationships may develop.
Lending a helping hand
I received a message of well wishes the other day from a lady whose dog my daughter and I walked for 2 years when she was not able. We developed a special relationship that I had almost forgotten about because I was too ‘busy’. Her circumstances changed and we rarely see her. Having heard my news, she sent messages of love and support.
It reminded me that, although it is impossible to keep every relationship alive and current, we can always send our love when needed, and whatever little thing we can do to help, will be appreciated. And, above all……… when you need it……….. never be afraid to ask for help.
When these kinds of diagnoses occur, the person involved has to make so many choices. Not the least of which, is who to tell and when. This is very individual, and something that may change along the way. Your wants and needs ebb and flow.
For me, the first big hurdle was whether to tell the family at Christmas. Our children knew about my appointments and asked how it went. We are a very open family and I could not lie, so they knew things weren’t good the evening of the 23rd.
A close friend who always shares Christmas Eve with us, knew the minute she walked in the door something was up. She didn’t ask, but after a few drinks I shared my news. We had a cry. It was still so raw, yet I took comfort in knowing she was behind me and ready to assist.
On Christmas Day, we always start with a swim in the shark net. My husband went alone. I was not allowed to swim following the biopsy and I had barely slept. I decided to reserve my energy for the family. I knew it would be a tough day.
Our swimming friends were surprised not to see me. My husband told them why, naturally they were shocked but they were there for him, something I am very grateful for. My first messages of support started rolling in.
I decided I would conceal my news from the family. I didn’t want to ruin everyone’s day. But, like my friend, Mum new something was up. We had gathered for brunch and I just couldn’t face the pile of food in front of me. She asked if I was sick………….. I said……… I think so…….. and it all came out.
When I think about it, it was actually the best time to tell them. At least we were all there to support one another, Christmas is the only time of the year this happens. I opened a bottle of bubbles and Mum and I drank our sorrows away. While everyone else fussed around, sorting food, offering support and explaining things to the kids. We had each other.
It made me realise, that getting it out in the open was going to help me immensely. I needed to feed off the support of others. I found it very difficult to talk about, but a few days after Christmas I started messaging my friends and colleagues. I will be forever grateful that I did. Although I didn’t feel strong enough to see them, the messages of support gave me so much strength.
In my previous blog https://theboobee.blog/2025/01/31/finding-strength/, I talked of how my knowledge gave me the ability to be strong. True, but it was my friends and family that made it a reality. In the wee hours, when I lay awake thinking about what was next, I reread those messages of support over and over. I drew strength from them and I knew I could go forward and beat this thing.
As you all know, I have now opened my circle even wider and I am considering ways to make it wider still. As I said at the start, it is a very individual choice as to when you let people in. When you, and only you (as the person going through this) feels the time is right. For many, the battle may remain a secret for a long time or maybe even forever. That is your choice.
For me, letting people in gave me tremendous comfort. Not only that, it gave me the bravery and brawn to put it all out there, to be raw and honest. And this appealed to one of my biggest moral values, to help others (it’s why I do my job, why I take on so much). But you all made me feel that maybe I have a role to play. Sharing my story and my knowledge could help others in more ways than one.
It’s not just about breast cancer. It’s about sharing your problems, allowing yourself to be vulnerable and allowing people who care about you to shoulder some of the burden. I have learnt a great deal about human nature in the last few weeks. I am not alone in wanting to help others, it is a very common and noble trait. We just have to allow people to actually do it, to say yes when they offer support and remember that it actually helps both parties.
I’m going to step back a bit and tell you how I found my nasty little cancer. Being in the industry it would be remiss of me not to….
I have had biannual mammograms since I was 40. I always practiced what I preached. But, prior to that, my breasts were troublesome. The first biopsy I had was back when I was at university, we were studying mammography and I found a lump. I had an ultrasound and a fine needle aspiration (FNA). It showed nothing abnormal, but the lump remained.
After having my first child and while breast feeding, I found another lump. Ultrasounds and another FNA identified a blocked duct. Phew. For a decade or so my breasts behaved.
Then, in my late 30s I had a third ultrasound. I can’t remember if I found another lump or if the doctor just sent me for an ultrasound because they were lumpy. This ultrasound was interesting.
Machines and resolution had improved so much and the sonographer was able to determine that the first lump (from back at uni) was a lymph node sitting in my breast. A slightly unusual place for a node but nothing to worry about and finally an explanation for my lump. She also found cysts, and lots of them.
Once I started having mammograms my report always said that I had dense breasts. It recommended I see the GP who, given my history, routinely sent me for an ultrasound. Several times, this lead to more biopsies of complex cysts.
In the industry we would say that I had ‘busy’ breasts. I was every sonographer’s worst nightmare, locating, comparing and documenting multiple cysts is never fun.
18 months ago I had my mammogram as normal, followed by an ultrasound. Everything seemed stable and no biopsy was needed. They were their usual ‘busy’ selves.
Given the nature of my breasts, I always found self examination difficult. My breasts were full of lumps and bumps. But, on a regular basis I tried my best. In November 2024, I felt something unusual. It was much harder than the rest of my tissue, sitting deep to the inferior aspect of my nipple, about the size of a small grape.
For a few weeks I continued to feel it. Then I scanned myself (ultrasound). What I saw was not an obvious cancer but an unusual area, in fact I had never seen anything like it. Still I waited. I scanned myself again. No change.
I went to the GP who agreed she could feel something. She referred me for a ‘proper’ ultrasound and told me it was time to step out from being an imaging professional and into the patient role. Gulp.
I was super busy with work, finishing a tafe course, and general family life. It took me a little while to co-ordinate a time with my colleague (she offered to stay back late, come in early, work through lunch whatever it took…… but I was busy). Finally I got there, 2 days before Christmas. My colleagues were amazing, I went from ultrasound to contrast mammogram to biopsy in one afternoon. By the end of the day, I knew. I didn’t have pathology results, but I knew.
If you’ve been reading my blogs you’ll know the torment of the waiting over Christmas and all I could think was…….. Amber, you could have done this weeks ago but you were too ‘busy’.
I know many women find themselves in this situation, putting themselves last on their list of priorities. I don’t know how we change, but this has been an illustration of why we shouldn’t do it. It’s also an illustration of the value in knowing your own body and using all of the resources out there to detect cancer early.
I got it early, but I will always think, I could have got it earlier if I, and my breasts weren’t so dam ‘busy’.
Ax
Glossary:
Cyst – fluid filled pocket. Benign, very common, particularly around peri-menopause.
Dense breasts – breasts that have a higher percentage of fibro-glandular breast tissue compared to fat. This type of breast is normal and relatively common, but it does increase the risk of breast cancer. It also makes mammograms more difficult to read. But, this does not mean mammograms are not valuable with this type of breast, they most certainly are. Some cancers can only ever be detected on mammograms.
My results are in this blog. Sorry it’s a bit long winded. I’m building suspense 🤣
Throughout any cancer journey there is a lot of waiting. Waiting for initial diagnostic imaging, waiting for biopsies or tests, waiting for results, waiting to see a specialist, waiting for a surgery date, waiting for more results, waiting for what’s next.
In my work, patients have always said to me that the waiting is the worst part and I have to agree. And I was lucky. Being in the industry, there were some strings pulled and I was squeezed in at the diagnostic level and I jagged a cancellation with the surgeon for my initial consultation.
The absolute hardest part of my journey so far, was being diagnosed over the Christmas period. The GP was closed. The surgeon was closed. The breast care nurses….closed. There was no one to talk to. My brain went wild. My knowledge became both an advantage and a disadvantage.
By the end of the ten day period, I had made decisions on what I wanted to do in terms of surgery, but my mind had also conjured the absolute worst case scenario. I hadn’t slept, hadn’t eaten, had lost weight and generally lost condition. Not a good way to start a battle against cancer.
I am the type of person who has to have a plan. If I am moving forward ticking things off, I’m okay. There was no plan. The only thing I could think to do was to swim……. every day. My friends rallied to keep me company. All the while, I was thinking about our holiday on the 9th of January….. cancel or not cancel?!
Once the GP opened (2nd Jan), I got a referral to the surgeon, got some sleeping pills and had a good cry with a professional. Tick, I had done something.
Then I waited another four days for the surgeon’s offices to open (6th Jan). They opened three days before our holiday (9th Jan). As I said earlier, I was lucky enough to get a cancellation, we saw her 17 hours before we flew out!
We decided to start hormone blockers, go on holiday and book the surgery for as soon as we returned. The hormone blockers were the key in my mind, I was doing something towards my treatment, moving forward.
We had a great holiday and I will be forever grateful we took the time. It allowed us as a family, firstly to set it aside and have some fun and then as it came closer, time to prepare ourselves for what was ahead. I ate and I slept in the first week, the second week was harder.
Peering into North Korea
Then I came home with Influenza B!! No one else got sick, just me. Not really surprising considering I was in poor condition. It made for a challenging surgery, a grumpy anaesthetist and a tough recovery. But, I got through it.
In a way, the difficult recovery was good, it took my mind off the pathology results. I had to focus completely on getting well, my asthma was bad and I had wounds to heal. I had things to work on to move forward, and working on that, got me almost the whole way until results day.
Almost.
The last two days were tough, my mind was going over all of the possibilities. Thank you to those who provided distractions.
Yesterday, we drove to Perth. I did not stop talking the entire way, poor husband. But, it was a good indication my chest had recovered and the only way I knew to stop me thinking about what was coming.
The results were good! The lymph nodes are clear, all margins are clear, the lesion was a little bit smaller than expected, the nasty little bugger is gone! No radiotherapy. Then she said…… but I would like you to see an oncologist just to get their opinion. The cancer was invasive, therefore, ‘preventative’ chemotherapy still isn’t off the table and we need their opinion on long term hormonal therapy.
So, fantastic news, I am so relieved and it is all very positive. But, a small part of me thinks….. great, here I am back to waiting. The referral is sent, so fingers crossed it isn’t too long until I see someone. Hopefully I don’t need it, but chemotherapy was always a scary thought to me because it is something I know little about.
In the meantime, I am back to my activity table and healing, the wounds have a way to go yet. My daughter and I are having a 1000 piece puzzle race. She’s good, and she also has techniques to distract me from my puzzle in order to get the upper hand. I think I might have selected the easier puzzle though, so we’ll see…
One of my biggest fears after diagnosis was what I might miss out on this year. Would it effect holiday plans, events with the kids and swimming? An early realisation was ………I would have to miss the 2025 Busselton Jetty Swim. It would be the first time in 15 years I wasn’t out there.
This was particularly devastating for me. It is an event that I am so passionate about. Over the years I have done many solo swims (3.6km) but I have also swum it in duos and teams. These were because I wanted to share this beautiful event with those I love and the kids I coached.
In recent years, I had done the mile, once escorting a beautiful friend and last year because I missed out on a solo entry. Incidentally, that turned out to be one of my most competitive swims, finishing 4th in the old lady’s division!
It never mattered to me which way I was swimming it as long as I was in there. I’ve watched the men and women in their 70s and 80s, blind and disabled. Families, friends and couples achieve their goals. And then there are the people that have overcome huge challenges just to be there. It is so inspiring. The swim’s tagline is ‘everybody’s swim’ and that’s exactly what it is.
Yesterday was the day. I planned to sit at home and have a nice breakfast and look forward to 2026. But a part of me knew there would be an awful lot of ‘poor me’ going on in my brain.
But then my army stepped forward….
The people I had encouraged and hopefully inspired along the way, stood up and did it for me (of course they had their own reasons but I know they were thinking of me). From our friends that meet us for early morning swims in the shark net, to the friend I meet weekly at Yallingup lagoon, to kids I’ve coached, to my friend who had been building her way up to a full solo and overcoming injury……. to my beautiful and courageous son.
They did it for themselves and me.…… and the conditions were horrendous.
For my boy, it was a last minute decision. He hadn’t trained, an ex competitive swimmer who had lost the love. A spot came up and being a lifeguard at the pool, he had listened to the swim coach’s preparations and tips for his squad and he thought…… I can do that.
As a parent, there are many proud moments but I’m not sure anything will top this one for me. It hurt him like hell and as I say the conditions were crap, but he kept going.
His one request was that I was at the finish line. It was a bit of an effort, but of course I got there and this was my reward…
The finish line
It turns out the 2025 (30th Busselton jetty swim) will be one of the most memorable. As a wise person in my family said ‘I could not have handed the baton to a more reliable person’
And the challenge is set….
He told me last night, he’s training for the solo next year and he’s going to beat me.
The BooBee Journey 