being a patient – Page 2 – The BooBee Journey

Treatment 2: The aftermath – Going, going….. gone

In the interest of honesty and realism….. the last three days have been really tough. There has been so much doubt, a lot of tears and a lot of self reflection.

It started on Thursday. I just felt really down and emotional. I think it was coming off the steroids that triggered it. I was at home and couldn’t really bring myself to do anything. A couple of well timed visits from Mum and two friends, got me through the day.

I wanted to be getting excited, because on Friday I was going back to work. But I couldn’t muster the energy, even though I knew getting back to some normality is exactly what I need. I am done with sitting around thinking and reflecting, it’s time to move forward.

But something was niggling me…..

On Friday I awoke to a head of matted fluff masquerading as hair. I got in the shower hoping to give it a wash and make it look presentable. I wet it and it came out in clumps. It was 6:30am and I didn’t know what to do. I was too scared to shampoo, I was too scared to touch it. I drove to work in the rain with it dangling limply.

I walked in the door and was welcomed warmly by my beautiful work friends. The first thing I said was “I’m having a really bad hair day”. The girls were lovely and encouraging, buoying me up as best they could.

I got stuck into my day, feeling my way around my new non-clinical role. It was so good to be using my brain and to feel like I had something to contribute. The day flew by.

But…….. boy did I underestimate how much it would take out of me. By the time I got home I could barely speak. It took me 10 minutes just to get out of the car!! I walked in, turned on the oven (to reheat a meal delivered on Thursday) and got into bed.

Then I cried for an hour.

I realised, it wasn’t about work ….. it was my hair. Work had managed to distract me for a few hours but deep down, I knew the time had come. It had to go. But I still wasn’t ready.

This morning, after a sleepless night (despite being exhausted) I again woke to hair all over the pillow, an itchy scalp and lots of knots. I got in the shower and tried to wash it. As I massaged the shampoo I felt it tangle more and more. The drain was full, I was crying and yelling at Andy.

Get it off my head now!!

I started at it with the macrame scissors attacking the most matted areas. Then Andy came with the clippers. It was a relief and it was heartbreaking all at once.

I’m not ready to show you what it looks like just yet. Mr Bee did a brilliant job in my hour of need but I am seeing my trusted hairdresser this afternoon……. just to make me as presentable as possible but also to make me feel a bit more like me……. the girl who has her regular and religious appointments.

Surgical review

Warning: some personal details

Yesterday, the day after my second chemo treatment (not the smartest planning) we headed to Perth for my two month surgical review.

My body was going through a few wee chemo side effects which resulted in an emergency toilet break and can you imagine? …… they were closed with plumbing issues!! I was very uncomfortable and couldn’t believe my bad luck. Luckily, Andy managed to get us across the highway to toilets on the other side before an accident, and all was right in the world again!!

We carried on to Perth had a picnic lunch in a lovely little park before heading to the consultant. In the carpark, Andy gave me an injection into my stomach. I have this 24 hours after chemo treatment to stimulate the bone marrow to produce more white blood cells. We felt like junkies and had a laugh as we disposed of the evidence. When I have this injection, it takes the wind out of my sails pretty quick. By the time I was in the waiting room I was almost asleep.

Anyway I woke up enough and great news, the surgeon is impressed with my healing progress. She was happy to hear I am back in the water and I have her green light to go back to work (lucky because I start on Friday!). I don’t need to see her for another six months which is fantastic.

The most interesting part of the appointment though was when she showed me my ‘before’ pictures. This is something a friend and I were discussing last week…… did I have photos?? I had completely forgotten to take some and also forgotten the surgeon did at my first consultation.

It was very weird sitting there looking at my old boobs from several different angles. She then took the ‘post’ pictures. I look completely different naked, but in clothes I think not many of you have noticed. I take my hat off to my surgeon and all the work she does. I am very happy with the result and think of her not only as a life saver but as an artist. She has made me look better!! Neither myself nor Andy felt any kind of sadness when looking at the before pictures.

So, another box ticked! I am getting through this thing and can see the light at the end of the tunnel. I’m really looking forward to getting back to work and to my new form of normality. I will remain forever changed physically and mentally but now it is time to start turning that to my advantage and carrying on with a fuller, yet less cluttered life.

Treatment 2 – The measles one

So here I am for treatment number 2, the soldiers are back in my body and on their cancer finding mission.

It has been an interesting couple of days with a measles outbreak in Bunbury hospital. This means more hoops and complications (as if chemo isn’t enough). N95 masks for patients and surgical masks for support people. Feels like Covid all over again.

Back to my hair…..my moulting got worse and worse until on Saturday I filled the plug hole in the shower. I questioned the cold cap and wondered whether it was best to just get on with what seemed like the inevitable. Just shave it off and be done with it. The clippers came out and I burst into tears. My husband pointed out that although I had lost a lot, I still had enough. There are no bald patches, it is just thinned. We decided one more try of the cap.

I walked into the oncologist’s office this morning and the first thing she said was “Wow, look at your hair, you must be using the cold cap”. Ha, so it is working!!

We did it again and what a difference. I realise now my hair was so thick at the first treatment, the cold cap didn’t feel that bad because I had a layer of insulation!! At this treatment it felt much colder (but I still coped fine). Hopefully this means a better result…… and I ended up with icicles!!

Icicles and lots of hair left in the cap 😥

Again, I didn’t find the treatment too bad. Having the cold cap makes it a much longer day and they were under the pump in the unit so running behind. But that’s ok, we had plenty to do. We started planning a birthday party, had a visit from a colleague and chatted about the kids. I tried to snooze at one point but there was too much background noise (like people talking to family on speaker phone 😳).

And…….. we found the crazy hat. We still do not understand what it is or how you are supposed to wear it, but it makes us laugh so hard….. and when you are sitting in a chemo ward, laughs are hard to come by.

Watch out for the Dumbo look at treatment 3.

Now, I just take it easy for a few days and let the soldiers do their thing. I can preempt some of the side effects this time so it should be a bit easier. And the good news…… 2 down, 2 to go……. half way 🎉

Treatment 1: The aftermath

So far so good. It’s only day 3, so I’m not getting too excited yet. I feel very chemical……. I’m excreting it, exhaling it and crying it. I can feel it everywhere.

I am going to describe something that will likely make me sound a bit crazy but bear with me, it’s just because I am a visual person…..

A few weeks ago, I described to a friend about how antibiotics are like a little cleaner man, running around your body, sweeping germs out of the corners. Well….. if that was my analogy, then chemotherapy is like having an army inside you. They have guns, tear gas, grenades and other chemical warfare. They are running, ducking and weaving. Diving and rolling. Searching and searching.

I am not a person who believes in war, except in this case. My body is at war and I am encouraging those soldiers to get the job done. Find any little runaway cells, the rouges and defectors and kill them dead, in whichever manner they need to.

From the outside, I am still looking and feeling ok. A bit bloated from steroids and tired looking, but I am getting on with my days. The macrame orders are coming along nicely and I am resting when needed. I managed a 20 minute walk last night.

More than anything I am staying positive. This little blip in the road will not get me down. It will make me stronger. Cancer, you picked the wrong person to mess with.

But, I’m not going to pretend I feel this positive all the time. I had a moment last night, where I suddenly felt acutely aware not only of the chemicals inside me, but of the tissue I’ve lost. I shed a few tears. It was the first time I’ve mourned the part of me that is gone forever.

I haven’t written about the surgery I chose, simply because I believe everyone should make their own decisions. Every breast cancer, the circumstances surrounding it and the person fighting it, are different. I would not want to sway anyone. My choice and reasonings, belong only to me. I have alluded to it along the way, but I won’t share the complete details on this forum (happy to talk or private message though).

Anyway, I’m all good and just plodding along gently.

Here I go….. Treatment 1

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.

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.

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.

To tell or not to tell?

Sorry……. probably tears again.

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.

A x

Finding the lump

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’.

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.

For more information on dense breasts click here:

https://www.breastscreen.health.wa.gov.au/Breast-screening/Dense-breasts

Results (yay) and more waiting

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.

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…

Keeping it real (part 3)

4:20am clunk. The last cog just turned.

I do not need to talk so much ever again ✅

I do not need to explain everything I’m thinking to every person that crosses my path.

I can write it down and whoever wants to listen can read it.

I can now rest my tongue and listen to the world around me. The beautiful place where the birds sing and the waves crash.

Last little tears.

And breathe.

Now I truly heal.

And I promise, this morning there are no drugs.

Keeping it real (part 2)

Disclaimer: Still hold your stitches and perhaps, make sure no one is driving a car!

It’s the middle of the night again and I realised there is more to that recent blog. I’ve also realised 2-3am is when I write best. Although several have said since reading part 1, my best writing is on drugs. Well sorry about that but I’m not sure where or how I will ever get that concoction again and I’m not sure I should!!!!!

So at this time of the day/night I often have a cry. I now realise, this is not new to hospital, it must just be emotional o’clock for me. I have also said to Andy frequently in recent years, why am I so serious all the time. How do I become more lighthearted and relaxed like you? He has said, you just have to be able to laugh at yourself.

Well, the nurse just popped her head in to see if I am ok because she heard me coughing. I was coughing because tonight I cannot stop laughing……. at myself and my drug fuelled Amber version 2.0.

What an idiot.

Mum did say a couple of days ago (not sure when, I’ve lost all sense of time) “Amber, I’m worried because I love version 1 Amber”.

Well, don’t worry Mum, you were right, that version 2.0 thing was a whole lot of bullshit. OG Amber was pretty good, she just needed a few small adjustments.

So….. I can now laugh at myself ✅ I can identify my trauma ✅ I can get help to face that trauma ✅ (notice I say get help, yesterday I believed I was a psychologist and could easily fix myself!!!) Oh, and I can beat breast cancer ✅

As far as rubbish I have sent or spoken. Not everyone has read the part one blog yet, but judging by the comments coming back, it was really only family and a couple of close friends that received or heard some abnormal data. Perhaps as a friend suggested, my worry about seeing a message I don’t remember, was just some drug amnesia happening.

But……. My daughter is the one who received the all time best comment. I told her, I was going to ‘rise from the ashes like a Phoenix’ 🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣🤣

Being an avid fantasy reader and Harry Potter enthusiast, I knew this would appeal to her (at least I had that part right). But the funny part is…….. I was so smug about my comment. I mentioned it to my husband several times. I thought it was the best comment ever and I’m ashamed to say, this was yesterday, not day 1,2,3. I should have been seeing clearer.

Her response was…. “Wow very inspirational” and my husband simply said…….. “I haven’t seen you burst into flames Amber”. It was good and it was relevant, but I did worry her. She thought I had gone to cloud cuckoo land!

This is where I now realise, my husband is fine. He always is. He must have watched the last 6 days and listened to some of the comments and thought……… yep…….. she’s on drugs.

Incidentally, I do need to get out of here now. For my medical friends…. yesterday afternoon I managed to self diagnosis myself using my ‘ultrasound vision’ with a seroma, a DVT and superficial thrombophlebitis.

Get me out.