Hmmm…….. shouldn’t it be the other way around?!! A hive with bees.
Couple of little setbacks this week. Over the weekend I had a random allergic reaction to something (who knows what) which resulted in a very itchy Amber. I was covered in hives that moved from one area to another….. scalp to neck to bottom to knees to ankles to arms. Weird.
After a quick trip up to the oncologist yesterday, they are drastically improved with the help of steroids and two antihistamines. I am also suffering with runny eyes. Paradoxically, it seems I have ‘dry eye’, so eye drops for that.
Anyway, another day another side effect, but there is some good news this week. I didn’t believe Mum and Dad when they told me, but I have decided they might be right!! I’m growing some new fluff on my head!!
Baby hair
It’s very light in colour and similar to baby hair but any hair is a good sign right?!! Watch out….. my grey pixie cut is on the horizon!
I am nearly a week on from my last chemo treatment and my head is in a funny place. I have this constant nagging question ……. What happens now?
Yes, I know I still need to heal. I have the physical effects of chemo to recover from and hormonal treatment starting soon. But, I am anxious to move forward, move past the diagnosis and treatment. I need a plan of how I am I going to live my life post cancer.
I’ve mentioned before, things shouldn’t go back to how they were. I cannot continue to do a million things, achieve a million things and expect myself to perform the way I always have. I have to slow down, I have to be compassionate towards myself and I have to finally learn to say no because……. well…….. my life actually depends on it now (dramatic but true).
But how?
How do you find a balance between a healthy lifestyle, making ends meet, feeling fulfilled and challenged, yet not overworked and overwhelmed? It’s not going to be easy and will likely be the biggest challenge of this whole journey.
It’s about a fundamental change in mindset. I have to think more about what I really want to be doing with my time, not what I think I should be doing with my time. At yoga this week I received this affirmation. It is quite fitting don’t you think?
With small changes and adjustments, and without big expectations I should surely be able to do less!! (please remind me I said this when I am feeling frustrated or overdoing it!).
I’m starting simple, focusing on keywords. Today’s……
Time
Family
Love
I’m taking time in my family home, surrounded by love, to try and love myself (faults, scars and quirks).
My assistant is with me and we are puzzling. She seems ok with my faults……. except one……. a late feed! That will never be acceptable!
Today was the best day! I cannot begin to explain what a relief it is to know that chemo is behind me. No matter what happens next, I am through the worst of it.
The day started with our ritual giggle about the weird hat in the waiting room. I think I like this style the best 🤣 Without fail we laugh until we cry. I will miss this part of chemotherapy!
Crazy – no name for this style
From there we headed to the dreaded weighing station (I won’t miss that) and then into my treatment room. My communications whiteboard greeted me with the message below, it put a smile on my face right away. The chemo nurses are so lovely and empathetic, they always know what to do, say or write.
Communications board
The treatment itself went well and the kids turned up just in time for the bell ringing ceremony. They insisted on being there and it was lovely to share the celebration with them (most of you will have seen the video on Facebook). What a moment it was, the camera didn’t catch the tears in my eyes.
From there, we headed to The Parade Hotel for a celebration lunch. All smiles and one of the few times I’ve seen Charlie not finish a meal!
Celebration lunch
It’s been such a journey, but the kindness and support I have received has been unbelievable and I feel very lucky to be a part of such a great community and to have wonderful family and friends. Nikki has been my rock through chemo and I love her to bits for being there at the shitty times.
So now I rest and then in three weeks I find out what’s next. The journey is not over but I am confident the worst part is. We await the genetic test results and I already know hormone blockers are on the horizon. More side effects to negotiate, but that’s ok if it saves my life.
Thank you to every one of you for following my journey and providing support. You don’t know how much strength it gives me.
Just a short update to let you all know I am on the up again. Today is day 12 of a much tougher cycle. I have turned a corner and had a lovely walk on the jetty this morning.
Some new and weird side effects: red blotches on my cheeks (no need for blush), red dots and funny feelings in my hands, a twitching eyelid and almost zero taste.
Cheek blotch
However, thank goodness for small mercies, I’ve discovered if it starts with the letter C, I might be able to taste it. So far I can taste coffee, cheese, carrot, coke and ………. chocolate!!!!
Everything is going to be alright!
Oh and Andy had to cut my hair again this morning, it’s been growing!
I feel like a beached whale. I’m tired, I’m fat and I can’t be bothered doing anything remotely close to exercise. No walks and no swims. The bloating and nausea is worse this time. The fatigue unrelenting.
Today I managed to drag myself out of the house for the first time in 3 days. The foreshore was a buzz with ANZAC activity. Although I felt too exhausted to do much but sit on a bench with a cup of tea, it was nice just to be there amongst families enjoying a day off and remembering our soldiers.
ANZAC day Busselton Foreshore
Each cycle is getting harder. The toy soldiers inside me wreak their havoc on a body already feeling depleted. It’s hard not to feel down about it. As a busy, active person it feels so wrong to just roll with the punches. I want to fight and punch back!
I’m so glad I’ve had a bit of work to be getting on with over the last couple of days. It would be too easy to wallow without it. Having a reason to get out of bed makes the day so much easier.
Tomorrow I have a special reason to get up and get going, it is a big day in our family. Our beautiful boy is turning 18! An adult! This afternoon I am conserving my energy for tomorrow’s celebration lunch. He has challenged us over the years, but I am so proud of the man he is growing into. He has shown resilience and confidence in a difficult year at home and maintained his caring and empathetic nature throughout. I look forward to seeing where life takes him. We love you 80 Buzz.
I also look forward to seeing where life takes me after this hiccup in the road! It has to change a person in so many ways. You can no longer take your health for granted. You should no longer push yourself to the limit.
Like I’ve mentioned before, one of the first things that ran through my mind when I was diagnosed was what I might miss out on this year. I became determined to miss the least amount possible. Cancer would not stop The Travel Bee!
The annual Augusta trip was carefully considered and decided it would be doable with a few minor adjustments. We headed down on Good Friday and with the help of amazing friends, our camp was set up in no time. A lovely birthday dinner with friends at the Colourpatch made our day.
Camp Bee 2025
Inclement weather didn’t stop us with around 11mm falling on our first night. We were cosy in the camper trailer and only had minor leaks. Saturday it rained on and off but between showers we managed to get in; a trip to Margaret River for pre chemo blood tests, a walk to the marina, wine tasting and a 600m swim at Flinders Bay. Not bad.
I was a little bit worried about looking like a chemo patient in the camping ground, but one upside of cold, wet weather was half the camping ground were in beanies so I blended in nicely!
Camping Beanie
Sunday the sun came out to play and we enjoyed; a few quiet strolls, a visit from Mum, Dad, my sister and niece, Ice cream and a night out at the pub with friends. At the risk of standing out, I decided to jazz things up a bit for the dinners out, choosing more stylish headwear. I’ve even mastered how to do my wraps with no mirror!
Camp Bee this year expanded to two sites with Charlie and his mates parking up next door, with roof top tents and swags. It was so nice to see our tradition continued and shared with friends and girlfriends. I just love that he still wants to come and we plan to continue booking more sites as the family grows. In the 13 years we have been coming, we have evolved through bikes, scooters and skateboards to P plates in cars and utes. Love the changes, and gosh it’s so much easier now!
Today is pack up day and we are taking our time. The weather is glorious, we have squeezed in another walk and a 700m swim between packing. Lunch is done and we are nearly ready for the final pack up push and guess what……..
The pre chemo steroids have worked their magic, my muscles 💪 are flexing and I’ll have it done in a flash!!!
Round 3 chemo tomorrow, then I’ll be more than half way 💪 💪💪🎉🎉🎉
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.
Matted and patchy
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.
The result
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.
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.
Yesterday afternoon
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.
Ahsoka (Star wars) look
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 🎉
I got in the car today and the song that came on Spotify was ‘Best day of my life’ by American Authors. I had the biggest smile on my face because I knew it was going to be true….. I was heading to the lagoon!!
The last swim I had was the 7th of January and mentally it has taken its toll. The water has always been where I clear my head and process life.
Boredom set in on Friday last week. For months I had been coping, gently pottering around getting little jobs done and making macrame. But suddenly….. it wasn’t enough and I was beginning to struggle with stillness.
To go from a busy (probably over committed) life, to days that have no structure or purpose, is hard. Friends and family point out, my ‘purpose’ should be to heal and recover but my mind says……surely I can multi-task?!!
So, for days I was struggling internally when it suddenly occurred to me…….. it was time to get back in the water. With the surgery wounds healed and heading into week 2 of treatment when symptoms are starting to subside, I felt strong enough and I knew that even if I just bobbed around, the salt water would soothe me.
My beautiful lagoon
I arranged to meet my lagoon buddy and we just did it! It was a glorious autumn morning, slightly crisp but sunny. Surf was good and the carpark was packed. The lagoon itself a turquoise haven, had an interesting current running and swell spilling in.
My anticipation and excitement was palpable. My friend kept me grounded and reminded me to take things very slowly. As we waded into the water, I could feel the tension in my body melting. Diving forward and submerging my head, I was back in my other world of fish, weed, rocks and salt.
My arms started moving automatically and I was swimming. Things felt a little bit odd and there was a tightness in my pectoral muscles stopping me from stretching to my full reach, but that didn’t matter. I made it out to the rock against the swell and I knew I was doing okay.
I managed 700m which I was quite pleased with. It was slow and my legs were like jelly but I was in the water. The further I swam, the more my muscles loosened but in the end, fatigue got the better of me. I lay on my back and floated around gazing at the sky.
Tonight I feel so much better, everything feels a little bit clearer and I am more content with where I find myself. I need to accept that it takes to time heal and enduring boredom is part of the process.
And yes….. today was one of the best days of my life. Hitting the water was like coming home.
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.
The BooBee Journey 