Chemotherapy – The BooBee Journey

Recurrence scare number 1

It has taken me weeks to write about this. I started and stopped twice. I just didn’t know how to put my thoughts into coherent words!

Two weeks ago I had a small surgery. Not surprisingly, it triggered all kinds of emotions. As I lay in the holding bay for theatre, I remembered the fear and the lack of control. The questions…. How big is the cancer? Is it in the lymph nodes? Will I need chemo? Will this kill me? It all came flooding back coupled with the new fear….. has it spread?

As I recover from this surgery, I realise this is my life now. Whilst I have healed from the breast cancer surgery and chemotherapy, the fear will always be there. It is something I have to learn to live with.

A friend from the ‘Sh*tty T*tty Committee’ told me this quote when we met over the weekend.

‘You are never out of the woods but learn to live between the trees’ (or something like that, I may have it slightly wrong!)

It is so pertinent.

Having spent most of this year in treatment mode, I have ticked off each step in my mind; surgery, chemo session 1,2,3,4, hormone blockers, surgeon visits, oncologist visits, and then entered into the rehabilitation phase with my physiotherapist, dietitian, psychologist, massage therapist, hairdresser and many more amazing professionals.

But now I enter the next phase, one I will never escape. I will always be a post breast cancer patient. I know that sounds very dramatic and I have purposely written it down to make myself understand. I had been living this year with the intention of conquering this thing by Christmas. I could put it all to bed and move on.

Whilst some of that is true, I had completely discounted the recurrent fear. Something very hard to overcome. The crazy lead up to Christmas will always remind me of the year I squeezed in the ultrasound appointment right before Christmas only to discover….. I had cancer.

But………

I will always be looking for ways to cast the fear aside. I will always be distracting myself by living my best life, experiencing as much as I can traveling, swimming and exploring new hobbies.

I will dodge those trees with vigour as I learn to live amongst them!

P.S. The results of this latest surgery were benign 🎉🎉🎉🎉

Another milestone – debuting the hair in public!

Another month has gone by and to be honest not much has changed. This healing business is slow and the knock on effects of chemo just keep on giving!

Mentally I’m up and down. There are many days where I feel like myself, only to have a little setback and my mind runs wild with dooms day scenarios. I agonise over why certain things are not improving and try linking it to what I am doing, eating, saying, thinking or feeling. It’s exhausting.

But…… there are positives and I am celebrating the small wins.

Today I went out for coffee with a group of beautiful breast cancer survivors. I felt safe and inspired, so I took my hat off….. in a cafe! I don’t want to hide it anymore, I want to own it……. greys and all.

Winning!

It’s a major step forward and will only be hindered by the horrible weather we are having!! It is too cold to sit beside a soccer pitch in the rain without a beanie, hair or no hair!!

Nearly 3 months since last round of chemo

About six weeks ago I started in the gym with a physiotherapist who specialises in breast cancer rehabilitation. The aim was to get some strength into those muscles of mine that have sat idle for months, but in a careful and safe way. I felt so weak.

For the first time this week, I noticed a real difference when I completed a set of exercises I couldn’t do a fortnight earlier. My strength is returning. I’ll be ready for the ski field by January yet!

Winning.

There are many health issues cropping up that are unexpected, annoying and embarrassing. The only thing I can do is concentrate on celebrating the small wins.

I’m not normal me (I honestly thought I would be by now). I don’t even know what normal means anymore but I am starting to come to terms with the fact I am forever changed.

Cancer free?

How can I feel cancer free when every time I look in the mirror, I see a cancer patient. Chemotherapy is cruel in so many ways but the way it lingers on is so bloody frustrating.

I realised this weekend I am already sick of my hats, and the scarfs are just too complicated some days. The reality is I could be like this for months yet.

Do I get a wig?

Do I order more hats?

Is there a magic hair growing serum?

I just want to be normal again. I know I have to be patient, but it is so hard and frustrating and paralysing and grrrrrr

Don’t worry I’m okay, I just needed a rant and….. I’ve ordered more hats.

I’m a survivor!

Today marks a very important day…………..the completion of my last three week cycle of chemotherapy. It is officially over, my bloods are good and it is time to move forward with my life. From this point on, I can consider myself a cancer survivor 🎉🎉

Wow, what a journey it has been…….

From the sick feeling in the pit of my stomach when I put the ultrasound probe on my own breast, to the shock of hearing the actual words “it’s a lobular breast cancer”, to the surgical decisions, to the prospect of chemotherapy, to losing my hair, to feeling completely debilitated, to today, seeing that bright light at the end of the tunnel.

I have taken you all on my journey and I thank each and every one of you for reading. I hope in some small way my words might help others. The support I have received throughout has been amazing and unwavering. I have learned so much about myself and about human nature. I feel privileged and humbled to live and work in such a supportive community.

I will continue to share with you how I am traveling as I am not naive enough to think that the story ends here, but the updates will be less often. I know there will still be challenges and unseen hurdles but I am confident I am now better equipped to deal with…….. shit (for want of a better word!).

You know me…….. always one to do my homework. I plan on reading this and adhering to as much of the advice as I can, because what I want more than anything, is to move forward with a fulfilling and positive life. One that is bigger, better and happier (less stressed) than pre-cancer.

A Bee with Hives

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!!

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!

Treatment 4: The aftermath – my head

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!

Treatment 4: The bell ringing

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!

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.

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!

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.

Treatment 3 update

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.

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!

Treatment 3 aftermath: Chemo belly

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.

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.

It’s time for me to learn some self compassion!

Baldy goes on holiday

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.

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!

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 💪 💪💪🎉🎉🎉