being a patient – 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 🎉🎉🎉🎉

Sisterhood and celebration

One of the things about breast cancer is sadly there are so many of us that have been through it. 1 in 7 women will be diagnosed in their lifetime. In some way it touches us all.

Right from the start, I wanted my experience to help people. With more knowledge than the average patient, I felt I could. But, I am not alone in my plight to help. It seems a common trait amongst those that have suffered. We are all desperate to make it better for the next person.

On the weekend, I attended the Bigger Boobie Ball at Sabina River in Busselton. The brainchild of Carol and Heather, this event gets bigger and more celebratory each year. Raising money for Breast Cancer Care WA is the main aim, but they have a whole lot of fun doing it and it is an opportunity for everyone to come together and celebrate those that have fought this insidious disease.

I was humbled to be asked to contribute my experience to a video that was played on the evening. I had recorded it several weeks prior. It wasn’t emotional, it was factual and direct. My message was clear. Take control, use the amazing services we have in WA and know your body. It was typical Amber.

What I didn’t expect, were the tears rolling down my face when the video came on (although a close friend had predicted it). I’m not entirely sure what happened, or why I was so emotional but I think it was a moment of….. shit, this really happened to me and all since last year’s ball.

Once I gathered myself, I was able to stand proud. Proud of what I got through this year, proud for sharing it and proud of all of my supporters. Without them, I never would have survived it as well as I have. I rang the bell and celebrated ‘feeling like me again’.

Photo credits to https://www.abbymurrayphotography.com/

One of the things I loved most about the evening was the coming together of breast cancer sisters. The photo below, shows a few of the group we call the ‘Shitty Titty Committee’. We stand together and make sure no one goes through this alone, we ask each other questions, we share experience and head coverings, we find funny in the not funny.

But this picture is my moment…….. each of us has just rung the bell to celebrate our own unique milestone and Heather has asked if there is anyone else present who would also like to ring the bell. We look so happy to see someone we don’t know step forward, courageous and brave, ready to ring the bell. We have no idea who she is or her story, but we know she is one of us. She is part of our sisterhood.

As we like to say in the Shitty Titty Committee…. ‘shittiest club but best members’. The frightening fact that struck everyone as we stood there glammed up and happy, was how young we all were. Maybe the older ladies were at home, maybe the drag queens and music and dancing and food and Boobie golf and silks show was too daunting…….. or maybe this disease is beginning to strike younger…….

Either way…. it sucks (the older ladies would have loved the night).

‘The comeback is greater than the setback’

Early in this journey a friend sent me the above quote. I loved it then and I love it now. It has been on my mind this week as I feel my strength returning and as Amber 2.0 is beginning to emerge.

There are changes I am noticing in the way I am approaching things…..

Things that used to scare me don’t (like helicopter rides).

Things that I found challenging aren’t (like being patient in a waiting room, love my sudoku).

I’m more likely to say what I want, I’ve got nothing to lose (you can always say no!).

I’m getting on and doing it (not just thinking about it).

I am finally starting to feel like me again but with improvements. I’ve got hair (albeit grey). I’ve got life. I’ve got health. I’ve got eyebrows!

The biggest change in my outlook this month has been focusing on exercise, both for my physical and mental health. I have been taking a rehabilitation gym class with a physiotherapist. Each week I surprise myself at how much I have improved and it feels so good.

I am swimming twice a week and for the first time in years I am back in the pool, having favoured the ocean. I forgot how much swimming is like meditation. Rhythm and flow. The black line is my friend.

There is no doubt I am coming back stronger. I won’t be taking life for granted anymore. Life is for living and with spring around the corner, I am looking forward to what is next.

Realisation….. it’s a long haul

**** Before you read this, know that I am okay, I’m just trying to be true to myself and blog the reality of my situation ****

If I’m honest with you all, the last month has been really hard. I’ve started to write about four blogs but can’t seem to get out what I am trying to say. I don’t want it to be a poor me post, rather a post about the general aftermath of breast cancer treatment because I am 100% sure I am not alone in how I am feeling at the moment.

For five months, I was in a situation where I was going from one appointment to another, ticking of each box in the treatment cycle. I just wanted to get it done and know I had done everything I possibly could to kick cancer’s arse. I was strong and I was determined.

Then I finished.

I thought….. “right, time to get back to normal”, but it appears that is not how this works.

Apparently it takes time.

I am impatient. I want hair, I want normality, I want to work and I want to exercise. Every time I slightly overdo things, my body kicks me in the butt. Presently it’s with a chest infection.

There are many things about treatment you wouldn’t have even thought about. Like the fact I am now dealing with medically induced menopause. It sucks, my hot flushes are relentless and my brain some days struggles to function. But, the worst has been a clash in medication.

I haven’t been shy in the past about writing about my mental health struggles, so why start now? 🤣 For 15 years I have been treated for anxiety. For 15 years I have taken the same antidepressant. Just weeks after enduring the most difficult thing I have done in my life, I discovered this drug would reduce the effectiveness of Tamoxifen (the hormone blocker I will need to take for at least the next five years to reduce the chance of recurrence). I had to stop.

It took a month to wean off it and I immediately started an alternative. I have had support along the way with regular GP visits, psychologist appointment and other alternative therapies through Solaris Cancer Care. It has been done in a calculated and researched manner, but it has been hard. I have felt quite down and at times alone.

In true Amber style, I thought keeping as busy as possible would be the best way through, my psychologist even agreed. But my body did not. I got sick, and my defences just couldn’t fight it. I took antibiotics and carried on. Today I write this from bed, where I should have stayed a week ago.

Realisation…… I’m not super woman after all.

This week has made me realise, I still have a long way to go to heal from this ordeal both physically and mentally. I am telling myself everything will be there waiting when I am ready, but I have to stop thinking about when that might be. There is no timeline.

My hair is a good indication of slowly, slowly, I should heed its wisdom. It’s now two shades of grey instead of white so things can still change.

There you go, I still have a smile on my dial!!

A dose of sunshine and warmth is on the cards this week, just what the doctor ordered. Andy and I are off to Darwin on Friday to celebrate our 20th wedding anniversary. He needs this as much as I do, my rock throughout, but he is exhausted too.

Yay, https://thetravelbee.blog/ will get a run. Absolutely no talk of cancer on that channel!

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 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 💪 💪💪🎉🎉🎉