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.
**** 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.
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!).
A present from my McGrath nurse
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.
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.
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.
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.
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 🎉
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.
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…
Many people have commented on how strong I have been throughout the ordeal to this point. They ask me how I’m doing it. The answer is quite simple. It’s all about knowledge.
I know this disease. I know how it works, the different types, surgical options, surgical outcomes, other treatment options and recommendations. Through my work, I have literally studied this information to qualify and then seen it over and over.
For this reason, I was able to make quick, clear decisions about what I needed and wanted. I was in the drivers seat. It is the single biggest difference between myself and the average patient in my situation. It is something that you cannot give or recommend or offer to other patients, because it took me 25 years working in the industry in Australia, NZ and the UK to gain it.
What I’m saying is………. only someone with my knowledge could have even attempted to have the strength and clarity I’ve had. I can tell you now, any other cancer diagnosis and it would have been a very different story.
I guess the only thing I could say to others, is to get as much information as you can, then take your time (within reason of course) to make your decision. Having some level of control over your treatment makes a big difference.
For me, there will be other challenges which I will continue to write about. I have experienced several. Writing about them is me processing, dealing with and then moving forward from each one as they arise. I recently discovered how important this process is.
The BooBee Journey 