Chemotherapy – 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 🎉

Getting back in the water!

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.

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.

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.

My hair!!!

Wild, bushy, fluffy, thick, curly, ginger, beautiful. All words used to describe my hair over the years. So much of my identity in those many…… many strands.

If I lose it, do I lose my identity?

Of course not. As a friend kindly pointed out, I am much more than my hair or my boobs. I am tough, loyal, giving, a team player, a parent, a wife, a daughter, a sister and a friend. All of which I can do with or without hair.

For my husband, he has seen many transitions through my hairstyles, from quite severely short, to mid length, to long and back to mid length. This will just be another phase.

However, my hair ritual has always been very important to me. I have attended the same salon every six weeks, for sixteen years!! It isn’t just about my hair itself, it’s about the routine as my sister pointed out. The chat, the magazines, the cup of tea, the head massage and the connections are just as important as what is being done to my hair.

So today I went for my last full hair experience before chemo. Cut, colour, massage, blow dry and style. Plus the chat, magazine, tea, hugs and pamper. The girls made me feel special and today’s experience made me come to a decision.

I will fight for my hair, but I won’t put myself through hell to save it.

I have been deliberating over whether to try the cold cap offered to some chemo patients. The idea is to take the scalp temperature right down and constrict the blood vessels, reducing the amount of drug reaching the hair follicles. It is exactly what it sounds like, and means enduring an ice cream headache possibly for the duration of treatment (around three hours). Although some say after 15 minutes you go numb. It may or may not work.

So, I’ve had a chop to get good scalp contact and I’ll give it a try. If it doesn’t work or is too unbearable ………… well bald will just be my next phase.

One thing is for sure, hair or not, I can still go to the salon every six weeks for a massage, cuppa and a chat. I’ll be welcomed with open arms and it will help me to feel ‘normal’

Next tick box

I have had three days to process the next step in my journey. I said the other day, I was shell shocked. That wasn’t quite right, I know enough about this stuff to know chemotherapy was always going to be on the cards. It wasn’t a complete surprise or bolt from the blue.

What I actually was, was deeply disappointed (thanks Dad for giving me the right word) and scared. I was disappointed that I was going to have to walk an unknown road, the road on which I have vast knowledge gaps. And what I don’t understand and am not in control of, makes me scared…….

I don’t know how the drugs will make me feel, I don’t know what will happen to my hair, I don’t know how my children will feel with a mother that will outwardly look sick and I don’t know how I’ll cope with looking and feeling sick. I am not good at sitting still.

But then I reminded myself, I have chosen to undertake chemotherapy because it will give me the best chance of never seeing this thing ever again and living a long and fulfilling life. I also reminded myself, there are plenty of people out there (that I know even) that have done this before as well as plenty that can help me negotiate it.

On Wednesday, I started the day by crying on a friend’s shoulder. Then, I got on with it. I read all of the information from my oncologist, I got on the phone and I started calling for help. I spoke to a McGrath nurse I know through work. After her initial surprise, she was straight onto helping to fill my knowledge gaps. She emailed information specific to my questions and referred me onto Breast Cancer Care WA for counselling support.

I made it my mission to understand as much as I could. A close and very special friend visited and insisted she would be my chemo buddy. This was a great comfort and another thing I don’t need to worry or think about. Others sent messages of support and reminders of how strong I am. I read every one and then I got my big girl pants on and started to flex those ‘strong’ muscles.

Thursday was all about my hair. I still haven’t made a decision about what I will do, but I researched cold cap therapy, debriefed with a friend and called my hairdresser. I talked to my children about what they would feel comfortable with, and I started ordering headwear.

So, that is where I am at….. my knowledge is improving and I am working towards just ticking that next box.

Oh ………………. and I am on a macrame mission.

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…