hair loss – The BooBee Journey

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!

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.

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 💪 💪💪🎉🎉🎉

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.

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 🎉

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.