losing hair – The BooBee Journey

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.

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 🎉