cold cap therapy – The BooBee Journey

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 🎉

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.