Sing it with me! "All we need is radio gaga, radio gu gu, radio gaga!" Not radiation!
The thought of my one breast being nuked in the microwave wasn't the most appealing but honestly, it wasn't so bad.
So what to expect from radiation? Before my treatment began I had to deflate my right breast expander, my one breast was noticeably bigger than the other but I didn't care. When I first saw the machinery in the radiation den in the basement of the hospital, it looked like something out of a Sci-Fi movie. You go in for a scan the week before to map out the area they are going to zap, then from Mon- Friday you lie on a bed, well more like a metal plank with a neck rest, a bit of support for your lower back and feet, with your arms supported above your head. X marks the spot well actually a cross (+). Thank goodness it isn't summer or I would be looking like a reborn Christian with my 3 beautiful crosses tattooed on me in permanent marker for the last 5 weeks. I can't believe it's been 5 weeks already, the day I started I thought "Ah man what a mission this is going to be" but the weeks flew by and the actual treatment is super quick, you are zapped for 2 minutes if that, quick sticks! My last radiation appointment is on Monday, due to missing a day because of a public holiday.
The side effects weren't bad for me at all. I had no discolouration on my skin, I only used lukewarm water on the right side where I was having treatment and washing with fragrance-free glycerine soap using my hands, you don't want any friction or fragrances on that area as the skin is sensitive. On the rest of my body, I could wash as normal. I can't wait to have a hot bath again, but I have to wait for 10 days after treatment.
After every shower, I would get out, pat myself dry and dust the affected breast and surrounding area with Maizena (forget the gels and creams, Maizena is the good old fashioned stuff and helps keep the area dry and the skin in good shape). Hopefully, you have some white T-shirts cause I was like a sugary powdered doughnut sprinkled with maizena all over the place.
I also applied it before I went to bed at night, they say you should apply it a minimum of twice per day. My skin hasn't even reacted.
The only real side effect I've had is that the right affected area is slightly more sensitive and I feel tired, especially the last 2 weeks. Taxol made me tired as the anti-allergy meds in it knock you out and my mom would have to come to drive me home after treatment but with radiation, it's a gradual tiredness that sneaks up on you, the last 2 weeks I've been exhausted, twice last week I came home and fell asleep after treatment for 4 hours and only managed to get back to sleep in the early hours of the morning but I had well over 8 hours of beauty sleep. I'm telling you this because you don't want to engage with me when I haven't had enough sleep and I'm tired, I'm a complete misery and quite frankly, no good for human consumption.
I can't believe that on Monday I will be finished all my treatments.
I remember the first day of chemo, imagining the end of of this journey, it felt like a milestone that was so out of reach and now I'm at the finish line and it felt like it went by so quickly like it was all a blur.
I'm so glad I documented my experience and thoughts here because it is quite incredible how our brain protects us from feeling the pain of yesterday, especially when we are in survival mode, "right, what's next?" We carry on pushing forward, not looking back. The weirdest thing is you get used to this new normal, having expanders in place of where your breasts once were, fondly looking at your bald head in the mirror, and thanking God for microblading and false eyelashes!
HAIR!!!!
Speaking of little hairs my hair has started to grow back! It started slowly as fluff which I shaved off for a photoshoot as it looked uneven. I was quite envious of my 2 chemo buddies whose hair was growing back at a rapid rate. Liezel didn't even lose her eyebrows and her head was covered with hair by the end of her Taxol treatment. Never in a million years did I think I would be so excited to see a millimetre of hair sprouting out.
I told myself patience is a virtue but I was going to find all the lotions and oils I could to assist my growing phase.
Truthfully, I think I was so used to my bald head that I was afraid of what I would look like with my new short hair that was growing in patches.
Suddenly the memory of my beautiful long dark hair danced in front of me and I felt sad, it deserved a moment of grief, of mourning. How did I not know how beautiful I was? It makes me sad to think how much energy I wasted being so hard on myself.
My mother sensed a tinge of sadness in my voice that evening, she intuitively knew what it was about without me saying a word.
The next day she called me to tell me she found a beautiful human hair wig at an African hair shop in town. I rushed there just before the shop was about to close where I was surrounded by robust Congolese women speaking French, masked and all. The wig was soft, shiny and beautiful and felt like real hair gliding through my fingertips, not like the synthetic ones that tended to get stuck.
I wish I had known about these African hair Shops before I spent 5K on an imported Jon Reneux synthetic one, OK I have to admit, it is more comfortable on the head but with the right wig cap, you can't go wrong (I got my cotton ones from www.compassionatehat.com
Human hair wig prices can start at 10K and a long one this length would usually cost 20K or even more! I am proud to tell you that I bought it for R2100 a proper steal of a deal! Ladies, you got to know where to shop!
I wore it out last weekend for my first COVID breakout appearance at my friends birthday gathering, I loved it! It was so nice to see the old me again, I almost forgot how "Dani with hair" looked.
Now I was determined to get these little spikes growing on my head. I was like a witch at a cauldron mixing up all kinds of magic lotions and potions praying for the gods to give life to my barren scalp.
The first potion was given to me by my chemo nurse Sam, it contains 1 ampule of placenta (I know it sounds so gross doesn't it? not as alluring as coconut oil)
Just like the name suggests it is in fact made up of animal placenta extract but they are a rich source of bioactive components including growth factors and hormones. Placenta: Increases hair follicle growth and decrease hair shedding, it also returns protein to the hair and repairs the hair follicles. This coating also works to smooth the hair cuticle making it appear shiny and also helps alleviate itchy scalp.
The next ingredient is Bergamot essence/oil, an essential oil when
applied to hair, soaks into the scalp and strands. It stimulates the blood flow to the hair follicles to give strength and shine.
Bay Rum: This oil stimulates hair growth and helps alleviate dandruff.
The Recipe
The mixture can be used as a spritz:
1/2 bottle bay rum
1/2 bottle bergamot essence
1 ampule of placenta
spritz on your hair, concentrating on the roots, 2 to 3 times a week
I've been using it every day.
At night I put on JBCO
Jamaican Black Castor Oil.
JBCO Benefits
Jamaican Black Castor Oil works for all hair types. It will moisturize, thicken, strengthen and rapidly increase hair growth. It increases blood flow to the scalp, supplying valuable nutrients to hair follicles. Jamaican Black Castor Oil will also prevent hair breakage, dandruff, eczema and dry, itchy scalp, help with thinning hair, alopecia, bald spots, and will rapidly increase hair growth including eyebrows and eyelashes
This versatile oil carries many varied uses for skin, clearing up acne to even relieving muscle aches and digestion issues.
It amazes me how I never knew about this stuff before!
Mix up a combination of one teaspoon black castor oil, one tablespoon coconut oil or Jojoba Oil and five drops of an essential oil of your choice(optional)
I bought Rosemary as it is also recommended for hair growth however the smell was way too much! I smelt like an oven roast so I would suggest tea tree, lavender or peppermint oil instead)
Scoop the mixture into an empty container or jar.
scoop a small amount out with your fingers and work it into your roots and scalp using circular motions as this will help stimulate the blood flow leading to faster hair growth. If you’re having trouble reaching, you can also ask a friend to assist you with the massaging part.
The thing that's concerning me the most is the fact that the front hairs are not growing as rapidly as the rest on my pretty head, I'm starting to feel like I might look like an old man with a receding hairline. After doing extensive digging on the internet and chatting to my Turkish friend Jenny, I discovered that this is a common concern and they are usually the last to fill in, thank goodness I'm seeing a few more sprouting in that area every day.
I started having terrible stomach pains about a month ago, like severe lower abdominal pains, like menstrual cramps but the thing is I'm not menstruating. My stomach was also distended and swollen, I looked like I was pregnant. Being BRCA2 and at higher risk for getting ovarian cancer, I called my gynaecologist in a panic and went to see him the following day for a full check, pap smear, ultrasound everything was clear. The pain didn't subside so I went for an ultrasound of my abdomen, all was clear.
What the hell could this be? That weekend the pain was so excruciating that I called the Cancer Care emergency hotline at 4 am, I was so close to taking an uber to Christian Barnard Hospital but thankfully I purged and after that, the pain subsided. I booked an appointment with a gastroenterologist and had a colonoscopy and an endoscopy, everything was fine but once I got the blood and biopsy results back they discovered I have an "H Pylori Bacterial infection" and that it was chronic and has probably been there for 3 to 6 months or longer and I just didn't notice it before. Every time I eat my stomach starts hurting sometimes an hour after or 3 hours after and the pain is particularly bad at night. I am also still struggling with vertigo when I lie back, look up and turn on to my side in bed. My body feels fucked, I have a spasm in my neck and shoulders and I'm sure it's from not being able to fully lie on my side because the expanders feel like foreign objects in the way of my body and the bed. I'm hoping once my port and expanders are out my body will start to loosen up and the constant tension I feel will subside. Don't get me wrong I love my chiropractor but it would be quite nice not to have to see him every week.
I'm reminding myself that I'm nearly there, I hope to have my reconstruction surgery in October and hopefully, I'll be all healed and able to sleep normally and enjoy my perky new breasts by December. I wonder if they will feel like foreign objects like the expanders or will I get used to them? I presume I will get used to them in time, just like I have the expanders. I swear, when I'm healed after surgery I am going for a full body massage every week!
Stay tuned for my next post " The Road Less Travelled Part 4: The Big Apple.
<3 Dani
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