LAINIE’S STORY PART 1: Cancer Diagnosis
Lainie Parker’s Story
I am Lymphoedema Therapist and thought that I knew a thing or two about cancer and chemo. I guess, in broad terms, I do. But my world got tipped on its head last Christmas when I got the dreaded diagnosis of breast cancer. Merry, bloody, Christmas!
Once diagnosed, you enter a whirlwind of medical appointments, scans, procedures, and you have absolutely zero control over any of it. It’s like getting on a roller coaster and you can’t get off until the end of the ride. And it is not only you on the ride, it is your whole family.
When you are told by your oncologist that you will need 24 weeks of chemotherapy and targeted therapy, followed by surgery and then radiotherapy… you think, “Wow! that’s a lot… I’ll just break it down into steps, and do one step at a time”. That helps, but it still sucks.
Your identity changes from being a happy healthy 40-year-old with a young family, to a “cancer victim” or “sick person”. Neither of these things really sit well with me. You have to retell your story a million times. Luckily, I’m typically an over sharer, I guess! With this in mind, I really tried to control the narrative. For example, when telling the kids, I bought a whole heap of hair dye and we turned cancer into a fun activity where the kids all got to dye their hair funky colours.
I started chemo in mid-January 2022.
Chemotherapy is medicine that is usually delivered intravenously, with the aim of killing off the DNA within the cancer cells to stop cell division. The chemotherapy drugs typically attack the fast-replicating cells of the cancer, but inadvertently kill off the normal cells that generally divide rapidly, such as hair cells, digestive tract and bone marrow.
Not all chemo is the same and the side effects differ greatly between chemo drug regimes, but can also differ between people on the same specific drug. In my experience, when you say you are doing chemo, most people automatically think:
Hair loss
Fatigue and vomiting
Weight loss
I guess I can only talk about my personal experience with chemotherapy (AC and Taxol). The type of cancer that I have is called invasive breast carcinoma and was HER2 and oestrogen positive. This means the cancer feeds on the oestrogen that is produced naturally within my body. The HER2 refers to the speed that the cancer cells replicate and, in my case, it made the cancer aggressive and invasive.
The positive thing about my specific diagnosis is that we now have great combinations of chemo and targeted therapies that kill off these types of cancer cells and stop the replication in its tracks.
I started AC (fondly known as the “red devil”) in mid-January. Predictably, it is bright red. For the time that the infusion is running, I had to suck on a lemonade icy pole to prevent mouth ulcers from forming. I know that it is mind over matter, but if someone so much as said the word “lemonade icy pole” my stomach would start to do back flips! I don’t think I will ever be able to eat them again.
I knew that my hair would fall out and that I would be fatigued, but the list of possible side effects was enormous. My hair started falling out on day 16 after the first round of chemo. My amazing strong 6-year-old daughter helped me shave my head, which was my way of helping to empower her during this process.
During chemo: my hair fell out, I was constipated, had reflux, food/coffee/alcohol tasted like crap, I couldn’t sleep more than 2 hours at a time (thanks to the steroids). Those symptoms would typically last up to a week after each round. Then I would have two weeks where I felt vaguely normal (the fatigue remained). I lived that life for 4 rounds, or 12 weeks.
I then went onto weekly Taxol (chemo) and three weekly Hercepton and Prejeta (targeted therapy – HER2 blockers). Most people report that AC is much harder to manage than Taxol, but I felt the opposite. Because the Taxol was administered weekly, I felt like I just never got a break. The AC felt worse at the time, but then I would get a couple of weeks of feeling ‘okay-ish’ in between doses… the Taxol, on the other hand, just drained my life.
One of the main goals of my chemo was to wipe out my ovaries to stop the production of oestrogen. This starves the cancer, but means you enter chemo induced menopause. My menstrual cycle stopped after my 3rd round of chemo (by the start of March). And this brings me to the bit that nobody ever seems to talk about. Chemo induced menopause…which we, MOST DEFINITELY, need to talk about (stay tuned for part two of this blog).
The good news is that I have had my surgery and the pathology is great! The chemo and medical management have done what we needed them to do, and my amazing surgeon, Miss Caroline Baker, has removed the tumours with great margins. My lymph nodes are clear and the prognosis is good. I have to do a course of radiotherapy and continue some targeted therapy and hormone blockers, but am really looking forward to getting my life back.