Chemo Diary - Side Effects

As I sat in my oncologist’s office after just having been told I needed chemotherapy, all I could think of was: how bad will the side effects be? And, what impact will this have on my family?

Until now, my only experience with cancer treatment has been Hollywood; i.e. what I have seen in the movies, which has pretty much been people with their head in a toilet. So my first endeavour was to find out how the chemo treatment would affect me.

I found that the oncologist’s booklets and internet were helpful listing general side effects that may occur for women who were treated with my particular chemotherapy drugs. (FYI, not all chemotherapy drugs are the same; even chemo drugs for breast cancer may differ from person-to-person, depending on type of breast cancer a person has). My particular chemotherapy drugs are TCH which stands for Taxotere, Carboplatin and Herceptin. These drugs kill off any fast dividing cells in a person’s body: both cancerous cells and any fast dividing healthy cells, such as hair cells and white blood cells.

My chemotherapy drugs are administered intravenously every third Monday. I find that Monday through to Wednesday of that first week, I don’t feel so bad. I am juiced up on steroids and anti-nausea tablets for these days so I feel a bit ‘wired’, I have trouble sleeping and feel hungry. It is from Wednesday evening of the first week that my side effects really take hold and last for about 1.5 weeks. After that, my white blood cell count builds up again and I feel more like my normal self.

Below are the physical side effects I have personally suffered:

Hair Loss

Chemotherapy drugs work by killing off any fast dividing cells in your body: both fast dividing healthy and cancer cells. Since hair cells are fast dividing, out comes your hair. My pubic hair began falling out two weeks after my first chemo session and fell out quickly, over a week or so (bonus: no more bikini waxes). The hair on my head began falling out a few days later. It came out more slowly and is not completely gone, but you can clearly see my scalp through the hair I have left. Funnily, I haven’t lost any other body hair and my eyebrows and eyelashes are still intact.

Nausea

If you have ever had morning sickness or a hang-over, you may be familiar with the all-consuming, terrible feeling of nausea. I liken it to a dark veil of sick draped over and wrapped around me that I can’t shrug off. It is worse in the morning: I wake feeling like death and dry-retching until I put some food in my belly and take an anti-nausea pill. Zofran wafers are great; they dissolve on my tongue (no need to worry about keeping down a tablet) and the relief is almost instantaneous. However, they are pretty expensive at about $50 for four wafers.

I find that the nausea worsens every couple of hours when my stomach is empty. If I have something to eat, it stops my stomach from churning and gives me a bit of relief until the next wave of nausea comes.

Thrush in my mouth

Within about two days after my chemo day, a thick, white blanket of thrush begins growing down my throat and on my tongue. Oral thrush feels just gross and makes eating and swallowing painful. At first, I didn’t realise it was thrush - never had it before – but once I figured it out, I purchased some Daktarin and Nilstat to kill it off, which did the trick.

After my second round of chemo, the thrush was back with much more ferocity and seemed to be dining on the Nilstat and spreading. So I went back to the chemist and bought more Daktarin: still not much of a change. My fabulous chemo nurse, Amy, suggested a prescription lozenge would help. This did the trick. Within a day, my thrush was gone! What a difference it made to my general feeling of wellness to have that foul thrush gone from my mouth and throat. Next round of chemo, I am going to hit that thrush hard with the lozenges before it takes hold (fingers crossed).

Aching bones

Okay, so not only do I look like a 90 year-old lady with my balding head, I have achy ol’ bones too. The aching is generally around my pelvis area and radiates up my spine and down my legs. When it gets too much, I take Panadeine Forte for relief (Nurofan Plus just doesn’t cut it).

Constipation

Yep, on top of everything else that that is going on, the cocktail of drugs I am taking – chemo drugs, steroids, pain killers, anti-nausea pills, mouth creams - clogs me up. Why does it always come back to poo? So prunes have been added to my diet (along with a laxative when it gets really bad)!

Loss of taste

People having chemo often report they get a horrid metallic taste in their mouth. I haven’t found that at all. Instead, for the first two weeks after chemo, most savoury foods taste very bland, sweet foods taste the same, alcohol tastes like kerosene, ice cream is fabulous!

The final week before my next hit of chemo my taste goes back to normal, so I chow down on all my favourite foods and my husband takes me out for some fantastic fine-dining fare! I have learned the importance of living for the moment and taking the time to savour my favourite things!

Sleeplessness

During week one of my chemotherapy cycle I have a lot of trouble sleeping at night. To avoid taking even more medications, I rely on my breathing exercises and meditation to relax and allow my body its healing time.

Fatigue

Okay, so I know that I said sleeplessness was a problem: but the silly contradiction is that fatigue is an even bigger problem during week one and two after chemo. I think I am having a good day and then ‘POW’, fatigue hits and I am floored and have to go to bed. I guess my body is telling me it needs some healing time so I have learned to just go with it when the fatigue hits.

INSIGHT

As I mentioned above, the worst of the side effects last about 1.5 weeks and then they start to improve and I have about a week of feeling like my happy, normal self. This whole process of experiencing physical pain while having my cancer treated has made me relish the time I feel good. I don’t take my wellness for granted…it is a gift! I have also learned to listen to my body and to provide what it needs. If I feel hungry – eat. If I feel tired or sick – rest. Eat foods that give me energy and nourishment: avoid foods that make me feel ill.

I am also learning to love my body for what it is. I love that it has been good to me for 35 years, working away, keeping my spirit alive. Yes, it has succumbed to cancer, but I believe that this whole experience has been a wake-up call to be kinder to myself; my spirit and my physical body. I know at the end of this year-long journey of treating my cancer, I will be dancing again!

Hair, Hair EVERYWHERE

Don’t you just hate it when you find a hair in your food? Or you wash your hair and it clogs up the shower drain and you have to dig it out? Well that is my life right now: hair, hair everywhere!

I wake in the morning with hair all over my pillow; I have a shower, wash my hair and it covers the shower drain and floor; it coats my shoulders and falls down my neck into my clothes. If I spend any amount of time in the kitchen, I have to make sure I wear a cap to minimize the chance of it getting in our food.

I have always had a very thick head of hair; but, at the moment I look about 90 years old and you can clearly see my scalp through the hair I have left. I guess it may be all gone by the end of the week, but who really knows. I have learnt to take each day as it comes.

My husband, Craig, was pretty concerned that it would be too traumatic for me if my hair began falling out while it was still long and blonde and began encouraging me to cut it short before I began to moult. I resisted at first. I don’t like to admit it but my hair was part of my physical identity; it made me feel feminine and pretty. However, the thought of having long strands of hair falling everywhere did play on my mind, so I finally made the decision to get the chop before it began falling out.

*Melissa was too sick from her latest round of chemo to finish this post and asked me, her sister Kate, to continue on her behalf.*

Finding a silver lining

One week after Melissa’s first round of chemotherapy we were having one of our daily ‘deep and meaningfuls’ on the phone. Mel openly spoke about her fears of losing her hair as well as not having the energy and inspiration to engage in her life – the life she had created and loved. She felt her life was going in a direction that she did not choose and did not want.

“I need to find something good and positive from this crappy, stupid situation,” she told me. “I can’t let a year go by and think that all I did this year was to be treated for breast cancer… something good has to come from this.”

With this longing to find a positive from her cancer experience, Mel decided to create an affirmative opportunity from her moulting hair situation by holding a fundraiser for the McGrath Foundation*. She would have a party and shave off her beautiful locks and use the opportunity to raise money for the Foundation.

When Mel shared her idea with her close friends and family, they immediately rallied together to cook, decorate, send invitations and collect donations from local businesses for her big fundraising raffle. We had one busy week to it all together!

The Morning of Big Head Shave

The morning of the fundraiser, Mel and I met with one of her close friends, Brooke, at the Farmers’ Markets to get pink flowers for the fundraiser. As we sat down for a cup of coffee, my beautiful sister, who had been so stoic and jovial ever since she found out about her breast cancer, finally let her guard down. I share this moment with you because it touched me so deeply. It was also a relief to see my big sister give herself permission to not have to ‘hold it together’.

She shared with Brooke and me that her biggest fear was not so much loosing her hair, but showing her emotions while having her head shaved that afternoon (in front of over 100 people who were attending the fundraiser). It was then that I realised how not only Mel, but we as woman hold our emotions together for the sake of other people. What a gift it would be to all those who attended, not to mention healing for my sister, to allow herself to just express whatever she needed to in that moment? Not just the bright and bubbly side of Mel, but the deep, scared, vulnerable and sensitive side too.

That afternoon, over 100 supportive family, friends, and friends of friends descended upon Mel and Craig’s front yard, which was adorned with pink flowers, balloons and bodies. In a show of solidarity, our brother Chris shaved his head, as did Mel’s husband, Craig, and friend, Brett. Local businesses and individuals generously donated 35 prizes which we collated into a mega fundraising raffle.

Mel lost her long, blonde locks with dignity and good humour. At times, Mel started to get a bit teary, but then our

other sister, Rochy, would say something funny that would make her crack-up with a laugh (like telling Mel she looked like ‘Bros’ – the 1980’s boy band). A bouquet of emotions filled the day and best of all, $5600 was raised for the McGrath Foundation*. It was truly a joyous event, poignant on so many levels.

Mel is so grateful for her amazing friends and family and so humbled by their generosity. Thank you to all who contributed to her special day! Remember, it is always possible to create something good from a crappy situation!

The McGrath Foundation

Supporting woman with Breast Cancer through the Breast Care Nurse Initiative and Breast Awareness. To find our more about the McGrath Foundation or to make a donation, visit http://www.mcgrathfoundation.com.au/