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/

Chemo Diary Entry 2

Tuesday 12th January 2010 – Day 2, day after first chemotherapy session

I woke up this morning looking like I had spent a leisurely day at the beach without sunscreen. Not quite the infamous cooked lobster look I am prone to, but I think I’m going to call my skin colour this morning ‘fairly flushed fairy rose pink’ (sounds a bit like an OPI nail colour)! Besides my skin colour, I noticed a weird taste in my dry mouth.

My first night home from chemo was not uneventful. When I went to bed last night my elbows and shoulders began aching. It took me a while to register it was a chemo side effect I had read about in one of the many information books bestowed upon me by the hospital. Neurofan Plus fixed that though (and led me through to a lovely slumber).

In the wee hours of the morning, though, I woke with a throbbing pain in my upper body. The throbbing kept moving to different points around my torso and it felt like ice was coursing though my veins and organs, but again, only in my torso. My first reaction was to panic. I have never had a sensation like that and I had images of the movie ‘Alien’ flash through my mind. I felt a wave of fear overcome me and I began to writhe around the bed as my panic heightened the throbbing sensation. I took a moment and realised it wasn’t actually that painful, just strange and uncomfortable.

I began the breathing exercises that my fabulous kinesiologist, Kartia, has taught me. I breath in deeply, hold my breath, count to14 or 21 and then expel the air through my mouth. This exercise slows down a person’s breathing, reduces oxygen to their brain and allows the person to slip into an alternate consciousness. It certainly worked for me. After a few minutes I ‘drifted away’ from the throbbing feeling and found peace again. I then began to visualise a white light moving through my body’s organs and veins until I felt totally relaxed and calm, and then drifted back off to sleep.

Doctor Craig Browning, my wonderful husband, has taken it upon himself to ensure that I follow the hospital’s instructions to a ‘T’ regarding post chemo care. He bounded out of bed just after 8 o’clock this morning to make me fresh watermelon, ginger, orange and mango juice, served me up my anti-nausea drugs and steroids for the day. Then after I had eaten some wholemeal toast, he prepared a warm bi-carb soda solution for me to wash my mouth out so I don’t get mouth ulcers (another chemo side effect). Talk about dedicated!

The anti-nausea drugs are certainly doing their thing: I haven’t felt nauseous at all during the first 24 hours. The steroids have helped ease my flushed skin and kept any other allergic reactions to the chemo drugs at bay. The steroids have kept me awake and enhanced my appetite somewhat, which I’m not so happy about - I want to be satiated already! At the moment I am eating on the hour, but limiting my food intake to watermelon, cherries and a low-fat cannellini bean dip I made spread on wholemeal bread.

A week before I began chemotherapy, I had an information session with a nurse educator who went through the side effects that the chemotherapy drugs could cause my body. I was also given folders and books of information to read: I didn’t actually open those things until the night before my chemo (ignorance is bliss sometimes).

I am not sure what lies ahead for me in the side effect department, but I will post another entry in a week or so with further side effects that I experience!

Chemo Diary Entry

Monday 11th January 2010 – Day 1, day of my first session of chemotherapy
Craig and I arrived at the hospital for my first chemotherapy session at about 9am. I was feeling surprisingly calm; maybe because I have tried not to give this impending day much head space: don’t worry, be happy!

We made our way to the Oncology Unit at Lingard Private Hospital and were greeted by friendly staff who led Craig and me to my little chemo room. I say little because it is only about 2.5m wide by about 5m long with two ‘injection chairs’, a TV, a bathroom and some extra chairs for any guests (though we are only allowed one support person with us at any time).

Another lady was already in one of the injection chairs with her arm in a heating pad waiting for her dose of drugs. I introduced myself to her by asking her, ‘What are you in for?’ Ok, maybe a bit blunt but I thought it was kinda funny – haven’t we all been served some sort of sentence at this place? ‘Sarah’ (not her real name) looked at me blankly so I clarified with, ‘What cancer do you have?’

‘I had breast cancer’, Sarah said.
‘Me too,’ I replied! Another lady of my kind…

Sarah looked about 55 years young and had a full head of hair so I guessed she was either starting her chemo like me or was having some other treatment. When I questioned her again (yes, I can be a busy body at times), she told me that she had finished chemotherapy treatment some time ago but still comes into the hospital every three weeks indefinitely for Herceptin injections.

My lovely chemo nurse Amy came into my little chemo room, introduced herself and explained to Craig and me how my chemo session would run. To start with, I needed another blood test to check my blood count was okay prior to starting the chemotherapy drugs: it was fine. Amy then came in and placed a heating pad on my right hand and arm just to warm up my veins a bit so they are easier to jab with the needle.

When it came to jabbing time, I stated my personal stance on needles to Amy; I hate them immensely and they should be avoided at all costs. Unfortunately, when you are receiving chemotherapy and have big juicy veins, as I do, it’s tough sh*t – you’re getting a needle. So, I asked very politely if she could use a little needle and not one of those big horse needles I was jabbed with when I had to have my pre-treatment heart-scan. That baby brought me to tears. So Miss Amy was very kind and offered to use a children’s needle, which I cordially agreed to (like I had a choice)!

Funnily, Amy offered me the option of having my finger nails and toes dipped in ice buckets while I received my first chemo drug ‘Taxotere’. Apparently, it can cause a side effect whereby your finger and toe nails can lift and get infections under them. I am all for minimising any future side effects and pain, so into the ice they went for about two hours while the Taxotere dripped into my veins. To distract myself from the coldness, I watched ‘The Love Guru’ on DVD; nothing like a comedy as a great distraction from the numbing cold. Mike Myers is a genius I tell you!

The Taxotere drug was administered to me slowly at first so the nursing staff could watch for any allergic reactions that I may have. I didn’t have any reaction so it was full steam ahead for administering this drug. My veins were then flushed out before starting the next chemo drug on the menu, Carboplatin. As this drug started to drip through slowly, I began to panic. It felt as thought my heart was pounding, my chest felt tight and I started to cough a bit. To be on the safe side, I was given Phenergan and Hydrocortisol intravenously, which made me drift off to sleep. So I spent the rest of the afternoon in a lovely slumber, waking only briefly when my IV’s were changed to flush out my veins and then to give me my third drug, Herceptin.

By the time my chemo session had ended and my veins were flushed out for the last time, it was about 5.15pm – a very long day at the hospital.

I feel really blessed that the nursing staff that looked after me – Amy, Ann and Bev – were so attentive, warm and informative. They took the time to explain how I needed to look after myself when I got home to minimise any side effects over the next few days and clarified how the anti-nausea drugs and steroids I need to take over the next few days may affect me, such as the steroids causing sleeplessness.

All-in-all, my first chemotherapy session was not as traumatic as I may have initially thought, again, I think, due to the wonderful staff and having Craig with me throughout the day for moral support (poor love was bored out of his brain though)!