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Parenting through cancer

Parenting through cancer

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Real life experiences 

 

Pamela’s story – parenting through cancer 

they diagnosed me with breast cancer in 2021. My mother had also survived cancer years before and as soon as I felt the lump, I knew what it was. The doctors also found a lump in my armpit and just after my 38th birthday, they diagnosed me with stage 3 triple negative breast cancer.  

 

Breaking the news to my daughter

My daughter Matilda was just 5 years old and her life changed overnight. We used to have such a busy life. Our weekends were about getting outdoors, going to the playground and having lots of fun. Then when I got diagnosed, everything just stopped. We knew we had to be honest with her about why her life was suddenly so different.  

You hear stories of some kids becoming withdrawn after their parents get sick, but Matilda went the other way. She asked hundreds of questions and she wanted to know everything and try to make sense of what was happening.  

We didn’t dumb down the language to make it easier for her, we just told her how it was. She knows I had breast cancer and that it was triple negative breast cancer and what that means.  

By being honest with her, it means we weren’t walking on eggshells or trying to hide things from her. There were some tough questions. One time I was in hospital during chemotherapy and she asked, ‘Mummy, are you going to die?’ 

The truth was, I didn’t know. I was still waiting on MRI results to find out if the cancer had spread. I said ‘Matilda, to be honest, I don’t know. And I’m as scared as you are. But trust me, mummy is doing her best to stay with you,’. 

That was hard.   

 

Learning how to accept help 

As soon as I was diagnosed, I shared the news through Facebook, with friends and family, with Matilda’s school and with my work. I didn’t think I would do myself any favours but keeping it quiet. I’m a communicator by profession, so I used the skills and platforms I have available to share what I was going through in the hope it would create awareness.  

When you share your story, people want to help. I’m an independent person, but I had to get used to accepting help because you can’t do it on your own.  

We were living in Cairns with no family support. However, I was lucky that even during the pandemic, my mum could get a special exemption to fly from Chile to Australia to be with us. She stayed for 6 months, which was an incredible blessing.  

We also had lots of other help; from friends in Cairns to people supporting us from afar. My daughter’s friends’ parents would take Matilda on the days when I was too sick to care for her or when my husband had to care for me. It meant she still had a fun day, even in those terrible months during my chemotherapy. Many friends delivered meals or sent dinner vouchers if they didn’t live in Cairns.  

My workplace was amazing too. I worked during my treatment because it stopped me from sitting on the couch and worrying. I decided that although cancer was taking everything from me, it couldn’t take my brain, so I worked to keep a sense of normality. But on those off days when I couldn’t get out of bed, my colleagues were more than happy to pick up the slack and support me.  

When you have a baby, people keep telling you it takes a village to raise a child. The spirit is very similar to cancer – it takes a village to get through cancer. 

 

Keeping Matilda at our centre

The most challenging thing was protecting Matilda and not letting cancer steal her childhood. It’s so easy to get it wrong because you don’t really know. Parenting is hard. You never know if you’re doing it right most of the time, let alone when you’re going through cancer.  

I had a terrible reaction to radiotherapy and was so sick that I had to be taken to the hospital in an ambulance because I was unresponsive. Matilda was fine when she saw later that I was ok but I wish she hadn’t seen that. It was so scary but I couldn’t control it.  

We’ve always been focused on making sure Matilda has a high level of emotional intelligence. She knows how to talk about her feelings and if things aren’t going right, she feels comfortable talking to us.  

One day she came to me and said ‘Mummy, I think cancer is disrespectful.’ ‘That’s an amazing way to put it,’ I told her. 

She talked about how cancer is disrespectful to me, her dad, our friends, it’s disrespectful to everyone. We let her talk for about 10 minutes then afterwards we asked her, ‘does that feel better?’ ‘Yes!’ she said.  

I think it’s important to let kids express themselves and allow them to have emotional moments. We all need that to process big feelings.  

It was important that we had open communication with Matilda’s school and that they told us if they saw any red flags. When she saw I wasn’t well at home, she would make herself very little and try to not make any noise. We knew that if there were any problems, they would show up at school.  

We told her teachers that we wanted them to be our eyes. They had to tell us if they ever saw any behavioural issues so we could address them straight away. Yes, I am going through cancer treatment, but Matilda is our number one priority.  

 

Helping her be a part of my recovery

By being honest with Matilda, she could then be a part of my recovery. We told her that cancer hates hugs and kisses, so every time she kisses me, it’s helping to fight cancer. She took her job seriously and every time I was really sick, she would just sit next to me and hug me.  

We bought this small one seater couch and called it our healing couch. There was just enough room for the two of us to sit on it. We would watch movies together or do colouring in because they were the only things I could still do when I was feeling sick.  

We found a way to make beautiful memories in a very unfortunate situation.

 

Building our future together

I finished active treatment in March 2022 and we recently moved to Adelaide to be closer to my husband’s family. Matilda is settling in really well, but she still talks about cancer and she still gets scared some times.  

She’s now a stronger, more resilient girl. Who knows what experience will impact her life in the future? She might decide to be the next researcher who cures cancer. Or not. Who knows? 

At the end of the day, I know that she now sees life differently. She appreciates every day because she knows that life is fragile. She makes the most of each second. What an amazing thing to learn so young.  

It took me a cancer diagnosis to learn that life is all about the little things and I was 38.  

She learned that at 5 years old. How amazing.  

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Glossary of Key Terms

These are explanations of terms that medical professionals and others may use when discussing your TNBC.

Advanced breast cancer

A commonly used term for secondary, metastatic or stage 4 breast cancer

Adjuvant therapy/treatment

Treatment (e.g. chemotherapy) given after surgery.

Alopecia

Hair loss

Areola

The area around the nipple

Axillary dissection/clearance

The removal of some or all of the lymph nodes from the armpit to see if the breast cancer has spread beyond the breast.

Benign

Not cancerous

Biopsy

The removal of cells or tissue from the body to see if they are cancer cells

BRCA1 and BRCA2

Women with a fault, or mutation, in one of these genes have a higher than normal chance of developing breast or ovarian cancer

Breast conserving surgery

Surgery to remove breast cancer and a small area of healthy tissue around the cancer. Also known as lumpectomy.

Chemotherapy

Treatment for cancer using drugs

Clinical trials

Studies involving patients to see if a new treatment is better than an existing one

Complementary medicines

Complementary medicines are products that are used in addition to conventional medical treatments (e.g. chemotherapy and hormone therapies). Complementary medicines include vitamin and mineral supplements, such as fish oil capsules or vitamin D tablets, and herbal medicines.

Complementary therapies

Complementary therapies are practices that are used in addition to conventional medical treatments (e.g. chemotherapy and hormone therapies).Some examples of complementary therapies often used by women with breast cancer include massage, yoga, acupuncture and reflexology.

Double mastectomy

Removal of both breasts during breast cancer surgery

Ductal Carcinoma In Situ (DCIS)

Non-invasive breast cancer confined to the ducts of the breast

Early breast cancer

Breast cancer that has not spread beyond the breast or lymph nodes under the arm

Early menopause

Menopause occurring in women under 45 years of age. Early menopause is often a side effect of some common treatments for breast cancer.

Lymph nodes

Glands in the armpit and other parts of the body that filter and drain lymph fluid, trapping bacteria, cancer cells and any other particles that could be harmful to the body

Lymphoedema

A condition that sometimes develops when lymph nodes have been removed during breast cancer surgery and the lymph fluid no longer drains freely, causing swelling in the arm, hand or breast

Lumpectomy

Another name for breast conserving surgery

Mastectomy

The removal of the whole breast during breast cancer surgery

Metastatic breast cancer

Another term for secondary, advanced, or stage 4 breast cancer

Multidisciplinary Team

Often abbreviated to MDT. A team of health professionals who work together to manage a patient’s treatment and care

Neoadjuvant chemotherapy

Chemotherapy treatment given before breast cancer surgery (sometimes used to reduce the size of the tumour to make it easier for the surgeon to operate)

Oestrogen

A type of female hormone

Partial mastectomy

Another term for breast conserving surgery

PBS (Pharmaceutical Benefits Scheme)

A scheme funded by the Australian Government to subsidise the cost of certain drugs for eligible consumers

Progesterone

A type of female hormone

Radiotherapy

Treatment for cancer using X-rays that target a particular area of the body

Secondary breast cancer

Breast cancer that has spread from the breast to other, more distant parts of the body, most commonly the bones, lungs, liver and sometimes the brain. Also known as advanced, metastatic, or stage 4 breast cancer.

Sentinel node biopsy

identification and removal of the first lymph node to which the breast cancer may have spread for testing by a pathologist

Seroma

Fluid that collects in or around a scar after surgery

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