Personal cancer story
It's difficult to know where to start.
I wanted to share my story to show that it is possible to get through a cancer diagnosis if you have little support and have a lot of other stuff going on.
I am a mature-aged single mum and full-time carer for my three-and-a-half-year-old daughter who has Down syndrome and is currently non-verbal and has a global development delay. On top of that, we left a family violence situation two years ago and have been involved in protective orders, child support and family law court since, not to mention having to move house three times.
Needless to say, when I found out that I had cancer, my first thought was, ‘I don't have time for that!’
I found the lump in my left breast while I was in the shower in August 2015. We were about to move house, Amelia (my daughter) was sick and my head was so full of legal stuff that I actually managed to forget.
Because of Amelia's special needs, she has a very tight routine. Therefore, it wasn't until six weeks later, when things had settled down a little, that I found time to make a doctor's appointment around her schedule. I was exhausted and had lost 18 kgs but thought that was all due to stress. My doctor recommended that we do whole heap of tests while I was there – blood tests, Pap smear, breast check – and that's when she found the lump.
The following day I had a mammogram and ultrasound and was told that I'd get the results in a couple of days. However, only a few hours later, my doctor called me from home and told me that I needed to see her urgently in her morning tea break the next day and that she'd already booked me in to see a breast surgeon. The following day I received two calls from the breast surgeon saying that I also needed to see him that day in his lunch break. He informed me that he'd already put me on the list for surgery, even though he hadn't seen me yet.
I wasn't scared, afraid, shocked or worried. I was just overwhelmed – how was I going to fit this into my already complicated life? Going to the doctor two days in a row had been difficult enough with Amelia's routine, how were we going to cope with surgery? It didn't occur to me that it could be cancer, I just thought it was a lump that they would take out.
When I found out that I had cancer, my first thought was, 'I don't have time for that!'"
After a biopsy with the surgeon, I went back just two days later for the results. By now I was thinking that it wasn't looking good. When I got there, I asked him if he would mind if I recorded the consultation on my phone. I had to go to the appointment on my own as I'd asked my friend to mind Amelia, which was more important than her coming with me. Recording the consultation enabled me to relax a little, knowing that I would be able to listen back to it later. I asked him whether the lump was malignant. He said yes. So I supposed surgery would be in six weeks? He replied: "No, two weeks". This was going to completely clash with my court hearings, but he said we couldn't put surgery off.
I couldn't let my former partner (or his lawyers) know about my diagnosis in case they used it against me. So I had to proceed as normal, make all of my legal appointments and not let it show. This added a whole extra dimension of pressure on me.
I went to family law court on Tuesday, had a PET scan on Wednesday and surgery on Thursday. I was an absolute zombie that week and have no idea how I got through it. By the time I made it to Thursday, honestly I was just looking forward to a rest – surgery was going to be my respite. It felt nice to hand over the control to the doctors, surgeons and the universe for once and get some sleep.
I was very unwell and sore after surgery, but I did come out the same day. I'd had a lumpectomy and sentinel node biopsy. I made sure that Amelia's routine wasn't altered in any way, so organised friends to look after her and was also able to access special childcare benefits for in-home nanny assistance, which was a saviour for me.
As a carer I was confronted with the fact that I was continually putting my daughter's needs above my own – focusing on her health and safety, rather than mine. Because of her special needs, she had no understanding of what was going on, so she was confused why I was lying down a lot and why we had extra people in the house all the time.
I went back to my surgeon a week after to get the results and was told that they had got clear margins. The cancer had become grade 3 – it was grade 2 at the biopsy stage and it was decided that I needed chemotherapy as a precaution because it had become aggressive and I was considered young (which was nice to hear at 48).
I was scheduled for four cycles of chemotherapy and had the first one in November, which seemed to go okay. In one week I went to chemo, lead a forum in Parliament about children and family violence and then went to a Wiggles concert – it just shows how eclectic life can be and that it doesn't necessarily stop for cancer.
I was hoping that I wouldn't lose my hair but it started falling out quite a lot every time I touched it and in the shower. When I was walking down the street one windy day and saw it blowing off behind me in a shop window reflection, I knew that I would have to shave it.
I bought some joke wigs for Amelia to get her used to the idea and grew quite attached to the pink one. After I shaved my hair, I went out most of the time with my pink wig and sometimes Amelia wore one too just to be like mummy.
After my second chemotherapy appointment I felt really unwell. A couple of days after treatment, I took Amelia to her swimming lesson and actually got in the water – this was probably not a good idea. The day after that I got a really sore throat and called the breast care nurse who told me to see a doctor. However, that night I was in too much pain and too ill to even call an ambulance or reach for pain-killers. While I was writhing in pain I was thinking, ‘I can't go to the hospital because who will look after Amelia?’ Even though it felt as though all of my bones were breaking and I was in agony, I just had to wait for the nanny to arrive the next morning.
The following day Amelia had an appointment so I got myself out of bed and dressed but I kept falling over. I went to the hospital for some antibiotics for my throat and while I was there they did some blood tests. I'd asked a friend to look after Amelia just in case they wanted to keep me overnight – I had no idea I'd be in hospital for two and a half weeks.
My neutrophils were dangerously low and I was put on an IV drip and in isolation 24/7. They noticed that I kept falling over and discovered that I had proximal myopathy and peripheral neuropathy in my legs, which basically means that I lost the use of my legs. I was told that this is a very unusual reaction to chemotherapy.
Because it was over the Christmas/New Year break, there was skeleton staff in the hospital and no continuity of care. I think I saw about 30 different doctors who all had their own opinions, told me how worried they were and all had different suggestions. It was really stressful to not have a consistent voice and I felt as though no-one knew what was going on. They told me that the use of my legs ‘might’ return and I simply said that wasn't good enough. They shouldn't underestimate my tenacity. I was determined to get better and kept pushing myself through every rehab session.
After a lot of back and forth between the different doctors, I was the one who made the decision to have the third chemotherapy. I went back to my original oncologist for some continuity and asked her to change the type of chemo and reduce the dose. She agreed that I could stop chemo after the third treatment as my body had been too badly affected, but she wanted me to have radiotherapy after a short break.
I waited until more of the legal appointments were out of the way before starting radiotherapy – I was organising my cancer treatment around my other commitments. For me, treating my cancer wasn't my top priority as I had too much riding on these court cases: my daughter's safety and security.
I didn't have any problems with the radiotherapy and am now on tamoxifen, which I am tolerating okay.
The most important message for me is: don't be afraid to reach out for help."
Originally from the UK, I found that a lot of strangers appeared in my life around this time, which was incredible. My daughter goes to an early education program at the special school and I was overwhelmed by the help from the other mums as well as the teachers. I also became really good friends with the local pharmacist after she saw me break down in the store. She gave me her phone number, came to visit me in hospital and has been a continuing support. A neighbour saw me in the street one day with my pink wig on and came over to have a chat. Another neighbour saw me practising walking with crutches and offered help. A friend would text me every day and say "I'm at the shops, what do you need me to pick up?" I would come home to groceries on my doorstep or someone helping in my garden. It was interesting how people just appeared.
What I found is that all I had to do was speak up and identify what my needs were. Everytime I asked, people were only too happy to help. I learnt that it is just as easy to say "yes, thank you" as it is to say "no, I'm alright." While I think a lot of us fear judgement and rejection, it's okay to be vulnerable and accept help.
I'm still limited with the use of my legs and tire easily. Now that I've finished active treatment and the legal stuff is sorted, the dust is starting to settle and I am finally able to catch my breath. While my ex did find out about my breast cancer, I was awarded full sole custody of Amelia.
Everyone will have something else going on in their life when they are diagnosed with cancer – there will be people without support, single mums, people in family violence, people who have children with special needs, legal issues, financial strain and so many other things – but I want people to know that while it's incredibly hard, it is doable.
The most important message for me is: don't be afraid to reach out for help. Link up with a social worker, research what benefits you're entitled to, and make a wish list of things you need help with and tell people! But spread it out so you're not relying on the same few people to do everything.
I also want to highlight to parents and carers that it's so important to stay on top of your own health and get yourself checked – make your health the top priority. Furthermore, from a family violence perspective, I want to say, “don't let anything stop you from leaving a toxic situation, even cancer. There are support services out there and nothing is worth staying in that relationship for.”
Read more stories about people's personal experiences with cancer