a mother and daughter share their journey with cancer
Being diagnosed with cancer at just 23 came as a big shock to me since I thought I had years ahead of me to achieve my life goals…
My cancer was discovered when my osteopath (who I was seeing for chronic neck, shoulder and back pain) noticed a small lump on my left side of my neck and suggested I get my GP to check it out. I did and he monitored me for a few months, assuming that it was nothing more serious than the flu because of my young age. Eventually, as the lump grew larger, my doctor sent me to get an ultrasound and a blood test but neither was conclusive. He then referred me to a general surgeon to get a thin needle aspiration done. The surgeon took one look at the lump and said he’d rather remove the lymph gland entirely in hospital and biopsy it, which he did a week later on 8 March 2007. I thought that was a bit drastic and was scared as I’d never had major surgery before.
I’ll never forget the day I got my surgical stitches removed and was told I had cancer: it was 13 March 2007. I had convinced myself that the lump was nothing serious as I didn’t feel sick otherwise. It really had not occurred to me that I might have cancer.
As the surgeon removed the stitches, he casually said that the biopsy showed that I had Hodgkin’s Lymphoma. I was numb with shock and totally unprepared for that news.
I immediately burst into tears and was so grateful to have my mum there to comfort me. After the appointment, Mum and I went to the hospital café and while I sat in stunned silence, Mum made the difficult calls to our family. I remember looking around and thinking that the world appeared somehow different, like I was seeing it for the first time. I’d never felt so appreciative of fresh air or the natural beauty all around me. Looking back, I don’t know how Mum held it together to make those phone calls. She showed a level of strength that I’d never seen before, and would continue to be my rock throughout the six months of treatment that followed.
My surgeon had referred me to an oncologist the following week to have more tests done so the disease could be staged. Those days of waiting were so difficult because I kept thinking of worse case scenarios. I even dreamt that I was told I was at such an advanced stage that treatment would be futile, and couldn’t stop thinking about all of the future life events I would miss out on if I died so young.
On 29 March 2007 (the day before my 24th birthday), I was finally given the results of my CT and PET scans and was told I was at stage 2 and that the cancer was restricted to my neck so far. My oncologist prescribed four cycles of ABVD (Adriamycin, Bleomycin, Vincristine and Dacarbazine) chemotherapy followed by five weeks of daily radiation to my neck.
The following day, which was my birthday, Mum took me wig shopping because I wanted to be prepared for when my hair would fall out. I was mostly worried about people in the street seeing me bald, and staring or pointing.
After that I went and got my haircut by my normal hairdresser to match the wig I’d bought. It was really upsetting to see all my long hair get chopped off and I cried in the car on the way home, but I figured it’d make things easier once my hair did fall out with the chemo. I ended up being really lucky and didn’t lose all of my hair, as I had such thick hair to start with. It thinned out a lot from the chemo but I managed to hide it with hats. One of the toughest days was when I’d almost finished radiation therapy and was blow-drying my hair. My mum gently suggested that I look at the back of my hair with a mirror and when I did, I discovered that I was completely bald underneath, where the radiation beams exited my skull. I cried and cried as my mum hugged me, again proving to be my pillar of strength.
The days I went in for chemotherapy were some of the most boring days of my life, sitting in a chair for up to eight hours waiting for the toxic chemicals to enter and then exit my body. The nurses at St Vincent’s Private were simply fantastic, but it was hard always being the youngest person in the room.
As far as chemo side effects went, I had nearly all of them but not usually all at once. I always had nausea for about five days after the chemo until it gradually lessened. I suffered constant insomnia, fatigue, taste changes, a heightened sense of smell, constipation, mouth ulcers, vein pain (from where the chemo goes through), muscle aches and bone pain, low concentration/focus (commonly called ‘chemo brain’), bruising, foot cramps and numbness. I somehow managed not to vomit though which I was so relieved about!
I think the emotional side of cancer was much harder than the physical. I was told early on that the chemotherapy could make me infertile. The realisation that I may not be able to have children of my own someday was probably the most difficult thing to deal with. For someone like me who loves kids, it was devastating news. Being a mother has always felt like my life’s purpose, especially since I have such an amazing relationship with my own mum. To reduce my risk of infertility, I was given monthly ovarian injections of Zoladex. The needles were huge and injections so painful, but I was prepared to do anything it took to ensure I could someday have children.
Getting cancer made me question what I was doing with my life and I realised that if I ended up not being able to have children of my own, I could at least be surrounded by children by becoming a primary school teacher. I completed my Graduate Diploma of Education in 2009, and my parents again supported me, both financially and emotionally throughout that year. I remember feeling awful about burdening my parents, as I’d hoped to have moved into my own house by 25, but cancer unravelled my carefully laid plans.
I ended up choosing not to go into teaching after graduation, after realising what an intensely demanding and stressful job it is, as I was determined to make my health my number one priority. I have decided to reconsider my career after trying to have a family of my own.
Three years after my cancer treatment, when I was 27, my husband (then boyfriend) and I decided to freeze embryos together as there was a risk of me going into early menopause before I even reached 30, due to the chemotherapy. We did this as an insurance policy and luckily we did.
Now seven years on, my greatest fear has sadly come true and my husband and I have been struggling with infertility for over 15 months. My infertility hasn’t actually resulted from the chemo, though. It seems to be the result of a reproductive disease called endometriosis, which I only found out I have a few months after we got married. I’ve now undergone two laparoscopic surgeries and a bowel resection to treat my endometriosis, and we’ve sadly been through three failed IVF embryo transfers so far.
The journey through infertility has so many parallels to my cancer journey: both are emotional rollercoasters that have made me feel anxious, stressed, depressed, sad and hopeful at different times. I had no choice in being diagnosed with either condition, and they’re both physically, emotionally and financially draining. Both involve ongoing visits to see specialist doctors and the need to actively advocate about my own health. And for me, the end result of both cancer and infertility is equally devastating, since the thought of my life without children feels like no life at all.
Throughout both of these difficult times in my life, my mum has been a source of constant love and support. She was my primary carer throughout my cancer treatment, and has been there for both me and my husband through the intense challenges of infertility treatment. I don’t know how I can ever repay my mum for everything she’s done for me, but hope that I can someday give her the gift of another grandchild, because I know how much joy my adorable niece brings her.
I will finish my story of survival with one final thought that I wish more people understood – cancer is not always a death sentence, but it is a life sentence. It’s the fear of recurrence or secondary cancers that never leaves, the life decision paralysis that results from this and the long-term side effects of treatment that stay with you for life. Just because someone is in remission, unfortunately this doesn’t mean their journey is over.
Natalie was diagnosed on the 13th March 2007 with Hodgkins Lymphoma stage 2. It was the day that changed our lives forever. To hear the words cancer from the surgeon was the worst news I’d ever had. I felt guilty as I had been a smoker for most of my life and had given up about a month earlier and my daughter aged 23 who had never smoked had cancer. I wanted to swap places with her as it was so unfair. I wanted to take the diagnosis, the treatment and everything that would follow away from my baby girl and to me.
I was quite naive about cancer as it wasn’t an illness any family members had ever had. I looked at reasons as why Natalie, given she had led such a healthy lifestyle. It made no sense when they are people out there abusing their bodies with drugs and alcohol and they were OK. The roller coaster began with fortnightly chemo where we spent almost all day at the hospital. Also Natalie’s future fertility was at risk so she was under a fertility specialist as well as her oncologist. A young lady in the prime of her life having to deal with cancer, possible infertility was wrong on so many levels.
Natalie didn’t wallow in self pity but instead used her free time to set up a website for Lymphoma patients to share their stories. She never complained about her whole life been turned upside down; she just got on with it and looked at how she could help others.
I juggled full time employment, running a house and being Natalie’s primary carer. As expected it put a lot of pressure on my relationships, but Natalie was and is my first priority and my whole life revolved around caring for her but at the same time giving her space to breathe and maintain some level of independence. After four months of chemo Natalie had daily radiation therapy for five weeks. During that time she returned to part time employment and realised she wanted to do something with her life to make a difference. She enrolled to complete a diploma in education the following year. I supported Natalie emotionally and financially during the challenging stage in her life.
Seven years, one month and seventeen days have passed since that bleak day in March. Not a day goes by that I don’t reflect on her journey with cancer and wish it never happened. We attended our last visit with her oncologist late last year and hope to never have to see her again. The fear of the cancer returning is a constant any time she is not well as well as now having to deal with infertility issues.
I still wish I could have swapped places with her as I have already lived my life and am thankful to have such an amazing daughter who I love more than life itself.
Natalie and Grace first shared their story with The Warwick Cancer Foundation, which is Australia’s first charitable foundation supporting young adults under 40 on their cancer journey. Find out more about the Foundation and all the wonderful things they do at http://www.twcf.org.au and on Facebook here.