I was born with a large hole in my heart called a Ventricular Septal Defect (VSD). At age 2.5 when mum could fatten me up with enough butter and yoghurt I was safe for open heart surgery. Now 29 years later, the same wires will be reopened to allow for open chest surgery to get to my tumour.
As a kid I was an athlete at school running 50m, 100m, 200m and cross country (always placing from 1-3) and my heart surgery never held me back. I competed in local and state athletics and then gave it up due to bullying and developing anxiety – aren’t kids cruel?! My teachers even told my parents they thought I should seriously consider running in the Olympics as an adult but I let peer pressure get to me sadly.
Anyway, having heart pain and palpitations was part and parcel of my life. Every couple of years I would need the routine ECGs, cardiologists appointments and every couple of years they would find new holes forming in my heart but they would close back up again. I have a heart murmur which is nothing really but it will require lifetime monitoring.
Anyway, on Friday 30 November last year I woke up to what was the most excruciating pain I have ever felt in my life in my chest (worse than childbirth). It was around 2:00am and the pain was relentless crushing pain but I put it down to the fact I wasn’t feeling well after dinner as I ate a very large Sujuk (Turkish sausage) omelette and pretty much ate my daughter’s portion of dinner too! I didn’t want to wake my husband up as he got home late from visiting a friend and I thought that perhaps I just had really, really bad indigestion. I just lay in bed paralysed in pain but refused to do anything about it.
I got up around 6:30am to get myself ready for work. My husband got our daughter ready for day care, I told him I really wasn’t feeling well but took a cold and flu tablet and soldiered on. Walking around helped as there was no pressure on my chest so I thought that yes, it must have just been dinner!
After dropping my daughter off to day care and being at work for a couple of hours the cold and flu tablets wore off and I felt bad again. Now, I began to suspect something was wrong. I told my bosses and they told me to see a doctor immediately.
I was in so much pain I clutched my chest with one hand during the 15-minute drive to the doctors. I was lucky the community health centre was directly across the road from my daughter’s day care.
I burst into the GP telling them about the crushing chest pain. The GP examined me, I had a fever and was shaking and then she called the ambulance. The paramedics arrived, examined me and told me that I have to go to emergency. At this time everyone thought it was a lung infection as I had a cold a few weeks ago and a lingering cough which actually disappeared the day I had the crushing chest pain.
I was carried out of the medical centre on a stretcher and the day care staff could see the ambulance pulling out of the carpark. They had no idea it was me thank goodness!
I was in such severe pain the paramedics wanted to give me pain relief but I refused as I prefer to feel pain than nausea. I have to say the paramedics were absolutely incredible, kind and compassionate and hated seeing me in such intense pain. They did make me laugh a lot however which did unfortunately lead to more pain!
At this time while being transported to hospital I didn’t want to upset or worry my husband. He thought I was going home for a nap. My husband is a government contractor and therefore if he misses work he does not get paid. I know I should not be thinking of money during a time like this but it was leading up to Christmas and we only moved to Canberra a few months’ ago so I couldn’t afford him to have any time off work.
Still refusing pain medication, I waited on a stretcher in emergency for an hour until the paramedics could put me on a wheelchair and wheel me into the emergency general waiting area. It took me another 2.5 hours to see a doctor. At this stage I had a temperature of 39.8c and was shivering.
By 4pm I finally saw a doctor in emergency, they assessed me and told me I need a chest x-ray. This was when everything was revealed.
After a 40 minutes when the x-ray results came through, the doctor brought a young nurse. Her name was Maddy, I will never forget her. The doctor told me with the nurse sitting by my side. “We have found an abnormality in your chest that it is unlikely it is a lung infection.” I cannot remember her words exactly but she said something like “you have a large mass in your chest that resembles Lymphoma.” I burst in tears, Maddy the nurse held my hand and hugged me and stayed with me for an hour until my husband arrived. We chatted about a number of things. How I met my husband, what I did for work. What our daughter was like.
The doctor called my husband and told him I was in emergency and that she wanted to discuss some things with him.
My husband picked our daughter up and brought her to emergency and that’s when he learned the news.
That night after a CT scan (with the most amazing wards-man) I stayed overnight in the haematology department (as by that time it was around 1am).
Nurse Maddy came into my room with a bunch of flowers and a packet of lollies for my daughter and told me “I could not stop thinking of you last night. I wanted to make sure you are OK. How are you feeling?”
I burst in tears again at the generosity of this young nurse who did not know me but will make a lifelong impression on me. I will honestly never forget her.
I had numerous tests, biopsies, a gamma scan to measure the function of my heart and I was diagnosed with Thymoma, a very rare cancer of the thymus gland. I have a 12x9cm tumour on my thymus gland above my heart and also on the pleura of my left lung.
When the young Oncologist told me about my diagnosis I burst in tears, my life came crashing down. He began to tell my husband and I about options for treatment and harvesting my eggs if we wanted to have another child in the future. We both decided we didn’t want to go through the hassle of trying for another child and I just wanted to get better so we will always be a small family of three.
I gave my Oncologist the biggest hug in complete tears as he told me about the 25+ doctors that will be looking at my case every Monday and that they are not only aiming for treatment, they are aiming for a cure.
I still cannot believe that I receive all of this amazing lifesaving medical treatment for free. Every test, every scan has been bulk billed for me. My (late) father in his 10 year battle with Liposarcoma received free healthcare but there were still a number of other out of pocket medical costs. For me, it’s all been free so far.
I was discharged from hospital and was free to go home. I was sad that my life had changed so drastically within a few days. But I was glad to go home as I could barely eat and function in hospital. I have to tell you that the care I received at Canberra Hospital was the most compassionate, gracious care I could every ask for. I will never forget every single nurse, wards-man, doctor, radiologist and social worker.
My treatment plan so far will be a few rounds of chemotherapy, a median sternotomoy (open chest surgery) when the tumour is small and safe to operate on, then a few rounds of radio therapy.
I had my first day long chemotherapy session a couple of days before Christmas. I bought my first wig from the Cancer Council (but I think I will stick to scarves and bandanas first) and one thing I don’t want to lose is a positive attitude.
I cannot change the fact that I have cancer, but what I can change is the way I think and feel about it. I know that some days will be tough but I will do what nurse Nicole and Jessica at the Canberra Cancer Centre told me and that is to put one foot in front of the other and take one day at a time.
I would also like to thank my friends and family who have been cheering me on the sidelines and sending me love and care packages. I would also like to thank my amazing husband who has been by my side looking after me and providing me with unconditional love and support. I could not be this positive without all this love and care from everyone. So again thank you!
I am planning on teaming up with another lady in Canberra who has a brain tumour to create a social club so that we can all support each-other and have fun.
You only have one life to live so make the most out of the one you have.
Keep smiling and thanks for reading.