My Story

It is at this time of year that there should be only pure happiness as we prepare to celebrate my littlest girl’s birthday, instead, it is a time also that I try to deal with the triggers from alarm bells that started signal that something that had been diagnosed as pregnancy related swelling 4 years ago was actually a whole lot more.

For those who have joined our Big Hug Box community just recently I thought it important to share my story with you. I will never forget the kindness shown towards myself and my family. It played a critical role in keeping me energised and positive and that is the foundation of The Big Hug Box, to share kindness and compassion just when someone needs it the most.

Cancer catches every single one of its patients by complete surprise. There is shock, disbelief and despair as they wonder, why me? Why now? Cancer threatened to take my motherhood and precious time away from my family, and that is what upset me the most. So here is my story.

A swollen left leg was much more than pregnancy related swelling.

After a perfect first pregnancy we were excited to find out that we would be expecting again in September 2015.

A swollen leg that had been present from 30 weeks into our second pregnancy,  had not caused any real alarm bells to ring, although a few tests were done we were told it was pregnancy related swelling. It had not however gone down after the birth of Baby L, which became my first alarm bell to ring.

At a visit from a midwife at home, when baby L was 5 days old, it was suggested that something wasn't quite right and so we were ordered to go get scans that same afternoon. Although my scan was fairly quick it was time for Baby L's feed. Rushing straight back to her I was closely followed by the specialist to inform us that I would have to go straight back to hospital as he had detected blood clot in my main iliac vein.  

I remember at this time being almost unable to speak through the tears and concern that I would be separated from my little one, it was the absolute worst situation, but truth was it had only just started..

Ultrasounds, MRI and CT scans testing started to answer the questions of what had caused the blood clot to form in the first place. In this time, I cannot remember how many tests I had, I do however remember the pain of being taken away from my little girl every time, thinking that this would be such precious time that I wouldn’t be able to get back.

Back in Hospital when Baby L 5 days old after initial blood clot was detected

Once the blood clot was being managed through self injecting clexane and compression stocking we got to go home to try and get back to being a family. A couple of weeks passed until we had finally received some rather vague answers from Newcastle and were told that our case was being passed onto the best oncologists in Sydney, I think that is when the real severity of what was about to happen was sinking in.

With my case now in Sydney, we waited patiently again, (in fact almost 2 months … was this all just a horrible dream I often thought?!) until I finally got a call from my Orthopaedic Surgeon organising to plan a biopsy to get further understanding of what we were looking at. It was at this time, after waiting for this phone call that things really sped up.

On the 5th December, my biopsy would be the first of the many scars and the start of some answers. Although we were told it went well and they were able to collect a sample of the tumor to assist in my diagnosis, we were given no real news still and so we waited patiently. Every morning we continued to be told there was no news and left Royal North Shore Private Hospital  to make the long drive back up to Newcastle with our little girl in tow and back to see our other big girl who was 2, still with no real idea on what was going on..

We arrived back home and continuing to wait.. but it was by this time I could no longer ignore its presence in my body. It was by this time my leg was not only swollen but in soo much pain no medication or over heated wheat packs really helped take the edge off.

Then, on the 18th December the phone rang. My Surgeon had said that there had been significant and lengthy discussions on my case. This tumor, diagnosed as a Teratoma on my Spine, was a 12 x 7cm tumor positioned between my L5 and S1 vertebrae. It was one that they really had not seen before and had also unfortunately been able to collect information on similar cases to mine. Most of the information after that will remain a blur however I do remember him saying that he would leave absolute no doubt that the tumor would be completely removed and that we would fit as many chemotherapy sessions in that my body could physically cope with before surgery on the 1 st of Feb. The last bit of news that was the real shock would be that I only had three days to prepare for my first chemo...

The most preparation I would do in this time was to prepare leaving my almost only 3 month old. I had started to prepare to wean her from breastfeeding onto formula prior to this but now we would only have these couple of days to make sure she was really prepared to transition. As we sat in the waiting room about to go in for my first chemo I continued to feed my little girl, I had taken so many photos of us together in the feeding chair to help prepare me for this day.

As my name was called, I handed over baby L to my husband and walked in strong minded and determined to get back to be with the girls as soon as possible. As we commenced chemotherapy that day, I will never ever forget the words my oncologist as he said with calmness and a degree of confidence in his voice that the treatment he would give would be a little left of field as he had never seen this tumor before but he had a plan he was confident with. How he said that with a little smile, helped stop the worry of uncertainty and instead replaced it with that little glimmer of hope that he had just given me.

I will never forget the kindness of friends and family that day as they all came to support me. A beautiful friend who I had known since high school had offered to support my husband through a very rough first night with our little girl that night as I stayed overnight in the hospital for observation. I could only imagine what she was upset about that night, I was too. The next morning was tough as we drove the long bumpy road down the M1 all the way back up to home in Newcastle where I stayed in bed for three days straight with extreme nausea. The only
comfort I got from this nausea was again the reassurance from my oncologist saying to me, “If you are feeling this horrible, just imagine how horrible those cancer cells are feeling”…

To be continued.