The story of my diagnosis

January 12, 2018

As you can guess by the infamous bald head,  this blog is written by a cancer patient. Therefore, it makes sense for the first blog post to be about the diagnosis itself. There were many lessons learnt along the way, things I wish I had done differently so I'm hoping that by sharing my own story, others might learn something and possibly be spared a similar fate. A word of warning though, this one might be quite lengthy and a bit of a tear jerker. 

 

My story begins in December 2016, one week before Christmas. It's that same old line of 'I was in the shower when I discovered a lump on my right breast'. A quiet alarm bell went off inside. I wasn't particularly in tune with my insides at the time as I was busy running around with my two small children. But it must have been loud enough to get my attention as I immediately made an appointment with the local GP. I believe that our body tells us everything we need to know, if only we learn to listen and more importantly to trust what it's telling us. Especially if it's contrary to what the medical practitioners are telling us. That's a tough one. 

 

As I was new to Adelaide, I simply made an appointment at the closest medical centre. Although this lump did get my attention, my visit to the doctor was more to put my mind at ease that it's just a false alarm. The doctor I saw was extremely friendly, palpated the lump and explained that since I was still breastfeeding, it's most likely nothing serious but just to be sure she gave me a referral for an ultrasound. Whilst performing the ultrasound, the radiographer explained it was most likely benign, a fibroadenoma, however if I want to be absolutely 100% certain then they can take a small sample (fine needle aspiration) and do a biopsy. I agreed to the biopsy, after all I was only there for peace of mind and wanted to be absolutely certain that it was nothing serious. 

 

A few days later the doctor rang me with the good news. She said my results were fine and told me to enjoy my Christmas. I trusted her and quietly celebrated the false alarm. Silly body had me nervous for no reason, or so I thought. I didn't know it at the time, but that day was lesson one - always ask to see your results, don't just blindly trust a doctor you hardly know. If I had known this at the time, the cancer could have been caught at stage one and today I would still have both breasts. Even if you do know your doctor, still ask to see the results for yourself. I mistakenly assumed that my ultrasound and biopsy results were given by the radiologist and that my GP was simply the messenger. I later learnt this was a misconception. My results were basically inconclusive. In amongst the usual medical jargon read something along the lines of 'does not exclude the possibility of malignant cells'. It was basically up to the GP to interpret the report and draw a conclusion. I had no idea that in my case this was a trainee doctor in her second year of a fellowship program. She made the wrong call.

 

When learning how to drive a car in Australia, we're required by law to display an 'L' sign on the vehicle, followed by a 'P' to make other drivers aware of the inexperienced driver in front of them. This makes perfect sense. However, in my case it turns out that you can have a trainee doctor single handedly make the decision on a life-threatening disease, without you even knowing they're still on their Ps or that they were responsible for interpreting results. To me this seems absurd, and I believe that patients should be made well aware when they're entering the room of a doctor in training. If I had known that I was at the mercy of such an inexperienced doctor and that she was responsible for interpreting my results, would I have acted differently? I'd like to think so.   

 

Over the next few weeks after the initial biopsy, the lump seemed aggravated. The area became inflamed and it hurt to touch. I assumed it was because of the biopsy and that it would eventually settle down, which it did. Although the pain eventually subsided, the lump itself appeared to grow in size. Each time I brought this up with my husband (one of only two people who knew about my lump), his response was always the same:  'You've had a biopsy which confirmed it was benign, what more can we do?'. And with those words, he mostly alleviated my concerns.

 

This continued for another few months until I found a second lump under my armpit. This time, much louder alarm bells went off inside. I went back to the doctor and that's where the real story begins. I was a walk-in patient and the doctor on duty was clearly quite senior. In hindsight, I think he knew straight away but didn't want to be the bearer of bad news without any certainty. It was Friday late afternoon and most people had gone home for the day. He gave me a referral for a core-biopsy and wrote 'URGENT' in capital letters. That should have been a giveaway yet the eternal optimist in me remained hopeful. He then rang a leading breast surgeon here in Adelaide who agreed to fit me in on Monday night, at the end of a fully booked day. The breast surgeon took one look at my lumps on an ultrasound then somehow managed to organise a core biopsy for the following morning, even though it was 7pm at night. Things were progressing quite quickly, yet I still wasn't in panic mode. On some level I knew there was a reasonable chance the news would be bad. I had to wait a very long 48hrs for my results. I remember thinking this is probably the last day of my old life as I knew it, so I thought carefully about how I would like to spend it. It was a Wednesday and my husband was at work. It wasn't a hard decision to make. In such situations you quickly realise that the magic is in the simplest of pleasures. The kids and I headed straight for the beach to collect seashells and feed the seagulls. One of the perks of living in Adelaide. It was the perfect way to spend the last day of my old life. 

 

 

 

The kids taught me a lot on the beach that day. I was beginning to open up, knowing there was a strong possibility of some very bad news coming my way the following day. We had brought some food intending to feed the seagulls except on this particular beach there weren't many that day. We set off towards one small group of seagulls we could see close by. As we got closer, the birds kept moving further away. I kept hurrying the kids along to get to these seagulls. But instead they wanted to look at rocks along the way, turn over piles of seaweed to see what's underneath, pick up sticks and write letters in the sand etc. It seemed they wanted to do everything but walk towards our destination. I was getting frustrated because all these distractions were slowing us down. The plan was to feed the seagulls and we still hadn't reached them. I know it seems so obvious now that the kids were simply being in the moment and I was the one who needed to learn how to join them. They live in the moment while my goal oriented mindset had given me tunnel vision. I know this is an extreme example and sometimes it's easy to recognise it then come back to the present, but it got me thinking whether I was doing this with life in general?       

 

Thursday 8th June 2017 at 8am. That was the appointment time written on the back of the surgeon's card for him to give me the core biopsy results. I still have that card as a memento, the appointment that forever changed my life and the lives of many others around me. The happy-go-lucky Sanja had planned to stop by at the surgeon's office on the way to the preschool drop off. I figured even if the news was bad, I can handle it. Lucky for me, my husband knows me a lot better than I know myself. All the signs were there, so he insisted that he joins me at this appointment. So there we were in the surgeon's office on that fateful Thursday morning. Me holding our eighteen month old in my lap, my husband holding our four year old in his. It couldn't have been easy for the surgeon that day to utter those words 'it's not good, it's cancer'. There seemed to be a really long pause after that, at least in my head. I turned to my husband in disbelief, waiting for the rest of me to catch up to whatever the ears had just heard. My initial reaction was I can't go now, I haven't even begun to live. 

 

It never should have escalated this far. A few months ago it was a pea size lump that was given the all clear by the GP.  I vaguely remember saying this to the surgeon and his response was that there's no point looking back or blaming anyone, we need to focus on the path ahead, which in this case was surgery followed by some very harsh chemotherapy. I could see we were making his job extremely difficult on this particular day. Being the bearer of bad news was unfortunately part of his job, but delivering that blow on such a young bright eyed family must have been so hard. 

 

The next step was to scan the rest of my body to determine the extent of the spread. This involved a full day in hospital checking my body from head to toe. One of those tests was a PET scan which involved injecting a radioactive substance into my bloodstream. They brought the substance in a metal container with a skull and crossbones on it with a bright yellow warning sign: toxic. I immediately began to cry at the thought of that being injected into my body. You have to understand, I'm someone who is reluctant to take paracetamol for pain relief, so the thought of injecting a known poison into my body was confronting to say the least. The poor nurse was also taken aback, she needed me to give her permission to inject me with this radioactive substance, but all I could do was cry. She then went through her standard checklist and one of the questions was whether I was breastfeeding. When I answered 'yes' she said in that case they can lower the dosage. That seemed to make me feel a little bit better. In that moment, I felt like I had to surrender my body to an imperfect medical system and hope for the best.   

 

I had to wait several hours for my body to absorb this radioactive substance before returning to the hospital for the scan. As I was allowed to eat before this scan, my husband and I decided to go and have lunch. I remember sitting there at a busy inner-city cafe during the Friday lunchtime rush and thinking how you should never be too quick to judge as you never know a person's true situation. For onlookers, we were just another young couple enjoying their lunch, no one would ever suspect that one of us had just been diagnosed with cancer and was sitting there with a radioactive substance flowing through their veins. I joked with my husband how you can never be too careful these days, you never know if the person sitting next to you is radioactive. 

 

After they had completed all the scans, I was sent home and told not to get too close to my kids for the next few hours. I knew this would be impossible, they sprint towards me as soon as they hear me at the door so I knew I had to stay away from the house until the radioactive substance wore off somewhat. I returned home just in time to help put the kids to bed, then had an appointment with the surgeon later that night to discuss my results. Yes things progressed that quickly. Clearly he knew something about my cancer that I didn't. 

 

As I was strongly advised not to breastfeed my daughter whilst I had radioactive poison flowing through my veins, my poor husband was left to somehow put her to sleep for the first time without the boob. Boy did she scream! Our entire neighbourhood got to hear her cries. Meanwhile, I was in the next room bawling my eyes out. I cried for every mother who wanted to feed her baby but for whatever reason couldn't do it. I was one of the fortunate ones for whom it came so naturally. I had a screaming baby and a plentiful milk supply, but unfortunately on this particular night it was toxic. I also cried for my poor baby, she didn't deserve this. Weaning is never easy, but this way was just heartbreaking. 

 

Once both kids were finally asleep, one of my friends arrived to babysit them while my husband and I visited the surgeon to get the results of my full body scan. I'll never forget that night, walking out of our house on a moonlit night, leaving two small children asleep in their beds. As I walked towards our car, I stared at the moon thinking I had a heavy cross to bear that night.

 

Although we arrived on time, he still had a few more patients to see ahead of us. I remember really bad songs playing on the radio and even worse ads. Luckily we didn't have to wait long. Once we were inside his office, we sat down in those same two chairs where we had sat the previous day when he delivered the initial blow. That was just the stab, there might still be a twist, as if the stab wasn't painful enough. The surgeon had a busy day and didn't get a chance to look at my results before my appointment. Therefore he still didn't know the extent of the spread. As he began scrolling through his long list of unread emails, I began sinking in the chair. If ever there was a moment to start praying, for me this was it. Firstly I apologised to God for not having any kind of spiritual life then began making promises on some fairly radical life changes going into the future. I desperately wanted to have one. Surely this can't be it, just 32 years of life? Plus I quickly realised I hadn't really lived at all.  

 

As he searched for all my results in his inbox and went through all the different body parts and organs, I kept sinking lower in that chair. I may have been sitting in a chair at the time but metaphorically this was one of those moments where life had brought me down on my knees. I took a deep breath and turned to God in a more sincere way than ever before, because I realised that to me in that moment absolutely nothing and no one else mattered. 

 

I made some radical promises which I do intend to keep. When death came knocking on my door, the white noise of everyday worries completely quietened down and all that was left was this beautiful peaceful state of openness,  truth and most of all - love. The world would be SO different if we somehow learnt to live this way. 

 

Again, this was my experience of it and it could be different for each person. I imagine the more armour a person builds up over the years, the harder it is to strip it all away in an instant. I thought I had always been a fairly open person, but this took it to a whole new level. Unfortunately this state didn't last long. As I learnt to live with my diagnosis, it slowly began to fade. Now I see it as a free gift or insight into something to work towards for the rest of my life.

 

In the end the diagnosis was grade 3 breast cancer with multiple metastases in the lymph nodes. It was highly aggressive, growing so quickly it was outgrowing its own blood supply. Things continued to move quickly, I was booked in for surgery the following week. It felt like I was thrown onto this conveyor belt and I had no idea where it was headed. I mean I vaguely knew that it included surgery, followed by months of chemotherapy then radiotherapy. Were these my only options? What about natural therapies to use in conjunction with or instead of the harsh realities of modern cancer treatment options? I felt like a mouse inside a maze, desperately searching for a way out. The next part of my journey deserves a blog post of its own. Although I tried my best to keep an open mind and remain objective, deep down I was trying to steer clear of the chemo train. This took me on a journey to the other side of the world. My trip to Latvia deserves a post of its own because I believe that's where the real survival story begins. I promise to write about it soon. Thanks for taking the time to read my first ever blog post :)

 

 

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