MY CANCER 'STORY'

Cancer has changed my life, but it does not define my life. 

I was 18 when I was told I had cancer. I had just started at University, I was incredibly naive, and at the same time was going through my first heart break. Sounds tragic right? Well don't worry, it hasn't all been doom and gloom. 

What was really tragic was that it took my over 3 MONTHS from the point of first visiting my GP to the point of diagnosis. And I had had symptoms for about 18 months before that. I have since learned that this is very very common for sarcomas. 

I had my cancer for nearly 2 years before I received my diagnosis. 

The only indicator that something was wrong was a small, slow growing lump on my left shoulder - and that, to me, was not sinister. The real reason I first went to the GP was because the lump was getting big enough that everybody could see it and I thought it was ugly. 

So, after being told it was a cyst, and nearly being operated on in the doctor's surgery (before I, luckily, freaked out about it), I was told it was probably a lipoma, but if I wanted it removed I'd need an ultrasound first. 

A long few weeks later I attended my ultrasound. The results of which were suspicious. (suspicious?!) Up until this point I had absolutely no concerns about cancer at all. 

Now here comes the kicker - it then took 2 MONTHS to have an MRI of my shoulder. A diagnostic test that if under the correct system should have taken 2 weeks to receive. 

Anyhoo, the MRI was, obviously, suspicious still. It looked somewhat like a 'vascular malformation' - a harmless, benign condition. But it also looked very similar to something called 'sarcoma', so I really needed a needle biopsy to be sure. My consultant was over 90% it would not be sarcoma. 

As you by now know, it was sarcoma, called alveolar soft part sarcoma (ASPS), and here is where my story really begins. 

Unfortunately, having my tumour cut out was not the end of the road for me. 

 

It had spread to my lungs and was growing

Some months later it turned out that the sarcoma had already spread to my lungs and, although very slow, was growing. Some months later again, they found another spread - this time to the bone, a 2cm lesion in my scapular. You can imagine by this point I was feeling pretty sorry for myself. 

However, then!! My cancer started growing very very slowly - it was stable! I had almost a year of no treatment, and time to process my diagnosis, and live normally. That's when I started this blog. 

In September 2018 I had a microwave ablation to 2 nodules in my right lung. Up to date (12/19) I have had no treatment since then and STABLE growth. The best news someone with metastatic cancer could hope for. 

I have had no chemotherapy (which is ineffective for ASPS), no radiotherapy (thanks to wide margins!), and as of yet no systemic treatment (of which options are limited). My cancer is currently incurable, but I have been lucky enough to be of good health otherwise - I am fit, I have energy, I am able bodied, and most importantly I am happy. 

I have travelled, I have a degree, I can work, I see my friends and family all the time, I go out, I play music, I live the best life I can, while I can, with the means I have. 

Cancer has changed my life, of course, it was a crazy diagnosis to receive at 18, but it hasn't taken over. It has made me so grateful for days, weeks, months of good health, for my loved ones around me, and the opportunities life throws at me.

 

I am very realistic about my prospects, however I am hopeful about the potential future of medicine, and am in the lucky position of stability at the moment.  

That's my 'story'. So far.