May – August 2016

As I want you to get up to date with my disease I’m finding it difficult to remember everything, starting a blog 1 yr in is tough!!

Anyway here it goes with the remaining half of 2016. During this period of the year a lot of lung problems, I ended up having a pleurodesis, a procedure when they insert a camera into the lung and at the same time pump talc powder to seal the pleural. 

This is done under general anesthetic. It was 80% successful but I still have breathing problems particularly walking up stairs. 

In August it was found the chemo wasn’t working although cancer was remaining stable. My consultant found a new treatment, it was a clinical trial from Italy and she asked would I like to try. Of course I said ‘what other choice do I have’ 

From my biopsy they indentified my cancer has the same receptor as prostate cancer. The treatment I was offered is hormone therapy used to treat prostate cancer.

I was surprised that hormone treatment reduces testosterone in men as this is what feeds the cancer. The side effects could be worse but they are manageable, it gives you hot flushes, fatigue, weight gain and muscle weakness. 

Ohh one thing I just remembered as this is a major issue for me it’s memory loss. This is due to having radiotherapy to my head. In June they found 5 tumours in my brain ‘Sorry should mentioned this earlier’ but there you go ‘Memory Loss’ 

So nearly up to date with disease, please continue to read on where I am now……

February 2016

This is when things changed, my life totally turned inside out. I had a routine appointment with my consultant in the Royal Hospital Belfast. I told him about my cough, straight away he had a camera down my throat and sent for an X-ray. He ordered a CT scan and bone scan he communicated to the nurse “Red Flag” I knew this was serious, he said he could see nothing with the camera. 

One week later I was back to the Royal and the consultant and I knew by the look on his face it wasn’t good. He said you have a lot of fluid around right lung and the cancer has spread through out your spine, ribs, pelvis and shoulder blades. 

I was devastated, I was immediately referred to onocoly in Belfast City Cancer Centre. This to be honest is where my real journey began, I don’t know why the first time I was diagnosed I didn’t feel as bad. I suppose this time it was to do with the feeling off, there is know going back this time!

Over the next period of time it was the feeling of the most frightening roller coaster you have ever been on……..

August 2015

This is when things all changed. I developed a cough, it was relentless. I went to the doctor and she prescribed an antibiotic for a chest infection. I finished the course but still I was coughing. I went back to the doctor and she sent me for an X-ray. The X-ray showed up an infection and again I was prescribed an antibiotic. Still the cough continued. Over the next few months I had shortness of breath and coughing…….

September 2012



I was diagnosed with a Salivary Gland Carcinoma in September 2012. A very rare cancer with no  standard treatment. I had surgery to remove the tumour, 37 lymph nodes, jugular vein and 35 weeks of radiotherapy which was the worst experience I’ve ever had, 4 stone weight loss, sickness, panic attacks you name it I had it. Over the first 3 years I tried to get my life back in order, I went back to work and got on with life.

It is what happened next where I want to begin, August 2015……