My story so far…..

I was diagnosed in June 2015 but suspected something was wrong from about January 2014 when I first noticed coughing up blood.  I was a heavy smoker and have gradually increased my intake more and more from age 16 onwards.  I wasn’t prepared to give up smoking for anything, avoided movies or anywhere I couldn’t smoke, restaurants without smoking areas were “out of bounds” and I even turned down a free trip overseas because I couldn’t face not smoking in an aircraft!  Always said, if I can’t drive there, I ain’t going!

In January 2014 I worked on a farm in the Riviersonderend area of the Western Cape, with a medical practise in town and within about 1.5 hours of other major medical (private) hospitals.

Initially I had the “ostrich head under the sand” attitude and you know how it goes, work is my life and when I put my head down all things disappear and I often didn’t have time to sit down and take stock.  So I carried on, hoping it will all go away, but occasional heart palpitations, for which I’ve been taking a beta blocker for ages, suddenly increased.  The doctor gave me some other pills on top of that to help me cope with the increased spells of heart palpitations.  (Some tricks to use when you feel the onset – hold your nose and blow up the proverbial balloon – splash the face with cold water, any shock to the system. Rubbing the eyeballs never worked for me.)

By mid-year (our winter) I had another bad chest infection and by September 2014 I bought my first box of Welbutrin on doctor’s prescription, an anti-depressant similar to Zyban, to take the edge off quitting smoking.  That subject I researched endlessly and joined CANSA SA and ABOUT.COM to receive motivation and inspiration.  I found the CANSA SA’s eKICK BUTT programme a bit too militaristic.  About.com is full of resources and motivating stories and helped inspire me to stop.

In October 2014 the doctor sent me for lung xrays that showed a small spot on my left lung.  I did a saliva test which ruled out tuberculosis.  The doctor reassured me that it’s probably a haematoma (a sore spot on the lung), which will heal once I quit smoking. I don’t trust doctors blindly but it felt like an acceptable answer for now – “let me just get on with my life with as least disruption as possible while we sort the problem out.”

My heart palpitations got worse.  In January 2015 I ended up in a government hospital overnight because my doctor was unable to stop the palpitations. I was taken to hospital in an ambulance.  My heart palpitations stopped the minute they put me on oxygen.  Aha.  I realised much later that with my smoking and lung tumour, my system wasn’t getting enough oxygen.  So I took care not to be inactive for long.  To consciously take deep breaths.

After many attempts, I finally managed to quit in March 2015 and was waiting for the new, improved me, sans cough.  But things just turned slowly for the worst from there.  Gradually and slowly so you wouldn’t notice, I started shutting down.  Cleared out emails, deleted contacts, unsubscribed from every website and retailer just to lighten the load. I couldn’t face doing emails at home.  Emails to the children became short and curt. All I wanted to do was get to bed at around seven pm.  I managed to get through the day-to-day stuff at work but felt unable to start anything new.  I lost my sense of self, I no longer had opinions. Other people were making decisions for me.  I became quiet and withdrawn.  And we all thought these were side effects of the Wellbutrin.

I attended a lovely classical music concert in Greyton in May 2015 and couldn’t see a thing. I immediately went and got new prescription glasses.  (Living in a haze is apparently a warning sign of a brain tumour.)

By June 2015, Bianca, my eldest daughter (a research psychologist), got seriously concerned. Her own doctor advised that I should be sent for further tests.  All the time I’ve been living in Riviersonderend, my children had their own lives in Cape Town, thus being about 1.5 hours separated by car. Bianca contacted my doctor and together they devised a plan to get me back into the office. By that stage I cared very little and agreed. I was referred for tests at the Panorama hospital in Cape Town.  I was advised not to drive but of course I did with my new glasses and my weekend bag for staying at mum’s house.  I entered Panorama on Wednesday 10 June 2015 and managed to get myself discharged for the weekend to attend my mum’s 80’s birthday celebrations (see photos below but note that the actual date readings are incorrect). The rest of my story from official diagnosis is listed under the different category headings.

One of the weirdest things is the music I started hearing in my head probably from about March 2015 or the beginning of the year? I realised that it was not reality but I embraced it because otherwise it would have driven me mad. Beautiful music – sometimes choral, sometimes just long drawn out chords, sometimes classical, sometimes I could imagine a note emanating from Steve Tyler, beautiful rock – nothing that I recognised. Maybe these were bits and pieces of music I took in subconsciously in my life? After the brain radiation and cortisone treatment, the music disappeared but returned again January 2016 when I got diagnosed with further brain tumours and went onto more cortisone and radiation.