We couldn’t even say it would be OK.

19 Apr We couldn’t even say it would be OK.

The frantic texting and social media messaging began almost immediately.  The beauty of this form of impersonal communication allowed the tears to flow in privacy for us and those receiving the news.  The last thing I wanted, for people I loved and respected, was for them to receive the news from someone else.  I didn’t have the strength to call everyone but I wanted people close to us to have the reality and truth as soon as possible to avoid confusion and chaos. My worst fear was that people would not know what was happening and unintentionally ‘put their foot in it’.

We spent that first night in Poole hospital which would be the first time of many that would see Team Brown divided in two.  The next day we spent the day as a family in a small hospital room, eating garage-bought sandwiches and copious amounts of sweet, fizzy drinks.  We needed to spend time together to share each others comfort and love.  To try to make it normal.

That day we were discharged from hospital with the first taste of what the diagnosis was going to mean for us on a day-to-day basis.  We were handed our first lot of medication, a thermometer to do a twice daily temperature check and strict instructions that Felix must drink at least 3 litres of fluid per day.  We left armed with booklets about everything you could imagine; information about our brand new world.  There were references to loss of hair, no contact with animals, limited diet, blood tests, lumbar punctures, life in hospital, life out of hospital.  It meant nothing.  It didn’t make sense.

We spent the weekend with family and friends in an atmosphere of nervous trepidation. Visitors came, visitors left.  It felt a little bit like Christmas.  We speculated and anticipated about what was to become.  We had no idea.

We couldn’t even say it would be OK.

Team Brown – Felix and Berty – 30th January 2016