Waiting and Hoping

Anxiety comes
Stays a month before leaving
Destined to return

For reasons I won’t go in to, the hospital has told me that my neuroendocrine tumours are inoperable.  That means I am on a ‘watch and wait’ treatment regime.  In simple terms, I am scanned every six months and the hospital compares the images to assess whether the tumours have either grown or spread.  I was told, at the outset, that the tumours ought to be very slow growing and, thankfully, that’s been the story up til now.  There had been a concern that tumours had developed on my liver, but further analysis identified that it was a cyst caused by my liver being polycystic (as a knock-on from having polycystic kidneys).

My most recent scan was on Friday 1^st of May at St Barts hospital.  I don’t look forward to the scan, but I do look forward to journey up.  From Farringdon Station, I walk past the busy restaurants and delis, through Smithfield Market, and into Barts through the courtyard.  Friday the 1^st was a glorious day, so the pubs were busy and the courtyard of St Barts was full of staff, patients and office workers enjoying the warm weather.

The scan itself is a drawn-out process, because I have to wait an hour having been injected with a radio-active substance.  The idea being that the substance interacts with the rogue (cancerous) cells and they light up on the scan.  I’m in the scanner for about 40 minutes and have to hold my arms above my head, keeping as still as possible, the whole time.  Unlike an MRI, the scan is fairly quiet, so it’s not unusual for me to fall asleep !  But it’s a relief when it’s over and I can get some blood back into my arms.

I’m warned not to have prolonged contact with pregnant women or children for the next hour so, regardless of the weather, I always walk around town for at least an hour before jumping on public transport.  On this occasion, with the weather so nice, I decided to walk all the way home.  2.8 miles according to Google maps.  The route took me through the Barbican, past Old Street Roundabout, through Hoxton Market and across the Kingland Road, into London Fields.

What comes now is the wait between the scan and finding out the results.  According to the excellent ‘Patients Know Best’ app, my scan results will be available on the May 31^st and I have an appointment with the consultant on June 2^nd.  There’s always the concern that the tumours will grow or migrate, but it’s always heightened during this period. I am a member of an excellent closed Facebook group other neuroendocrine tumour (NET) patients share experiences and seek support and guidance.  It is a very broad category of cancer and effects people in lots of different ways.  But the one thing we all agree on is that the anxiety waiting for the scan results is challenging and the relief if the results show no spread is overwhelming.  Between now and the end of the month, I will go backwards and forwards with all the possible outcomes and what they would mean.  Best case, there is no development and we start the 6-month cycle again.  Worst case, the tumours have spread and we’ll need to agree what action to take.  By my calculations, this was scan number 8 and I can confirm that the ‘scanxiety’ is no less than it’s ever been.