I’m no cancer specialist. I find myself comparing NHS cancer care protocols to mortgage applications in the 1990s. Take paperwork. Send instruction to valuer. Fire off to faceless business centre. Assume they’ll do their stuff and forget about it. Get earache from customer when they don’t.
My June request for a scan was deferred. She didn’t believe I thought my infamous butt lump was back. The good news is that this allowed me to travel to New England, Chile and South West USA. By the time they gave me the scan and results, changed my drug and “banned” me going to Australia my pelvis was struggling badly.
I love that I got the holidays. Based on life expectancy it’s probably a good thing. I will always wonder if the pelvic crumbling I first experienced walking through downtown Santiago could have been avoided. Although that walk through downtown Santiago wouldn’t have happened had I been scanned and switched to osimertinib sooner. Hobson’s choice. And who knows if the osimertinib would have lasted any longer than it did.
The referral to Matrix trials that never happened. “I sent the fax”. Yeah, but you never checked for an acknowledgment. No follow up. That may have forced me into chemotherapy sessions I didn’t want. Perhaps didn’t need. Who knows? Two doctors with a vested interest in looking after each other’s backs.
Then there’s Monday’s X-Ray. I’m in pain, spaced out by medication and nodding off. We’re told the results will be available at “close of clinic, or when you come back on Wednesday”. A choice! We choose Wednesday as hanging around Huddersfield Royal Infirmirary for several hours didn’t appeal.
Wednesday, the cancer nurses couldn’t trace the X-Ray. No sign of Oncobabe or any other oncologists. Hours later a phone call from the registrar saying it doesn’t look like a bone break, reassuring to a point, but I’m still awaiting expert advice, and no comment on is it cancer. Fourteen months ago I had a back specialist tell me he couldn’t see anything untoward in my lungs. A day later the experts contradicted him, sentencing me to death.
Uncertainty is never fun. Reassurance isn’t always a guarantee.