Update to a large group - still no diagnosis - 27th Feb 23

5 days after discharge

Hey, please forgive the Ctrl+C, Ctrl+V text, but it’s easier for me to update as a group. I’d all been hoping for a big update today, but nothing too enlightening.

My consultant seems keen to expedite things, so we’re hoping for a biopsy in the next 1-2 weeks, with results to follow about 2 weeks later. No doubt you’ll all have questions, and feel free to ask, just bear in mind I’m getting them from all angles so please forgive me if I take a while/forget to respond. In the meantime, here are answers to some FAQs:

• My PET scan results haven’t been delivered to me yet, but they won’t give me an update on these until they have a biopsy as there are too many variables, so using the PET to make any assessment can be risky. Once we have a biopsy result, the PET can be used to show any spread or aggressive sites that need targeting.

• I’ve been reassured that based on the scans I don’t need to worry about processes dragging for a few weeks here and there. Just accept that it will take some time.

• Chances are I’ll remain an outpatient for the time being, including for the biopsy and any initial treatment (likely chemo). I seem to be stabilising at a trim fighting weight of 76kg, otherwise my metrics suggest I’m relatively healthy (you know, aside from the tumour..).

Other than that, I’m genuinely all good. Currently chilling at home and hoping to head back into work part-time while I’m awaiting biopsy/treatment 👍🏽

Context

So we're now getting to the point where I was sending large updates to 40-50 people, and the situation was changing rapidly as we were still pre-diagnosis. in hindsight, I would say that I maybe used a bit too much technical jargon for it to be entirely clear, but I suppose it doesn't take long to Google "PET scan tumour" if they really need to know. Where possible, I tried to preempt questions such as "why can't they diagnose you from the PET scan" as these were questions I'd asked myself. Definitely saved me having to answer that question a few times.

Also of interest was that I was now out of hospital. I think it's natural that interest slightly dipped once I had been discharged, which gave me a bit of respite and time to focus on all the possible outcomes of my biopsy. None of that is intended as a dig, I just think its natural that people will be more intent on receiving updates from someone who is physically in hospital than someone waiting for an appointment.