I’ve been away from the forum for a few weeks, and I wanted to share why—and hopefully offer some reassurance to anyone currently on active monitoring.
I know many people find ‘watch and wait’ stressful, but for me, it’s been a lifeline. In the 8 years since my diagnosis, I’ve been monitored so carefully. Recently, a PET scan showed possible activity in my appendix. My team was straight on it—biopsies, echoes, and bloods were all prepped in case chemo was needed. My CNS was on the phone constantly with MDT updates.
The update now? My biopsy is still under review, but they actually think it’s appendicitis rather than a relapse. I’m seeing a surgeon next week. It’s a strange world where you’re happy to have appendicitis, but it just goes to show that active monitoring works. It catches things early and keeps you in safe hands. You aren’t being ignored; you’re being watched over."
Completely agree @Jules. If I have ever had concerns I have been able to contact my team and make an appointment. I was apprehensive at first (8 years ago like yourself) but now, it works for me and I feel reassured that if I need to, I can contact my team.
I like the term ‘active monitoring’ as well rather than watch and wait which was first used when I was diagnosed.
Hi @Jules I used to call it watch and wait, but I now like to call it active monitoring as I think that describes it better.
I always get anxious before, during and after I have all tests, getting results and appointments and I think I probably always will.
But I count myself very fortunate to be monitored so regularly and also to be able to contact my medical teams if I have concerns or need to run something by them.
@Jules I will be thinking of you next week, please do let us know how it goes with the surgeon and be ever so kind to yourself.
Oh @Jules, I wanted to respond to this great optimistic post of yours and wish you well with your surgeon appointment and then couldn’t find it!
Even though I bet it can still feel worrying, I love your attitude about being on watch and wait. It dawned on me recently that my treatments are becoming more like active monitoring too (well, in a Polycythaemia vera (PV) sort of way) and I love the extra space in between testing and the sense that my body is coping.
I’m really so sorry about what’s happening to your appendix though, hopefully it’s not serious. I’ve come to feel similarly about all the monitoring we go through, like being in safe hands. That must surely be the goal of all people who work in healthcare.
May I ask how seeing the surgeon went? No worries if not. Your beach yoga came to mind yesterday when I did my first session of the year (although indoors, and now I ache in weird places haha). I just wanted you to know that you’ve been in my thoughts @Jules.
Thank you so much for those kind words—it really means a lot to know I’ve been in your thoughts. I’m actually seeing the surgeon today, so your message came at the perfect time!
I completely agree about yoga; it really is the best for both the body and mind. My last beach session was a very chilly one back in October, so I’ve moved indoors for the winter too. I do yoga every day at home and also a couple of sessions with a local teacher. I’ve also taken up indoor cycling now that I’m retired! I’ve found it’s far too easy to lounge around all day when it’s so cold out, but I really need to keep active. It’s definitely way too cold for my allotment right now!
I’ll let you know how the appointment goes. So glad to hear you’re finding that same ‘safe hands’ feeling with your monitoring too.