„It feels as if a heavy burden has been lifted. My heart feels like a bird that can fly again after being confined. The relief has wings.“ Bird in Eindhoven NL photo by howlzap Cologne

I realize I haven’t updated you on the results of the operation in January. I’d had to wait so long for results, two weeks post operation I finally had in in black and white that there was no evidence of disease (NED). The report didn’t solve the mystery of what the poppy red patches were but it did bring relief.

Today was my twenty second cystoscopy. I’m extremely happy to report another NED. My partner and I cried happy tears we were so uplifted by the news. The scanxiety properly reveals itself to me afterwards. It builds in the weeks preceding the appointment- despite mindful meditation and yoga. It feels as if a heavy burden has been lifted. My heart feels like a bird that can fly again after being confined. The relief has wings.

Eleven TURBT operations, fifty-five Chemo sessions with Mitomycin thirteen of them with EMDA and twenty-two cystoscopies take their toll. I’ve been more aware than ever that the long term effects are here to stay. Fatigue is the biggest one it’s physical, mental and emotional and feels the opposite to having wings. Despite being careful not to overdo things and often going to bed super early I find myself hitting a fatigue wall. It’s the kind of tiredness that sleep doesn’t always relieve. However, regular rest and restorative practices help; light gardening, gentle walks, yin yoga, reading on the sofa or a long long bath do replenish some of the energy. My energy batteries are quickly depleted though and I’m seriously considering reducing my working hours further.

I’m acutely aware how fragile the balance between NED and evidence of disease is. So finding what does me good and helps me thrive is the best way to fly into vibrant good health. What helps you?