living with cancer

Things have been going so well, I guess our run of good luck had to come to an end. We got the results back for Carys’s MRI and MIBG scans. The images showed a small piece of tumour remaining behind the psoas muscle. That’s a big muscle at the back of the abdomen that controls the hip. The news came as quite a shock and we are devastated. After the surgeons’ confidence that he had got almost all of the tumour, we were hoping for perhaps small, microscopic bits left behind. But this piece is quite visible on the MRI as a small chain of little lumps, and showed up as ‘hotspots’ on the MIBG. When I asked Lisa what this meant, she said it indicated that the remaining tumour cells are alive and viable, though she hopes that this small piece will remain stable. She hopes that the tumour has had its big growth spurt since it was so large at diagnosis, and won’t continue to grow now that it has been de-bulked. But she couldn’t rule out further growth. The current protocol is to monitor the tumour every 3 months with an MRI, and MIBG if needed. On the positive side, the doctors still think that they removed more than 90% of the tumour, which was the original aim. So I guess the surgery can still be called a success. But for us, it wasn’t the outcome we had hoped for. We wanted for all of this to be over, but now we have to figure out a way to live with the quiet, constant fear. We get through day by day and just cherish and savour our time with both Tane and Carys. But thoughts of the future paralyse me. Where should we live? Should I go back to work? Should I continue my studies? and the most perplexing question of all - how do we tell Carys that she has cancer??? Most of the time, I tell myself to just get on with it, but at other times, it all seems so hard. And I hate that feeling of being so out of control and powerless. The cancer is like an insidious little beast that has a mind of its own. When I look at Carys, I can’t believe that it’s still alive inside her. She’s such a brave little girl. She takes everything in her stride even though she has had to endure more in her 19 months than anyone should have to endure in a lifetime. She continues to do really well. She’s perked up a lot since the chemo stopped and she recovered from the surgery. Although she never really seemed 'sick' per se throughout the treatment, she was quite quiet and passive. Now she’s much more active and chatty and learning new things all the time. When she reaches out her arms for Ian or me and says “duddle” instead of “cuddle,” and wraps her arms around our neck, it’s just magic.