Today I had another great session with Sibo, my trainer deluxe. First he killed my abs, then we had the promised endurance training. We were on bikes I used to go on before I discovered the joy of standing up on a bike, kinda old fashioned. Not those watt bikes, which I still can’t figure out. He told me we were going to do intervals going up to level 10, and I told him he was freakin’ crazy. No way could I get to ten.
Well lookee here, folks:
Bottom left – that, my friends, is level 10! I aced it. It was easy peasy lemon squeezy . Apparently the training is paying off. I was rockin it!
It made me think of the journey parents of kids with cancer go on. If you told them a year before their child was diagnosed that they would have a whole new vocabulary of counts and ports and red devil chemo, they might stare at you in horror. If you told them they would know all about intrathecals and how to deal with nausea and super moody kids and the best way to hold their kid so a stranger could stick a needle in them, they might shake their heads and say, ‘Nuh-uh, not me’. But somehow most parents manage to rise to this awful occasion and do what needs to be done. It becomes the new normal. It’s not easy peasy lemon squeezy, but they manage to rock it.
I don’t know how they do it and I know it irritates some people to hear us say that, but honestly, I don’t know how they do it. I don’t know how they find the courage day after day to place their trust and their beloved children in our hands, and to keep going, especially if their worst fears are realised and their child dies.
I have made a conscious decision to train, to raise money, to promote research in this field. It’s not easy by any means, but I can step off the bike any time I want and I’m pretty sure no one will notice. The parents of our patients, on the other hand, have no choice but to go on. When it’s really hard and I think I’m suffering, I use visualisation techniques to keep myself going or to get over the hump. Visualisation techniques – that makes it sound like I have a real strategy. I just find myself thinking of some of my patients and their families. Their faces and their stories pop into my mind and egg me on so I’ve starting dedicating rides in my head to certain people.
Today I rode for Nadine and her feisty fairy who is in remission after being diagnosed with Stage 4 neuroblastoma five years ago. I’m not going to tell her whole story here because I’m hoping Nadine will write a guest blog piece for me, but the bottom line is that the latest research played a large role in getting the feisty fairy into remission. We used a newish chemo protocol and Nadine did some of her own research and came bearing the fruit of her internet search and persuaded us to use the most aggressive treatment we could and today the fairy is a healthy, happy, normal (read: naughty) kid.
Here’s a nice definition of research: “the systematic investigation into and study of materials and sources in order to establish facts and reach new conclusions”. Sounds to me like Nadine conducted research and helped to save her own child’s life (P-G). She was well out of her comfort zone and she found it within herself to take on the scary medical professionals, to understand what the research meant and to ride the biggest hill she has ever faced.
Onwards and upwards!
Disclaimer: all patient images and stories are being used in this blog with permission. Sibo’s pics too.