The Lily Pad Walk

A cancer diagnosis changes everything, a stage four terminal diagnosis changes everything again. TIMG_5851 (1)here is no control available, and there are no cures, only vague chances to extend life. For us, just now, it is just a matter of getting through each fortnight of the current immunotherapy treatment regime in the best way we can. Unless you, or your family, have lived with cancer, or another incurable disease it is probably very hard to understand so we will try to explain. 

Looking well, and feeling well are completely different, something many people are unable to understand when they see Jon. We know he doesn’t look ill but he has a wonderful palliative care nurse, and a DNR on his medical notes. Some days our ‘mind clouds’ are black, some days they are grey, and on other days the ‘skies’ are bright and clear and the sun is shining. Our new normal is far from normal as you know it, and for us it changes almost every week.

We’ve also discovered a few things over the last sixteen weeks of treatment. Jon has learnt not to have the accompanying steroids and antihistamine alongside his infusion of Nivolumab as rather surprisingly this actually lessens the side effects. We’ve learnt that we can’t do anything extra, such as seeing friends, on the way to/from the hospital in London, as it is simply too exhausting. 
We’ve learnt to say no to friends and family visiting as coping with the treatment and trying to earn a living is enough for us both right now. The emotional exhaustion is huge, for both of us, and there appears to be no way to ease this while riding the ‘terminal’ rollercoaster. Every two weeks Jon sits in the ‘chemo chair’ and the whole situation hits us in the face once again. And we’ve finally and very importantly learnt to ask everyone who is unwell with an infection or virus, even a cold, to stay away from Jon as he pick things up so easilyIMG_5578, feels far worse and they last twice as long.
We don’t wish for exotic holidays, or the big trip, and are just grateful for happy days out together exploring and walking the wonderful British countryside near home. One of our friends with kidney cancer says that she needn’t look death in the face for the next three months after a stable scan, and we know exactly what she means.
We’ve heard of great results already from this immunotherapy drug, in a few kidney cancer patients where lung mets have melted away. That’s great to hear and we are thrilled for them, but the reality is more likely a long haul to keep the cancer at bay and life never being the same again now Jon is on regular treatment. Walking on lily pads is how we describe it to those who ask. jonb1
The long drive home from the hospital this week was wonderful, we marvelled at high summer in all its glory and harvest at full speed ahead. Once a farmer, still a farmer, always a farmer and seeing the crops safely gathered in is so satisfying and life enhancing. Next year’s crop will soon be in the ground and the cycle of the farming year starts again.
The continuation of life and growth goes on all around us in perpetuity while Jon and the medical profession are fighting to extend his life for as long as possible. And while he can Jon keeps pushing on to raise funds for the early diagnosis project and if you’d like to you can help Jon by donating here