But along came something that turned our world upside down even more, and has had a bigger impact on our family than we could ever imagine.
Andy, my brilliant, opinionated, insightful, clever, rock of a husband has cancer.
And the world as we know it will never be the same again.
It has crept upon us, completely unseen. We knew the lessons from our past and those who had gone before - never, ever ignore symptoms. And he didn't. So at the beginning of October when he was getting pain and nausea, couldn't eat, blood in his poo, he was not too embarrassed to go to the GP. He went, and was referred for urgent scopes. He began to feel increasingly unwell and we convinced ourselves it was ulcerative colitis, the symptoms matched after all and everything we read said that pain was not a primary symptom of bowel cancer.
But we were wrong. The endoscopy showed a large tumour in his bowel and the doctor confirmed that he did not need to wait for the biopsies to know whether it was cancer. And so on November 3rd, nearly 6 years to the day since Daisy first was diagnosed with intestinal failure and subsequently started on TPN following a scope which showed huge changes in her bowel, we began a new journey as a family. The cancer journey.
In many ways life with Daisy has prepared us well. We are used to hospitals and the "system", this is not going to be a shock. We know to discuss things like portacaths in preference to hickman lines and if Andy needs a stoma bag, well that's no big deal, we've been living with stomas and central lines and IVs for years.
But the other important thing we have learned through life with Daisy is to seize the day. Five years ago, while Daisy was on yet another long hospital stay, Andy was made redundant. It was the best thing that happened to us. He set up on his own and developed a steady stream of clients. We also made sure however that work did not become his life, he did not take on too much work because it was just as important to have free time. So he built days off into his schedule and we would go off for the day, visiting exhibitions, catching a show, making the most of life in London. Whenever we have managed to get respite we make sure we make the most of it, this year alone we have fitted in a break at an eco campsite in Sussex with our bikes and camper van, we have got our annual festival fix, taken in several gigs and shows. We went to Disneyland Paris , we have seen friends, had fun, I have run two marathons and an ultra marathon and Andy and my support crew have been there at the finish line for me. We have had parties for the children, fun at home together. We live a full life and already do not take life for granted, we did not need cancer to remind us to seize the day, we do already.
Andy's cancer has spread. It has metastasised to his liver, but we take huge hope from the fact that it has not moved to his lungs or brain. Cancer will be with him a long time, it will be a chronic condition that will be managed. The first plan is to remove the primary tumour from his bowel and then to target radiochemotherapy on the secondary liver tumours to shrink them with the aim of operating on the liver in a year's time. We are amazed that so much can be done for liver secondaries these days, when my dad developed bowel cancer 14 years ago, there was nothing that could be done once it had gone to his liver. These days the picture is a lot brighter. We learned yesterday that up to 85% of the liver can be taken away and it will still function and grow back. We live in London, a stones throw from a European centre of excellence in Liver Care. We have so much on our side.
We are putting in place the additional care that Daisy needs now. Not only am I a man down as Andy is not really able to help with any aspects of Daisy's care let alone her complex IV regimen, I also have to make sure I can look after Andy and the rest of the children. To be in the best shape to cope with chemo he needs a good diet and fresh air and a stress free home. Thankfully our wonderful team at our hospice ShootingStar-Chase have been able to help with some emergency care and longer term we will have even more support from our lifeline The Children's Trust at Tadworth as well as family support from The Rainbow Trust. Our complicated life just went off the scale in terms of complexity but we are confident that once we have the support network finalised then we can get things back into some sort of norm for us. Cancer has come into our lives, but it does not have us. It's clearly going to be difficult to ignore but we can't let it be our lives and take away our personalities.
And so back to our puppy, because believe it or not the timing could not be better. Yes, it has been like having another child, but there is nothing more grounding that having to get up and get your wellies on and go for a walk in the woods early in the morning because your puppy needs a walk. He has been our little bit of normal, a link with the everyday. The children adore him and when things get stressful a cuddle with Pluto or a walk with him around the block is sometimes all that is needed. He is a great healer and we are so glad that while we have one unwelcome house guest now, we also have a very welcome little four legged one too.