We have hit the wall. Not surprisingly really, 17 rounds of gruelling chemo over 3 days, an intensive course of Selective Internal Radiation Therapy (SIRT), coupled with a very complicated family life is going to have it's toll.
Andy has found the fatigue overwhelming, and this has affected his mood - too tired to eat, too tired to go for a walk. He is frustrated at what his body can't do, but focused on the end result, hopefully getting to a point where he can have the surgery to remove all the cancer, including the awkward inoperable little bugger that is too close for comfort to his hepatic artery. The routine goes on , fornightly chemo, a scan 6 weeks post SIRT, more chemo, another final scan at 12 weeks post SIRT to decide definitively if it's worked or not and then plans. More SIRT, other targetted treatments, surgery? But all this keeps Andy going, despite the physical toll the chemo is taking, he is focused on becoming cancer free and returning to work at some point.
To remain focused requires introspection however, and as the carer and partner of someone with advanced cancer it's tough. You are on the receiving end of everything - the good, bad and ugly. I am not going through what Andy is going through, but I am supporting him through it and the person I most want to lean on for support during this time is the one who is going through it. It's coming up to 12 months since Andy first became ill with the symptoms of metasasised colorectal cancer. 12 long months of treatment and life adjustments and curve balls that were certainly not in the plan.
And of course having an already very complicated family life, life has had to go on. In many ways, being already in the mindset of spinning multiple plates, we just added this further plate and kept it spinning. But after a while reserves run low. This week we visited our nearest Maggies Centre to discuss how they could support us - initially Andy and myself and then maybe, if they want it, the older children. Clearly this is going to be a long haul, we knew that, and again life with Daisy has taught us (possibly the hard way) to know when to ask for help.
We have had a good summer, still seizing the day between chemo rounds and Daisy's respite, making memories for us and for our children, never taking anything for granted. Our biggest frustration probably comes from not being able to be spontaneous in the same way that other families with a parent who has a cancer diagnosis is able. We have to plan things around Daisy's respite dates and hope that on the dates she has respite Andy will feel well and have enough energy to go out. It's frustrating because there is so much we want to do when Andy feels well but Daisy is no longer up for unplanned, spur of the moment trips away.
We continue to see a deterioration with Daisy, she is completely dependent on her wheelchair now and is experiencing constant pain and infections, mainly due to her bladder. We have now got to the point where continuing to do nothing and just pump painkiller, antibiotics and antifungals into her is no longer an option. So we have agreed to yet another major surgery, to remove some of her small bowel, reconstruct her bladder and move her two stomas so they don't constantly cross-infect eachother. It was not a decision we took lightly but hopefully it will improve her quality of life, and this is the measure by which we make all decisions about Daisy's care and treatment. When she has an anaesthetic she will also have a muscle biopsy to rule out once and for all whether she has a mitochondrial disorder ontop of her Costello Syndrome diagnosis. Our hope is that once she is recovered from surgery she will be in less pain and this will help ease the frustration and anxiety which manifests as "challenging" behaviour which is becoming so difficult for us to deal with ontop of everything else.
So the bottom line is that there is a strong likelihood two members of our family will face major, life changing surgery in the next few months. Our hope is that the SIRT treatment has worked for Andy and he can have the liver resection and removal of his primary tumour which will hopefully render him cancer free and Daisy will have her surgery. We will get through it all and focus on the outcome, remaining positive and realistic which is the way we have lived our lives since Daisy's arrival.
But in the meantime there is more fun to be had and more life to be seized. Our children continue to make us proud beyond words - Theo has embraced the opportunities of his IT apprenticeship and is maturing into a caring and independent young man; Xanthe gained an incredible set of grades in her 10 GCSEs to show the world that it's not the hand you are dealt but how you play it, she is set to study fashion, art and photography at College and Jules has settled well into his new specialist school, making new friends while keeping in close contact with his old friends. They are incredible young people and despite the messy state of their rooms we are so proud of them all as well as their little sister who is so determined to be a little girl and live a full life.
Tomorrow night, after what will no doubt be a manic morning of packing and organising in order to get Daisy to respite and Jules ready to return to school Andy and I will drive to Milton Keynes to see the Foo Fighters and with luck to meet the band! Music, Festivals, time together - this feeds our soul, it recharges our batteries and gives us time to just be ourselves, away from our day to day realities. To sing along to your favourite band with thousands of other people, it's the most cathartic experience in the world and while no doubt it will wipe Andy out, he will go into chemo the next day with a lifted spirit and a smile on his face.
Yes, we've hit a bit of a wall, but having run 5 marathons and an Ultra as well as countless half marathons I know that the only solution is to pick yourself up, give yourself a good talking to and keep focusing on that finish line.
As Andy always says - onwards and upwards!