We don't need Cancer to remind us to seize the day

There has been a big gap since my last post.   I have had a post in draft for a while, one about the arrival of our lovely little cocker spaniel puppy Pluto and how he has turned our world upside down and had such a huge impact on our family.

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.


Lastly we have learned through Daisy that medicine is essentially educated guesswork.  Next month Daisy will be 10.  In the early days we could barely see beyond 10 months let alone 10 years.  The doctors did not think she would make it this far but thanks to constantly evolving science and the care and love she receives day in day out she has made it.  So when people ask about Andy's prognosis we just don't know.  Yesterday the consultant told us that Andy is lucky to have cancer now when almost on a daily basis breakthroughs are being made and new treatments are being developed.  We can't pretend it will be easy, if life with Daisy was a marathon, then this is an ultramarathon.  This is going to test our limits but we are made of strong stuff.

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.





9 comments:

Mrsnige said...

crikey, life hasn't half thrown you some curved balls to deal with! I am amazed at your fortitude and tenacity, but reading this post carefully it is all about the others, please do not forget about looking after you too. You also need rest, fresh air, good food, time to think. I hope you are able to get it.
Good luck on this next stage of your life's journey, the map just got more interesting.

Alexa MacDonald said...

Excellent, heart-lifting, life affirming blog.

Twinsplustwo said...

Cancer certainly picked the wrong family to move in with, welcome nowhere but the Nimmo household will put up the biggest of fights! Thinking of you all as you Fight yet another fight... And totally agree with the post below- you need to think about you too. Life is so unfair Xxxx

Tania Tirraoro said...

The other day I was thinking about Cancer, as you do, and I thought the universe wouldn't be so cruel as to give me that as well as what I already have in my life, would it? But here you are, you Nimmos, showing that yes indeedy the universe can do what it likes and it IS that harsh and to the nicest people.
This most certainly wasn't in your plan either. But you will get through it one day at a time in the same way you have with Daisy for the last decade. If any family can do it, the Nimmos can. You have a shining example of courageous grace in your 10 year old and she gets it from her parents.
The Tirraoro family's thoughts and prayers are with you all, Nimmo family. Be strong, be resolute. Take care of each other and beat the crap out of that Bowel Cancer

Looking for Blue Sky said...

Wishing you and Andy all the strength and luck in the world x

Alexia McD said...

Your great attitude is more than half the battle won. You are very inspiring.

Ali said...

Oh Steph. thinking about you. x

Muddling Along said...

Oh gosh I am sorry - wishing you strength and luck and will be keeping you in my prayers through this new challenge

Jo Franklin said...

Steph - Jo Franklin here - I just thought I would have a little look at your blog to see how your beautiful daughter is - and this.... I'm speechless Please remember me to Andy and send him my warmest wishes and keep a whole heap of them for you... I know it's such a fatuous thing to say - but if there is anything that I could ever do.... I know you have lots of support and I'm sure there isn't a hole that I could fill but - just wish I could do something more practical than say; I'm thinking of you and sending you love
Jo

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