And what do you tell the children?

So how do you tell your children that their daddy has cancer?  How do you tell them that it's advanced cancer and he will need a huge regimen of chemo, surgery, radiotherapy, more surgery, more chemo?

And what about when one of those children has a learning disability?




As you know we are very open and honest about everything happening to us, this blog was always meant to help mange the information flow outward.  Believe me, in some ways the things you read here and on Daisy's Angels facebook page are often just the tip of a huge iceberg, but we do not shy away from telling the world our story.  So how could we keep Andy's cancer diagnosis in the family?  With our children, impossible.  We knew that once we told them, the floodgates would be opened and everyone would know, so it was crucial to make sure that they were clear on what was going on.

They know everything we know, they have visited the hospital where Andy is having chemo, Theo has chosen to read some of the info sent to us by the Beating Bowel Cancer charity, and, because they are used to dealing with the emotional rollercoaster that is our life, they have just got on with it.  Yes there are meltdowns and tears, but to be honest, that's par for the course in a family as complex as ours!

There is no denying the first few weeks were tough as they adjusted to yet another change, but they have a good support network and we called that in and now Andy's cancer and all that it entails has become part of our everyday language here at home. We do not hold back from using the word cancer, we do not shy away from giving the children more details if they ask, we even find opportunities to laugh - trench humour has always been part of our family mix. We can't change tactic because another member of our family is now dealing with a major illness.  Children are not stupid, we have always been open and honest about Daisy so they would soon smell a rat if we were not the same when it came to Andy's cancer.

But what about Daisy?  How do you explain what is going on to a little girl with a learning disability?  Well anyone who knows Daisy well understands that while her communicative skills are not good, her receptive skills, her ability to understand things, are brilliant, she is certainly not going to be fooled by any excuse.  So we decided to be open and honest with Daisy too, not to overload her with information but to give her enough to help her understand.  After all, Daddy is starting to get similar bits of plumbing to Daisy, he now has a central line, at some point he will have a stoma.

We spoke to one of the counsellors at our hospice and she also agreed that because our family strategy is to be open and honest we have to do the same with Daisy.  She understands Daddy is poorly, in fact for a long time every time she saw him she told him to go to bed!  We told her that it was because he has a pain in his tummy, but its a different pain to the one she gets in hers.  He needs medicine through a wiggly (central line) just like hers although his medicine is different.  It's different because Daddy has something called cancer.  We decided that we should use the word and name what is wrong with Andy because, being the bright cookie she is, she will at some point overhear other people using that word and it's important that she knows what it is.

We wanted to reassure Daisy that doctors were looking after daddy just like doctors look after her but at different hospitals, doctors for grown ups.  And we tried to articulate that we knew that she was worried about Daddy but she knew that the medicine would help daddy.  We have left it at that, there is no need to overload any of the the children with talk about prognosis and timescales, after all we don't know any thing.  It's important to us that all of our children understand that we are being really positive, Andy is getting the best possible care and we have a great plan and team we trust.  That is enough.  Daisy knows this in the same way that the rest of the children know it.

As a family we have always taken things one day at a time, and we continue to do this, while acknowledging that the children do worry about things all we can do is encourage them to talk and share.  We just try and lead by example, talk, share, explain how we feel and seize the moment.  We are living in the moment more than ever, trying not to mull and brood over what has been and what will be, just enjoying each day and appreciating the little things.  Being mindful.

When Andy was first diagnosed we also tried to lead by example with our friends and family, we needed them to know what works for us and what doesn't work, here are our rules of engagement for this current phase in our lives:-

1. Be positive, no glum faces, no weeping and wailing.

2. Be practical.  With a family as complicated as ours we need practical help - our friends have been so generous in their time when we have had the inevitable crises that chemo and cancer bring; feeding the children, feeding us, walking the dog, offering lifts, just being there

3. Little things mean a lot - knowing that people are thinking of us, even when they can't be here means so much, a text, a message, a card, an email.  All these things have lifted our spirits to know that there is a lot of positive energy out there coming Andy's way

4. This is going to be a long haul, Andy has been entered into the equivalent of the Marathon des Sables and the support crew is going to need to be there every step of the way

We are incredibly grateful as a family for all the lovely gifts, cards and special things so many people have given to Andy and the rest of us.  We are so sorry that we have not thanked each and every one of you personally yet but please know that every message, card, gift  & visit is like a wave of energy pushing us all forward.


Andy has just finished round two of six rounds of chemo, he is a third of a way there, the next step will be scans and then liver surgery.  His hair was coming out, and he was moulting like a husky in springtime, so he decided to take control of the situation and shave his head.  Daisy's reaction?  She found it hilarious, "hair gone!".

It may come as a surprise to hear, but life is good, long may it be.






2 comments:

Stephs Two Girls said...

You are all amazing and so strong, whilst I guess you'd like to crumble inside. Seriously do not worry about not saying thank you. no-one will mind that at all! Shows your great upbringing of course :) Am glad to hear you have a fab support network and hope you know we are all rooting for you all xx

Tania Tirraoro said...

Merry Christmas to you all. I've shared this post as one of the few practical things I can do and while I know that what you write is honest and brave, there will also be a complex mixture of hope, anger, despair and optimism coexisting within you all at once, with one emotion winning over another at different times. I am sending wishes that hope and optimism win many more days over Christmas, and that the New Year will bring more positive news every day. x

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