Advice needed - 3 yr old DD - explaining to her I have terminal cancer?

[mowly77]

Welp I found out today that almost ten years after my breast cancer it has returned in my lungs. I am not sure what, if any, treatment options I have or if it's just going to be palliative. I am expecting a call from the team on Monday & will take it from there. My first thought is my amazing, lively, funny daughter who is just 3.5. Any advice? DP is very dramatically upset & not taking it well at all; saying crazy stuff and I am numb I think, in shock, but pragmatic. He won't cope alone and we have no family in this country. This is really worrying me.

But I am so so worried about the affect on DD. Can anyone with any experience help me with how to deal with this? To explain to her in an age-appropriate way? I have had an email address set up for her for a while and sent baby pics etc when well; now I'm writing a few letters for her to read when she's a bit older. A memory box? Birthday cards? Videos? I just don't know and I don't know how well I will be to do these things. I am utterly heartbroken of course. My own mum died of cancer when I was 10 & I can't believe history is repeating itself this way. It's a genetic BRCA2 mutation and she has a 50% chance of having it too so there's all that practical stuff to explain too, when she's older. There's so much to think about and I don't know where to start.

I'm sorry sorry that you are having to deal with this. 💐💐💐

@SlB09 thank you for those brilliant suggestions. I’m sorry you went through that too with your husband . I hope he & you & your DS are doing well now. The yoto box looks brilliant. I’ve recorded one bedtime story on video for her. And will put all the videos I have of us together/ me etc on a hard drive for her but the yoto box she can use herself looks great. They’re out of the record your own cards but I’m down to be notified when they’re back in stock.

You’re right about what they can process. So the guinea pig at her nursery died recently (RIP Gilbert) & they did a special story time and explainer about it but they basically said he was very old & went to sleep one night & didn’t wake up. She somehow knows that’s dying. She was talking about ladybirds in my sister’s house being dead at Christmas when we went over to visit & that was months before I was diagnosed … might be because our cat is a keen mouser & I guess at some point she didn’t buy the mice were ‘asleep’ anymore. But she doesn’t know exactly what ‘dies’ means.

Last night at bedtime she broke my heart into a million pieces however as she now seems to associate growing up and getting older with dying from the Gilbert story. Which is true of course. She asked if everyone died/would she die and I had to say yes. And she said didn’t want to grow up and get old because then she would die and we wouldn’t be together anymore and she wouldn’t have a mummy anymore. Obviously I tried to reassure her that she wouldn’t grow up & get old for a very very long time but I couldn’t say well I’m going to die first. It was just a moment though, she didn’t want or couldn’t take on explanations and just wanted to go back to reading her bedtime story. But still. I was pretty taken aback and really really upset about it.

But hey on we go. I’m on a course of chemo now so she knows I go to ‘hobistal’ to get medicine & I've warned her my hair will fall out which was also upsetting, as you’re right, she now associates that with bad things & says she doesn’t want any medicine that will make her own hair fall out. Again I’ve tried to reassure her.

Anyway that’s where we’re at. I don’t know my own prognosis so I’m certainly not telling her any more than I know, just the hospital and medicine part, & nothing about my own death. But yes, she’s a smart &
intuitive little girl so we’ll just have to see how we go. Anyway massive wall of text but thank you again so much, & everyone on this thread, it’s so useful.

Thinking of you OP.

My darling sister had a similar diagnosis with a young family, but with treatment, was able to live with cancer for 4 years before she needed palliative care. During that time, she was able to talk openly and honestly with her children and husband, about a future that didn't include her. She firmly believed in some kind of afterlife and even now (7 years on) when they see a rainbow, they all shout 'there's mum!'

Of course, she was fortunate to have the time to make a lot of special memories with the children, and towards the end of her life, there was no drama, it was her time to leave, as she put it, and she died peacefully (syringe driver to manage the symptoms) at home, cared for by the hospice at home team.

There is a lot of support for parents facing a life limiting illness and I wish you well.

Just checking back in with your thread, not been very active on here recently. Sorry to hear things are so tough, though it sounds like you’ve done so much to prepare memories and so on for your daughter.

The conversation with her about death & the guinea pig sounds really hard, I’m sorry. You sound like you have such a lovely and open relationship though, she’s so lucky to have you as her mum.

Just a very practical small thought - on some old birthday cards I keep for sentimental reasons, the ink has faded so much that I can’t really read it anymore. If you are doing birthday cards for her, it might be an idea to take photos of them too in case that happens?

Glad to hear you're in treatment again and sorry to hear things are so difficult for you right now. Your sister sounds like a real blessing.

Not sure if you've spotted but the make your own cards are in stock in some other places.
www.naturalbabyshower.co.uk/products/yoto-card-multipack-make-your-own-cards-10-pack
You can also use the app to record and then put it on a card later which might make it easier to pace yourself.

Just read this whole heartbreaking thread and couldn't just walk away. I have properly sobbed, but its not about me. OP, you sound like a bloody brilliant mother. I have no advice, I think you are already doing everything perfectly. Life can be so so cruel. I wish for nothing but the best for you and your DD. Really really really hope there is some positive news for you. If there's anything we can do on here please do say.

thanks @Isonthecase you're on the case! I haven't done a ton of research into yoto yet so that's super-helpful.

Yes had a very honest conversation with DP tonight & he's admitted he won't cope well alone but he's also really upset and angry. With me mainly. I can see why, he feels pushed out & that he's lost me, but here's a long history of why that is long before my diagnosis that he just can't see & honestly yeah I've had to toughen up as women always do, because guess what? I'm still here taking on the burden of most of the childcare and domestic labour alongside not one but two incurable illnesses now. If my sister hadn't been here so long I would have gone under by now.

He's being a manchild who can't see that DD comes first & yeah I've got no time for that, sorry. We still love each other, sure, & I feel his pain, but this situation needs more than that, sadly. He's on the autism spectrum which we only found out 2 years ago & he's finding it so hard & I know it's not his fault. But I have to do something. Me and my sister have decided to go see a family lawyer to see what can be set out in writing for the future; for a situation we don't know when will happen; & a tricky one at that considering all the variables. But it would set my mind at rest to see what could be done to legally give DD support from my family.

I am so sorry for your loss @SailingNotSurfing your sister sounds very special. And it's lovely she was able to find that peace & that your family remember her in such a nice way.

RIP Gilbert - & that conversation would have my lip quivering trying to hold it together bless her.

My DS used to call my husband 'baldy poo' during chemo, typical 3year old boy toilet humour..............wasn't so funny when he shouted it at a builder one day 🤣

How are you getting on OP?

Think of all senses she could remember you by. For eg MP3 records and videos of you talking, laughing, singing
Is there a perfume you wear? Any smell she could associate with you?
I am.incredibly sorry for what you are going through.

OP, I'm so sorry this is happening to you. My DH is undiagnosed, but our son is autistic and I'm sure he is too. I have worried about how he would manage alone.

My mum died when I was 24. I still have a cardigan that she knitted me and a card she made for me before she died, and I really treasure them. It feels like because she made them, they're part of her iyswim. I'm not sure what your knitting skills are like OP but perhaps you could make a collage together with her of all your favourite things?

Again, I'm really sorry this is happening to you.

Been following your thread and you sound so wonderful. Such a great mum.

How are you? How are things?

Well lost half that & the edited version! Late now … am trying to get that deleted and will try and reply tomorrow.

I’m so sorry OP, I can’t imagine how hard this must be. I haven’t read all the suggestions that have been made so this may have been mentioned.

When my son was in PICU the psychologist they have there recommended the book ‘the invisible string’ www.amazon.co.uk/Invisible-String-Patrice-Karst/dp/031648623X for my 2 year old that was at home wondering where his brother was. The story basically describes how we are all connected together by invisible strings and it doesn’t matter how far away we are from one another we are always connected by love. He’s only really grasping the concepts of the book now he’s almost 3 so it’s definitely suitable for a 3, almost 4 year old.

Thank you @AliceThroughTheLookingGlass that book is on my list, it looks good.

I’m ok thank you for asking, although currently frustrated with huge hospital inefficiency as I sit here for hours and hours waiting to hear if I need a blood transfusion. & then 2 buses home & the whole day gone.

My admin for DD has stalled; haven’t even finished my will. I think I needed a mental break. & also my Dad is now here and we have been going out and about and enjoying living in the moment. I have had three rounds of chemo but it is very stop and start. They’ll rescan me after 12 I think.

I can’t knit @mynameisnotmichaelcaine I wish I could! But I like drawing and painting and I have made a few cards and will do more. & videos and voice recordings. I’m gathering presents & mementoes and writing a list of ages and special occasions to give them to her. So I guess I have been doing some admin.

The bloody guinea pig has definitely set off “death” in her little brain. She asked me if I was going to die the other day & oh my stomach dropped and my heart broke. I had to say yes and I couldn’t soft soap it like any regular parent and say ‘yes - but hopefully not for years and years when I am very old and I will be around to care for you until you are all grown up.’ But because of her age she wasn’t interested in my invisible-string type explanation of ‘I will always be with you even if I am not here because I love you so much’ — she excitedly interrupted me to tell me a pigeon came into the play area at nursery and “made a mess! And laid an egg!”

gotta laugh really.

@mowly77 I am sure she will treasure it all. Sending so much love and strength.

Hi @mowly77 how are you doing at the moment? (I'm a pp name changed)

Hiya op, been thinking about you xx

Hi @sintrawest and @Zoflorabore, really appreciate you checking in. I have had 17 rounds of chemo since April - YUK - but the chemo stoped working in the latter 3 months so I am now on targeted therapy in tablet form, which is easier in every way, and in the process of hopefully switching to the Marsden.

all my efforts to write; make videos etc ; even finish my will, have stalled as I have either been so ill from the chemo, and then v sick from the drug change … but I am starting to feel better now! Got a dose reduction and am calibrating all my different meds … so I am focusing on spending time with DD doing everyday lovely things. She’s a school now too … we had a great day yesterday where we want to a party at a soft play place for one of her friends then went for lunch & mooched around and it was so normal and nice.

I’m hoping as I get stabilised on these drugs I will have the energy to finish all these projects for her! And probably getting a Yoto for Christmas.

@mowly77 I’m in awe of your fighting spirit, I wish you many more happy days with your gorgeous DD. If it helps, there’s a random stranger here rooting for you (and I’m sure a thousand more who have read your thread). X

Thank you @DasAlteLeid it really does help! It so nice to know that. I enjoy MN for all its snark and humour and straight talk but there is also a great cohort of support and kindness on here. Shhh don’t tell anyone…

I am so happy to read that you’re still here - I’ve often thought about you in the past few months. You seem like an amazing woman xx

Oh OP. I've read all your posts. You incredible caring and amazing person. Your DD is so lucky to have all the love you give her and your family sound so supportive.

What a horrible time you're having. Wishing you a miracle at the Marsden.

Just popping by too let you know I've been thinking of you. Hope all is going as well as possible.