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 so sorry op. I think all your ideas sound like things she would cherish, could you ask family or friends to help you organise things if you’re too ill and it’s too much for your dp?

This is a really lovely book that someone could read with her www.amazon.co.uk/Memory-Tree-Britta-Teckentrup/dp/1408326345?tag=mumsnetforu03-21 and maybe you could plant a tree or special plant together.

There’s also lots of resources here that may help: www.childbereavementuk.org/Listing/Category/books-films-and-resources

I have managed to lose two long messages now!

Briefly! I have stage 4 breast cancer too. Drugs are much better now so talk to your doctor and see what the plan is before making any decisions. The initial shock is awful and you need to ride that out before making any plans I think. I cleared out half my wardrobe in the weeks after!

I told my (older) children I had cancer and drugs were helping. I will update that as I need to. I have been able to work so life has been normal ish so whilst awful times are ahead I wanted to normal for as long as possible if that makes sense?

Please PM me if you think that would help. Much love xxxx

thinking of you op x

I’m so sorry I don’t know if I have any specific advice so just wanting to bump and say how sorry I am. You sound like such a caring mum. All the things you are planning sound perfect to be honest. The tree idea is good too.

Try not to get ahead of yourself until you speak to doctors, hard as it is… why do you think DH won’t cope?

I’m so sorry OP, I hope you can find some help here. Xx

Couldn’t read and not say anything my heart goes out to both of you, also as others have said birthday cards. . 💔💔💐💐💐

No advice but I love your ideas. A friend of mine made a library of books for her 9 yo before she died. She asked all of us for contributions of books that changed our lives, to offer wisom to her daughter when she was no longer around. I loved that.

Again not to get ahead of yourself of course , as hope things are not as bad as they seem.. I’m sure you’ve already googled and found these but:

www.mariecurie.org.uk/help/support/diagnosed/talking-children/children

be.macmillan.org.uk/Downloads/CancerInformation/ChildrenAndYoungPeople/MAC5766TalkingtochildrenE2.pdf

www.winstonswish.org/prepare-death-by-cancer/

I would also record videos so she can hear your voice and see you talking, that may help to keep your memory alive in her mind. Birthday cards too and write down as much of your life story (record) as you can, your childhood, your jobs, anything else about your life so she knows as much as possible about you as a person.

I think the library and tree planting ideas are beautiful.

To add to them: consider purchasing a piece of jewelry you love/or already have (if finances stretch that far) so that she has something she could wear on her wedding day or graduation that you picked for her?

I'm so so sorry you're all going through this.

Make sure there are photos of the two of you before you 'look' too ill, my mum wasn't in many as she died suddenly and usually took them.

At 3.5 the more tangible records (photos, videos) the better so they can jog her memory.

I'm so sorry to read this op
All the things you're doing so far sound lovely and yes, lots of photos and videos of you with your dd.
Birthday/Christmas messages? Cards?
The jewellery idea is lovely, maybe do more than one eg for her 18th and graduation/wedding with a message.
A special bear? Op I feel so sad for you all, I hope this thread offers you both ideas and support x

I personally wouldn’t tell her until right near the end. Kids have no concept of time (I’ve got an 7 and 8 year old and they still struggle to understand how long it is until holidays etc).

Enjoy your time with her now.

Thank you all for your suggestions and lovely words, they’re great. My partner is a good photographer and there are some lovely pictures of us together. I’ll select a bunch to print out! I will make some videos too.

Yes huge initial shock and maybe I’m feeling so negative about treatment options because I’m already in a lot of pain. They did a procedure yesterday and drained fluid from my lungs but I feel like the pain I’m in isn’t normal after that procedure. Not from what they told me at the time ( before the CT scans came back). I’d love to think I could be treated to have more time or there could be some drugs allowing me to live with this for a bit but I know my body very well and it doesn’t feel good or right - I feel like the pain is from the tumours now the fluid has gone - if that makes sense.

@StringFellow he can be a good dad but only when there are two of us, i.e when I’m well and functioning and able to step in too so he can get a break and downtime. I’ve done the majority of childcare and domestics since she was born. We’re both self employed and he’s very under employed at the moment and frustrated. He needs work and a routine to be happy - he’s not very patient with DD; he’s not domestic in any way; only after years of rows has he started doing stuff like cleaning without being constantly asked. He can’t cook so DD will be living off a diet of fish fingers! He lives in disorder domestically and it’s all the little stuff I worry about that only mums do really. Doing her hair. Making sure she has an outfit for world book day (she didn’t this year; he had no idea about it despite emails from nursery - he doesn’t read them - and I was so ill I also totally dropped the ball). It was fine, it’s nursery, she’s young, and she didn’t say anything or really know but when she’s older these things will be a bigger deal to her. All the stuff she’ll need for school … she’s an august baby and so will start school in September as one of the youngest and I’ve been worried about how she will cope. Puberty?! How will he cope with that? I have been accused of autism bashing before on here but please believe me I’m not. The fact is he’s Aspergers and ADD (very recent diagnoses too - he’s 47 and it’s been a struggle for both of us to deal with this) oats not his fault he’s simply not neurotypical. Lots of relatively straightforward things he finds hard. He’s spiralling and dramatic and very intense in general. He’s talking about getting his mum over to help - she lives in France - but they have a really toxic relationship & I don’t want DD raised by her in any way. The thought of that freaks me out. She hasn’t bothered to come here at any point since 2020 to see DD either! So they have no real relationship at all. We have tried to arrange going there but she’s been moving house and so chaotic & she has an open invitation to come here at any point (covid allowing) but she just hasn’t. She’s got no common sense and her and I have very different ideas about bringing up children. She was an alcoholic and did heroin when DP was a child and put him in some really awful situations he still hasn’t really forgiven her for. She’s calmed down now, she’s in her early 70s, she’s not as crazy with the drink etc. but honestly she’s not the best. Just … oh fuck.

Sorry for the massive essay. I have a lot of thoughts right now!

Thank you again for the links and suggestions. Just knowing there’s a little bit of support is really helpful.

You sounds a very thoughtful warm person who is able to put your daughter front and centre even during the hardest times and you’re in emotional turmoil and pain yourself. That is a great gift you’ve given her that will be there inside her for forever. Do you have siblings or some close friends who could step up and give emotional and practical support to you all now and also to them going forward if need be?

I am so sorry OP
Firstly I think you need to discuss exactly what the prognosis is
Then what about your family or friends - are they an option
And use all the services you have to access in order to help you and him decide where she should be

I'm so sorry OP - what a terrible shock all this must be for you and then on top of that you have the worries about your DD and the suitability of your DP as a lone parent.

What about your own family? Where are they? Do you want them to be involved in the care of your DD, if the worst happens? It doesn't sound like your DP or his DM are suitable carers on their own and I think if I were you and if I had parents or siblings who were willing/able I'd want them involved in an official capacity. Do you have a will? If not, please make an appointment with a solicitor asap and get your wishes down in writing.

If you have only just been diagnosed as stage 4, I would wait and find out from oncology what your treatment options are - some women are stage 4 a very long time with the chemotherapy around today.

Aside from that I'd be honest in a way your child can understand - they will know that you are going to hospital, have poorly days in a way that other mums don't.

Can you make an instruction book for DP? Literally step by step, numbered lists. My partner has ADHD and struggles with executive function and also parents chaotically. A ring binder of things to help DP and DD through til adulthood of all the things you do as a parent:

WBD instructions
Packing PE kit
How to do hair
Menstruation
First bra
Packed lunches
Wall calendar for schedule of activities

A kind of “how to be practical” parenting Bible of laminated pages.

I’m so sorry. Something I love having from my mum is both clothes and jewellery of hers, so think about setting things aside in a way that they’ll last, eg wool items vacuum packed so they’ll survive. And she crafted a lot, so I have some of her wool and art materials and things, and gardening tools – it feels very personal because it’s what she enjoyed. Packing up things for DD to have in adulthood as well as now would be my plan.

You sound like an amazing mum. I’d say just wait until you’ve had the conversation with the medical team so you know what you’re dealing with. The ideas of photos and a library sound amazing. Letters and anything tangible that says how much you love her. I have a daughter a similar age and I’m sending you and your family prayers and lots of love.

This may sound a bit silly but if you think it would help have a look at Jacquie Beltrao she's under Skyjacquie on Instagram, you won't need an account to see her account I don't think.

She is also stage 4 BC after a few years of being clear. She's documented her journey and the holistic as well as medical approach she's taken. Her last two scans have been completely clear.

She does answer messages from people in a similar situation to herself and it may be helpful to see how she and her doctors have attacked this with some success so far. Obviously everyone is different but if it doesn't do any good, it hopefully won't do any harm. Much love 💕

Sorry it's actually her last three NED scans that have been clear 🙏

@zafferana My own family - they're great. We all get on really well. They all live in the US. My dad is from the UK but has lived there for years and years. I have two younger sisters and a brother (brother's out of the picture, day to day, he works on ships & travels the world). Both my sisters are in their mid 30s and childless, not through choice sadly.

My elder sister & her husband are on a list for fostering. My other sister is single and 35 and wanting a partner and baby but struggling emotionally with that. They are both amazing aunts. They are brilliant. I trust them completely with DD. My parents are relatively young (65 this year - my Dad had me when he was 17!) and active - they all run their own business together & live near each other. My DD is the only beloved grandchild/niece. I would love them to be much more involved; even DD going to live there and go to school there & her Dad having her back in the UK in the holidays – but that would be taking his daughter away from him for a large chunk of time each year. I feel like I can't do that to him – he's even resistant to the idea she would spend all her school holidays over there which is another thing I would like & have gently broached with him. They love and adore her so much and she would get that very special female touch from my sisters. I don't know how to go about this with my partner.

He's not her biological father as we had IVF with frozen embryos I had saved from the first time I had cancer in 2011. I used donor sperm. We tried to conceive naturally but I was 40; he was 41; and although I had recovered well from chemo etc and was ovulating it just didn't happen for us. He is her father in every way though; forms signed; on the birth certificate etc. He loves her. I just don't think it's best for HER if he's parenting on his own. It's all about what's best for DD but I don't think he can process that yet.

@stuntbubbles Excellent idea; thank you.

@AnnaMagnani I haven't got a stage yet or had any biopsies. The diagnosis is from CT scans I had yesterday which showed malignant lesions around the right lung; some on bottom of left lung and one on the sternum. I had a bone scan before Xmas so either the sternum tumour was missed or it wasn't there at the time. The oncology team will call on Monday and we will plan from there.

I know it seems like I'm jumping the gun but my gut instinct (and the way I feel - pain; breathless still) says this will be bad. Of course I will try to chill this weekend and wait ... I feel better than I have done in weeks because the fluid is off my lung so I can play with DD and enjoy spending time with her. She's at a soft play birthday party right now and my friend has taken her with her daughter. I will talk to my friend when she drops her back about support and everything. She doesn't know yet. Telling people is the worst! So much crying... not me, I'm still numb...

It really is the worse time straight after diagnosis. The amount of shock seems unbearable at times. Don’t underestimate how that is affecting your physical well-being at the moment as well.

Once you have spoken to oncology on Monday things may feel a tiny bit more bearable. There are some very supportive Facebook groups if you want to PM me? As a PP said some people are living good lives at stage 4 so it may help to have a look through Facebook. The treatments can reduce or even remove the tumors so you should start to feel better.