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 @mowly77

It all sounds awful for you. Really hoping that you are stabilised and get home and start treatment.

OP you sound like a truly amazing mum. After losing my own Mum, I love the idea of a manual above. What I would have loved is a page for each life stage to learn from her experience, like
Dating
Deciding who to marry
Becoming a parent
Parenting and working
More on parenting - teenagers
Planning for retirement
Making the big life decisions- the ones that you want to ask advice xx

How are you now?

Sounds like being in the middle of a nightmare.

I'm sure your little girl will still love to see you, no matter what.

Sounds absolutely awful, I'm so sorry to hear that. Hoping things improve quickly!

Videos of advice for her about various topics. A couple of back ups of these..Can only imagine how you must be feeling OP.

Been thinking of you. I'm so hoping you're doing better & receiving the treatment & care you need. You sound like there has been so much going on it's hard to find the energy for every part of the shit show you're living. Just to say, we hear you. We at MN are here for you.
You deserve rapid care, effective treatment & reassurance to focus your limited energy on the other things like parenting. You must be so overwhelmed & trying to deal with it in a chaotic environment. Be kind to yourself, your DD needs all those stories & messages & preparation. That requires energy, so preserve some of it for the good stuff. Take care

How are you? Are you home yet?

I am so so sorry to hear this. From my side I am brac1 and had all the surgeries to reduce the risk. My dd may have the gene too but we don’t know yet. Knowing a couple of mums who have passed away young from secondary cancer with young children, can I suggest having a support network in place with their friends. I would also put in place counselling for.m your DH and DD. A friend did this when his long term partner died and as a result was in a much stronger place. I truly hope there are some treatment options for you to explore. Sending hugs to you

And get to the maresden. They are amazing

So sorry OP and completely horrified at how hard it has been for you to get treatment. Have you got somebody sorted out to live with you when you get out! Your husband doesn’t sound like the sort of support you would need in a time like this

So sorry. That sounds beyond awful. At a similarly trapped time a friend got amazing support from Macmillan. One of their nurses took over all the chasing and she had new appointments, a hospital move and all sorts quite quickly. I wonder could someone arrange them to advocate for you?
X

pp posters covered so much of what advice i had to offer and more.

Just one more idea to add, have you seen or heard of the “Tonies” audiobook childhood speaker? It is interactive and usable from a very young age, and as well as putting a little toy on top that has whatever chosen story, you can record your own voice reading her favourite or new ones, so that each night she could have you still reading her bedtime stories. You are an incredible Mum and your immense love for your DD will give you strength, propel and guide you to making the right & best decisions for her well-being , and making precious memories now, and for the future. I am so sorry you have been dealt this cruel hand.

The professionals from the Cancer Charities will have the best advice and support for you, as well as others who are in your shoes. My heart goes out to you and your family.

@Flipflopssndsocks

So sorry. That sounds beyond awful. At a similarly trapped time a friend got amazing support from Macmillan. One of their nurses took over all the chasing and she had new appointments, a hospital move and all sorts quite quickly. I wonder could someone arrange them to advocate for you? X

I think this is a really good idea - to approach MacMillan for support. You need someone to advocate for you OP

Thanks all. Yes got out late Friday night. Thank FUCK. I’m still very ill but better to be at home than in A&E obviously. My oncologist is back and should be on the case the today. Her registrar did call me yesterday. Breast cancer care nurses should be back and on the case tomorrow. They are Macmillan BCCN but they work for the hospital — those that have suggested getting Macmillan to advocate for me do you mean calling the charity separately??

I’ve already got a second opinion at the Marsden coming up on 25th (although obviously that feels like forever - clinics only on Monday and cancer takes an Easter break!) so as long as nothing gets WORSE before then I think I can make it. I am still taking part of my treatment, letrazole to block estrogen and today I will chase oncologist and get her to get my schedule of bone injections sorted ASAP as they don’t require you to have good blood counts etc like the rest of my planned treatment.

I am saving bits of energy for DD and slowly writing letters etc and will try and do some nice relaxing art therapy today - making her birthday cards until she’s 18 as she’s at nursery.

Also yes my sister is here thank god my ‘D’P has been an arse since Saturday morning. He’s got a cold so we all know how that’s going to be! It’s gonna be worse than my blood disease and cancer combined!!

Glad you are out and glad your sister is there. Hope you are feeling better for both of those things.

With Macmillan my friend had a named nurse - can you be linked with one from the hospital? I might get your sis to call the charity and see.

Sorry your DP is so enraging!

I am so sorry, I have experienced how poor cancer care has been recently as my husband was stage 3. I really hope the Marsden can offer you some hope.

I have just come across this thread. I'm so sorry to hear your situation OP, you are clearly an amazing Mum.

I haven't read the whole thread, maybe this has been mentioned already, but it's something I wish my Mum had done.

Dear Mum, From You To Me: Memory Journal Capturing Your Mother's Own Amazing Stories (Journals of a Lifetime Timeless Edition)) (Journals of a Lifetime (R)) https://www.amazon.co.uk/dp/1907860304/ref=cmswwrcppapiiiCM21ZBV4Z828H48ST749?encoding=UTF8&psc=1

Just so when she's older it might answer some questions.

Sending so much love to you. ❤️💖

Thinking of you, hope the appointment this week went well.

There is a lovely book called ‘Badger’s Parting Gifts’ which deals with death and dying in a gentle way that small children can cope with.
‘No Matter What’ by Debi Gliori is another wonderful book which ends with the line “love like starlight never dies” and you and your dd might get some comfort from reading this together.

Just thinking of you & wanted to reach out to say I hope you're doing ok. So much to be dealing with. Take care.

Thanks @trackerc I'm still here; finally had second chemo after another awful hospitalisation. I need a run of 12 and then they’ll scan me again. I’ve been getting through admin such as making will; writing letters for DD; advice; my life story; getting presents for the future etc. It’s weird. Now my blood disease is being treated with regular transfusions & I’ve had some immunotherapy and now switched to chemo, some days I feel fine & can go out and do stuff with DD, but not everything we used to do together and there’s no doubt I’m not the same parent I was before.

There’s no day I don’t know or remember or stress about or get upset about the fact I have incurable cancer and the future is so unknown, but that a good outcome is unlikely. Thank god my sister is still here. She’s going home for a month in a bit but my dad and stepmom will come over. I still need to talk to her about guardianship & figure out how that’s possible when she’s in a different country. But I’ll get there.

There’s a lovely cancer support thread I’m on mostly but this thread has been invaluable to me. Big thanks to everyone who has replied or offered suggestions and support.

Posted up thread somewhere with a diff name but have been keeping an eye out for you. Am glad you have have your sister and plans for more family visits. So pleased you have had some well days and so just fucking well bloody done for dealing with all the uncertainty and admin. Not the same parent - maybe but an amazing one. Hope your chemo is as ok as it can be. Take care x

Long reply alert!!! My husband had cancer last year and our son was the exact same age. Although not terminal he went through chemo etc and was really quite poorly with long hospital admissions, DS saw daddy very poorly etc so I can offer some words of wisdom from that viewpoint.

Kids are very intuitive, be honest but don't offer too much information. Kids this age think in black and white with no or very little concept of time/passage of time. They also have no concept of permanace at this point either so what you tell them now would be so different to even 6-12months time. Death and dying up until about 5/6ish to kids isn't permanant and things can come back to life to them. Too much info will just melt their brain so don't go straight into the death part! Deal with the here and now to start with. Know your prognosis. You get news from the hospital, digest it, then put this over in a way your child will 'get' at each stage.

So we learnt for example that if we said 'daddies getting some medicine at the hospital and might be abit poorly' = in 3.5yr old brain 'medicine makes people poorly therefore hospitals are bad. Im not going to take medicine'. DS was also poorly and had to go to hospital during chemo time which needless to say didn't go well because of our niaivity and his little thought process. We did work on that (we both work in hospitals so luckily could broach this one easily) and he's ok with it now.

I'm so sorry OP. I think your ideas are lovely, I read somewhere recently that someone's grandma had bought all her grandchildren important presents and left them safely with their grandfather so although she wasn't here anymore, she was in spirit. So I think the Grandma did 18th, 21st, birthdays like the big ones. Then did engagement, weddings and baby cards for other major life events with cards that had lovely personalised messages and memories

We got a book called 'how to care for a very sick bear' which was really useful for us dealing with pain/nausea/fatigue/change in appearance. When I was looking there were lots of books about mummys with breast cancer etc that were excellent.

I bought a pack from the ?dragonfly trust (I think) with peg dolls, a cardboard hospital/house set up and emotion stuff age appropriate and if you haven't already got the colour monster book this is good for emotion naming and expression for this age.

Your local Maggie's centre will run groups/individual sessions or family sessions to support you with all this and your local hospice will support you and your family to prepare your all and helpmyou to be in your child's future as you would like to be and also just provide a sounding board for you and your worries. Your oncology team will refer you when needed or if you want to be. They are experts in this sort of thing.

One thing that I can't recommend enough is something called a yoto box - it is a story reading box really but you just place a card into the slot and it starts to read aloud and is perfect for little/medium sized hands. The beauty is that you can 'make your own' cards so you can record DC bedtime stories that they can grab and listen to as they wish, easily accessing and listening whenever they want to. It's just nicer than a voice recording on your phone or whatever and they can then also choose the story that mummy will read (you might have to do a few sittings and readings for the next few years of stories!).

Her life won't ever be the same but she will cope, your husband will probably rise up to the challenge as he will have to, he's probably struggling emotionally aswell and that will be the hardest thing, to marry up your responses when you both process this so differently.

I wish you all the best, it hard with little ones but you'll certainly be in her life, heart and souls for as long as she and her own family live on xxx