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.

Im so sorry youre going through this. I think your husband might possibly benefit from a support group.

I think at 3, id probably talk about heaven and people watching down from the stars etc as it would be more comforting and more gentle.
Make sure there are videos and photos and voice recordings. Maybe of you reading a story or singing some songs. Or a nice conversation or you laughing at a joke etc

@Nelliephant1 Thank you so much - will look her up.

I'm so glad you have a lovely supportive family and it sounds like they would happily be involved, provide support and respite from parenting for your DP, plus female care and role models for your DD, if needed.

I'm sure this is the worst time as you wait for your prognosis, treatment plan and information about what happens next. I expect your DP is reeling from the news and will find it hard to process his feelings and join you in talking about the future, whatever that may hold. Knowing that you have a loving family though, who will support you and your DD and help out, should bring him some comfort too as you all work your way through this.

There are new treatments, certainly since you first faced cancer 10 years ago, and hopefully these will offer you some good options. Immunotherapy, for instance, is now offered on the NHS alongside conventional treatments.

I found this list of books on the Marie Curie website. I don't know if any will be useful: www.mariecurie.org.uk/help/support/diagnosed/talking-children/books-to-support-children-when-someone-is-ill

When the shock has subsided and you know a bit more about what the future holds in terms of treatment and timescales, would your DH go to counselling with you to discuss future plans for DD?

I totally understand your reservations about his parenting. And it is an important topic that he should engage with so that when you are very ill you won't also be stressed about what the future holds for her.

Also I wish you the very best of luck with treatment and outcomes for your cancer.

You sound so wonderful and I agree a how to book for your DH is a good idea. My grandmother died when I was quite young but she wrote her memories of me in a book. So funny things I did or said, times we had together. It is very special and I can read bits whenever I like and also pass those stories on to my dc. You will know I think when the time is right do do all of these things.

My best friend lost her mum as a young child. One of the hardest times was when she had her own children. So maybe write her some letters for when she is a mum at different times. I know that would have meant everything to my friend.

[quote mowly77]@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.[/quote]
Would your DH consider moving to US so he could co-parent with your family?

Definitely speak to your team first before any decisions. My Dad told us 2 and a half years ago now he had terminal lung cancer and that there was no cure but the doctors would fight hard to give him as much time as possible. He has had chemo radiotherapy and immunotherapy so far and has remained reasonably well throughout. Enough to work for the most part still go on holidays ect. Keeping my fingers crossed for you that they can give you as much time as possible to spend with your DD.

I am so sorry what you are going through ❤️ I can’t imagine how you are feeling, It is truly heartbreaking, is there a piece of clothing of yours that is your daughters favourite, get this made into a quilt or cushion for her xxx

Hugs x
Get help. MacMillan. Winstons wish. Edward trust and many other childrens charities are there for exactly this. Getting the message right and at the right time x

It’s heart breaking to read this post. I can’t imagine how you are feeling right now.
On the positive side, one of my friends has lived for 5 years now after having a stage 4 terminal diagnosis in 2017. Yes, she is in pain sometimes and she is on a cocktail of drugs including chemo, but she is currently studying, has joined a walking group and she has umpteen dogs and a pony. No children in her case.
On the other hand, I lost a good friend to cancer, her children were older than yours, but I do know that she has written them letters to be opened on their 18th, 21st birthdays, on the birth of their first child etc, and she also bought them gifts for each milestone event. She left these with her mother to pass on at the right time.
When she was well she had many holidays with the kids and took heaps of photos. She also had a Facebook page which is still open years after her death, and she encouraged all her friends to write their special memories of her so that her kids could see them at a later
date.
Please, please speak to your friends and tell them of your worries, I’m sure they will want to be there for you and your daughter. xx

@Liveandkicking It's possible ... he's just processing ... I think at some stage, later, when we know what we're facing, and if I am well enough, we all get together (my family are already poised to fly out and come & see us & help us) & try and work it out. I think he is slowly accepting that what is best for DD comes first. But as PP have said ... this is the worst time. A huge shock.

@tootiredtospeak Thank you. That's really comforting and helpful. I am so glad you are still getting to spend time with your Dad. We're just in total shock & it's a bit of a fucker because diagnosis Friday night so nothing further to be learned until Monday. And even then, from previous experience, I know there's a bit of an NHS wait until all and any biopsies, treatment plans, etc. kick in. But I am trying to prepare for the worst whilst also keeping my mind open to positive stories like your dad. Wishing you and your dad all the very best.

@Liveandkicking Funny you should say that as my mum died when I was 10 and one of the hardest, most unexpected things was missing her again so much when I had DD. You suddenly have a whole new perspective, and for me it was so heartbreaking. I was so in awe of what my own mother must have gone through & so, so sad for her. She had breast cancer in the 1980s and it was totally taboo to talk about it then. No proud wearing of bras on cancer walks; no nipple hats; no mainstream support charities plastered everywhere etc. She was a single parent & I found out later she didn't even tell her work.

That's another really good idea to add to the list - letters and advice for when and if DD becomes a mum herself. Thank you.

I recommend the app Record Me Now which allows you to video yourself answering a range of questions about you from family background, school days, work and love. It’s a free App which was created by someone terminally ill to leave his family.

I bet it is my dad found out in October and we were imagining our last Xmas with him that year and everything. Now dont get me wrong there is nothing wrong with being pragmatic however modern medicine is an amazing thing. There is always hope ❤

Well, I know MN is well known for being a nest of vipers & there's nothing I like more than getting stuck into a juicy AIBU. .. but my heartfelt thanks to everyone who has posted on this thread. So many great stories and advice to get me through an insane day. I've had a lovely chatty bath with DD and now time for a . to you all.

Hope it’s ok to post this but just to give some hope this woman has been living with stage 4 breast cancer since 2009 x www.howtoglitteraturd.com/my-story

Wishing you and your lovely daughter all the best OP.

I have had stage 4 breast cancer for 9 years. It was also in my lungs but chemo and other treatment got rid of them. Unfortunately now it’s spread everywhere and I’ve been told to get my plans in place for my children etc as there’s nothing more they can do (I’m a single parent). I’m in liver failure due to the tumours. My children were 1 & 2 when I was diagnosed. I’ve just bought them up knowing I have a disease called cancer. There are childrens books that will help you explain it to your daughter in a child friendly way. You automatically think you have no time with a stage 4 diagnosis but see what your oncologist says. There may be a few treatments you can try. My fingers are crossed for you x

I am so sorry, I am left with no words by the way you're handling it and of the way you're thinking of your dear darling daughter.

I would definately ask a child psychologist on how to deal with everything and if possible, make arrangements for you two to start counselling together, and she can continue later on... I am sorry it may be a stupid advice but it's the only one that came to mind. you're so strong x

How did the phone call on Monday go @mowly77?

Thinking of you OP and hoping.

Thanks for asking @StringFellow there was no phone call; or rather there was, but just to tell me the CMS team meeting was actually on Thursday so I may get a phone call Thursday after 6 as it runs late but maybe Friday. More waiting. I deteriorated really badly since starting this thread - I couldn’t even read MN let alone type! - so have been back to hospital twice now again to try to get a medical regime in place and antibiotics and fluids pumped in me and laxatives and all sorts. I’ve mainly been in intense pain and coughing and out of it on morphine whenever possible. last night was the first time I’ve felt well enough to pick phone up and reply to some of these messages again though. I feel like I’m already on palliative care pathway frankly but of course I’m trying to stay calm and see what they say on Monday. Sounds likely it will start with chemo if anything. Whyyyy chemo I have enormous PTSD from chemo from first time. Radio I would have accepted more readily.

One more question if anyone knows : a friend is adamant I should get referred to the Royal Marsden. If there is treatment available that is. I live 60 miles away from London now and it seems like a world of pain. I’d do it if it was a definite like oh yeah you can have X drug trial there that might help but if anyone has any thoughts or experiences with different hospitals or being still able to go for newer or targeted treatments at the RM etc ever a being a possibility and having general cancer care at my local is that a possibility? The thought of going to London for treatment seems like flying to Jupiter and back right now but I appreciate this could change if I started to feel better.