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.

@Onmyown1 I’m so so sorry you’re going through this now after 9 years. But you are right wow if I could have 9 years with my own DD I’d endure anything Thoughts for you and children.

I am so very sorry to hear this Mowly especially with such a young child. I have breast cancer atm with 2 children and about to start chemo. My DH is also from abroad and no family to help and he is good at practical things but not kids and 1 has SN.

I think your memory box / cards / videos / photos etc is lovely. Mine are older but they like to ask me what they were like at 2, 3 etc, where we went and giggle at the stories. I think mine would have wanted photos of us, stories about us, maybe advice on what to do when older like what gcses to take, what job - maybe generic stuff like follow your dreams and do what you enjoy, be with whoever makes you happy and treats you well and I will always love you and be proud of you. I have made a will and named someone in it I trust to look after the kids if we both die before the youngest is 18. That is really hard to do but does give you peace of mind but do consider the age of the people you choose and think would they still be suitable when you child is 18 and they are 15 years older. I am trying to teach my DH everything I do and also to put contacts in place he can ask for advice and that helps a bit. I also got jewellery for my children saying that I loved them so they have something if I die and they know they were loved.

I hope you can get treatment in place quickly. Re the chemo and any other treatment it is worth explaining if you are really scared. I am terrified of chemo and they gave me a choice of 4 different ones, obviously none are very appealing but there is a bit of flexibility in what they can do. I really hope it won't just be palliative. Sometimes things aren't what they seem, like I have loads of bone pain and they tested me for stage 4 and said its not its weak bones which is not great but a lot better than cancer. They told me if I was stage 4 they can sometimes keep women alive for 10 years.

I would just try and enjoy the time left with your daughter. I would not say you will die as she is so young but would maybe write a letter for when she is older so she understands then. Sending love and hugs. Royal Marsden have heard strongly recommended but have been told with chemo need to be within an hour of hospital if an infection, you can use other hospitals A&E but if your hospital is reasonable I would be inclined to stay local. You can get a second opinion on NHS and it may be worth getting one from Royal Marsden for treatment if you are concerned. If your local hospital is not good and you can do 60 miles without too much bother then would consider changing if can do it promptly. You probably know already but there is a cancer support thread (82 atm) under general health lots of us are on if that would help but do whatever helps you. I think there is also a Facebook Group called Stage 4 deserves more.

I'm so sorry. Your post makes me think of a friend whose wife died of cancer when their kids were 12, 10 and 3. We're in different countries so I can't observe closely, but I get the sense that he is coping better than many of us feared.

He did say that they had been able to discuss very openly what would happen as a couple. So I hope you DP gives his head a wobble and starts working the problem. There's a limit to what you can explain to a 3 or 4 year old about death; he will have to shoulder much of that later.

My friend mentioned recently that all the children's memories of their mum were somewhat skewed towards her last years, when she was ailing. So preparing a memory box, writing down some positive, important memories, giving you child a way to know you as someone other than a patient may be a good idea.

And I'll be crossing my fingers that you've got much longer than you think.

I’m so sorry @mowly77 for what you’re going through. I just wanted to write to say that I’ve got everything crossed for you. I had a friend who went through this and she was referred to the Royal Marsden, the drug trials there meant she hung on a bit longer, all in all they thought she had had a couple of years she wouldn’t have had otherwise (and this was nearly 10 years ago, could all be different and better now).

FWIW my friends husband has coped like an absolute champ; we were all worried when his wife died because he was a typical city boy, worked as a trader and was often out at work 15hrs a day. The domestic realm was just not his area. However he totally changed his life- gave up his job for something closer to home, got a nanny to help and dedicated his life to his kids. This was something he and his wife decided he would do before she died though. He says now that those conversations were so important, both so he felt he was doing what she would have wanted but also because she was at peace knowing the kids would have the upbringing she wanted them to have.

Good luck with everything; we are all rooting for you.

Thank you once again everyone … means a lot to me. I just hope I can actually do some of this stuff!!!!

and @BurnDownTheDiscoHangTheDJ that’s good to hear about your friend’s DP coping better than expected. We don’t have any sort of salary for nannies as we are poor as fuck and in fact today I’m hoping my sister will help me navigate what benefits we could be getting … but hopefully an informal network of people able to pick DD up from school when he is at work etc (he’s self employed currently not working as has been my carer since I’ve been unwell) could be good and help him get back to some sort of new ‘normality’ eventually

Hugs hugs and more gentle ones wish I could offer more advice.

@mowly77 I’m sorry to hear that- is there any life insurance/critical illness cover you might have as part of mortgage/job something else? My friend didn’t think theirs would pay out as it was a reoccurring cancer that she had declared when they bought the house, but they did in the end.

Am sorry you are feeling so unwell.

The Royal Marsden is the sort of place people tend to mention when they are looking for second opinions but the treatment you get there is exactly the same as you would get elsewhere, as cancer treatment is very standardised across the whole UK.

I used to work in the Marsden catchment area and their patients complained just as much as any others, and asked for second opinions in other centres which always made me smile having come from elsewhere in the country where patients would travel 100s of miles to go to the Marsden.

And as you rightly point out, if you feel exhausted, the last thing you want to do, is start trekking across town to have treatment.

Your local oncologist will also know exactly what the next step is and if you should be on a trial as they are all obsessed with them.

Finally your local cancer centre probably has a benefits advisor in it - it definitely does if it has a Maggies Centre. As @BurnDownTheDiscoHangTheDJ says, if you have a mortgage policy, or any critical illness cover, get your partner on the case as now is the time to start looking at them paying out. Again your oncologist will be well used to writing letters for these companies.

@AnnaMagnani having been through the Marsden I can assure you that our experience was very much not the same as offered in other hospital. Perhaps because we had experience with an extremely rare cancer, the Marsden offered totally different treatments to our local hospital and gave us a significantly longer time together than we would have got elsewhere plus the opportunity to be put forward for trials immediately without needing to do the research ourselves. At stage 4 the consultants were far more cutting edge than anywhere else although the Christie was not far off

This sounds like a truly difficult situation for all of you, and I am in awe of how good a mum you are to be putting your daughter first at such a scary time.

What I would add to this is when you are thinking about your daughter's future maybe think of close friends as well as family. Do you have any close friends who live locally who already have a relationship with your daughter that you think would co-parent well with your husband?

Hi OP, sorry to hear you are so unwell.

There have been a few mentions of ways to create memories for your daughter. A couple others that I have heard from a family friend is to record yourself reading story books so your daughter can look at books and hear you read to her. The family that I knew that did this actually recorded various books for various ages so as the children got older, then they heard mom reading chapter books then novels etc. Obviously she had the time and health to do this but it was something the children really valued.

The other thing the mom did was create a memory jar where she wrote all kinds of short or funny memories about their lives on little pieces of paper and put them in a jar. After dinner, they would pull a memory and talk about it. Others in the family could add memories as well. They actually started this tradition before she passed away and then continued it after she died. Sometimes as the kids got older they would just take the memory jar and read through the notes in it.

Also just recordings of the autobiography of your own life. As your daughter grows into a young adult, her interest in who you were and your version of life events about your own childhood, coming of age, adulthood etc will be important. She can get those stories from your family from their perspective but it also helps to hear it from your perspective.

I hope they are able to give you more time

I hope that you have plenty of good time ahead.

On what to leave behind:
Perhaps include something about mistakes made - disasters - stupid behaviour - things you wish undone. It is hard to live up to an angelic parent.

Yes to giving advice about having babies and bringing up children. 'Never mess with a self-dresser' is one piece we hang on to.

Advice on family Christmas cake - or gravy might be useful too. I have an old (much treasured) cookbook full of annotations (including warnings about the unpredictable heat of 'the mad cooker' and advice about doubling the cherries. )

Messages to be saved for special occasions through the years would be wonderful to receive. (A photo of you dressed for those special occasions of the future would be great - if possible. )

So sorry to hear this, hope you’re looking after yourself. There’s a lovely picture book that I’d really recommend called Only One of Me. It was written by a woman in a similar situation to help explain to her children both before she died and for them to read with their dad after she died.

@Avocadobacardi I totally agree that for extremely rare cancers these are all centralised into highly specialist centres. Then treatment will be completely different to a local hospital - however you should get sent there anyway by your MDT.

However even in London, the Marsden isn't necessarily the specialist centre for every rare cancer. Some rare cancers the specialist centres aren't even in London - which often comes as a shock to Londoners.

This doesn't apply to the OP who needs to just get started on a treatment plan near home.

@AnnaMagnani absolutely. Unfortunately the referrals don’t always happen. We had to take it into our own hands.

Most importantly, OP wish you all the best

I’m sorry for your diagnosis OP. It’s lovely that you are thinking ahead for your daughter.

Im going to go against some of the other posters though. As a child of someone who lost a parent can I suggest that you don’t buy your daughter jewellery to wear on specific special occasions. The pressure and obligation of that kind of gift is unfair. My surviving parent told me things that my dead parent wanted for me such as “I promised them you would go to university”, “They didn’t want you to have your ears pierced” “they wanted XYZ for your wedding” “they wanted your firstborn to have their name as a middle name ” etc. I felt for a long time that I HAD to do those things. It caused me lots of anguish and guilt.

I would rather have memories and a birthday card each year or something Non-obligational. Certainly if you want to buy jewellery that’s a lovely thing to do but not “here’s something that you must wear on your wedding day”.

@Mullercornershop yep no obligations for her to do / wear anything! She’s already incredibly strong willed at 3.5 so she ain’t gonna change - I will leave her my jewellery and some family jewellery … well it’s costume jewellery mainly …! But will explain it was her grandmas/great-grandmas and she can do what she likes with it. I just want her to have a happy life, and hope that my death won’t crush her happy go lucky, lively funny spirit. My own mother’s death fucked me up and I was older - but there were a few different factors there that DD won’t face.

@BurnDownTheDiscoHangTheDJ yeah no policy on mortgage no life insurance couldn’t get anything at all because it wasn’t just previous cancer it’s the fact I have the BRCA2 gene too. i will call Macmillan helpline when I feel up to it and get some advice on how to claim any benefits.

Oh if anyone has any thoughts about this my P - not DP - is being an absolute cunt now. He was patient and kind for a week but that was a record really. My family are here. He came to see me over at their Airbnb yesterday and said some very cruel and awful things to me that he won’t ever be able to take back. I understand he’s not NT and as such has no filter but basically … nope. I said I didn’t have energy for relationship drama as all I could do rn was try to navigate my own health pain and the NHS and DD? & I playfully called him a drama llama to try and lighten the mood. He is. He’s intense; he says crazy dramatic things. He came over here like the Angel of death himself and stood at the end of my bed started talking like I was already dead and buried and then got really angry and said if I ever called anything “like that” again “I’d get no more support from him ever again”. Yes he threatened me to remove care and comfort for me, a woman with terminal cancer. There was more but can’t bear to think about it all. He bumped into my dad in the street just after and said that I had ruined his day! And that he “wished this was all over” i.e. I was dead already. Obviously mind blown and very upset.

I’m staying here now (it’s across the street) and my dad’s such a trouper, he’s sleeping there.

You poor poor thing.

Is there any way you could have one of your sisters as her permanent guardian - I know he is her father but from reading this (and I do remember I think from previous posts) your sisters may be better placed with visitation from him

@Quartz2208 they live in the US. I don’t want to turn her life upside down anymore than it already is. When my mum died she was a single parent; the uncle and aunt stipulated in her will to take care of me didn’t want to; no one thought to try to track down my dad & I was fostered by family friends. I lost not only my mum but the only home I had ever known and my cat and all my mum’s things.

So too much upheaval I think.

Oh @mowly77 it breaks my heart to read that.

Honestly do you think he can do it though - without intervention. Because if you do great/wonderful.

But if you arent - surely some upheaval at the beginning could have a benefit. Are they aware of all of this

Everyone’s aware. He’s more contrite today. I’m feeling worse today physically but got all the relevant meds to sort myself out and hopefully they will start to take effect. Monday likely they will call me with treatment plan from hospital. I’m terrified it will make me sicker (it will … having had chemo before) & I miss being a mother to my daughter so much already. But that’s all part and parcel of this awful journey

@mowly77

Everyone’s aware. He’s more contrite today. I’m feeling worse today physically but got all the relevant meds to sort myself out and hopefully they will start to take effect. Monday likely they will call me with treatment plan from hospital. I’m terrified it will make me sicker (it will … having had chemo before) & I miss being a mother to my daughter so much already. But that’s all part and parcel of this awful journey

@mowly77 How are things today? Have you had a call from the hospital yet? Hope your family are staying for a bit longer and can be a support for you... I'm sorry your partner has been so awful to you, it's the last thing you need. We're here to offload to if you want to / feel able to ...

I’m so sorry about your news that is unbelievably unfair . I would recommend Winstons Wish with regard to preparing your daughter. They were brilliant in a similar situation that so know of .

Hi OP apologies I'm just catching up.

I saw your comment about restarting chemo and about feeling more ill. Obviously every person is different but my friend was given six months around nine months ago (stomach cancer). It looked very much like their prognosis was spot on but she started chemo six weeks ago for symptomatic relief and she's got a whole new lease of life.

She couldn't tolerate the chemo before and had to bow out of treatment altogether, however this time is completely different and in the most wonderful way. I hope and pray that this works in exactly the same way for you and it makes things much better. 💕