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.

Thanks for everyone’s comments. I’m feeling really really depressed and heartbroken at the moment but trying to do a few things when I can. I should hear from the hospital later this week about a treatment plan and I’m going to try to get a referral to Marsden for second opinion or at least a way I can possibly be on their system in case any trails or meds or anything my local bog standard hospital can’t offer comes up. I’ll talk to my local bog standard hospital about this however first as don’t want to delay any treatment.

Hi OP I've been thinking about you. I hope you've had your call about a treatment plan and they're ready to get going and help you feel better 🧸

Still no treatment plan actioned although it’s on the computer after their meeting on Thursday and the cancer care nurse - after I chased her - went into the notes and read it to me. Now they are saying two week wait to see oncologist and arguing about date of diagnosis as date I was diagnosed (4 March) was not “official”. Honestly I’m going mental and I yelled at my useless consultant on Friday and hung up on him. If I don’t get an actual oncologist appt next week to sign off on this plan; get a start date; get it in writing and get a second opinion from the Marsden I’m going to go absolutely crazy and will not be responsibility for my actions. I feel really let down by the NHS at this point as everything has been delayed & delayed. Considering begging borrowing or stealing to get an appt with private onc next week if they are still giving me crap about a 2 week wait. I’m in a lot of pain and can’t get up and do anything with my daughter and this morning she was really really upset I couldn’t. I got up and made her breakfast but she wanted me to take her to the playground and I just couldn’t and my heart is in a million pieces right now.

I'm so sorry to hear you're going through this, and the family issues on top!

I think it's a wonderful idea to leave things for your daughter. We've recently started recording family members reading stories for our children after a friend lost her mum suddenly. We use the yoto cards so the kids can pop them in themselves when they want to hear someone, and there's a back up MP3 in the app. I've also written notes for both of mine to go in with my will telling them how wonderful they are and how proud I am of them. Videos are also a great shout - we still look back at the ones we have of my grandparents on VCR and they bring back happy memories. I remember seeing a thing online somewhere of someone who had a build a Bear that had her mum's voice recorded on it saying I love you which was a treasured possession even as an adult but worth checking how long the battery lasts on those.

Maybe you could also do something like a little parcel for special occasions so something like a onesie for her first child and a photo of you holding her as a baby? Tangible things that can make her feel like you're there. Obviously wrap it carefully and store somewhere secure, I'd go for a zip lock bag and then potentially a fireproof safe if you can. Could you ask your dad to look after it all as it sounds like your partner perhaps isn't capable?

Wishing you all the best with everything.

@Isonthecase Thanks for your kind words. Yes when I feel better I'm going to slap some makeup on and make a few videos for my DD; reading some books; telling her how proud of her I am etc. I've already written a few letters to an email address I set up for her & I'm slowly trying to write my life story / my side of family history. I don't know what yoto cards are but will find out! I will leave multiple copies either on MP3 on discs etc or on these exciting-sounding yoto cards with my sisters and my stepmom & dad who all have fireproof safes, as well as my partner. I'm planning on painting/leaving birthday cards etc and a few little presents in a box too & relying on my partner to give them to her! My sisters will remind him. Thank god for them.

The onsie with a photo is a lovely idea. Thanks again x

Hope that RM has some options. My friend is in a similar situation and is on a trial, 2 years in now - nobody can conclusively tell her whether it's working or that was the natural track of her illness but she counts the months as bonus's. Her DD's are older and unfortunately do carry the gene too, it's cruel

So glad to hear you have a plan now and can focus on treatment.

Well I have a plan on a computer apparently @Isonthecase but no one will action it and telling me a two week wait to see an oncologist to discuss. I’m beside myself with anxiety and every day this cancer is growing inside me and I am in more and more pain. Getting ready for tomorrow and more phone calls that will probably be useless. Just awful situation all round really

@mowly77

Well I have a plan on a computer apparently *@Isonthecase* but no one will action it and telling me a two week wait to see an oncologist to discuss. I’m beside myself with anxiety and every day this cancer is growing inside me and I am in more and more pain. Getting ready for tomorrow and more phone calls that will probably be useless. Just awful situation all round really

(Im a pp StringFellow but have name changed) I’m so sorry things are so hard.. Are your family still about to talk to?

Definitely be very fierce with them tomorrow about needing certainty and an appointment quickly. Are you feeling well enough to do that? I’m sorry I don’t know what else to say that’s helpful

Hi @PingPages yeah I’m feeling pretty fucking fierce so I will. My sister is sticking around but my Dad is leaving on Tuesday as they run their own business. So I’m really gutted about that as we’re really close and he’s been amazing at looking after me & generally being a cheering presence in my life and his granddaughter’s life.

He wants to get me over to the US ASAP to stay for a few months but I don’t think any of them really realise exactly what my diagnosis means and what a long slog it will be and how I will need access to hospitals over here etc as we don’t have the money for US healthcare. But hey everyone will get there in the end. I don’t think they want to face the fact that it’s incurable and totally unknowable how long I will live - and that’s ok.

I'm so sorry to read this OP - a stage 4 diagnosis is just absolute crap, and especially so long after your primary cancer.

What type of breast cancer do you have? Depending on the type there are still lots of possible options available, different lines of chemo, targeted therapies and immunotherapy is also finally starting to to emerge for breast cancer as well.

I agree it is worth getting a second opinion. I know of several women who got second opinions of their scans at the Royal Marsden and also St Barts and were told quite different to what their own oncologists had told them. Even if you are happy with your onc, at stage 4 it can be worth a second opinion just to feel you are getting the best care.

I don't know much about it, but I think there are apps/computer programmes specifically designed for terminally ill parents to make recordings for their children.

Just looked at it, it's called 'RecordMeNow' and it uses specific prompts based on questions that bereaved children wished they knew about their parents. You might want to look at it a little further down the line.

At the moment I guess you just want to know what you are dealing with - it's very frustrating when you don't the plan.

I'm so sorry

I'm so sorry you're going through this. I hope the appointments you need come through soon and they make a positive difference.

Hi @mowly77 just checking in, how are you doing? Have you seen the consultant yet and had any certainty on the way forward? Hope you’re ok

Thinking of you @mowly77

I hope you have started treatment and gotten a referral / 2nd opinion from the Marsden

So sorry what you are going through @mowly77, I pray for God to strengthen you during this difficult time. Hugs to you and your sweet daughter. I have a 3 yr old and I know how it is when they don't get to go to the playground when they want to.

OP for being in such a crap situation. All the other posters have thought and suggested brilliant suggestions for gifts and memories to let your DD know that she was oh so loved. And you have already given your DD that important time of those first few years when a baby needs to feel loved and secure the most.

Complete sympathy over your ‘D’P. I’ve always known that mine would not be great on his own. He loves our DC but just no. I used to think of who he could remarry. The ASD people in our wider family are also self referential so I get what you’re saying. Not selfish and not narcissistic or anything calculating. Just can’t help but think of themselves first.

Would or could your single sister be able to come here for a year to help look after your DD? Could your wider family crib together to help her to do that? Sending ❤️❤️❤️

Also still here

Just read your thread.

I'm so, so sorry for you and your family.

I hope that the nhs is now helping you.

Sending you all strength and

Your kind words do mean a lot. Thank you for just still being here @PingPages

The NHS is not helping me at all @Vintagecreamandcottagepie & I haven’t been able to start treatment locally which was scheduled for Wednesday. And I had an appointment for second opinion at Marsden scheduled for Monday I have also had to reschedule. Utterly heartbroken & reason is I’m currently having a total mental breakdown on night 3 / day 4 of being in A&E & no-one knowing what’s going on. I started vomiting and got progressively sicker and sicker at home until so dehydrated had to come in here. I am having everything IV but something, they don’t know what is going on with my liver, and I’ve had 2/3rds of a blood transfusion ( hasn’t worked anyway) and the last bag hasn’t turned up from London as promised tonight. Have to beg for pain relief ; to see a doctor; it’s hell on earth here. Things have really gone south since last I looked at my notifications. I’ve been popping in and out of a general cancer care support thread but obviously all cancers all stages but really supportive.

I haven’t been able to implement most of what I’ve wanted to for DD and I’m even seriously questioning if I’ll be able to see her start primary school in September.

Total total low.

Sending you so much love. 💗 You are handling things really well. 🌺

So sorry for what you are going through. Get to the Marsden as soon as you can, they could have more treatment options available to you 🙏 keep fighting. Sending you love and very best wishes 🤗