Keeping cancer diagnosis secret from children

[CompromisedConnie]

DP was diagnosed with a life limiting but not life threatening cancer (CLL) 12 months ago. He doesn’t want me to tell the children as you wouldn’t know to look at him. Children are 9 &16. He is young and it’s been awful for us. I support him and we have come through the worst of it. Prognosis is good.

However…

I cannot talk to anyone about this as he doesn’t want children finding out. I support him but there is no one to support me. I’m not being honest with my children or family and it’s really upsetting me. We argue about it which is putting strain on our relationship.

Would I be unreasonable if I told the children and went against his wishes?

Be honest with both of them @CompromisedConnie . It will get out. They will find out. I’ve been in the 9-year olds position. If I’d known more at the time I would have coped better. He might be trying to protect them now but it will backfire at some point.

I knew my mum was sick because it was impossible to hide. I was 7 and had come to my own conclusions. Someone telling me she’s was getting better the week before she died was incredibly unkind. I’m sure it didn’t come from a bad place but it really messed with my head.
The whole lack of clarity just left me to try and make sense of the information I had.
Children can cope with almost any news if they get clarity and can ask questions. Your DH isn’t doing anyone but himself any good right now.

Please tell the children but get advice on how to explain, especially for the younger child. Your elder child may be very angry about being not told

I’m sorry you have cancer….I’ve had primary cancer 3 times….I’m NED now….never once have I lied to my children about my diagnosi , treatment etc…..I can’t speak for your children….but my DD who was 14 first time round said to me after I had told her….never lie to me Mum…always tell me exactly where it’s at….and now she’s 31 and she tells me that she would have ended up with trust issues in her adult life if I hadn’t told her…she says if you can’t trust your parents to tell you the truth then who can you trust in life….food for thought…..I wish you the very best and hope you stay as well as you can for as long as you can

To add to my earlier post, my husband‘s CLL was (and still is) defined at the time as high risk because of his youth and because of his blood work. It’s also not like very aggressive forms of blood cancer. it’s considered chronic because it normally presents in older adults - hence the belief that you’re more likely to die from something else. If you’re younger, it can be more aggressive (than usual.) But in my husband’s case, this has also not proved to have developed. (I do work with someone who bizarrely was diagnosed with CLL 25 years ago also at 43 and he needed immediate therapy and has needed pretty consistent therapies since…)
Part of the challenge of this is learning to live with no knowing how or if it will progress. In our case it started to, but that progression has reversed in the last few years.
However, even with no current acceleration, his immune compromised situation has been challenging. Covid was terrifying and he has been hospitalised with flu earlier this year as his immune system was not fighting it at all.
The upside of covid is the avalanche of new therapies and treatments for the suite of blood cancers, CLL included as a consequence of all the studies into Covid and blood diseases.

I think you need time to process this and I strongly advocate for own support. Your local hospices will provide both of you with talking therapy if you want it.
For us our elder child did know about her dad after a few years and before our son. Even when we eventually explained it in a child friendly way (Covid-necessitated) he didn’t understand until quite recently.
This is not a one sized fits all and it‘s ok for you and your husband to take some time to adjust to this. Nothing has to be said or done quickly. There‘s no right or wrong in this - you know the personalities of everyone involved and the specifics of your husband‘s diagnosis. Take your time.
Sorry for another long message.

Another here suggesting that you tell the kids.

I told my then 7 yo that his dear grandad ws ill, but no detail about what was wrong or that it was irrecoverable. DS is still struggling, 3 years on with the fact his grandad is no longer with us

This.

A friend with 2 DC had breast cancer. The DC were primary school age, and she had chemo etc, lost all her hair and was pretty ill for a while (she's fine now). They live a fair distance from us and we hadn't seen them for a bit, just kept in touch remotely.
Then they came to a party we had, and we commented on how well she looked, and said how great it was her cancer treatment had worked - and her DC both looked horrified and asked if she had cancer! I've no idea what she'd told them, we just assumed they all knew! It was really awkward and he kids were pretty upset.

I understand your DH's point of view (both DH and I have had life threatening situations where we've told our DC the emergency surgery was 'just routine' when in fact we were lucky to survive), because he doesn't want to worry them. But there's a strong risk that someone else will say something, which will upset them more...

My mum had breast cancer when I was nine and developed chronic blood cancer six years ago. She did not tell my brother (who was four at the time, so I think right) about the first diagnosis but she did tell me. It was the right thing to do and I think it generally is, unless there is a very good reason not to.

Actions have consequences though, and the consequence in this case is that the children (16 year old in particular) are likely to be immensely resentful when they learn this was kept from them, towards op as well as their father. At that point it doesn't just impact the person with the illness, it impacts everyone in the household or immediate family and it's then not reasonable to ask a spouse to keep it secret imo because it's their relationship with the kids being damaged, not just the ill person.

Wider family - I completely agree with you.

As someone whose parents were not open and honest about their cancer diagnoses when I was a young teen, please tell your children. I struggled for years with anxiety because of their secrecy and it still impacts our relationship 25 years on.

I'm a Macmillan haematology clinical nurse specialist. My advice would be to call your husband's CNS and have a chat with them if you need some one to talk to.
Many people with CLL live a long healthy life without ever needing any interventions for their CLL. Some do go on to need treatment of some description. The children may not benefit from knowing just yet if he is fit and well. Happy for you to message privately (obviously I cannot be too specific with advice as I am not his CNS, but happy to chat) xx

I would be absolutely furious if I found out you’d kept it a secret from me. They need to know. I’d be worried about what else you were not telling me.

The problem is someone will find out and mention it. They'll see your DP going in / to of the Oncology department, mention it to a neighbour who works with your cousin and 6 degrees of separation later someone at school says to your 16 yr old "hope your dad is recovering well" and bang, you have a major fallout on your hands.

I get it - people want to keep things private but that's simply not possible and the fallout can be long and profound.

Can you arrange a session with a Macmillan nurse for both you and your partner to talk through ?

@Greggsit I agree with you wholeheartedly. seems we are in the minority, but you do what’s best for your family don’t you.

I’m in the same position as you. I have cancer which has spread around my body. My cancer is treatable, but not curable. i haven’t told my children (age 8&10).

I have however told my family and trusted adults. We don’t discuss it in the house if the children are home. My treatment is weekly but during work hours so the kids have no reason to know. It barely affects my home life. I’m very thankful for that.

I will tell my children about my cancer when I need to, if my health deteriorates and it affects my home life. Until then, I want my kids to have a happy life, not worrying about if their mum is going to die.

everything I do is for my kids. I’m sad to read that some people on here resent the person in their life who was ill and kept it from them - They were trying to protect you. I hope you can forgive them if you have been hurt by their actions x

I don't think this is a good approach at all. I appreciate it's not what you've chosen. If it was a new diagnosis and given that it's not time-critical, I think it would be fine to give him some time to process. He's already had a year though. Have you talked to Macmillan? They might be able to help you discuss this as a couple. Your children are far too old to be shielded from this diagnosis. Having a parent with cancer is really tough, but hiding a diagnosis like this is really unkind and inappropriate.

It’s not your place to say unless he agrees.

I haven't read the whole thread but it's possible to live with CLL for many years without needing treatment so I don't see any point in telling the children now.

even if that means your kids end up fucked up with trust issues and anxiety for the rest of their lives because the 2 people who are supposed to be there for them didn’t tell them the truth

I think people are missing the point - this is a CHRONIC illness, he’s highly unlikely to die from it and the treatment if I am correct is daily tablets. He looks and feels well.

it is TOTALLY different to an agressive cancer where the person is likely to go through obvious and invasive treatment and to feel ill.

All this BS about kids never forgiving you. It’s a chronic blood disease no more scary than something like diabetes.

I agree with your husband there’s no rush to tell the kids but I probably would look at how you discuss it with your eldest and I would frame it very much about - wanting to talk to him about dad. He has a problem with his blood, it’s nothing you need to worry about but it is a blood cancer. It’s extremely treatable, he is taking daily medicine, he’s not ill in himself and whilst he’s going to always be on medication it’s a chronic illness a bit like diabetes where you live with it and carry on as normal

i probably wouldn’t rush to tell the younger one or at most tell him dad takes tablets for his blood

if your husband is on no treatment. I would frame it to your 16 year old that you wanted let him know in case he heard people talking that dad has a non life threatening blood cancer which doesn’t need any treatment at this point and it’s absolutely nothing to worry about and if that changes you’ll let him know but he’s not ill they just need to keep an eye on him to make sure it doesn’t change and even if it does it’s something that is totally treatable

As someone who constantly breaks challenging news to families with children. Please tell them if anything does change which it unfortunately can they need to know how to process bad news in an age appropriate way.

I do get the point but I think that you are missing the point that if someone sees Dad at the Oncology clinic and mentions it and word gets around (certainly would where I live, small town) then all the kids will know is that people are saying that Dad might have cancer.

Better than they know NOW that what he has is technically cancer but it isnt the OMG kind that can kill you in under a year. Armed with the full facts of his condition and the prognosis, which is that he is more likely to be killed by a runaway horse and cart than his CLL, will leave them better prepared if they hear speculations like this. And people being people (and some of them being total arseholes) someone almost certainly will start that rumour/gossip.

You should definitely tell your children - but not without his say so.

what a dilemma.

i would worry the 16 year old in particular would find this unforgivable

He won't be attending an oncology clinic he will be under the haematology department. He will be having regular blood tests and as long as his results stay stable he possibly won't even be seeing anyone.
It really is different to the majority of cancers.

My two were 7 and 9 when I was diagnosed at 39. The hospital gave me a kids book setting out the various treatments I would have. The treatment is so gruelling it would be in impossible not to tell them. I gave them the book so they can take it in in their own time. I think I just said I was very poorly and would have song medicines. I think they realised it was cancer though.
This was the book I mentioned.
https://www.google.co.uk/aclk?sa=L&ai=DChsSEwjj7PX4_rORAxXDllAGHQIzAVwYACICCAEQBxoCZGc&co=1&gclid=CjwKCAiA0eTJBhBaEiwA-Pa-hZkHLJMMaVKhSOaN3Kh4bTeE_N2OTovHAg2GknUYQPRuTRUSN8iiKxoCgAEQAvD_BwE&sph=&cid=CAASJeRos4oJ6Mw6Lt8w5yWd0W_ADSXXHQhC8DBpZwfDx4TqM5U98eU&cce=1&sig=AOD64_3xD18Tevoap6ZC4Dh5MbbAFnXYzg&ctype=5&q=&ved=2ahUKEwjLxu_4_rORAxVwQ0EAHTgjEKMQwg8oAHoECAcQDQ&adurl=

Illness is not private when you are part of a family. It is a shared experience whether intentionally or not. Lying to your children is wrong. Your husband is being really selfish here. Kids are perfectly capable of understanding that there are different kinds of cancer, dad has a kind that isn't a big deal right now but it needs keeping an eye on. Not sharing that with them risks permanently damaging their trust in you. I've got a serious long term health condition that sounds extremely scary. I could probably just about hide my condition from my five year old and make up lies about why I'm under the weather from treatment, but I don't. Because talking about it makes it less scary, not more scary. He's five years old and he's interested in how the treatment works and wants to come to the hospital sometime to see how they do my injections. And as he gets older he's not going to be stressed out about what's going on once he notices that I'm different to other mums and they don't go to the hospital and get so poorly, because he knows what's going on and he knows I might be under the weather sometimes but I bounce back.