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?

Welll I think he's making a huge mistake not being open and honest with them both. Hopefully he'll realise this soon. Perhaps he's in shock still or just worried for himself or just trying to come to terms with it all.

But the prognosis is decades, and if they pick on something being wrong by finding medication or clinic appointment letters etc, or by just sensing that their dad isn't emotionally himself then they could just assume that it's a much more acute form of cancer and think that their dad may not be here this time next year. That could devastate them much more than the truth of it, and imagine if they kept their thought to themselves because they didn't want to let you know that they'd "found out". Awful for them.

Or imagine how they might feel if they have normal teenage clashes with their dad, or even have a major falling out and not be in touch for years, imagine how they'd feel if their dad's health took a turn for the worse and they'd wasted all those years not talking to him, or being a brat or whatever, or blaming him if he was restricted in activities in any way which impacted on the family. It would be devastating for them and could mess them up emotionally for the rest of their lives.

Then there's his immunity. It could be affected by treatment etc. If the kids knew the full picture they would want to help keep him healthy by practising good hand hygiene etc. They'd feel upset if they found out the full picture later and could end up blaming themselves for being slap dash with coughing all over him etc.

Education about it is the best policy, in age appropriate explanations. He will be able to reassure them instead of them worrying about this big "secret" that they will pick up on.

But while I think all these things, I also think that you can't go over his head. You need to try to persuade him to come round to your way of thinking.

people often forget, when someone is ill, they are not (one hopes) in a vacuum. They have family and friends. And while it is not the family who are going through the illness physically, it does affect them too. They are seeing the side effects, they are seeing the mood changes etc, and this does make an impression. Children often blame themselves if they don't understand why there is a change at home.
My mother was first diagnosed with cancer when I was 12. We were told that she was ill but not the details. When i was 16 and it returned we were told with more details, but only because this time it was terminal.
They do not need to know details, necessarily, but this does depend on the child.
But it should not be told behind your DH back, as it is his "news" to share.

I wrote my response as someone whose mum had breast cancer when I was 17, another unrelated breast cancer about 10 years later, and then acute leukaemia when I was in my 40s. She kept me fully in the loop each time, and we were able to support her and ask questions, and be reassured, and sympathetic about treatment etc.

My husband had a blood cancer. He had a stem cell transplant. My son still does not know the full story. We fou d out he was ill when son was about nine. There is a lot of watch and wait with blood cancer so I didn’t want to worry him unnecessarily. My family knew and I told a few friends.

That's rather jumping the gun, that link. CLL is not at all like acute leukaemia.

YABVU OP. The person with cancer gets to decide who they want to tell. I wouldn't want my children knowing either, if it wasn't terminal, and would find it unforgivable if DH told them against my wishes (which he wouldn't.)

Talk to a therapist if you really need to.

CLL is generally thought of as a chronic condition the same as diabetes is. I was diagnosed 2 years ago and am now having treatment after being on ‘watch & wait’. The treatment I have opted for lasts a year & I am fully intending to return to work in a couple of months. The remission should hopefully last 6+ years. I told my children at the time of diagnosis, although they are a bit older than yours, and they took it in their stride.

Yes, absolutely. There is no reason to refer to it as cancer. There is absolutely a need to explain the difference between acute and chronic leukaemia, and stress that "chronic" conditions generally mean conditions that can be lived with longterm, with treatment.

The things is, you have had a traumatic year. Your DH has had to come to terms with this new, altered reality, of his body betraying him, even, of an illness that has most people terrifed about getting. He may just need more time and counselling. Given his prognosis is quite good, why don't you readdress discussing telling your children in several months time? Sometimes taking the emotional pressure off is enough to be able to breathe and then think more logically.

If it helps, we have not told my parents or my siblings about my DC's potential life-limiting illness and my DH has barely discussed it with his family over the last year. This is because we, as a couple, do not want intrusive questions or unwanted visits (we live overseas), and definitely no alternative medical treatment recommendations. It means we isolate ourselves more but we are also happy how we are coping so far, and will revisit it later if we change our minds.

What has been suggested by many posters is that if you tell your children in spite of your husbands wishes, it could well destroy your relationship.

I have cancer. Have been very open with my teen. It’s brought us closer together and allowed an open dialogue and no secrets Which I feel helps him feel safe with me.
. I think that the children should both be told. This is not only his private information, it’s also a parenting decision about keeping secrets and I don’t think it should be entirely up to him. However, I wouldn’t just tell them without his agreement. So I guess I would continue to talk to him but i feel it is not reasonable for him to demand You keep such a big secret from your family and children. They will assimilate the information fast enough and not see him particularly differently once they have got their heads around it a bit. Maybe he just needs a little bit longer, but I think he’s being quite self-centred and a bit macho.

I don't think it's right he's hiding it from the DC and I don't think it's right to not allow you to talk to anyone you know about it but it would be a bigger wrong for you to tell the DC against his wishes.

You need to be able to access support and whilst you can do this with group support with strangers etc it would be much more beneficial to be able to lean on friends and family who love and know you. Yes it's his diagnosis but it does affect you as well.

Keep talking to him and try and get him to see it from your side (whilst listening to him and seeing it from his side) but don't tell the DC behind his back

Please tell the children. I say this as someone with cancer (unfortunately, mine is potentially life shortening) and as someone who lost a parent to cancer.

My dad was unwell for a year and just buried his head in the sand. By the time he was diagnosed, he was stage 4 and terminal. He died 4 weeks later. I was 18. He told me he had cancer, but no one ever told me he was dying. He looked completely fine, was living independently, getting on with life. One day, felt particularly unwell, drove himself to A&E, was in a coma by the next morning and died later that day. I never got to prepare or say goodbye. All because none of the grown ups in my life had the balls to have a hard conversation.

I told my children about my diagnosis within days of diagnosis (they were 6 & 11 at the time). They deserved to know and understand what was happening to me because I’m important to them.

It’s a brutal thing to go through and you all need support. You can’t get support if you can’t talk about things.

It sounds like he has a very low risk form of CLL. In which case I can totally see his point as he probably doesn't even feel ill.

The biggest risk is one of the kids seeing a letter with leukaemia on it and jumping to an incorrectly bad conclusion.

If he goes with not telling them, then he at least needs to ready with 'oh yes, I've had it for years, it wasn't worth mentioning as it causes me no bother. It's not the leukaemia you see on the news'

But it can have a life long impact on those children / young adults as my DB and I can both testify.

I’m sorry you’re going through this.

This is what my mum did and our relationship hasn’t ever really recovered, same with my siblings. We knew something was wrong and in the vacuum we just made up worse stuff and knowing how many lies were told was so much to deal with.

If he's on watch and wait and isn't having any obvious treatment such as chemotherapy etc then I don't see any need to tell them especially as I understand it, the outcome for CLL is that you tend to die with it, not from it. It may be something to tell them if he does end up needing chemotherapy because kids aren't stupid and they will work it out.

Slightly different but I didn't tell my son he had cancer right away as he'd had major surgery and they were able to remove it all. He was also quite poorly at the time and it just didn't feel fair to pile something else on top of him. I actually had a few nurses openly disagree with me as it meant they had to keep it from him as well but I still to this day know that I did the right thing.

4 months later, he relapsed and needed chemotherapy and that is when I told him. I also explained to him (he was 8 at the time) why I didn't tell him previously and as far as I'm aware, he's never resented me for it.

I wouldn't go against his wishes and tell the children personally. Can you seek macmillan for support?

Thank you. I'm confident that they don't know yet. Most of the time I am very asymptomatic. My kids talk to us about their problems, big and small. There has been no hint of any questions about my health. I will tell them when I think they need to know, but right now I just want them to be normal kids without worrying about me.

Hello.
My husband has CLL and was diagnosed about 10 years ago when our children were 1 and 6 respectively. I still remember the shock of this. He was 43.
We didnt tell them at the time and my husband - who is really private - also didn’t want people to know. I found this a huge strain as, whilst it was his illness and he needed to manage it how he felt he could cope, I was also living with the impact and the worry.
I needed to speak to people about it.
We did end up speaking to the children about it but it was a few years later. Also, when Covid happened and we had to shield, and also because they had to have flu injections instead of nasal sprays at school, we ended up having to explain this to our then 4 year old in as child friendly a way as possible.
We found - as they’ve got older - that the way through this was to be open and honest about how his immune system is compromised. It also led to us explaining that a blood cancer diagnosis - especially CLL - is not a matter of go into remission or die. That there’s shades of grey in between. We promised to be open and honest and that if anything changed we would be honest. We’ve navigated it well and - ten years on - we’ve jus had a consultant visit and my husband‘s blood work is the best it’s ever been. Ten years on and he’s still not needed any treatment and we are still on watch and wait.
It‘s a journey and the key to managing this diagnosis is to ride the wave.
Feel free to message me any time. I know how unusual it is to be in this situation with a relatively young partner and children.
I send you all my best wishes and support.

But this is a chronic condition and his prognosis is good and he hasn’t had to change his life

they tell the kids and they talk to people and they react like people on this thread because they just hear cancer.

maybe talk to your DH about telling the kids he has a blood disorder that needs checking every now and then. Agree with pp that giving them the words cancer or leukaemia will make them anxious

but you can not tell them behind his back. You need to keep talking to him

Personally I’m strongly strongly opposed to keeping secrets like this from children, so I would never have agreed to keep it a secret. So I don’t think you are being unreasonable at all.

When I was 8, my Grandad was diagnosed with cancer. I heard adults whispering about it, snippets of phone conversations. The word ‘cancer’ in hushed tones. I knew, but also felt unable to discuss it as I hadn’t been told. I looked up his medication in a medical dictionary on the shelf. Listened for clues. Thought he was dying and that i wasn’t allowed to talk about it.
He lived until I was a young adult.
Imo it is far more damaging not to share something like this with children. You deny them the chance to ask questions, process and be supported.

Oh come on, who in their right mind would cut someone off for having cancer and keeping it to themselves?? - not many people are that self-absorbed.

I’m so sorry OP, this sounds like an incredibly difficult situation.

I would find this extremely hard. Obviously you can’t tell them without your DP’s permission but I would find his position incomprehensible and potentially unforgivable/ a deal breaker in terms of how it made me feel about him and the relationship.

I would understand if your kids were 2 and 4, but I have kids of a similar age and I can’t imagine keeping something like this from them. If he doesn’t want to say ‘cancer’, say ‘a blood disorder’ as others have suggested but if I found out my parents had kept something like this from me, it would have changed our relationship forever.

Life presents challenges and your kids are old enough to be exposed to this, and the way in which you handle it with them could actually help them as adults. We all want to shelter our kids from sadness but life just isn’t like that.

This is a real deal breaker….I’ve been there before….once I had a treatment plan we told the kids everything….if you don’t tell them , they will never trust you again….not with the small stuff and certainly not with the big stuff

I think if you tell them against his wishes it wouldn’t be fair. Although I completely see what you are saying. I wonder if it just would seem to him to be an unbearable burden to have to speak to his children about it. Maybe the straw to break the camel’s back. Very hard to maintain a brave face I would think. Can you seek counselling or advice from somewhere like MacMillan? No easy answer here and feel for you all