How do I tell my children? Please help

I'm so sorry ....when we first get a diagnosis it's just dreadful and your world feels like it has turned upside down. I don't have children but I'm sure you'll get lots of advise and support from others on here.

Ive got stage 4 nsclc which is inoperable ..however...what I've learnt is that most of the time it is treatable. I'm new to all this...my first symptom was exactly 2 months ago and I saw the docs 2 days later and it's been full speed ahead since then. I've had my first treatment of immunotherapy which I'll be on for 2 years.

️I'm sure you'll get a ton of advise and support on here....and I'm always around for a chat too. I'm a young 55 and I know what a shock it is to be told we have this. Xxxx

Hi Faith10 welcome to the group but sorry you find yourself here. Telling children is just horrible. My daughter was 13 when I had to tell her. I am not home at the moment and can’t share links on my mobile, but when I get back tonight I will add some information for you which may help xx 

THank you Elsie S.  It's horrific.  I can't concentrate on the smallest of tasks and my emotions are massively unpredictable.  I have to work hard to stop my mind going to the darkest of places.  How can this be happening?  I'm scared.

What does stage 4 nscic mean?  My case is being discussed on Thursday and I'm told to expect an oncology app in 2-3 weeks.  It's agony.  Does this agony lift?

thank you for replying

xx

Hello Chelle, yes please please do send over anything.

How was it when you told your daughter?  What was her reaction?  How does she cope with it?

thank you 

xx

Hi there...my diagnosis is 'non small cell lung cancer' (nsclc) adenocarcinoma...and it's stage 4 meaning it has spread to another area ..in my case I have a tumor in my left lung and also cancer cells in the fluid in my chest cavity. 

Its absolutely overwhelming at first and all I could think was that I was going to die...and I panicked. I did a lot of googling which is just pointless as statistics are outdated and also based on people a lot older than us. 

What I've learnt is that everyone's cancer is different, and that the treatment you receive will depend on your test results. 

I am on anti depressants which have really helped me...the first few weeks all I could do was cry and it took over every waking thought. I've only known my diagnosis for about 6 1/2 weeks but I can now actually forget about it at times and life is slowly becoming more normal again. 

I haven't told my parents as my dad lives in Florida and my mum lives in Wales...so I'm only in contact over the phone so it's easy to keep them in the dark. As they are both in their 80's I'm just praying that my treatment works and keeps me stable for a good few years to come and that they don't ever need to know.

New treatments are constantly being made available so things are not as gloomy as they first seem.

Hang in there...we're all here for you...xxxx

Hi Faith10 this is a very hard time for you at the moment, because you have the diagnoses, but you are yet to know  the treatment. People often find this the hardest part, the fear of the unmown and what is ahead. Being inoperable does not mean there wont be a treatment. Some of us here have been told we are incurable but treatable, and have been around for some time. I was first diagnosed in 2009 with womb cancer, and I was told in 2014 that it was back in my lungs and that I was incurable. I have 3 daughters, my eldest was 22, my 18 year old had just started university, and my baby was 13. My eldest 2 had known about the previous cancer diagnoses, but my youngest didn't know that I had this previous cancer. She was angry that I hadn't told her, and with hindsight I should of handled it better. My mum had passed with cancer exactly one year before my lung diagnoses, so of course my girls were thinking the worst when I gave them this news.

My Macmillan lung nurse arranged some counselling for my youngest. This took place at the local Macmillan centre at my hospital. I can honestly say that was the best decision. I also spoke to her school and the welfare officer there kept an eye on her. She was allowed to leave the class at any time, if she was feeling overwhelmed, and she had really good support from the school.  

There is no rush to tell your children, so maybe wait until you have spoken to your oncologist. It will be hard enough at the moment for you to get your head around what is happening. 

I will pop a link here to a booklet which I think will help you.

talking-to-children-and-teenagers-

and this page as well 

talking-about-cancer/talking-to-children

I hope these may be of some help to you. xx 

Thanks you so much Elsie.  Your words are comforting because it is all consuming.  I'm exhausted physically and emotionally and keep bursting into heavy sobs when I think about anything.  Even stuff like putting my wellies on to take the dog out, I'm thinking, these will be my last pair of wellies and projects I've started that might as well now go in the bin.  My mind is in a really negative and dark place and I don't know how to change that.  It's painful.

it must be so tough keeping it from your parents but I understand why you would do that.  I'm so sorry you're in this position too.

How do you tend to use this site for support?

xxx

Thank you for responding Chelle.  it sounds like you've been through the mill also.  Could i ask, does incurable mean terminal?  is that the same?  Is it a case of trying to live with (horrible) treatment for as long as possible only to end up in a hospice not being able to breath (or/and worse)?

you are right though, the not knowing is hell.  I feel sick all day, struggling to eat and trying to keep a game face for the kids, though my 10 year old is suspicious i think.  Am I about to break their worlds apart or do kids take it on the chin?

thank you for the links, I will look through them tomorrow.

thank you for taking the time to message.

xx

I think years ago the term terminal was used much more than today. It’s not a nice word is it. The thing to remember is that cancer treatment has come such a long way in recent years, especially lung cancer which is not the death sentence it used to be. Incurable is used so much more now, because people can live a long and relatively normal life on treatment. 

I know how hard this is for you at the moment. Just try and take each day one day at a time. You are still in shock with this awful news, it will settle, and you will be able to live your new normal. Xx 

Hi there ..I find that coming on here and having a good rant is great therapy as everyone on here truly knows what we're all going through. I know exactly what you mean when you said about putting your wellies on etc ..one of my first thoughts was should I clear my wardrobe out so my husband doesn't have too! Its bizarre the things that fly into your head. At first it's just horrendous but I promise you that once the shock wears off, which will take a good few weeks or maybe more, you will eventually be able to see things a little more positively. At first I was convinced I may only have weeks to live but now my mind set is that there's no reason why I shouldn't be one of those who responds well to treatment...and hopefully as time goes on there will be even better treatment...so there will be a future for all of us.

Talking of treatment, I'm having keytruda which is immunotherapy.. I've only had one treatment so far, it's every 6 weeks, and so far so good. Apart from feeling a bit tired in the afternoons I've not had any side effects.

My world has completely changed...but I'm trying to focus on being as healthy as possible. I'm eating well, drinking tons of water, and trying to walk 3 miles a day. I keep saying to my friends that it's ironic as I've never been as healthy as I am right now!

Is really early days for you...I couldn't even type on here at first as I found it all so surreal and couldn't see for crying. I promise you though...it will get easier. 

Just come on here and share how you're feeling...don't bottle things up, and know that we all truly understand what you're going though. It really is the crappiest of clubs to be part of, but it's full of great people who can help you through this.

Xxxxx