Hi all, my son comes home this week from London and I have to tell him about my cml diagnosis. I have had plenty of advice from well meaning people. Do I use the word cancer or call it a blood disorder. I have had time to take it all in. I am so worried about telling him. any advice karen
Hi @karencreasey and welcome to the forum. I’m glad you posted as it’s something lots of us have had to do and we will be able to share our experiences.
I have 2 daughters (aged 11 and 8 when I was diagnosed) and talking to them was probably the hardest part of my journey.
I initially said my blood was poorly but fast forward a few years and contending with shielding I told them the truth. Through discussions with them it was clear that they knew it was more anyway and felt better when they had all of the information.
I think it depends a lot on how old the children are in how you approach it. You know your son best and although I can share how I dealt with it your situation may be different.
What I do know is that it’s tough and I didn’t know where to start
Lots of the websites, including this one have information booklets and advice and I think it helps talking it through so may be worth giving the support line a call.
Please let us know how you get on X
Here is the support line number
Thank you so much for your reply Nichola. He is 27 and is an actor doing really well. He is finishing in the globe today and then is in the west end from june. So I have waited to tell him because he is on a breaknow, I did not want him worrying while doing his show. But now the time has come I am really worried. But I am sure it will be fine.thanks fo your thoughts. love karen x
Have you been given any booklets that you could give him to read that could help you when you explain what’s going on
I sat my two down with a brief introduction to myeloma so as not to overwhelm them my son was 19 at the time my daughter 15
He listened sat quiet then asked if he could go out with his friends
I left the booklet so he could pick it up in his own time
Hi @karencreasey yes, one of the hardest thing I have ever had to do and @Nichola75 and @2DB have given you brilliant responses.
My son was 30 when I was diagnosed and working away and I really regret telling him on the phone so I am so glad your son will be home when you tell him.
Personally, I am not a professional, and you might not feel this is for you, but perhaps say that you have cml and tell him what that stand for and say it is classed as a blood cancer and those words really hit you.
Be prepared that he might be upset that he has not being told earlier.
Then perhaps open a conversation with him so he can ask all the questions whizzing round in his head and say that you are there to talk about it at any time.
If he feels you are comfortable with your cml diagnosis then that might well help him.
Personally if you do not call it a blood cancer I bet that he will soon find out and perhaps it is best heard from you.
If he was much younger it might be different.
Please tell us how your talk goes and we are all behind with you.
Look after yourselves
@karencreasey . Hi there. Yes, the hardest thing about getting a blood cancer diagnosis is having to tell the children. Even though my two sons are grown up, it still wasn’t easy. My advice to you, would be to be honest with him from the start. If you avoid using the word cancer, he will only go away and Google it, so it is probably better coming from you, as that will give him the opportunity to ask you any questions that he may want answered.
I’m sorry about your diagnosis, but well done for managing to process it all - that is such a difficult thing to do. As is telling your children/other loved ones.
My son was 14, and I was a little cagey at the start of the conversation, but even at that age he immediately asked if it was cancer - so I was honest, and answered all his questions (with a slight positive spin, as he was 14) and he was happy with that, and seemed to accept the situation. Obviously he was a bit sad and worried, but that’s a normal response, and I don’t think you can protect people entirely - it would very possibly be at your own health’s expense. It was a much better conversation and outcome than I had expected, to be honest. You may find the same. And it was a great relief to get it done, and for openess to resume.
Best of luck. X
Telling my 3 children was in some ways quite easy. Perhaps easy is not the right word, but they were somewhat familiar with leukaemia in general, this is because their mother passed away 25 years ago from Acute Myeloid Leukaemia, they were 13, 18 and 24 years old at the time. I was and still am very proud of the way they handled it all. Because Chronic lymphocytic leukaemia (CLL) is not as bad as Acute Myeloid Leukaemia I tended to play it down a bit.
It’s a real shame that my wife didn’t get to see any of our children married, nor meet any of her 8 grandchildren.
In conclusion I would say that telling your son about your condition will not be as difficult as you imagine, yes there will be a few tears, but they will soon pass.
I’m 28, my dad was diagnosed with ALL in December.
It’s a moment that I’ll never forget. But I’m also so glad that I know the details, and I’m so glad he told me.
My personal experience is that being told the truth as straight as possible helps me to process it, cope with it and also offer support. Your son’s first thought will be you and in the moments when he’s on his own, it’s where he’ll worry about himself.
Know that your son loves you, and no matter what you tell him you can work through it together.
Please stay strong - the first days are the hardest, but know there are people here to listen.
Please take care of yourself and each other. You probably have strength you didn’t know you had.
We would be really happy to speak to you about this on the support line if that would help? Blood cancer information and support by phone and email | Blood Cancer UK. How you explain your diagnosis is up to you and you will know your son best but I would be honest as this may really help when explaining your situation. It may also help giving him a booklet to read so he can have something to refer to.
I am sure you explain things well and do call if you need to talk.
Thankyou everyone for your amazing support and advice. He is coming home on Friday and I will tell him then. He is a strong boy and I am sure once he has processed it he will be ok. I will be glad to tell him and not have it hanging over me to be honest. Thanks again everyone Karen xx
We will all be thinking of you on Friday @karencreasey .
Yes, thinking of you and your son on Friday, @karencreasey. X
Yes, I will also be thinking of you both on Friday, please do let us know how you get on @karencreasey xx
Telling him the truth from the start is the best option. Like you say, once you have told him you won’t have it hanging over you. He will appreciate your honesty too. Please don’t forget we are here for you and your son, should he wish to call us with any questions or need support. Or if you need to chat things through before you talk to him. Our support line is open until 4pm on Friday and again at 10am - 1pm on Saturday and Sunday.
Take care, call if you need us, Heidi.
I suppose that the three main blood cancer types; Leukemia, Lymphoma and Myeloma are also blood disorders and I have also heard medical professionals refer to them as Neoplasms.Best just to tell them as they will only look up what these things actually are on the internet.
Best wishes and hope it all goes well
Thinking of you today x
according to the cancer research website “Doctors think most people with cml can expect to have a normal length of life.”
so i can’t see the point of telling your son if it is going to worry him. having said that, if it’s not anything that’s going to affect you in a serious way then of course he’s not going to worry.
i tend to tell everyone…the more the general public know about cancer, the better for everyone.