Feeling immensely sad

hi Jamtart

welcome to the online community, sorry you've had to come and find us

I don't know much about CML although I am now going to look it up, as suspected the 'chronic' alludes to slow progression, I know my mothers' leukaemia was very slow moving but she was in her 50s, more of a classic case.

Grief. 

Shock, disbelief, denial, anger, sadness, confusion, blaming, bargaining ... sound familiar ?

Getting anything right with teenagers is a struggle and this is still early days. You're still feeling like you've been robbed of your future, your child's future. ?

You realise that continuously asking if he's okay is going to annoy him, asking my 18 year old if he's cleaned his teeth and flossed only gets one reaction. 

I'm not sure if this is going to help but we all take diagnosis differently, I had breast cancer and it felt like the end of the world, I was 52 at the time and had my four kids. A friend was diagnosed at 16 weeks pregnant in her 30s, had to have chemo in the mid trimester and then gave birth to her healthy son, she apparently doesn't seem to think about it, she's too busy caring for her son. I find that 'get on with it' attitude almost impossible to contemplate .

Do you see what I mean ??   It is perfectly possible that your son is just 'getting on with it', however traumatic it all is for you. 

If it was me and my kids I'd be in pieces, I always said I was glad it was me that had cancer, I couldn't cope with my kids getting it.

But you can't show you're falling apart. I suppose that's why we say we have to show strength and courage when we don't feel like it, is it because that's the best way to support someone else ? I have to say my husband continually 'fobbing me off' with "you'll be fine" made me want to punch him in the face but ordinarily this attitude might work. 

Does he have anyone he can confide in, is there a Macmillan centre, is it the Christie ?  I'm sure there's lots of facilities there. 

From what I just read the new drugs are exceptionally good but long term data isn't yet available, I can see 5 years but that's most likely because they've only been around 5 years. 

https://www.nhs.uk/conditions/chronic-myeloid-leukaemia/

hugs

Carolyn

xxx

Hi Jamtart,

Just wanted to add to what Carolyn has said, I’m really very sorry to read about your son. I have a 12, 10 and 6 year old and this is quite possibly the worst thing I could imagine as a parent, so my heart truly goes out to you.

The only thing I wanted to add was from your son’s perspective. I was in my 30s when diagnosed with my parents in their 70s, so a little older than your son, but I do feel like I have some experience of seeing this through your son’s eyes. One thing I can guarantee is that as much as you think you might be hiding your pain and sadness, he will know. My parents tried to put on a brave face, but it was obvious how much it was destroying them inside. It depends on what sort of family you are, whether you feel ok in expressing your true feelings - if that would feel natural, then I would say do it, if it doesn’t feel natural then maybe it would cause more difficulty than good because the sheer act of being open would be uncomfortable? For example, crying was always something to be avoided and swept under the carpet when I was growing up, so crying after a cancer diagnosis only served to confirm that something major was up, and that was the last thing I wanted to see my parents doing as it exacerbated the problem.

Also, another thing I would say is that yours and your son’s perspectives about this will be different. I’m sure my parents felt sad that I got this in my 30s, that it would impact my ability to build a career like they had, reduce my opportunities, maybe even limit whether I would see grandchildren which I am guessing they must really have cherished. And guessing is the key word in that last sentence. Your son has not experienced those things that you might be sad for him about. Therefore, it can’t impact him as much as you might feel for him because he doesn’t know what you perceive he has lost. For sure, I’m sure your son will be feeling rough through this, it’s not what anyone would have wanted. But I’m sure he’ll just be thinking, this is my life, this is what I have got, and how do I make the best of it. He won’t really be able to feel the same sadness that you might be feeling, because he hasn’t experienced the things you have that make you feel sad for him? I’m not sure if any of that makes sense?

I’m sure he’ll need your love, support, all the great things that parents give. But I’m sure he won’t need to feel his parents feeling a sadness for him based on their own experiences. That is more your psychological issue than his and I would definitely encourage you to get support for your needs too, separate to your son.

I’m not sure if any of this is making any sense so apologies if not. My advice would be to get support for your own feelings, show love for your son, be there for your son when he needs it like any parent should, but don’t feel bad for your son about the life he has. He will not know any different and will just want to get the best out of the life he has got.

I really hope this helps and I’m wishing you all the very best

Greg