This is a space to share and consider the immediate, now and long term effect on children of a blood cancer diagnosis within family and friends.
My son was 27yrs old when I was diagnosed and not living at home, but in hindsight I have feelings of guilt that I think I blurted it out to him on the phone and then rather left him with it. I was so into myself trying to get my head round it that I regret not thinking of the effect it must have had on him and wondering if he had any support. Today 17 yrs on we talk about it naturally and he seems OK, but I will never know what he really went through, he takes after me and just says fine.
Now that is just one very small angle and perhaps with many of us shielding it has raised many more issues for others as parents of much younger children. We don’t want children to be left in a position where they are scared of bringing Covid into the home, become a carer, loose out on a social life, unable to bring friends home, or have missed out on education or have issues now and/or in the future with anxiety etc.
What dilemmas, thoughts and feelings does that leave us with?
I expect there are so many other issues too.
What are other’s thoughts and dilemmas?
Gosh @Erica, I don’t even know where to start but such a worthwhile thread to start!
I wish I had handled things a lot differently and often reflect on this as you do. I thought mine was curative so gave the basic information - once I found out it was still hanging about I never got back into the conversation. However, this played on my mind for so long and so when I had to go into more detail because of shielding it was a relief, but also the hardest thing I’ve think I’ve ever had to do!
My oldest daughter (15) now knows everything and seems to handle it ok. We talk regularly, she checks when my appointments are and is much more aware of my emotions now - not sure if that’s a good or bad thing? My youngest daughter can’t face knowing more and I don’t want to push it. Again, not sure if that’s the right way to go? She has huge fear about death, loosing people and has had to see a counsellor - the impact has been huge.
Everybody’s experiences are so different aren’t they and I think we do what we think is right at the time, or maybe it’s more we do it in a way that helps us to cope or deal with it, which is ok as well.
This year has been a challenge to say the least. It’s left me, my children and my husband feeling a lot more vulnerable. It’s meant that as well as my own emotions I’m having to manage everybody else’s and I think I’m doing ok at that. Is it at detriment to looking after myself - yes, I think it is a bit.
I want my children to feel safe, happy and
start living again and if that’s what I want then I have to do all that I can to make that happen. It’s hard, so hard because my anxieties are still high and work is really stressful to - but I have to work. I’ll encourage them to start going out and having fun, encourage them to be careful and will do my best to get them back to some kind of normality - whilst I do what I can to keep myself safe.
I know conversations will have to happen again, maybe next with my youngest daughter or when/if I need treatment and those thoughts are never far away in every quiet moment. I dread it just as much as I did the first time. I just want their life to be worry free - unrealistic I know!
Thanks so much @Nichola75 for your honesty too
This is from @RosieD
Yes. Totally agree. Feel neglected by the government. The only advice issued so far seems to be for us to limit our social contacts which to me is euphemism for self isolation. Not an option for many of us who live in busy households. My children both live at home, one at school and another at University. Fortunately they have both been vaccinated now. However, the fear of bringing Covid home still has a significant impact on their social lives. I feel for them as they are at an age where they should be out with friends, enjoying life. If we could keep mask wearing in crowded public places and maybe covid passports for large events, then at least we’d have some choice about what we decide to do / not do. I’m actually, for the first time, feeling angry. It feels like a form of discrimination. We are no longer going to have an equal opportunity to participate in every day life. Rant over!
How are your children feeling about things @RosieD?
My Dad was diagnosed with NHL around this time last year, he’s In his 80s, lives on his own and lives around 3 hours from me so I was his main carer travelling back and forth whilst leaving my children (15 and 13) at home with my husband. Dad ended up in hospital before his diagnosis and biopsy and I ended up staying with him for about 2 weeks until we had his diagnosis, all the while not telling the kids what was happening other than Grandad was poorly and needed to go in hospital and then needed looking after when he came home. Leaving my Dad, he was crying, I was crying, to come home to tell my kids, was so hard and then telling my kids was one of the hardest conversations I’ve ever had. My daughter shut down, went to her room and dealt with it in her way, my son cried and cried for days. It’s been a really hard year and I definitely feel like I’ve looked after everyone else before looking after me and I think it’s only now I’m starting to properly process what we’ve been through and how close we were to losing him.
Gosh @Janeyd, what a year you have had, I bet you felt pulled in all directions.
Leaving your dad must have been heart wrenching and then telling your children definitely equally so.
It is so interesting how your children reacted to you telling them about their Grandad.
It sounds as if you are like me and cope and cope and then it is only afterwards that I process things and let my feelings come out.
Perhaps it is time for you to look after yourself as well as you have looked after others in this last year. Spoil yourselves as well.
Please keep us updated.
I think so often we manage others emotions before our own and we do it because we are in survival mode. Now is the time to take care of yourself x