I am 28 years old and had stage 4 neuroblastoma as a child. I’ve struggled with both the physical and mental health impact my whole life.
I was diagnosed with CPTSD around 4 years ago and have worked through a lot of the flashbacks, nightmares, fear and everything else in between. I couldn’t even say the word cancer most of my life. Things are better now, but I’m desperate to speak to someone who has been through something similar.I have never known anyone else to have survived childhood cancer, I’ve been looking for a long time. Do you have a section for people to connect here?
Hello Snuzini and thank you for contacting our online community.
I’m sorry to hear you’ve been struggling physically and emotionally following your diagnosis of neuroblastoma as a child. You’ve been through such a lot and it’s understandable that you want to share your experience with people who have been through something similar to yourself.
Unfortunately we don’t have an online community group specifically for people in your position. The nearest thing we have is the 'Life After Cancer Forum' which is a group for cancer survivors and people who have finished treatment. It is a space to discuss things like the physical and emotional after effects of cancer, returning to work, or trying to move on with your life. I appreciate this might not be exactly what you’re looking for as the majority of people who use the forum will probably have finished treatment more recently but you could perhaps post about your own experience as there may be others in a similar situation who might read it. You could perhaps do the same in the 'Brain Cancer Forum' and 'Children's cancers forum'. This last group was set up for people in your situation but you’ll notice that a lot of parents post in there too.
The only other thing I can suggest is to perhaps contact an organisation like 'The Brain Tumour Charity' to see if they have any way of putting you in touch with people who have gone through something similar, offer you support with what you’re going through or perhaps point you in the direction of the kind of group you’re looking for. It might also be worth checking social media to see if there are any ‘survivors of childhood cancer’ groups you could join or you could maybe even create one yourself if there isn’t.
Do you have much support around you just now Snuzini? I’m glad to hear things are better for you than they were and I want you to know that we’re here to support you so please stay in touch if it might help to talk things through at all.
Alex, Information and Support Adviser
Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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