As a young adult living in childhood cancer remission, I often find myself lost in the ‘in-between’.
I find teen/young adult support does not suit my situation, as it is catered to a teen diagnosis (and I was 8 at point of diagnosis).
I am obviously too old for child support groups, as I am now 22.
And I’m too young for support groups aimed at people living in long-term remission – the few I’ve been to I’ve been the youngest by about 30 years (??) talking about marital stress and retirement plans ???????
Not for me lolol.
I’ve realised support groups don’t cater to the in-between cases like mine, which makes sense as I am in a very rare position. Once I understood this, I could accept it; and I was no longer angry about it. Realising one-on-one care is more beneficial for me settled my hopes about finding a ‘group’ and I stopped trying to find one. And I felt better for it. Overall, support groups do not suit the rarer cases (from personal experience and GP advise).
The difficulty I really had was pinning all my hopes on going to a support group and finding a tribe of people like me. I thought going to them would make me feel less lonely if I could meet people with similar situations – but in-fact they all had the opposite effect. I then found another group of people I didn’t belong to, which made me feel worse. This was not helpful for me.
But don’t give up hope in finding a tribe.
Thankfully, I have now found a group of people I relate to, and have really benefitted from knowing them. I met them through Bone Cancer Research Trust conferences. We are rare but we are there! (Did I just create a motto for this blog lololol??!!)
This was not the point of the conferences. They are there to educate people about the charity and present research projects. This was just a wonderful side effect of meeting fellow patients interested in research, and I’m so beyond grateful for this!
What I’m really saying is to not give up hope on finding people similar to you – this can happen unexpectedly, and maybe support groups are a bit too forced and generalised for rare cases – so perhaps going to events about your specific cancer can help ease loneliness and grow your network of people who understand. It really did for me. I also found the events very inspiring and humbling. Adding people I met on social media really helped me to feel less alone in this big ol’ world – I would recommend this to help improve mood after the event!
I also hope this blog will create an audience that can relate to one another, maybe we could all become a tribe of in-betweens.