Hey everyone,
I was diagnosed with Hogkin’s Lymphoma in 2013 and completed chemotherapy in 2014, at this point I was only 13 years old. I feel like I was just riding the wave and didn’t really understand what was going on.
Fast forward to 2019 (18 years old), I moved into university and started experiencing panic attacks. For about 2 years I struggled with generalised anxiety but started to cope with it really well.
Now I’m 23, and I often experience weird sensations with my body that set off mild anxiety and it gets worse when I’m in bed trying to sleep. I often feel like I have cancer again but it seems so irrational, like my skull will feel different as if there’s a lump or I’m constantly concerned about the site of my original tumour, and I don’t want to waste NHS time getting checked.
Sometimes I feel like I’m going crazy and I just wanted to see if it’s just me or if other people have experienced similar? I’m at a loss right now.
Hi Bongy and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your concerns.
I am Mike and I help out around our various Lymphoma groups…… including our dedicated Hodgkin lymphoma support group.
I don’t have Hodgkin's Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
The Lymphoma journey for some can be traumatic…. and as you went through this at such a young age this must have left significant memories.
The only way to put a lid on this and be able to move forward is to get checked out…… and please understand that you are never wasting NHS time…. This is exactly what it’s there for.
I assume that you have now been discharged from the care of your Heamatology team….. so do go see your GP and talk this all through.
You may want to also check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey…… and they do have a specific group for Young Adults.
They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
((Hugs))
