Hi,im back at hospital 18th Dec for results from a recent pet scan. Mines a slow grower,although after a bone marrow biopsy it showed i was stage 4 already. My mum says not to think about it but i do,and thats why i keep wondering how long ive actually had it,since a teen,20’s,30’s,40’s. How can you go so far along without symptoms?. And also i have heard it can go into the brain stem,will that mean it effectively change me or make me become incapable of looking after myself. Kind regards to you all. Becky
Hi Becky, I cannot help you on the medical side but it sounds as if you are in a scary place. If anyone tells me not to think about something I think about it all the more. My mind is my worst enemy it goes into fear mode and thinks about every scenario that hasn’t happened, especially at night. All I can say is you will probably never know how long you have had something. Please take care of yourself and let us know how you get on on the 18 Dec, we are all here to support you.
Thanks Erica,will do.xx
Oh dear, yes that sounds like you are well in the scary panic zone, it’s the not knowing that’s the problem. The washing machine mind full of questions without answers. Your poor Mum will be just as worried with no answers either, not thinking about it is easier said than done.
Stage 4 sounds so terrible too but really totally depends on your particular sub type. Just try to take things a step at a time. Try to breath slowly and stay as calm as you can, listen, learn and talk to those who have been in the same place. You can manage this, you can get through the challenges, you can manage the stress & panic.
Just keep telling yourself:
‘Cool Calm & Collected & Step by Step’ then when you know all the facts you can work on a game plan to hopfully reach the other side successfully. Might be a bit of a bumpy ride but we all get there eventually.
Wishing you the very best of luck and the smoothest and easiest ride possible. Be nice to yourself and love those close to you, this can be very tough on them too.
Thanks Karen,feel calm at the moment and i never have shown emotions to my family and friends. Its questions that are in your own head really.
Yes know it well,
Just know all your lymphoma pals are with you and that although it can be a tough journey, you can manage it and there are plenty of folk who can chat, support & advise, just ask when you need.
Thank you so much for sharing your results with us. I wanted to follow up on your pet scan results. Have you been to the hospital since your 18th of December and has anything changed since then?