Hi Everyone
I'm 26 and I've had a Neuroparaganglioma diagnosis since 2012. After having a failed surgery in 2013 and three different types of radiotherapy afterwards, most recently in 2022, which were very invasive to my life and education at times. My doctors at UCLH have put me on temozolomide chemotherapy with Maidstone hospital; and I'm mentally struggling to cope with understanding how you CAN live alongside temozolomide when the images you have of chemotherapy just when you think of that word can look very grim.
On top of that I've been very use to treatment disrupting my life, so have reacted in the same way by trying not to do anything (which is really hard when you want to work as a freelancer in film and tv) but know thats going to be really destructive as you can get more and more introverted. I understand I shouldn't do anything during my weeks of taking tablets, and thats fine, but its the weeks in between and importantly the empty space in between I'm finding hard to cope with; because I dont feel like I should DO anything. Does that make sense?
I suppose my question is for other temozolomide users, does it get better, easier or clearer with how you can have a fulfilling life alongside taking something like this? Thanks
Hello WFrance I have just come across your post and am sorry to see it's gone unanswered. I can't answer it myself as I have a different cancer, however by me responding it will be "bumped" back to the top of the forum where I hope it will be read and answered by other Community members.
Having read your post it you do need any extra support, please feel free to contact our helpline on 0808 808 00 00 (8am to 8pm 7 days a week). I am sure it would be beneficial.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
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