Treatment spiral
Let me start by saying I am autistic and god I wish there was tailored support for people with autism going through cancer. I can't find anything and it sucks!
I'm having a hard time with treatment. I'm 32 and first had cancer when I was 26 and that was thanks to a lovely and rare little genetic condition called PTEN unfortunately It came back in 2023 I had a brutal de bulking surgery back then and I have been dealing with the cancer ever since.
The doctors have told me that it is very unlikely (but not completely impossible) that I will ever get rid of it but they are confident it can be managed and that I can live with the cancer (how long for is anybody's guess)
The first treatment I did was immunotherapy and that was fantastic it was shrinking the cancer and I coped brilliantly until I didn't. All the side effects hit at once and because it was accumulative toxicity I was told it would only get worse so there was no way I could carry on.
So now I'm doing a clinical trial at Addenbrookes and I am having a really hard time. I have to travel a couple of hours to get there once every 3 weeks and the treatment makes me feel horrendous the nausea is like nothing I've ever known I can cope with a lot but nausea might just be the worst thing out there I'd rather actually be sick then constantly feel sick. I'm done in for a week after my treatment but what's crazy is the second and third week you wouldn't know there's anything wrong with me and I feel great.
If I'm being honest the treatment is making me miserable I mean I didn't feel even half this nauseous when I did chemo back when I had cancer the first time. None of the anti sickness meds are making a dent in it. Getting through that week after my treatment is a nightmare it's like a third of my life is getting taken away from me.
I know this might seem like first world problems compared to other people's experience but it dawned on me that I can be on this treatment indefinitely as long as it is working but that long time when I'm already having a hard time. It's that damn nausea if I could just get rid of that most of my problems would disappear in an instance but if anything it's only getting worse.
In an ideal world I would change treatments. My only problem is the current treatment is working it's not growing and in some areas it's shrinking. If I change treatments there is no guarantee that will still be the case and you certainly can't just jump back on to a trial once you've ditched it so there is no guarantee that I would be accepted onto another trial either.
I'm not planning on going anywhere yet I still have so much life to live but god I need to find a better way to get through this. I just don't know what the next steps to take are.
I guess most of all I just wanted to vent to people who will understand.