I read stories of Stage IV survivors and people getting to NED, and I feel encouraged - but then I read about others who don't make it and it gets me down...and I just feel so terrible for everyone dealing with this terrible disease. Sometimes I feel like I want to quit treatment and enjoy whatever time I have left without all this suffering...but I only just started this journey and I know I need to keep fighting.
I can't say I know how you feel physically, but I know how you probably feel emotionally. The latter part of your para here really motivated me to share my experience. I, at one point (actually for a short period of time), insisted and told my close family that if I have a recurrence, I will not spend anymore money in treating it, killing it, fighting it, whatever people wanna call it. I wept endlessly and felt really, really tired, just bone tired. I had Erbitux as targeted therapy and I had serious breakouts on my face, chest and back, of which the marks are still very visible now. I wanted to exercise but I looked so bad I think even kids would be scared away screaming. I had two major liver resection and removed 70% of my liver. After the surgeries, my back was killing me with very little muscle left and sitting around all day, I just had port installed then and it was giving me pain too, so I could not do any exercise due to woundssss healing and fatigue from many rounds of folfox (I did 13 rounds).
2 weeks after I had my last round of chemo treatment in Dec last year, I immediately took a short trip with my loved ones and another one 1 month later. Right after, I changed my mind, I told my mom calmly if this bloody disease comes back, I will fight it. I'm willing to stick that needle in my port, which has become my friend now and go through those crappy nausea feeling, neuropathy, terrible, terrible first bite syndrome
, hair falling off and may be (!) those breakouts all over again. Because every single minute I have enjoyed treatment free in the past 6 months were so worth it. My mom almost couldn't believe her ears, and 2 months later, I said I'm not desperate to get the port out, it can stay in (I originally said I needed it out right after chemo, like on the very next day).
I feel that part of the reasons why the whole cancer fighting journey is so painful and dreadful is because (on top of physical sufferings) it puts you off from your normal life, you suddenly cannot go about your daily routine, people would come out of nowhere telling you you can't have sweets, have a dozen of food they want to recommend you taking that can magically cure cancer, the whole self identity is diminished into a statistics of a terrible disease or a "patient"- and where is ME? It takes time, give yourself time, to get used to the routine of doctor's appointment, add something that gives you a sense of satisfaction in your daily life helps (for me, I did puzzle and for every piece I finished I felt more confident chemo brain hasn't got to me...), rant on forum here, have your family let you help with some housework (folding some clean laundry), on the bad days weep all you want but do a self talk (i.e. Ok I let you weep for 10 mins, but give me 10 mins of positivity so your body chemistry can work in your favour sth like that) and let out your frustration all help a little bit.
btw, I did some Chinese stretching started 7th round of chemo which helped neuropathy a lot, 2 months after my last treatment, all my neuropathy was gone. I believe regular stretching that brings more blood circulation to fingertips would work similar way too.
Hang in there!!! It's worth it, life is worth it, I promise you!!!