Hey Phil, I'm with you, we can't let this thread die, there is far too much beneficial information here for others....even at 4am in the morning. Damn this disease.
I sleep with the lights on now- and haven't done that since I was 5. I'm going to get a bit waa-waa for a minute but the darkness feels a little oppressive now, and I just want there to be light when I open my eyes. It's something I'm working through (with the help of a shrink and friends who have NO problems laughing at me!)
Thank you for calling out the things that really matter on this journey, the first thing, being to be able to talk openly about it, and having the right support networks in place. This thread, you and Lampwork, Rick, Sch, Budgie have been instrumental in my ability to cope. Just having someone else in the universe with any semblance of understanding has been so valuable. If I haven't thanked you all, I thank you now.
As I'm a newbie on the cancer path, I'm still not sure what is to come, but I know that everything is irrevocably changed. Somethings for better, some for worse.
I wish I could understand how you're feeling with the chemo, but I'd be lying if I said I could. I haven't gone through that- though can at least empathise with the feeling of understanding more pain is just part of the process, and you have to go back in regardless. It takes immense guts to brush off and go back in when you're already feeling like shite, without folding or breaking, or breaking and still knowing you just have to do it. But this is our journey right? Cancer sucks ass, balls and any other extremities, there is no way around it. I'm hoping that the next chemo doesn't suck so hard, and surgery does what it needs to. I'm keeping you in my thoughts.
You know, I've been told by well-wishers that I should feel blessed and that it's only those who are strong enough to bear it, etc etc. Sometimes I visualise karate-kicking them in the head, most of the times I just think I'll give them a hug. It's a shared journey of fumbling words and exploding emotions- waking up each morning with mortality staring straight back at you. The thing is, whether we had cancer or not, it's all so fragile. We just get a gentle or not so gentle reminder.
I haven't reached out recently because I'm staring down the barrel of nothing. I'm waiting either for treatment or transition to a survivor, and both are a bit scary. I'm more scared of being a survivor to be honest as it's a massive expanse of not knowing what to do next. My work, my relationships, what I want out of life have shifted so monumentally that going back to before seems impossible. I know it's too big for me to work out alone so I'm seeking out help. Treatment will have a schedule at least, a start and an end. That's my brain right now and I'm not proud of it, but its where it's at.
My learnings so far are limited, but i'll take your cue to share some things that became apparent to me really early on:
1. Cheese fixes pretty much everything. The gooey type is best. Find your cheese, or cheese substitute and enjoy it.
2. Jokes, laughter, absurdity, banter, all of those things with people who get you is the best drug of all. WAAAY better than any class A opioids.
3. I've lost what little dignity I had very early on, my body with all of its scars and bruises, pinholes and tufts, wrinkles, is just ridiculous. There are days I remember what it used to look like, but then I also remember how little clue I had at the same time, so I'm going to take experience and wisdom over tight abs and tone.
4. Friends and family will say the most stupid stuff you've ever heard. If it can be said, and it's going to hurt or rile you, they will seek it out and say it loud. But they are just trying to love, help, and process what's going on in the same way as you are. Be kind. Forgive them. Or keep a blacklist (whichever floats your boat).
5. If you're going to cry, make it count. Body rattling, lung shaking sobs are the best. Raw eyes, snotty, sniveling, ugly cries. I jest, but I'm also deadly serious. BAD pun. Crying is cathartic, and it's okay to just feel like shit.
6. Hold people, hug people, grab hands, just do what you can to stay close to others. It's easy to hide away, and pull back from contact, but it really can help.
7. Like Phil said, Talk. Just open your mouth, or begin typing. However you choose to do it, if not for yourself then for others. Sometimes what you say can change someone else's day. You just don't know.
I hope you get a better nights sleep Phil than last. I'll be awake at about 2am and then again at 5.30 if not....
Would love to hear from Sch, Rick, Budgie and Lampworks about their learnings too.
Cheers,
Claire
