CN: icky medical stuff. If you’re sensitive, don’t read.
Sore. Punctured. Bruised. Discoloured. I’m 7 days out from diagnosis, 6 days out from surgery. My protruding gut is still very swollen, and it feels so damn heavy. It’s difficult to walk with a straight back. My stomach muscles screech in protest over normal movements. Not so normal now. I feel…limited.
Today, I showered, and soaked off all the steri-strips and caked blood. Then it was time for a bag change. The instructions all say to rinse the old bag, then put it in a plastic baggie, seal it, then put that in a second baggie. They come with the stigma and shame included. I rinsed mine out and tossed it in the trash. There is a sense of revulsion; of a loss of control. I expect that will lessen with practice and experience. I don’t even know how to describe what it’s like, gently cleaning off an internal organ.
It hit early this morning – for the first time in my life, I feel old. Frail. I despise feeling this way. Somewhere, under the weight of this, is my usual self, but I don’t feel as though I can shift this density off. I know I need to eat, but I can’t find my appetite. I do have the perfect excuse to over indulge in ice cream though.
Patience is not a virtue I possess; I hate all the waiting. I won’t even see the radiation therapy Doc until 1/15. I just want this done. I want to rip out this part of me gone rogue, stomp it to death and get back to my life. I want my gut back on the inside where it belongs. This is all going to take so damn long.
My hair keeps trailing through my thoughts. How long do I try to keep it? Do I hope it doesn’t start falling out during radiation therapy? Can I manage to keep it until chemo starts? I don’t know, but the thought of losing my hair is bugging me more and more. I know it’s a minor thing; hair grows back. Still, this is what I get stuck on – having to surrender those 39 inches of hair.
I need to get my studio cleaned up, because I’ll have to start painting soon, it’s the only emotional outlet I have. Ideas flit in and out, nothing has settled yet. Feeling like broken pieces of coloured glass; there’s no coherence yet, the brighter colours subsumed by a muddied swirl of black, maroon, and purple, with threads of brightly spilled blood throughout.
I won’t be inflicting these chronicles on you all too often, just as the mood and need strike.
ETA: I put my rings back on. I was instructed to remove all jewelry for the colonoscopy, so I did, and then I ended up in hospital for four days. I thought about putting them back on when I got home, but just let them lie. I shouldn’t have done that, because nekkid fingers aren’t me. I think I need some new rings. Yep, I do. The little things, they aren’t so little.
That’s pretty stink, my friend. It is always hard for me to find the right words at these times, so I’ll just wish you all the best with the treatment and a speedy recovery. Know that there are many people whose days you brighten with your posts and all of us will be hopeful for your return to joy and snark as soon as.
David
Thank you, David. Yeah, no one ever knows what to say, including me. Someone I know is dealing with cancer right now, and like everyone else, just found myself tongue-tied. I’ll get there, just have to work on it.
Losing your hair does’t feel like a minor thing to me, it’s a big part of your identity and has been for a long time, the picture at the top of the blog of you painting shows that. Don’t know what else to say except that what bothers you is important whatever it is. And that I’m sorry you are going through this.
Best wishes for a quick and thorough recovery. Cancer sucks and having the medical profession in your body sucks. You’re very generous to share your journey. I’ve learned so much from your posts and comments. Thank you. I don’t know if you’re one to get depressed, but if it happens with medical frustration, please remember that depression is a lying liar trying to steal energy from your recovery.
*hugs*
Jazzlet:
That photo was taken in February ‘016, the hair is longer now. :D I know what’s bothering me -- it’s the loss of control, that this is not a choice. And that really pisses me off.
Curious Digressions:
Thank you.
I’m not prone to it. I am prone to a rather furious impatience though, and I need to slow myself down.
Oh no. Not knowing you, I actually do not know what to say, except maybe: Best wishes -- and hang in there.
Gorogh, that’ll do. There’s no incantation, no magic to utter. I wish there were. :D And thank you.
*hugs*
Caine, Dearest FTBer, you will probably keep your hair. There will be some thinning, but maybe only a little. Chemotherapy will start with radiation, I think. I don’t know your exact diagnosis or stage, and I’m not about to speculate in this forum. But from what you’ve said you’ll probably get a low dose of chemotherapy with the radiation. There are a number of regimen options based on 5-fluorouracil. It is one of our oldest (the seminal paper was published in 1957) effective agents and causes little hair loss. I understand the loss of control. I had my barber give me a very tight buzz before I had a craniectomy. My neurosurgeon was quite pleased; he always shaves the entire head for surgery. Preempting the hair loss put me back in control, so to speak. But I always wear my hair short; it wasn’t that big a deal for me. It’s a bigger deal for those with long hair. The altruistic thing would be to donate your hair so that other cancer patients can have wigs. Your beautiful head of hair is probably enough to make two or more wigs. That’s a big deal to people mourning their own diagnoses and loss of control. But as I said earlier, I think it’s likely that you’ll keep your hair. Just a guess, but it is an educated and experienced one.
Hugs.
By the by, we don’t call them wigs. They are called “cranial prostheses.” There are significant differences from a cosmetic wig.
https://en.wikipedia.org/wiki/Hair_prosthesis
One thing further, your hair will grow back if you lose it. I promise you that 100%. As long as you don’t get cranial irradiation, your hair will grow back. Completely and beautifully. It will be younger and wavier and maybe even lighter in color, but it will be as beautiful or, more likely, more beautiful than the hair you have now.
If the hair has to go, I already know where and who. I’m not remotely interested in wigs or hair prosthesis. It’s my understanding that the radiotherapy will be first, then a break, then tumour removal, then chemo, but I could be wrong. I’ll know more in the next few weeks. I will most likely have to go with a chemo pump, because I’m out of town, and I can’t be doing this constant back and forth.
Having thinning can see your scalp hair is more likely to increase feelings of being old, I don’t want that either. As soon as I can have a chat with my two primary Docs, I’ll have a better idea of what to do and when. I’m the control freak’s control freak, and having such things being up in the air aggravates me, a lot.
Oh, I know the hair will grow back! That’s not a worry.
There is an oral form of 5-fluorouracil. It’s a good choice when there’s travel involved. Especially with a reliable motivated patient. But most radiation is given daily, as in Monday through Friday.
This all happened very suddenly? Colonoscopy followed by admission to the hospital and then surgery. You need multi-modality therapy. You should meet your medical oncologist sooner rather than later. You should meet and know your full care team before you begin treatment. And the whole team needs to be in agreement with your treatment plan before treatment begins. It’s better that way. Your case should be presented and discussed (anonymously) at their “Tumor Board.” All the caregivers can then go over everything. Make sure nothing gets overlooked. Collaboration improves outcomes.
Yes, it was sudden. The colonoscopy couldn’t done, because of the tumour. As soon as I was conscious, I was told of the tumour immediately, the Doc had already had a discussion with Rick, then I was admitted, and had a colostomy the next morning.
I know about the collaboration/planning stuff. I meet my radiation Doc on 1/15, then see my oncologist on 1/16, then everyone will have a chat and decide what to do while I fucking wait some more. Right now, I’m supposed to be healing up and getting my packed colon emptied out.
Sympathies on the not wanting to wait thing. My family member felt the exact same way; she was like, OK, we know it’s there, LET’S GET THAT SUCKER OUT OF THERE NOW!! and she could not understand the waiting around. Drove her crazy.
Also, sympathies on the hair thing… I would feel the exact same way. One of my friends cut her hair a little shorter (hers was down to her tailbone, she cut it to about bra-strap length so quite a change but still what most would consider “long”) just to give herself some control and to feel better about the whole thing. I think it helped her.
I think painting will help too. May the healing go swiftly.
I am impressed that you continue to blog at such a steady pace. I hope it helps you with the healing up. Most impressive.
Sending gentle hugs.
Hello Caine,
I have been reading your blog for years, silently. But silent no more! Thank you or sharing your art and your thoughts.
Cancer always sucks (skin cancer in my family), so I wish you good doctors and fast recovery!
There are these cooling hat things you can wear that reduce hair loss I think. My sister did and didn’t lose any. I think it depends on the chemo. You may want to ask.
I probably won’t read these, sorry. It’s my worst nightmare and I am stuck between fear of the unknown and not wanting to know. I may not be strong enough.
… but you’re in my thoughts and prayers. ;)
I have no words, but I do send hugs and love to you. You are a friend that I have never met, but you give so much of yourself on these posts that I feel a connection to you. Get well!
Hallo, Avalus! Thank you so much for saying hello, means a lot to me.
Marcus:
Yeah, I know about cool caps. They don’t have a great success record.
That’s okay, really. This is a difficult situation for everyone, and no one ever knows what to say. If I write these, it’s for selfish reasons, to help myself into some sort of coherency, or to locate my sense of humour, and so on. No one is obligated to read or say one word. If I was going to write a click Cancer Chronicles today, it would be on just how embarrassing it is to have no ability to clench shut on a fart, and how fast it becomes automatic to place your hand on your abdomen when you do fart, like you could cover it up or something. Oh, and as long as you’re praying to Osiris or someone like, that’s cool. :D
Johnson catman:
Thank you. I feel the same way about you and all the others who are kind enough to keep me & Affinity going. You all give me so much strength.
“I won’t be inflicting these chronicles on you all too often, just as the mood and need strike.”
Feel free, we aren’t here just for laughs.
Aww, that’s so very nice and kind of you, Busterggi. Thank you.
I don’t really know what to say… but for whatever internet hugs are worth, *hugs*
May 2018 bring you a full return to health!
KG, I fully expect it to, thank you!
*gentle headbonks and purrs*