I haven’t written in a while. I’ve been dealing with pain issues and getting thru the holiday season without needing bail money.
First, my pain has been off the charts. I’ve been having horrible pain in my hips/pelvis and back. The morphine I’ve been on isn’t helping and that’s not good. After emailing my Oncologist back and forth she increased my 12 hr pill to 2 pills every 8 hours with a separate 10 mg morphine every 2 hours as needed. It helps, but unfortunately, I’m also sleeping. I can’t stay awake with this increase. So, I only take the higher dose after Adam is home from school.
Now, on to tonight’s rant. Everyone deals with having a terminal or chronic illness differently. I happen to have a large network of friends on Social Media that I talk to daily. Whether I’m venting and getting support or I’m helping someone else with an issue. Sometimes we don’t even talk about cancer at all. When I bring up my Social media friends some of my family members think I’m doing myself a disservice and actually forcing myself to think about my situation and bring myself down. “Just don’t think about it.” Its what I hear often and it drives me bat shit crazy. I can’t do that. I mean its completely impossible to get thru a day without thinking about cancer in some way, shape or form. Its my life. Its what I know. Its not going away. Its the equivalent to telling a parent to not think about their child. Not thinking about my illness isn’t going to change anything. Its not going to ‘cure’ me. Its not going to extend my life. Its not going to stop the cancer from growing inside me. So, let me be. Let me surround myself with people that understand, that know what its like. Let me talk to people that can make me laugh thru the tears, that understand my morbid sense of humor and don’t judge me.
The only good thing about my cancer is finding these folks, bonding and forming the friendships I have with them. I’ll be honest, cancer isn’t making me a better person, its not making me look at life thru rose colored glasses like you hear from some people. Cancer wasn’t the ‘gift’ some people want you to think it is. Except, for friends like Mia, Lulu, Melissa, Nancy, Annmarie, Andi, Judy, Sandy and many, many more there is nothing good about cancer. Nothing.
So, stop telling me to ‘just stop thinking about it’ because I’d have to stop talking to my friends and I need them like they sometimes need me. Respect that I know what’s good for me. Respect my feelings like I respect yours.
Friday, January 9th is scan day. By the end of the day I’ll know if the pain is the cancer spreading. I’ll know if the treatment I’m on has to change. I’ll know if its just my hips or other bones or organs. I will go thru this week with a smile on my face and I will act like everything is OK. I will also be thinking about it. I will talk to my network of friends like I always do. I will also be thinking about it. I will have their support and they will make me feel better in a way only they can do.
And I will also be thinking about it.
Geez…as if it were ever possible to stop thinking about it.
http://www.canceremotions.wordpress.com
Geez, as if it would even be possible to stop thinking about it. Get real…
If only we could stop thinking about it! You need your support network, you have to talk to people who understand you (and your sense of humor!). Good luck at your scan. <3
Thank you Mandi. I’m cautiously optimistic. Whats the worst that could happen??? Ha! Oye.
I suspect that when it is family or close friends who want us to “stop thinking about cancer,” what they are really saying is they want to not think about that they will someday be losing us to cancer. That is why support groups, on-line or in person, are so important.
Cancer has daily reminders for us all. Others may put it out of their minds if we look healthy, but pains and side effects of treatments are always there. Current med gives me a funny taste in my mouth and mouth sores. I am now reminded of cancer even during meals or snacks.
My husband asked me lately why I was having such a hard time picking out a Christmas stocking to make for our new granddaughter (born yesterday). Cancer even is part of that decision. It has to be really special in case I’m not here long enough for her to remember me.
As for those not actually close to us, FB friends, acquaintances, non-metastatic cancer survivors who don’t think we are “doing cancer right,” it’s none of their business anyway.
Good luck on your scan. (Scan anxiety is another thing other people just do not understand.)
Congratulations on the birth of your Granddaughter!! Such an exciting time and bittersweet as well, I imagine. However, I found out only this evening that a girlfriend of mine is starting a new clinical trial for a brest cancer vaccine…and she’s stage 4 too! So, maybe the times are changing. I have a little glimmer of hope tonight that i didn’t have earlier. Just think how wonderful it would be to know your granddaughter may know of breast cancer the way we know about Polio! God Bless…xox
It’s impossible to “not think about it”. It’s not the dominant thought of every waking hour, but the presence is there, an underlying thread of awareness that every second I have matters now. Every twinge or discomfort might be something more than just “regular pain”. Every threat of exposure to illness might disrupt the stable state I’m in. Even if I’m not actively thinking about it, it’s there, in the back of my mind and it’s not going away. People who tell you to not think about it don’t actually understand what the hell they’re saying, what they’re telling you. They think it will make us happier people if we don’t think about it and stop immersing ourselves in cancer-related things. It’s not going to go away if we pretend it’s not there, and they don’t seem to get that. We need the friendships of people who DO get that.
How about “I’ll stop thinking about IT when you research IT well enough to understand I can’t stop thinking about IT!”. People are trying in most cases, but they lack the understanding. Unfortunately, those of us who have a high degree of understanding is because we or a loved one has IT.
Have your doctors given you liquid morphine? It works faster and sometimes helped my wife when she got behind the pain.
I don’t have liquid morphine. I do have fentynal patches but now I’m on cymbalta for nerve pain from radiation and don’t think I can take it now. I will ask about the liquid. Thank you.
I am so sorry about all the pain you have. And seriously, how can anyone expect, much less suggest to you, that you just stop thinking about it? Ludicrous really. Thank goodness for online support. As Ann Marie said, we all need each other. Good luck with the scan. xoxo
This is why we all really need each other. Glad the chat is this week! Xoxox
I recently had a similar incident, and wrote a post about it. While I am not nearly as active on social media as most in the BC community, I value greatly the connections I’ve made. I was told via Facebook by someone I’d not spoken with in about 5 years to move beyond all this cancer–and she had BC once herself (nothing worse than one cancer patient telling another how to do cancer…).
I guess the heart of the matter might be that cancer and potential death from it are just difficult subjects for people. But not talking about it, pretending it doesn’t exist, does nothing to change the reality that cancer does indeed exist, and we got it, and some of them might eventually get it as well. That just scares the crap out of people.