Meta kidney in lungs, starting immunotherapy

[Mohanimus]

Hi all,

My second time with cancer, first time reaching out. I was diagnosed with kidney cancer 4 years ago, fell into that unfortunate time were hospitals were having a hard time dealing with "elective" surgeries. Took them 6 months to remove my kidney. Was told at the time that there was an 85% survival rate.

Now my old friend is back, in my lungs this time. Enough lymph nodes effected that surgery is not an option. So it's immunotherapy for me.

The crazy thing about all of this is that I've had an insane immune system since birth, I've been allergic to my mom, oxygen, fish, tomatoes, eggs, my own hair, CT contrast fluid and so on. This is shaping up to be a battle for the ages.

That's the fact stuff.

On the far more important side, I swing from despair to joy to madness and back round again from hour to hour. I spent 5 minutes staring a kitchen knife this morning, that scared me so much I ran out the house with out my phone.

My big question at the moment is how the eff do I lean on the very people I am about to fail by not being there for them? It is probably my male ego bullshit but I have DEFINED myself by my capability to support. They tell me it's their turn but I feel like I have to rebuild my entire identity AT THE SAME TIME AS EVERYTHING ELSE.

I hate my body, it twitches, it tingles, it creaks, it aches, EVERYONE OF THESE THINGS IS A CHAINSAW WIELDING JASON COME TO KILL ME.

I love you all.

Regards, Mo

[Mohanimus]

Replying to my own post, CLASSY I KNOW.

I just had another thought.

I am writing letters to all the people I love, saying thanks and goodbye (if I don't get a chance to see em again).

If you were doing the same, what would you want to say to them? Like in a generic sense, I don't want to miss something.

[Susana_CCNSW]

Hi Mo,

Uff what a ride you are on right now, I am so sorry to hear about all the ups and downs, and that expected emotional rollercoaster when facing a cancer diagnosis.

There are so many things you mention in your post, they are all valid, is a ride no one wants to be on.

Do not let your body define who you are as a person, we all want to be there for our loved ones, and it is not your decision or wish to leave them so you are not failing anyone.

Just remember in life there is time to love and provide help and support to others, right now it is time for you to receive it.

You also mentioned writing letters to those close to you, what a lovely idea.  Just write them, share with them your thoughts and feelings it is always nice to know those things, even if there are things that might be not as nice.  After writing those letters (open hearted) you can decide if you want them to be delivered or not, right now is a good way to let those feelings out of your chest.

I hope others in the community would be willing to share with you their own personal experience.

Best wishes

Susana

Cancer Council

Online Community

Moderator 

[Mohanimus]

Thanks for the reply and your advice on the letters.

Today was a good day, I sat out in the wonderful Autumn sun and the had lunch with family.

Having read a chunk of these forums I felt it was important to remind people (and ME when I re-read this) that there will be good days too.

Love you all, Mo

[Mohanimus]

Hi Susana,

Thanks for the reply.

I've had a few good days. Kinda important to focus on them when they come.

Feeling much better about those close to me, have had a few chats with them and let them know that while at the moment I have time and energy to be there for them there will/might come a time when I need to be selfish and lean on them for support, they've been amazing. I am so lucky to have my friends and family.

Started on letters, might take me a bit to work through them. Nice insight that it's the process of writing them that matter to me, not whether I send them or not, frees me to say what I want to say without worrying about impact etc. Will ask my partner to edit them before sending.

Love and hugs, Mo

[Mohanimus]

So I have a question...

I am in a pendulum swing of death/denial about my situation, and I'm reading other posts on this forum. Do I reply, given I'm gonna drag my baggage into that? or should I wait till I have something CONSTRUCTIVE to offer?

If you're reading this know that I can anything, extreme doomerism included as that's where I am THIS HOUR.

I love you all (EVERY SINGLE GOD FORSAKEN BROKEN UNLOVED WEIRD LITTLE PERSON READING THIS)  Mo

EDIT: I just want to tell people who are at the bottom of the swing that being told you're gonna die IS NOT THE WORST THING. There's a spectrum of stuff, you might be okay, you might die, you might die in a horrible sudden way.

Dying with dignity, in your own way, dying with a time to say goodbye to those you love. THIS IS A GIFT. This is not the worst thing.

Edit done.

[Felicity_CCNSW]

Hi Mo, 

If you feel that it would be beneficial to yourself and/or someone else to respond with your thoughts and insight, we encourage you to contribute to the forum. 

All insights are valid and we greatly value your contribution to the forum. 

Felicity

Cancer Council Online Moderator 

[Mohanimus]

Hi Felicity,

I appreciate your reply, I'm just acutely conscious of how unhinged I am at the moment and how I might read a post on this forum and respond inappropriately.

I swing from strong to broken so fast at the moment that I not even sure I could read back over MY OWN posts safely 🙂
 
I'm not sure I ready to actively participate in a forum like this.

There's a thing I've been dwelling on, a kind of attempted accounting for my life. Like I'm my own Anubis, trying to hold the harm I've done in one hand and the good in the other.

Story time, I'm in Sydney, waiting outside my partner at the time's work. She comes out and shares that in a discussion with her co-worker said co-worker remarked that she didn't find me handsome as my lips were too thin. This I carried with me for 30 years, every time I looked in the mirror, even on my best face day, I wished my lips were bigger.

THIS story, stupid as it is, looms large for me at the moment. The woman in the story didn't mean to hurt me, she never even knew my name, she probably never even gave me a single thought outside of the tiny second long window in which she was asked to answer the question of "is this guy attractive?" And yet somehow this hurt me.

How much pain have I inflicted in my 50 years? I mean I can go through the things I've done that I carry with me, the crimes that blacken the heart I offer up to my judge. But how on this earth or the next do I account for the hurt I have left behind me with each step, the unseen crushed butterflies that have devastated an Amazon?

AT ANY RATE, to drag this post back on track... My fear is that in my own grief and downward spiral I'm going to lash out, I'm going to say something to some also profoundly vulnerable person that HURTS. And I can't EVEN at the moment.

Can I TRUST you to stop me or should I stop myself NOW?

My apologies for laying this on you,


I love you, Mo