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Is there anyone out there like me?

LittleGrimm's picture
Posts: 1
Joined: Jul 2013

I've been meaning to write somewhere like this for a long time, but I get busy, don't have the energy mostly.

I am 24 years old, was diagnosed with stage 6 (yes) Nephroblastoma at age 4. Was given two weeks.

My parents begged. The doctors conceded. Included me in a clinical trial. Frequent and enormous doses of differing chemotherapies. No radio, as it would have killed me outright.

I lived in a ward full of other children with terminal cancer. I survived the treatment, an outbreak of HIV at our blood bank which wiped out half of us in a week, a full right nephrectomy, and eventually I survived the tumour.

But my friends didn't. And now there are all these... things.

The side effects started when I was 9, right after remission. Heart, lung, concentration, learning issues, and serious deficiencies. Was called lazy and ungrateful for having no energy. Tests since have shown that I had real problems because of my treatment, but I can't blame my parents, who gave me everything, for just wanting me to be normal and "Stop breathing like that!" when an attack came on.

Past all of that, which was basically just life happening and not too big of a deal. I wonder what the things I saw did to me. You can't unsee things. I am generally happy. Successful in my field, in a loving relationship for the first time ever, and mostly healthy.

I understood that I was dying back then, at 4. I saw other children die, a lot. I saw pain and immense bereavement. Children know things... and all of us, we were like a little group who knew about things before they happened, wise little creatures shuffling around, knowing things would get better, knew what it meant when our parents came and left hollow-eyed, knew we were leaving, except I never left. They died and left me behind. All of them.

And I don't know what that means. The time I woke up and the little girl next to me had passed away. Her mother was holding her, and my mother was holding her mother. And this woman was screaming as though something had been torn right out of her. Because it had been... this was my every day... and it is not my grief. I feel almost selfish saying it effected me in any way, but how could it not? She screamed scene appeared and screamed.

I see their faces. I see other sick children and feel like one of them in another body. I will always belong with them. It was all so every day for us, and now they are all gone and I am like the Last freakin' Unicorn, and I want to wave the flag for them but sometimes I feel so weak. Some times I close my eyes and see terrible, terrible horrific things.

I've done lots with my life. And I was probably a very strange creature before it all happened. It's not so bad being alone either, and knowing all I know. When people complain about small things, I am quietly glad that I am not them.

But it hurts. I wish I could tell my friends who are gone, how precious they were, how I will always remember them, always try to be good for them. I suppose I know they know that.

I'm good at being self sufficient on this topic. Too much to even really broach what the problem is. Maybe just wondered if there was anyone else out there like this. Who feels like they exist between worlds. Who never got on the spaceship with everyone else. Who got left behind. And a bit like Death is their homeboy. I know it's there, it knows I'm here. We've met. We respect eachother. There was no deal made, it just can't have me yet.

The whole cancer thing made me who I am. Or what I am. But I don't know what that is.


lp1964's picture
Posts: 1238
Joined: Jun 2013

I happen to tumble over your post and thought I share my though with you. I'm a 48 year old male with a stage 3 rectal cancer, after radiation and first round of chemo and before surgery. I'm married and have a 15 year old daughter. I haven't gone through nearly as much as you have. At the same time I believe that all patients with life threatening chronic illnesses have similar views on life like you. I think the reason is that our illness gets us detached from the world and we fill isolated. Pain, fear, anxiety, tiredness all tend to make you feel like that, they shrink your world. When you spend too much time in your head with your own problems, you lose references and your thoughts may become unrealistic and distorted. We need to force ourselves to open up our world, get and maintain connections with others, art, music, humanity, spirituality etc.

When you spend too much time in your head you also start asking the wrong, meaningles unhelpful questions like: why did this happen to me, why me, why not other bad people? Then you have unrealistic view of yourself even though you have all these values, skills, attributes, kindness. You still tend to fill less than others. It's a tough one. 

Cancer can take a lot away from you. That's reality, and there is nothing you can do about it but deal with it. But if you really look cancer also gave you so much good too. In my case it strengthened my marriage, my relationship with my daughter, pulled my larger family closer, I'm more aware of others in need etc. 

You have come a long way. We need to deal with the bad, but mainly search for and find the good, stop and appreciate it.

Thanks for listening.


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