I Admit I Am Jealous and Angry And Missing Belle (NW Girl)

[Julie YW]

Hi all (especially to the newbies). I haven't posted in awhile and am more of a lurker anyhow. You can see the details of my history with this fucking disease. In December, I learned of a quick recurrence to my lungs which is not treatable with anything other than chemo. My CEA keeps rising so I'm sure we'll have to change things up soon. Anyhow, my family -- I have a husband and 2 girls (ages 3 and 5) -- just went to Hawaii and there I found some peace. I acknowledged, I mean really acknowledged for the first time, how angry and jealous I am. I write about it in my most recent blog post. And I admit I'm not jealous of the people who have never had this disease and get to live a long life. I'm jealous of the people who are Stage IV and somehow get out of it. That really tears me apart. I hate that I'm jealous and so ungracious, but I know I'm not the only one with such feelings.

I miss Belle (NW Girl) and her monthly blog posts for the Colon Club. She wrote with a beauty and insight that I cherished. We connected through our writing. I wonder what she would say to this last piece. I miss her. She was my guide through this disease, the experienced one who gave me clues about what is to come.

I vowed when I started blogging that I would be brutally honest -- no fucking sugar-coating, no pumped fists, no rah-rah-rah and all that other bullshit, no talk about hope and how we all have to be positive. I explore the darkness, walk through it, to find the light. I refuse to live in a world of delusion. Most of all, I wanted those people who didn't feel positive and hopeful and strong and all that annoying inspirational b/s the cancer community likes to shove down our throats to feel okay in their darkness; I wanted to legitimize their and my feelings about this disease.

Anyhow, this most recent brutally honest post has generated a lot of reaction so I wanted to share it here, in part in honor of our dear Belle. (My 3-year-old is also named Belle).

https://julieyipwilliams.wordpress.com/2015/04/11/827/

Julie

[exaussie]

Oh my dear that's a totally natural feeling. I feel that way sometimes about my son. He only made it 14 months from diagnoses. Blogging what you feel will help. So glad you got to spend time with your family in such a beautiful place.

[elise]

(((HUGS)))

There are so many I miss. XOX

Elise

[kirac]

I always look forward to reading your blog and posts. I will continue to look there. The reality is that cancer is fucking depressing and unfair.

[Val*pal]

I always enjoy reading your blog since I feel it is so honest and real. You're willing to admit to the base feelings all of us experience when going through something frightening. For months after my husband died, I experienced pure hatred for other older couples I saw shopping or dining together. I felt cheated. You help to validate what others are surely feeling.

I also respect the fact that you are facing this head on. In my husband's last months, I had to grit my teeth every time someone said "there is always hope", "pray for a miracle", etc. By saying those things to me, I felt my own reality was not being acknowledged and I therefore had no one to talk to. Very few people actually listen, unfortunately, and though I'm sure I've done the same many, many times, it doesn't help the person who is trying so hard to be heard.

[Rheaeliza]

Thank you for a beautifully written piece. The jealousy is natural, I think that we all must experience it to some degree but often don't speak it. I have felt bad sharing good news, but this community was the first I joined in 2012 when I was diagnosed and told incurable and chemo for life, and even with the jealousy, I truly enjoyed the good stuff from people I felt were friends. But I did (and do) I feel jealousy at those who did not have to face fertility decisions at 30 years old, those who were financially stable, and those who were NED, at those who seemed to have similar surgeries as me but didn't have an illeostomy, but mostly I was jealous of those diagnosed with lower stages, because NED at stage 4 is almost a false hope, it doesn't offer the same sense of security that it does for other stages. So now, at NED(and I am thankful to be, don't get me wrong) I know my CEA could rise any minute, my scans tomorrow could show new disease, and I could be gone before anyone else here. I have seen it happen so quickly. I connected with several stage 4 people, some of who aren't here anymore and it's not fair, how one day things were okay for them and then not. I don't think that there's a reason for it at all, and I do think that the pain you experience at the thought of leaving two young girls probably magnifies those feeling even more than those of us without children.

The feelings that go with this disease are so complex, and while all of us share a lot of the base, natural, core feelings, they have so many individual tentacles and layers and extremes unique to each of us based on who we are and where we've been, that at the end of the day, we can truly only know how we feel, and the way you put mind and feelings to words on computer and out to all of us in such a brave, raw way I imagine helps others figure out there own feelings in all this craziness, and that its okay to have darkness in there. That hope is good, but it won't save any of us.

[CM35]

Julie, you know I follow your blog, and I have deep respect for the way you acknowledge the dark side of stage IV cancer. I feel the same jealousy, and strongly dislike the feeling, yet that doesn't mean it doesn't exist. I am preparing for my 3rd surgery, supposedly "curative intent," but it feels kind of like a joke, considering both times I went off chemo, my cancer came raging back. I see others with slow growing cancer, easily resectable, goes away and stays away, and it's hard not to wonder why them and not me? It's so random and unfair. It seems like the cures should go to those who would make the most of their time, the most deserving, and it doesn't work that way. You, and we, have been dealt a shitty shitty hand, and it seems no matter how well, how strategically, we play our cards, there's no winning in the end. It makes it hard to push on day after day, after week, after month. It's ok to feel that way, acknowledge your feelings, and anyone who doesn't like it, well, eff off.

Val pal, I totally agree with the "pray harder, don't give up hope" comments. I am a Christian, and I believe in God, and I pray. But He isn't freaking Santa Claus! It doesn't work that way. I just want to say, "So, if I die, is it because I didn't pray enough, or the right way, or I wasn't faithful enough? Or is it that I don't have enough people praying for me?" Because that is utter BS! I clearly have a far different understanding of God and faith from that subset. I know people mean well, but it is very annoying, and hurtful in a way.

Again, all this acknowledges that the feelings and emotions intertwined with advanced cancer are extremely complex. Because even though the dark side is very real, deep down, I think we all still have hope. For me, the sliver of doubt that things could turn around for the good is still there. I think hope, however unrealistic it seems, is what keeps us, or at least me, pushing ahead. It changes form, maybe isn't as vivid, but it's there. Thank you for sharing all you do.

Colleen

[Julie YW]

Thanks all for your comments. A few people have mentioned hope and as I said in my blog post, it's a word I hate. I have such complex and contradictory feelings about it. Hope requires a lot of courage because it inevitably leads to disappointment and heartache. And I'm sorry, but I don't have that courage. I feel like such a loser for not having the courage. I feel like a defeatist. I wrote about hope when I was feeling more hopeful. Not so much anymore. Probably the subject of another entry. you change throughout this. At first, you do have hope. At first, you do have the determination to beat this thing. And then, over time, all of that gung-ho stuff goes away and you find yourself left with...what? A hopeless acceptance, gratitude for what you would have never accepted before, one-sided conversations with God. This cancer thing for us stage IVs is truly a journey of the soul and mind. The subject of a future post...

Thanks for reading everyone! Sometimes, I'm convinced that no one reads and so I feel free to write whatever I want to write, for myself, for my girls (who I hope will read one day).