Today, for the first time, my personal boat was rocked by a post from someone who is now NED. I had to think for a while. What *is* it about this post that makes me feel so bad?
NED! NED! NED! She's was so happy, she was climbing the walls and wanted to be peeled off.
Don't get me wrong -- I, too, am happy for her. But reading her post made me sad that Ex will never be able to make the same proclamation.
My point is that there is an inherent flaw with the free exchange of ideas from all contingents on the cancer front. Even the best news, or the funniest stories, or the saddest of tales will ripple out and affect someone negatively. There seems no way around it.
Therefore, I ask you, is it more helpful to write our feelings so as not to offend anyone? Or do we post what we truly feel and hope that everyone from all sides of the issue will try to remember that, while we may all be in the same boat, we all have different seats, different windows, and differing degrees of hope depending on our seats -- which are assigned and labeled.
While I believe our seats are assigned by God, the exact identification numbers on our seats are being assigned by doctors who are human and fallible. And, while more people are being cured of some cancers, other cancers remain illusive in their cures.
When I recently reviewed my post of The ShamWow incident from March, I noted my own optimism then, compared to now. And I read the same optimism in the posts of others who were like me then, new to cancer and new to the boards that support its victims.
Here is that post. It was written by my former self.
Radiation Treatment Day Nine
Looking back, I am a little embarrassed by my naive optimism. It stands as a testament to how little I knew then, and how falsely encouraged I was by other posts of NED.
If you read closely, precious few with Ex-SCLC get NED. Folks with Ex-SCLC are seated in the USS Cancer and issued comforting pillows of hope on which to sit. But as the ride continues through oceans of rough seas, there is still isolation amidst a pandemic of kindred souls, and our cushy seats wear thin from the boat's never-ending rolling and rocking along toward the inevitable premature deaths of our loved-ones.
Those in Ex-SCLC seats have no life rafts, no personal floatation devices, and no life lines. From Ex-SCLC seats, we will never see NED; only CED (continued evidence of disease) and GED (greater evidence of disease), and their father, death.
We found this little flag between the Ex-SCLC seats, so we can wave it for the lucky NED, but then I think we'll put it away and see what we can do today to make our seat less hard as we ride the tide to which we are bound.
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I find myself not reading the NED posts. I'm happy for them, so happy someone is NED. But I just can't read them right now. I don't read much of anything on the board anymore.
ReplyDeleteMy biggest problem with the all inclusive board is the insistance of optimism. I don't think they all realise what a dx of Ext SCLC includes.
But I am sitting here looking at Mike watching the Bears get beat, again, and he is laughing, he is enjoying his day, his son, his chair. I know the EX is going through a rough patch, and it may be the beginning of the end, but there have been several times when I thought Mike was at the beginning of the end, and the doc found a new idea, a new radiation, a new chemo.... more pain meds, different pain meds...
So while I'm not going to insist on optimism if you don't have it in you, right now, I'm optimistic for us. After last Christmas, I honestly didn't think I would get this Christmas with Mike. In August I didn't think he would still be here for Christmas, but he is, and is feeling so very well, for someone who is dying....
Again, thank you for hosting this blog, where I can say the things I can't say anywhere else, to anyone else.
And I am going to get a ShamWow....
Who needs a ShamWow, when you have this place to suck up all your closet thoughts?
ReplyDeleteHow wonderful it is that Mike is awake, laughing, enjoying life! Makes me want to stop by with a tin of homemade ChexMix and some gingerale and lime sherbet punch! Not that Mike needs or wants ChexMix and punch; they are just family delicacies (my family is SO fancy!) that I'd like to share with you!)
Marg, you are my spiritual inspiration. When I see the strength of your faith, I want to be like you.
I cannot wait to meet you someday! How wonderful it is to have you here with me -- with "US" -- the tiny few, the unproud, the serinely insane, who have gathered here to say what what really feel.
We do this together, here, so as not to peel away cold hard realities for those who choose not to accept them, and to embrace our journeys as God's will, and be thankful for the blessings we have, however they may be laid before us.
Sometimes, as I count away the months from home, and think about my dear, poor, lonely spouse, and my blessings seem thin.
I forget that, as promised, my blessings have been enough to fill my cup to overflowing. I have rediscovered a voice. As our Father said, I have given more than I've asked to receive, and I've been given a chance to prove that "until death do we part" is not necessarily nullified at divorce.
By example, I've shown our son and the World, what true love can be. And, even though I remarried and moved on years ago, my Ex will be loved and cared for through to the end.
My husband and I will be stronger and more spirit-filled, later, in reward for our sacrifices today.
Now, if you really gotta have a shamwow, go to Walgreens, Walmart or Sam's. Or, order online, but accept the standard shipping because the threats of months-long deliveries are a scam.
We're well-stocked with ShamWows here in Exville, which is good. Because it's going to take a mountain of ShamWows to absorb the tears I will shed between now and the end of all this madness.
I don't think you start out with naive optimism, at least that's not what I like to think. I believe the word is HOPEFUL. When we begin this journey we know little of what this cancer entails, so we are very hopeful for remission, even a cure. As we move farther along in the lung cancer world we start to realize there is to be no cure, but we hang on to remission. After all, that is possible for some, why not for our someone?
ReplyDeleteAt this point you are even farther into the lung cancer journey. Far enough that you are well aware of what is going on and what will eventually be. It's difficult to hang on to optimism when you see all the signs are pointing in the opposite direction. It's a nightmare and there is only one ending, which is not the one we were naively optimistic or hopeful of.
I know it's hard to read the posts proclaiming NED. It's hard to be happy for that person, even though we know we should be. That person has also been down the long hard road of lung cancer treatment and while they have every right to shout out their delight, we have every right to wonder, why not our loved one -
But there are miracles, right? At this point we believe in miracles, we have too because if we don't we have lost hope.