Tuesday, 6 December 2011

NOTHING UPLIFTING YET

Goddess knows I would just love to have something brave and cheerful to say to you for a change. Truth is though, that I’m only just at the point (7 days after my first chemo of this round) that I dare see friends or talk on the phone. Why? Because the cancer drugs and the drugs to mitigate the effects of the cancer drugs make me mean as the proverbial snake. I have to maintain radio silence for fear that I will aim some malicious, warty-toad of a remark at an unsuspecting (and undeserving) well-wisher.

 Or, just for the sake of variety – I plunge into despair and desolation so deep I resemble the Tarot deck’s Ten of Swords. I mean, just  look at the picture -how dead can you get?

Today is a little better. I went shopping with a friend. And then we went out to lunch. Two stalwart souls I’ve known for 40 years lugged my groceries upstairs and came to visit – in spite of my complete lack of charm or civility. Thank heavens. And while I felt just as bilious as I have for the last 7 days,  it was an improvement to feel  nauseated  and bilious outside the apartment – wearing makeup, dressed like a human being instead of The Creature From the Laundry Basket. I count my gains in small increments. Getting dressed. Washing the dishes. Taking the garbage out. Answering the phone. 

I don’t have to dig so hard for the losses and currently, the one looming largest is a significant hearing loss in my left ear. At first I thought it was the cold that is still lingering on after over a month…blocked ear canal etc. But today, I googled “chemo and deafness” and guess what turned up?

“Deafness From Chemotherapy More Common Than We Think”

I had mentioned this creeping deafness to my GP, my medical oncologist and my radiation oncologist – all of whom either didn’t know what to say or didn’t bother to tell me what they knew. My GP looked in my ear and remained silent. My medical oncologist simply did nothing and didn’t comment. And here's the icing on the cake - the worst offender is Cisplatin - the big ugly toxic gun they are using on me.

Tomorrow I see the radiation oncologist – and I’ll mention it. Again.  And I’ll ask about the possible reduction in IQ that may come about as a result of the brain radiation that is scheduled as the grand finale to my treatment.

Tell you this much. At this point, it’s too late to turn back – but knowing what I know now, I’m not altogether sure I’d agree to this kind of “cure” ever again.And I think I'm about to stop feeling guilty about being angry. Before anyone jumps in to tell me that the docs are doing all they can - I know that. But I can't help wondering how many "deficits" they would be willing to personally take on were they in my situation. And how would they feel about the (literally) deafening silence from those in charge of caring for them?

Poor readers. I'll try for something more uplifting soon. A few more days, I tell myself, and except for the deafness, I'll feel like my old self. A self I remember as being a great deal more charitable than the self I've been stuck with for the last week or so....

9 comments:

Lea Avroch said...

Linda, while I have not personally battled cancer, I did have a 2nd major spine surgery last September & experienced many of the feelings you are experiencing.

I know it's disheartening right now & that light at the end of the tunnel looks like a mere speck right now, but I promise you that things WILL get better & that light will shine brighter! For the 1st time in my life, I actually contemplated suicide. Not a pretty thought or admission, but the honest truth. I was petrified that I'd be crippled for good following the surgery since the pain was severe at times. I couldn't imagine living my life that way.

With all my friends, it was just ONE that helped me physically & emotionally to get me thru the dark times....& my husband. If I might make a suggestion, take your friends up on any offers of help or just a day out. The fresh air will do you good. If they're true friends, they'll put up with any bitchiness & know it's the chemo talking & not you. & if you need to talk, feel free to message me on facebook: Lea Avroch

You probably don't see it yourself, but you are one courageous woman and I admire you so!

Roberta said...

Don't be uplifting on my account. I listen no matter what you say or how you say it.

Is the deafness permanent I wonder?

Howpublic said...

Roberta - yes. It's permanent.

Lea...I understand. I understand how your surgery and the fears around it are close to my fears. I understand feeling so down that it doesn't seem worth the struggle. And I'm lucky - I have several friends who can tell the difference between me and my situation - and they do help, all the time...much as I tend to push them away, time to time. Thank you for telling me your story. It's good to know there are "afters" - and although they seem SO far away right now, I do cling to the thought of them.

Cynthia Newcomer Daniel said...

Don't worry about being nice on my account - I'm not going to get offended no matter what you say or do. If it makes you feel better to let it out, then bring it on!

Howpublic said...

Okay, Cyn! I just got a note from a facebook friend who encouraged me to stay pissed for a time. I think there are times when "nice" is just not genuine at all!

Cate said...

Your pissiness is always welcome in our conversations. Bring it on! You are such an eloquent writer, no matter what you mood you are in when you do it. Love you.

Cynthia Newcomer Daniel said...

Sometimes nice probably takes more effort than it's worth. I'd be pissed most of the time, I think - so grab it and run with it.

Pat Barber said...

Nice counts only if it's genuine. If it's not genuine, it then becomes betrayal. Stop betraying us, stop betraying yourself. You fault your doctors because they can't be "genuine" with you(aka "clear") - and yet you yourself can't be genuine? How exactly does that work? I love you and I have such great awe and respect for your strength and courage, Linda. I do. But no one, absolutely no one - with the possible exception of you - is expecting to see nail holes in the palms of your hands or a halo over your head. Permit yourself to be genuine, Linda. It will empower you, and in turn it will free us as well - to support and love you genuinely. You're in the fight of your life, Linda. This is NO time for a masquerade ball (sp? - aw screw it, I'm too wound up to check the spelling!)!

Howpublic said...

Pat...Just so you know, when/if I am not authentic, it is that I am trying to whistle past the graveyard. No one tries to be inauthentic, but defenses do crop up. At first, I tried just to stay silent rather than hold forth when I'm really down. Why? Because it's chemical. It's passing. And it scares the shit out of my close friends. Also...I have this personality tick of sometimes repressing so quickly that I have NO idea of what I'm feeling...until it starts leaking out in odd ways. That's how our shadows work. We can only observe them symptomatically, so to speak.
When I met David (the hospital chaplain) our conversation made me realize how much I'd been holding in and holding down. However - I have never knowingly been nice or cheerful on the blog when I didn't feel it. And by the way, I think you did okay on "masquerade" - but then I'm a dreadful speller!
Love
L.