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It DOES Get Better

Laralyn's picture
Laralyn
Posts: 436
Joined: Apr 2012

This is my first post in a while, but I've still be visiting and checking in on folks. I don't have a good answer for why I didn't post anything for the past month or so. Sure, I've been busy but that didn't stop me before. I think part of it is that I've been figuring out what it means to be out of treatment, and how you live with what you went through. It changes you in ways I didn't really expect.

I was diagnosed with Stage VI SCC of the left tonsil and soft palate, strongly HPV positive (in every biopsy cell tested). I had 35 IMRT treatments and cisplatin chemo every week for 6 weeks (I missed one chemo). I got super sick from the narcotics and ended up with gastroparesis, which shut my stomach down and made me throw up anything I tried to eat for about 5 weeks. I had a PEG tube, and even so I lost 50 pounds during that period of time (I could afford the loss in terms of overall body weight, so it's not as bad as it sounds). Treatments ended June 1, and my first PET scan in August was all clear. Since then, I've had two check-ups with the scope that have also been clear. I had the PEG tube removed in mid-September.

My life is different now for sure: I have trouble swallowing (still) from inflammation, my taste is still messed up, anything remotely spicy burns when I try to eat it, I'm still tired a lot of the time, my skin itches like mad (curious to find out if that's a side effect from chemo?), I have pins-and-needles pain down both legs sometimes when I walk (also curious about whether it's chemo related), my jaw painfully tightens up every couple hours, and my mouth and throat are still very dry. I worry about my next scan and whether the cancer might come back. It doesn't take much anymore to make me cry. Even with all of that, I genuinely feel blessed and lucky.

All of those things, even when you list them out like that, are bumps in the road. I mean that honestly and with all my heart. To everyone in treatment now or just diagnosed: as time passes, you start feeling better, and the "new normal" is what you make of it. If I think about the amount of time in a day that any of these changes really matter, it's a total of maybe 30 minutes of my whole day. The remaining 23.5 hours of my day are pretty much the same as they were before, except I feel like I'm finally really awake to enjoy them. Don't doubt whether the treatments are worth it or dread what life will be like afterward. No one knows what you will experience during or after treatments, and no one knows how long a life he has, with or without cancer. Just focus on each day, each moment, and know that time will pass and you will get better.

I hope everyone riding the bus with me earlier this year is doing well--I've been thinking of you!

zaac23
Posts: 24
Joined: Dec 2010

Amen

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

love your attitude and thanks for posting.

hwt's picture
hwt
Posts: 1854
Joined: Jun 2012

Thanks so much for posting. I've thought about you often and was hoping that you had just gotten on with life and were doing well. You've had a difficult road but the hard part is in the rear view mirror for you now. Great to hear your scan was NED, makes it all worth it. I have a PET this Friday and all of the anxiety that goes with one but staying optimistic. I've been going to neck massage therapy and mid-Nov. will spend and hour or two a day in a hyper baric pressure chamber for 30 days then begin the 6 mo process of getting implants on lower half of mouth. My 6 months "treatable and curable" is turning into 1 1/2 years by the time the teeth are done. I am thankful for the amount of energy I have.
Well wishes, please pop in now & again to let us know that you're doing ok. God Bless!
Candi

ditto1
Posts: 630
Joined: Mar 2012

so nice of you to have commented on my CT scan concerns, and I and Diane were so happy to see you back on the forum. You have done a great job getting thru this crazy time in our lives and have been an inspiration to all of us. The one thing about you that impresses me the most you always conclude your comments with something positive when in fact its hard to believe anything could be. And those positive comments always reminded me that no matter how bad it is it could be worse so be grateful. Good Job. Hope to see more post and we pray you will continue to get better each day.

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Great to see you post! Great to hear you are on the raod to recovery.. :)

Best,

Tim

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

you know me, "the snoop"....I really do get curious about those who were on the bus with us, how they are doing...and what's happening in their lives now. I always felt so close to you when we were going thru treatment. Hard to remember that tho we only started treatment 2 weeks apart, you finished SO MUCH earlier than I did!! :)

All these new little sensations, and feelings do come infrequently when you consider a day is 24 hours long...so you are so right about the changes adding up to a meer "minor part". Every time I bend my neck to my chest I give my feet an electrrical shock...LOLOLOL....doesn't hurt, just surprises me.

I don't know how long it takes to actually "heal" from all we've been thru.....I mean we've been radiated and poisoned with heavy metals...ha! What's it take to get over all that??

I'm glad to hear you're still hanging out, even if you don't post...at least I know you're there somewhere.

p

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

Hi Laralyn,

Nice post, we definitely are changed. Sometimes it’s like a different person in my head. My emotions are right on the edge, but my patients has increased. Anyway, I am glad you are fine, keep getting better.

Best,

Matt

NeoTheron91
Posts: 77
Joined: Sep 2011

I hope to get better for my situation too. You're absolutely right. No one know what will happen next!

Cheers,
Neo

fisrpotpe's picture
fisrpotpe
Posts: 1322
Joined: Aug 2010

very well put and reminder to so many fighting, beginning recovery, even those 6 - 18 months post treatment.

recovery just never seems fast enough but it does get better over time

thanks again for the reminder

john

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