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Pockets please

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

 hi.  We get our first post tx scan tomorrow.  Anxiety is high.  Hubby has been having this cramp on left side....like runners cramp and it usually starts when he begins his long drive to work.  So, he is worried that will show as something bad on the PET.  He is so frustrated by the fatigue!  That bothers him the most.  His taste is still screwy.....he can kind of taste that savory taste.  Sweet is totally gone.....waiting for it to swing back around.  He was supposed to get PEG....but in surgery they aborted that plan....position was problematic.  So....he has been eating the whole time....or more like swallowing.  He ate really mushy Mac and cheese and cheesy scalloped potatoes and squash the other night.....that was a big accomplishment.  I can't wait for him to be able to bite into something.  

Can we be in pockets for a while.  Tests tomorrow.  Results on the 9th.  Any good prayers, positive thoughts are appreciated.

And any advice on the fatigue is welcome.

Thanks- Kirsten

 

CivilMatt's picture
CivilMatt
Posts: 3090
Joined: May 2012

Kirsten,

 

I just got back from a stay at a H&N 5 star pocket and it was great.  I highly recommend it and have booked your Hubby through the 9th.

 

Eating, not eating, tasting, not tasting, that’s something we all have in common.  I can now eat anything, but my taste is more imagination than reality.  I taste a hint of everything with the greatest bam coming from spicy.  It is not much, but it puts a kick in some foods.

 

As for fatigue, I think I‘ll sleep on it.  I hear you; if there were any money in falling asleep I would be rich.  The doctors are monitoring my Thyroid, but so far it is normal.  So I am working at getting in better shape.  I love working outside so I do it as much as possible.  I also get plenty of nutrition, I am well hydrated and I sleep great (eliminate the obvious first).

 

Good luck on a clean scan, better tasting and more energy.

 

Matt

Laralyn's picture
Laralyn
Posts: 454
Joined: Apr 2012

It gets better over time. It's also normal to start worrying about whether physical symptoms are related to recurrance. I think we all do that.

On the bright side, it's great that he's back to work already and able to eat! Both were still pretty sketchy for me by the time I had my first post-treatment scan, so he's doing well overall!

I'll be thinking of you tomorrow and here's to hearing NED! :-)

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

Just knowing he has a scan coming up might have given the pain in his side.....I had more aches and pains in the 3 weeks before the scan than the 3 months prior....and they magically disappeared the day I got the scan.

Still.....going to tuck him deep in the protection pocket....I truly believe he is going to come out smelling like a rose.....

p

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

kirsten:  i too am tucking ur hubbr in my pocket.  i pray for a clean scan and the pain to dissapear.  prayers are being said 4 u & hubby.

God bless,

debbiejeanne

MarineE5
Posts: 762
Joined: Dec 2005

Kirsten,

Prayers outbound for both of you.

As far as the fatigue, my Radiation Oncologist told me that after receiving radiation, the fatigue could be an issue for roughly one year. When getting bloodwork done, have them check his Iron levels as well as his Thyroid ( TSH ) levels. My RO stated that it wasn't a matter of, if the thyroid might fail, it was a matter of when it would finally fail. My thyroid lasted nearly 5 years and I once again experienced fatigue. Was put on med's and am fine now.

My  Best to Both of You and Everyone Here 

Duggie88's picture
Duggie88
Posts: 570
Joined: Feb 2010

I get cramps on my right side. Had them for three years now and the most painfull cramps I ever had. I have been able to divert them if I can catch them in time. My wife claims they can't be half as bad as her pain in the neck. That might be me but we ain't mentioning names.

I'm taking my wallet with all my money out of my pockets to make room for ya. Now someone at the office is gonna have to buy me lunch tomorrow.

From where I'm sitting I can see a clear PET

T's & P's

     Jeff

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I am praying for a positive outcome for Your husband. 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Kirsten,

Sorry about the high anxiety -- not easy to abate.

However there's always a pocket here for you.

Our ENT told my husband that he should expect another 2 months of exhaustion, that it's completely normal. That was at 10 weeks out of treatment.

I hope that your scans are clean and the energy returns. Warmer weather is due in next week - we are hoping it will help!

Kari

katenorwood
Posts: 1862
Joined: May 2012

Kirsten,

Sending positives for a clear scan.  The fatigue....will improve with time.  Healing is a tough road, but he will get there for sure !  Katie

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

That was very painful surgery for me. Did they make an incision at all and why did they abort? Is it possible his cramps stem from the PEG attempt??

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Headed your way....

I seriously doubt the pain will turn out to be anything to worry over... But if it is, the PET will pick it up... Better to find it upfront instead of later.

As for fatigue, as my fellow Marine suggested, have them check out your TSH and Free T4 levels for thyroid function... Other than that, it takes time to recover.., your body has been in a war zone...

Good vibes on the scan results..

JG

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Whispered a prayer as well.  :)

I slept the first full month after my last tx....good grief I did not think I would ever fully have energy back even months later, then one day I was well ramped up and feeling better.  Even till today (fourteen months later) now and then I find myslef using pain meds, the latest reason would be for my elbows / pain ..really bad!!! 

As John said, your body has been through a war zone, scorched earth kinda war zone...check the thyroid, plenty of fluids...all will get better eventually...

Got you tucked...keep us posted.

Tim

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

Thank you all.  This is such a gift to be aexpress receive such support from the only people who truly understand.  I get more here than from "friends" who have known me years!  so thanks for the pockets, prayers, good mojo, and encouragement.

Had PET and HN contrast CT yesterday.  Also had radiation MD appt.  At the appt, rad MD Said I can take a look at your PET....totally caught my husband off guard and my husband said, "that's ok, I'm good".  After a few moments, he was able hear decide he was ok to hear whatever it was.  MD says it's preliminary bc only the residents report is on there....hasn't been reviewed.....but "initial report is favorable" and "nothing suspiscious noted".  On Tuesday we get final report.  Its hard to relax after being sucker punched by C before.....so although it looks good, I will hopefully celebrate on Tues.  Onc MD said that the landscape of his neck is altered by chemo and rads so there are lots of notes about the new normal on the PET.  It is a war zone/scarred and scorched earth so to speak.

I asked about thyroid.....they monitor but feel his exhaustion is expected now.....not out of the ordinary.  And when they heard he is back to work 4 days a week and has an 1 1/2 hour commute each way......he said, so you are tired after working 4 11 hour days?......normal people would be tired from that.  So you are doing very very well.  

Thank you all so very much!

Kirsten

ps....hopefully I can check out of pockets on Tuesday.....anyone need a reservation?

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

I think everything looks great and also Tuesday's report will say the same! So don't worry too much! Anyway, you're tucked in my pocket till then.

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

that all will be well~~prayers from Ohio

luv4lacrosse's picture
luv4lacrosse
Posts: 1409
Joined: Jul 2010

A deep pocket full of prayers and positive thoughts headed your way.

Mike

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