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#147679 - 04/02/12 12:27 AM Re: Radiation worries. In need of some major advice [Re: braziliangirl82]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4762
Loc: Toronto canada
Hi John sorry your dentist sucked... I get it - though I think in some way you needed to hear some of what he or she had to say. A lot if the time we jump into this thinking that the drs. Will tell us everything.. The truth is unless you've been there you generally don't know and frankly if they tell you everything you'd run screaming from the room and never look back. Radiation has major fallout in some cases... Some even the drs haven't seen (only another survivor might have experienced) that's why getting a clear picture of what MIGHT happen isn't necessarily a bad thing. It may save some major anxiety and fear somewhere down the road. Though I imagine he or she could have been more sensitive - mouth cancer does definitely effect our lives drastically though there are other kinds of cancer that offer less hope and are more difficult to cure. Frankly I would prefer never to have heard the words cancer cross a drs lips, but it is what it is. There is some loss of our former lives.. I hear you but the reality is - when you get through to the other side - and climb back up that steep slope, you will have survived, you may be changed you may be challenged but you will be here, and truthfully there are many others who never make it up that slope but fight like hell and would give anything to get there.. So my advice - cancer can and will kill you if you let it. There will be times through treatment where you will want give up and just die in the corner... There will be times where swallowing is impossible and you will hate your caregiver for forcing you to drink, eat, swallow, etc... The only person who can get you through this is you... Do you want to live? I mean drama aside, do you want to live - really? Then nutrition and hydration is of primary importance.. Even if it has no taste or tastes like dog crap, you have to eat it or use your peg, you have to get fluid, you have to rinse your mouth, you have to take your meds, you have to keep your mouth clean, you have to do whatever it takes to get up that hill. Then eventually you will get your taste back, and hopefully eat normally again (this has a lot to do with diligence and persistence - and forcing yourself to swallow, even if it's just to drink lukewarm liquids). I know that's brutally honest. It it's the truth. How you come out the other side depends on you - you can fight to Maintain your quality of life, or you can waste your energy fighting your caregiver. Ps your mom loves you and forgives you it's what moms do! And so glad you got your tickets !!! Definitely strive to go! Hugs and good luck.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#147693 - 04/02/12 01:31 PM Re: Radiation worries. In need of some major advice [Re: John of arc]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
John
Quote:
I feel like the worst possible place cancer could have happened was my mouth.

Doesn't sound silly to me at all. We eat, drink, speak, kiss, or sob with our mouth. Anger such as you feel is normal. I used a different metaphor than yours of broken doll but recognize the pain.
During my time of lashing out with anger, this song by Pink was on the radio. It seemed to fit
Quote:
I don't know if I can yell any louder
How many time I've kicked you outta here?
Or said something insulting?
Da da da, da da

I can be so mean when I wanna be
I am capable of really anything
I can cut you into pieces
But my heart is broken
Da da da, da da

Please don't leave me
Please don't leave me
I always say how I don't need you
But it's always gonna come right back to this
Please, don't leave me

How did I become so obnoxious?
What is it with you that makes me act like this?
I've never been this nasty


All I can say is that this all passes. At the time, I had not found OCF so I thought it was just a private hell. Now I know it's tortures are quire common. The knowledge that others had suffered as much or more as me with the same or worse issues and yet somehow had broken thru to the other side really helped me the second time around.
Keep the Faith
Charm

_________________________
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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#148971 - 05/02/12 01:35 PM Re: Radiation worries. In need of some major advice [Re: Charm2017]
John of arc Offline
Senior Member (100+ posts)

Registered: 02/18/12
Posts: 117
Loc: New York
Well I'm almost half way thru my radiation and it has finally caught up to me. I'm exhausted and my saliva has thickened and my mouth is dryer. My tongue is so raw I can't really talk and I feel like I'm falling down the same black hole that surgery was. I feel like I'm moving 2 steps forward to take 3 back.
I'm trying to keep working but trying to teach without being able to talk is next to impossible and in so afraid I'll fall asleep by accident while watching the children that I'm stressing myself out.
I feel like an idiot. I don't know how I can keep working and be in this much pain and this exhausted. I'm worried that if I just accept the fact that I can't talk but everything else is working fine that my job might ask me to take a leave if absence. And I can't afford not to work. My family depends in me.
This is just so much worse than I expected.
I do have some questions that could really give me hope if answered.
How long after radiation did your mouth or tongue feel raw? Did it start to heal quickly or take a while? Anything the doctor can prescribe so Ill be in less pain that I don't know about? How did you guys manage? I'm waking up everyday and I'm in a panic. I feel like I'm reliving the first few days after my operation. I just wish my life was where it was 4 months ago
_________________________
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.

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#148973 - 05/02/12 06:36 PM Re: Radiation worries. In need of some major advice [Re: John of arc]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4762
Loc: Toronto canada
Hi there... I think its courageous of you to still be working but honestly you shouldn't be.

I get that your family depends on you but you are seriously ill and need to be at home focusing on healing. Aside from it being physically difficult, you are on chemo, which compromises your immune system. Working with children or in a crowded environment is just asking to end up in the hospital. Is there no way you can get temporary disability? I know I don't know your circumstances financially so I can't really comment, and definitely won't judge but maybe your family should be helping you rather than be depending on you at this time? Ultimately it's a big health issue for you to be working. If you're job was independent and at your leisure - where you could do it and schedule appointments around your health, then that's a different story since you probably wouldn't be as stressed or exposed to all those people (stress is also bad for you as you are already compromised by the radiation.) I never got to the point where I was unable to talk though it was uncomfortable for me to do so. I was also tired, and frankly from here on in it gets worse with the worst of it being the two weeks after radiation finishes. I was blessed in that I was never raw or had open sores though I did have blisters (un opened ) in my mouth - at least that was what my RO told me. It still hurt but not in a debilitating manner - even at my worst I only used pain meds for a week. But I was very fortunate... and apparently I'm not the usual.

The drs. can prescribe all manner of pain meds but I am not sure how they will effect you, so that might make working even less of a possibility. I finished my treatment in May (the 4th actually) last year and felt okay enough to go back to work the end of june-- but didn't until Sept as I had short term disability.

When I did use the pain medication it was a 5mg oxycodone, and all it did was make me sleepy. You really should be home resting...

hugs.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#148984 - 05/02/12 09:07 PM Re: Radiation worries. In need of some major advice [Re: Cheryld]
John of arc Offline
Senior Member (100+ posts)

Registered: 02/18/12
Posts: 117
Loc: New York
Saw my oncologist today and she prescribed me some pain killers and a mouth wash that numbs my tongue long enough so I can eat. In much better shape than I was this morning. Still unable to talk without being in excruciating pain so tomorrow should be interesting at work.
_________________________
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.

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#148985 - 05/02/12 09:17 PM Re: Radiation worries. In need of some major advice [Re: John of arc]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2553
Loc: TN
My goodness, John! - You really need to be at home. With your immune system down, you don't need to be taking chances with your health. When my son was at the point you are in his treatment, he was out of a job, but I just can't imagine how he could have been able to go to work. He had a bad time of it with radiation and blisters and not being able to talk. Is there no way your doctor could write a letter indicating you are completely disabled and expect to be for some time? I understand from reading others' posts here that you could apply online for SS disability and some have been very successful. I sure hope there can be a way for you to recover at home.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#148991 - 05/02/12 10:52 PM Re: Radiation worries. In need of some major advice [Re: Anne-Marie]
John of arc Offline
Senior Member (100+ posts)

Registered: 02/18/12
Posts: 117
Loc: New York
I just don't see how it is possible. My oncologist knows I'm still working and has made no indication that I shouldn't be working. If it gets worse i'll have to see what my options are. I do much better with working. I'm very attached to my kids. And if im home I know I'll wallow in what's going on.

Does anyone have any advice for how to apply for disability?
_________________________
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.

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#148995 - 05/02/12 11:58 PM Re: Radiation worries. In need of some major advice [Re: John of arc]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4762
Loc: Toronto canada
I think there's a section on the forum here that offers financial advice - I'm Canadian so I'm no help, my disability was through work, I received full pay for up to 55 days (the maximum amount of sick days I could use at one time) then they automatically switch us over to short term disability for 3 years.. I know you need a purpose but health wise it's not a good thing - all it takes is a cold and you could end up in the hospital with pneumonia.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#149001 - 05/03/12 01:40 AM Re: Radiation worries. In need of some major advice [Re: Cheryld]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 792
Loc: NY
Hi John....sorry I haven't been in touch lately! Listen, seriously, you are only halfway through, and I don't want to scare you, but the worst is yet to come. The last week of radiation starts to get pretty bad, then after you're done the next few weeks are the WORST. We didn't realize this and started panicking, then I joined the forums and found out what was happening was normal.
You can apply for disability online. Our cc helped me apply and sent it in for me along with all of Kevin's records. He was approved in a short while, but remember, it doesn't start until after the 5-6 month waiting period. They will go back to your last day of work as your waiting period date, I think, but not sure about that. I applied after our 6 weeks of chemo and in our first week of radiation.
Being with the kids and all their germs is pretty scary John.
I'm sorry to be the bearer of yuck news. Please don't shoot the delivery person!!
Thinking of you,
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

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#149006 - 05/03/12 02:30 AM Re: Radiation worries. In need of some major advice [Re: KP5]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8183
Loc: PA
You would want to check into what your employer offers. If you have been employed full time for at least one year with this employer you would qualify for FMLA for up to 12 weeks. It depends on your employer weather it would be paid or unpaid leave. Im surprised you havent yet discussed working with your doctor. Radiation tends to zap your strength and make you progressively more tired as you go on, plus your weakened immune system shouldnt be ignored. Working with chlidren while going thru treatments might be something you would want to rethink with the germ and disease risks.

How far into rads are you? Unfortunately it gets more and more difficult as time goes on when doing radiation treatments. The first 2 or 3 weeks after you finish will be the hardest ones.

You mentioned kids, are you a teacher? Im sorry there are so many newer members I sometimes have trouble keeping everyone straight. Please take a minute and update your profile so its easier to help you.

_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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