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#33491 07-01-2004 08:08 AM
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Its happened, the bubble of numbness and feeling like I can cope has burst. The reality has hit me hard.

Oh my what is happening to me. I just completely flipped out at the one person in my life who I love the most. I am so angry with what is happening to me. So mad. I shouted and cried at him. I couldn't help it. I cannot believe the amount of anger and pain I am feeling I just want to scream. I want this out of my body, I hate it, I hate what its doing to me. Everyone is telling me you are so brave and your doing so well and you are coping brilliantly. I have never felt so utterly despairing and so completely hopeless.


Stage 1vb Metastatic Cervical Cancer.
Metastatic squamous neck cancer.
Currently having RT,Chemo. Tumor removed 07/04 Immune therapy.

WHERE THERE'S LIFE THERE'S HOPE.
#33492 07-01-2004 08:37 AM
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Oh Sweety, your post really moved me. I know how you feel but that isn't helping YOU now. Have you seen your doctor re: antidepressants? They made a big change in my life. Don't worry about what other people think......Give your doc a call now before the weekend hits, ok?
Love and God bless
Judy U


Judy U
Stage I SCC floor of mouth, left radical neck dissection 8/03
#33493 07-01-2004 10:32 AM
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Sweety,
what you are describing sounds like the typical stages of grief. You are greiving your old life and where you were at before cancer. Confusion, bargaining, depression, anger, and finally acceptance are the five stages. They don't always go in order and sometimes some of them will occur simultaneously. I flipped out more than once and had major amends to make to my wonderful wife who stayed with me through all of this (she told me later she did speak with a divorce attorney though). This is why a support group is great for caregivers as well. They tend to internalize our criticisms. All they want to do is be helpful and when we jump on their case it really hurts them. I constantly had to let my wife know that I was angry about the disease and not her. You ARE entitled to your feelings.

I know well about everybody telling us how brave we are - what other choice do we have? Death - and that's about it. Cancer really kicked my ass and they're telling me how BRAVE I am?!?! I crawled through the battlefield on my hands and knees most of the time. It's not like I was out there with my hand grenades and bayonets flashing. This was hardly some Rambo thing. But what else can they say really? They are pretty clueless just how miserable we are. I used to take my drivers into the treatment room so they could watch me get bolted to the table. I would also give them the nickle tour of radiation oncology. It was enlightening for them. There were many sicker than me also which helped to keep it on perspective. In AA they say "I felt bad because I had no shoes, then I met a man that had no feet".

I used to wear a Navy Seals t-shirt to treatment a lot with the saying "That which does not kill you only makes you stronger". There WERE days that I truly thought the treatment was going to kill me.

BUT -I am stronger today - that saying is really true. I pray it will be true for you also.

Just take it one day at a time and sometimes one breath at a time - keep focused on the "cancer free" outcome from this.

A little "better living through chemistry" doesn't hurt either. I took Ativan, Zanax, Prozac, Paxil, Duragesic (Fentanyl), Morphine for managing pain, depression and anxiety.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#33494 07-01-2004 11:09 AM
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Bless your heart, we have all been right where you are at. I wish it was that easy to just yell it away, cry it away, scream it away, doesn't work we have all tried...All those you are doing so great handling this, makes you want to scream---again---what else can they say,, they have no idea what to do, what to say, how to act, neither would we if the table was turned...You are loved, we all care,,lean on us for as long as u need too, we are here,,,as long as we can be..always, vicki lynn

#33495 07-01-2004 12:35 PM
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Sweeety, I can really feel what you're going through with your last two posts. I managed to get just about everyone I loved or knew mad at me by the end of the deal, even a few months afterward. I was angry, depressed, confused, and just plain worn out. To me everyone around me didn't understand, thought that now that the treatment was over I should be ok both physically and mentally, things were normal. Luckily, my wife and my mother understood, put up with me. My co-workers and boss didn't have a clue and I almost managed to get my self fired.

Not to make light of how you feel, but my solution to make some others understand went like this. There's a well known older expat in our community who look like hell, I mean like he should have gone to the great beyond a few years ago but someone forgot to tell him. I finally got through to my boss when he asked me how I felt and I replied "like _____ looks" His reply "that bad eh?"

Like others suggested, see if the doc can give you some antidepressents, maybe see if you can find a cancer support group locally.

And know that you are in our thoughs, any time you need to vent or need a cyber hug, we're here for you.
Bob


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
#33496 07-01-2004 02:09 PM
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Hey Sweety,
I can only let you know that I am keeping you in my prayers. I have no secrets or help to add except that crying out to God everyday was what got me thru so far...and I am just the caregiver! Sometimes the fear just overwhelms me and then I try and focus on each moment or each day...definitely not the future. I also have been taking Xanax when needed to deal with it all.

Take care,
Debbie


Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
#33497 07-01-2004 02:15 PM
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Sweety, my heart aches for you. I hope and pray for you.

Gary, thank you for your post. By responding to one person involved in this...stuff...you help us all. I think I need to print this one out and hang it next to my desk.

Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
#33498 07-01-2004 05:40 PM
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Dear Sweety

My heart goes out to you. You have had to contend with so much, give yourself permission to be angry and get it out of your system. I agree with others that your doctor will be able to help with anti-depressants. Has helped me.

Another temporary method is to go into your bedroom, close the door, pick up a pillow and bang it as hard as you can, as many times as you need, on the bed. Gets some of it out without upsetting anyone else.

I'm with you, love from Helen


RHTonsil SCC Stage IV tx completed May 03
#33499 07-01-2004 05:56 PM
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Sweety,

Unfortunately cancer affects you and your entire circle of family and friends. I know that all relationships get strained and after the smoke cleared, I was amazed my wife and kids still talked to me. All three show signs of post traumatic stress syndrome. I remember when my mother was terminal with ovarian cancer she used to lash out at me and my wife. I could take it when she attacked me since I knew it was disease and treatment talking, not her. It crushed me when she attacked my wife, though.

You have every right to be angry. Your whole life has been turned upside down...AGAIN! Hang in there, we are all here for you any time you need us.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#33500 07-01-2004 10:08 PM
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You guys are the BEST! I do not know what I would do if I hadn't found this forum. I have just cried reading your posts. Your warm words of encouragement have made me very tearful because there is so much positivity and hope coming from you all.

Last night was an awful night. I have not slept, I cannot seem to stop the thoughts going around in my head. I cannot get comfortable. This morning I look awful, I looked in the mirror and saw a stranger looking back at me. The stress and pressure this causes me is the worst ever. I tell you if I can get through this, I can get through anything that life throws at at me. The numbness has returned again. Its awful but I quite like this numbness I feel because it feels almost safe and I don't have to think.

I am seeing a counsellor today and am going to start taking the 'happy pills' aka prozac or something similar. I will let you know how I am doing this evening.

Thankyou so much for spending time writing me to help me, I truly appreciate and listen to every word being spoken.

With warmest wishes and masses of ((((HUGS))))) to you all,
Sweety.


Stage 1vb Metastatic Cervical Cancer.
Metastatic squamous neck cancer.
Currently having RT,Chemo. Tumor removed 07/04 Immune therapy.

WHERE THERE'S LIFE THERE'S HOPE.
#33501 07-02-2004 05:06 AM
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Hi Sweety,

It may take a short time before the anti-depressant meds take effect. They need to get the dosage right and you should start feeling a little better.

Gary said it better than anyone could. Please know we are here to offer support, share our experiences and we will bitch and complain also.

Have a Great Holiday Sweety,

Dan


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#33502 07-02-2004 05:41 AM
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Sweety,

I remember at one point during treatment I was walking to use the bathroom and peered over towards the mirror. I was shocked that I didn't even recognize myself. From then on I used to hurry past the mirror and my wife kept asking why I was in such a hurry. She even started calling me Jar Jar Binks. My hair looked like a baby bird, thin and stringy looking. I had lost about 40 lbs then, soon to be 70. I couldn't eat, couldn't drink water without choking, couldn't move the bowels from the narcotics, was mean to everyone.

You are right, when you make it through the treatment...you can make it through just about anything in life.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#33503 07-02-2004 06:49 AM
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I was in the exact same place as Ed! I lost over 60 lbs - got down to 109 which I haven't weighed since grammar school. It was creepy looking in the mirror - I was a dead ringer for a nazi death camp survivor.

I've put about 35 back on. My wife likes the new svelte look!

By the way, I always looked forward to the weekends when there was a break from radiation. Have a great 4th.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#33504 07-02-2004 09:41 AM
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Sweety,
I'm sorry to hear you are feeling so down. Know the feeling as my wife earned Sainthood for sticking with me through all this, and we aren't even Catholic. I can't imagine having this horror occur twice, but I can offer something that helped me get through mine. When I was feeling the worst, most scared, most hurting, I just prayed to God to be with me, take the trouble away, and I turned it over to Him. That gave me the consolation I needed to make it past that moment and into the next, and next, and so on. Hang in there. We are all in your corner and available to be a crying towel when needed.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#33505 07-02-2004 11:50 AM
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Hi Sweety,

I hope you're feeling a bit better today. I know how you're feeling - that feeling of hopelessness. I'm almost a year out from Dx and on bad days I still feel hopelessly angry, sad, depressed, frustrated, scared - you name it, I've felt it. I wish, at times, that I had had someone to lash out to if only to make me feel better at the moment. Nine days after my diagnosis my husband of almost 23 years passed away suddenly and I was left a widow at the age of 45 and dealing with cancer. I was so mad at him for leaving me when I needed him most especially since I was there the many, many times he was hospitalized during our 23 years and now he wasn't there for me. BUT, I do have really good days too when I feel a little less scared, angry, sad, etc. I only wish I had found this forum from the beginning of this painful journey so I'm glad you were able to find us. This is a caring group with a lot of first-hand knowledge of what we all are going through. I hope the doctor was able to give you something to help "cheer" you up (so to speak). I've been taking risperdal and it helps to keep me from falling apart.

Hang in there - there are good times ahead - just be patient with yourself and try to be patient with those around you. Not easy - but doable. And if you need to scream and cry, do it - it usually makes me feel a little better and helps to release the stress and tension.

Prayers coming your way, Nancy


Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
#33506 07-03-2004 06:18 AM
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Well Nancy
Like you I want to lash out... I want to shout this is not fair, this only happens to other people not ME.. I have Lupus as well and depression is a feature of that during a flare.. and stress causes a flare.. and cancer causes stress.. so I take prozac and hope that will be enough..My husband is blind and I find myself wishing it was different.. I want to be cared for...not the care giver.. Life is not like that is it?... like you I wish I had found this site earlier.. this is my family of care givers.. no questions asked just 100% backing when I need it.. So to you all THANK YOU
Sunshine... love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#33507 07-03-2004 10:28 AM
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Yeah,
The first time I talked with my oncologist, he asked me if I was a strong person, because only a strong person person could go through what I was going to have to endure. I told him i didn't know, I had never lived through anything worse than childbirth. But what I felt like saying was - So, do I have a choice???
It is so unfair, is it a wonder we go berserk? I am a healthy person, I always climb the stairs instead of the elevator and I eat bran flakes and vegetables and people in my family live to be ninety or more and climb mountains at eighty. So at fifty I am not supposed to be crawling around the house too tired to take the dog for a walk, or to pick up the tissues I drop wherever I go. Or to have the fiftieth birthday party my children had planned. Or to taste the cake, if they had baked one.
But we don't have a choice. We just have to hope that the people who love us do understand. Actually my husband said, sometimes he is almost relieved when I do get angry, it is better than the quiet depression I went through in the past couple of weeks.
Thanks, Gary, for the good words.
Leena


scc right tonsil T1N1M0, right tonsillectomy + modified neck dissection 3/04, radiation IMRT both sides X33 ended 6/04.
Also had renal cell carcinoma, left kidney removed 11/04
#33508 07-07-2004 12:34 PM
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Sweety,

I disappeared from the message board early last month and only returned on recently. I went into a funk, which you described to a T in your last two posts. You feel like you have to be "strong" because everyone around you is saying "your spirits are so high", "I couldn't do what you're doing, you're amazing", "you're the strongest person I know" yadda, yadda, yadda. I was ready to strangle the next person that said it to me.

Everyone has their weak moments going through this, and when it hit, I felt like I was letting everyone around me down. I didn't feel like the strong, high spirited, funny one anymore so I hid. Just remembering these feelings is brining me to tears now. At least you were able to reach out here. These are wonderful people that will take care of you in the good times and bad.

What I'm trying to say is it's okay to be down. It's okay to visualize belting the next person that says "stay strong" or "keep your eye on the prize".

I chose a non-related third party to vent my frustrations. Though i don't know if it will help, I posted my email to him below. Maybe it'll make you feel better knowing you're not the only person feeling this way, but please skip it if it doesn't help!!
********start of email***********
Yes, the last of the bad treatments are over. I can

#33509 07-07-2004 05:46 PM
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Hi Sabrina
Thanks so much for sharing that with us. I can relate to the feelings of desponancy.. but you are much more articulate than me.. just glad to know you are emerging from the darkness, stay in the light..
Sunshine.. love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#33510 07-07-2004 06:25 PM
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Sweety & Sabrina,

I watched my beautiful mother who was always always smiling and was always complemented on how good she looked for her age (56) turn into an unhappy much older looking very thin and frail very saggy skinned person practically overnight. She too suffered what you both went through and I know as somebody who hasn't been where you are that it truly sucked worse for her than anything she'd ever experienced before or expected.

She is finally starting to smile more and slowly turning into the person she once was. She is 4 months post radiation and chemo and everyday she feels just a little bit more like her old self. I kept saying I just wish we could fast forward through the bad stuff and now the bad stuff is over.

Sabrina we've missed you. I was getting worried about you and I am so happy to see that you are back. Sometimes even the toughest people need to let down their guard and I'm glad to see that you are doing well.

Love,
Dani


Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
#33511 07-08-2004 03:18 AM
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Sabrina,

Thank you for being human and especially thank you for being YOU!!

As I read your email, I sobbed and remembered how it REALLY was. The side you didn't tell many people because you didn't want them to worry. The side I hid from most people outside of the home but those inside had to see. The side that made me feel like I had let my wife and sons down. Yes, just as you say, it sucked and it was godawful! mad

It's a part of my life that I wish I could have fast forwarded at the time but it seems to rewind to that spot at the oddest moments. I thank God often for where I am today. wink

Thank you for sharing the truth, the whole truth and nothing but the truth, so help you God!

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#33512 07-08-2004 04:12 AM
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Sweety and Sabrina-
Your posts brought tears to my eyes too. It is a very hard journey that only those going through it can really relate to. You get through it because you only have two choices -- you survive or you die. BUT, you don't go through it alone!! And although it is tough, you can survive! There is a light at the end of the tunnel. Do what you have to do to survive the journey, shout, cry take whatever drug numbs the pain mentally and physically, because you will heal and become whole again after a few months! My prayers are with both of you! - Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
#33513 07-08-2004 06:18 PM
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Indeed Sabrina, That was one of the more concise summations of the last weeks of treatment I have read. Yes being in a "funk" is absolutely acceptable, I can tell by your expression you look better than you think! I do know it does get better. That goes for you too Sweety, the bottom line is: it is a test but you will get better.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#33514 07-08-2004 07:05 PM
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Sweety, Sabrina, yep, I think maybe we tend to grieve for what we lost. Even though we may have survived the cancer and the battle, things never will be the same. Yep, I pretty much look ok now, some say even better now than before the cancer, but I still miss not feeling like there's impending doom, and miss just plain feeling GOOD!

I wonder if I"ll ever get used to the fact I can't move my arms like I used to, that my tongue is gonna pretty much always feel strange. And I wonder if this tightness I feel around my neck is EVER going to go away.

But, I also learned to cherish the time I have, to live life and grab onto it, not be content to let it pass me by.

In the spiritual, cosmic scheme of things, I wonder if I didn't get this for a reason. My pastor says it's because I didn't pray hard enough and it's satan's work, (oooooohhhhkkkkaaaayyy) and I took it as a message to quit being a bum and DO SOMETHING!!! Especially since it seems at this point the cancer is in remission and I'm about as healthy as I'm going to get at this stage.

I go in next week for another follow up PET/CT, this one is the one year from end of treatment for second go around (HUH?) and I'm having the usual pre-scan jitters. So I guess I'm getting a little philosophical this afternoon. But the next day I sign papers incorporating my own business, ever the optimist.

I guess I feel sometimes I'm the little ball in a game of cosmic pinball, and one of the flippers is broken.

Sorry for sort of hijacking the thread, but just sort of "spilled out"


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
#33515 07-09-2004 12:29 AM
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Hi Bob,
you should remind your pastor about Job -he prayed plenty and was a man of great integrity in his faith. He was still allowed to suffer. At least his story had a happy outcome. Pastors that say stuff like that drive me nuts (besides he sounds like one of Job's so called "friends". I, unfortunately, have met more than one pastor that was a lousy counselor. I really believe that some pastors shouldn't even talk to people one on one unless that have either professional training or a spiritual gift of counseling. Oh well - none of us are perfect.

I do believe, however, that disease is from Satan as well as the fear, helplessness and hopelessness. His favorite and oldest trick is to attack our minds and what better way to do that then with a life threatening illness. I heard a term today that was a wake up call "she was stricken with cancer". I never really thought of being "stricken" before.

I don't think that the reason is as important as what we do with it. We are given the opportunity as Christians to demonstrate our faith and the "fruits of the spirit" working in us under tremendous duress and many are watching (and listening).

My prayer group was encouraged by my outcome since so many they prayed for didn't survive. I am highly visible in my church being a bass player on the Wednesday worship team and Sunday programming team.

Another thing that churches often forget is that a major part of Jesus ministry on earth was healing the sick. That seems to be largely ignored in modern times.

This evening I have an earache and a sore throat (on the side opposite the cancer) so you can imagine where my "magic, magnifying mind" wants to go with it.

Thanks for sharing - it's sums up pretty well the space I'm in these days.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#33516 07-09-2004 03:22 AM
Joined: Mar 2003
Posts: 1,384
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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Mar 2003
Posts: 1,384
Likes: 1
I have some thoughts on the subject in this thread drift (highjack) why don't you repost a new thread?


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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