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#33479 06-30-2004 04:01 AM
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sweety Offline OP
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Hi everyone

I am feeling terrible, really low and so far I have been so positive. Now it feels like everything has hit me and I can't stop crying and feel ever so sad. I have a continuous headache, My throat is killing me, I can hardly swallow or talk, my hair is thinning and I am sick at least four times a day at the moment. And its only just begun. I am not always like this i have been very positive and getting on with my normal life, its just every now and then I think...when is this going to end?!!!! When am I going to be myself again? I am scared of talking to my loved one's because I don't want them to hurt more than they already are. My boyfriend is great and has been amazing but you know when he asks how are you feeling I generally act positive even though sometimes I am screaming inside.
Confusion and fear and panic is taking over my life. I am finding all of this very difficult today.

Sorry folks just needed to get this off my chest.

frown frown


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.
#33480 06-30-2004 04:32 AM
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Hello Sweety (again),

Everything you are experiencing is so familiar to me and most of us. It starts out as a giant roller coaster with surprises around every corner. Soon, the surprises end but the ride doesn't, unfortunately. There will be good days and there will be challenging days. I am almost nine months (nest week!) out from treatment and I, too, wonder if it will ever end. I think it just becomes more tolerable and the little things that pop up just appear as bumps in the road. I cringe when someone asks me how I am feeling because I do not feel like they really want to know...just asking to be kind. If I really stop and think about it and answer truthfully, it would be a long and exhausting conversation, for both of us!

I try not to dwell on things and just worry a bit before doctor visits and tests. That gives me a good break in between.

All in all, it is better today than it was many months ago. If you feel like you are crying for no reason, I would like to remind you that the treatment alone is very toxic and as tough as anything I can imagine. I never had any problems with the cancer, just the treatment. The doctor will gladly prescribe medication to help you relax, help you sleep and generally take the edge of off things. Good pain management will do a lot for the attitude and outlook, too.

I am sorry you are having a rough time (day). It will get better. Try to have a lot of patience because you won't notice it until you look back over extended periods of time.

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
#33481 06-30-2004 05:02 AM
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Hi Sweety, so sorry you are going thru all of this, it is a tough road but well worth it in the long run. I didn't have chemo, not sure you are, but the radiation kicked my butt. I have been where you are and can tell you it does get better. My doc prescribed Ambien to help me sleep and I had another med (can't think of the name) to take the edge off during the day. God Bless, you are in my thoughts and prayers. Love, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#33482 06-30-2004 05:09 AM
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sweety Offline OP
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Thankyou uptown and Carol for your kind posts. This is so hard but it makes me feel better to know others like yourself truly understand me. I think thats one of the hardest things, the isolation I feel. Everyone around me is fantastic but they have not experienced it first hand and so really do not understand me. I feel like I am a moaner or complaining if someone asks me how I feel and I answer truthfully. So I don't say very much anymore. Do you think I should put on a brave face for people or just tell it as it is. Truthfully I feel lonely enough with what i am dealing with already without scaring the people I love away. Maybe I am just being paranoid.

Cuddles to both of you,
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.
#33483 06-30-2004 05:30 AM
Joined: Feb 2004
Posts: 162
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Sweety, right now it's about getting through your treatment. Don't drive yourself crazy trying to put a brave face on what you're going through. Whether you complain or not, just making it to your treatments everytime is testament enough of your bravery. If you need to cry, then cry. It's not aways a good thing to hold all that stuff in. Let it out when you need to. Lean on your support team when you need to. It's all about you until you get through treatment and heal up. Until then, try to stop worrying and concentrate on getting through your treatment. It'll be over soon enough, ok? Hang in there!

-Brett


Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
#33484 06-30-2004 05:34 AM
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Sweety,

It is a really hard decision when we try to respond to our loved ones with how we feel. I know my husband responds to my moods and highs & lows - mental & physical. I always hate to tell him how I really feel. He has been such a strong caregiver that I don't want to worry him more that he worries on his own. I understand how you feel.

Other people, I have learned each person. Who really wants to know? And who is just asking because it's the right thing to do. Very few people hear how I really feel at any one point and time. Some really close people on this board, who are kind enough to listen to me vent once and awhile.

Now - see I am rambling. Sorry for that, but you are not feeling any different than many on us have. Vent here anytime I hope it helps.

Dinah

#33485 06-30-2004 05:55 AM
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Hi Sweety
I picked one person who I really trust and who is not part of my immediate family.. so I can say just how I feel without worrying that what I say will upset them.. then it's easier to scream inside, just as long as one other person knows you are screaming it's easier to deal with..
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
#33486 06-30-2004 08:27 AM
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Hi Sweety, I just read your post and you are NOT being paranoid! Oh my gosh, just being told you have c is enough to turn a person inside out. I tell you, I have a strong faith in Our Lord, but there were many, many days I would just cry to my husband and I know I asked him at least several times a day if I was going to be alright and was he keeping anything from me. You have been thru this twice now, you are much stronger than you think, wish I could give you a big HUG!!!! Love, Carol xoxoxoxo


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#33487 06-30-2004 08:33 AM
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Hi Sweetly-

It's a rough journey for sure on the survival road. The doctor put me on Zoloft to get me through the depression of dealing with the diagnosis and treatment. Looking back I know I really needed the help to get through that scared tear stage. Check it out and know that it does get better!! - 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 :-)
#33488 06-30-2004 02:00 PM
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Hello Sweety, by seeing the 3 sad faces you placed in your post, I can feel how desperate and helpless you are now. Your message takes me back to where I was about 3 years ago. What others said here are right in that we can't expect care givers to understand exactly what we go through but it doesn't mean that we need to fight the battle all alone. You are definitely not alone, I am sure. We have so much to deal with when being targeted by this big enemy. Our main focus is to beat it down and so we need to do everything to win. The pain and suffering will get worse but then gradully gets better, as most of us here experienced. Be true to yourself and the ones you love. No hiding of feelings is necessary. Ventilation is a part of cure. Don't feel guilty when you need to cry or scream. Remember there are many in the world caring about you, wishing you a full recovery soon. People in this forum form a wonderful and supportive group and will always be by your side. So kick all worries away.

Karen.


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
#33489 06-30-2004 09:45 PM
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Sweety,

I know exactly what you mean about sharing with your loved ones and care givers. I would usually be very upbeat and then all of the sudden this overwhelming sense of panic took over. I chose at that point to tell my husband that I was having a really rough time and thought I needed something to help me over the hump and went on Xanax for panic episodes and Ambien for night time relief when I couldn't get my mind to stop racing. He was totally supportive and actually felt like he was truly part of my care. He admitted to me even though he lives with me and sees me struggle everyday there is no way he could even begin to understand what or how I am dealing with everything.

I know you must be physically exhausted from dealing with this disease twice to say nothing of the emotional stress that compounds and complicates things. I agree with Ed, sometimes getting on top of your pain will go a long way in helping your physical and emotional well being. Being in constant pain really wears you down.

Here's a thought. When you're having a really horrible day, write down most of what's bothering you in a bullet point style and when someone you feel close enough to see something other than the brave face asks how you are, hand them the paper. That way they will realize how many issues you are dealing with and you won't feel as if you're whining and complaining (although you have every right to)

I hope that your symptoms subside very soon. Tell us where you are in treatment and what type of treatment you are receiving.

God Bless
Lynn


Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
#33490 07-14-2004 05:15 PM
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i have those same feelings but you have to stay positive and fight put your faith in god radiation therapy is a bitch when i had it last year there were days i swear i was going to die i felt dead inside it was horrible but i have to tell you it will get better once its over but i will tell you it is hard a person once told me if god brings you to it he will bring you threw it take care hang in there we are all pulling for you


30yr WM ,2003 dx oral squamous cell ca of tongue had lesion removed on lt side of tongue and 9 nodes 1 node pos. had 36 treat. rad therapy 2004 had lesion growing on lt base of tongue had partial glossectomy with skin flap taken from left arm
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