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#123197 10-16-2010 10:43 PM
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I used to love going out to try new restaurants and bars.

I used to love meeting up with my girlfriends everyweek for catchup and casual chit chat.

I used to get down and play with my two year old - now i just sit and watch her play.

I used to love cooking and trying out new recipes.

I used to love being out and about on beautiful days and enjoy the sun's rays.

Will i ever i ever do these things again and enjoy these little pleasures in life? On a day like today, all those thingsi love doing seems like another lifetime ago. And i know i should be grateful i havent got it as bad as some, but today it so hard to be grateful for anything.

Minh


35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
minniemoo066 #123205 10-17-2010 07:04 AM
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I hope you can find something that makes you happy. I dont mean to pry but are you taking antidepressants? If not it may be something to look into. We all have those days where we feel down. If you have more down days than good days than it should be discussed with a doctor.

Not one of us oral cancer patients had it easy. Even the ones who seemed to sail right thru treatment struggled in some way. Im one of those people who think that positive thinking helps make things easier to get thru. Even people who have had a really bad time of it are lucky, they made it thru and are still around to talk about it. Its all how you look at things.

Im sorry if I interpreted your post differntly than what you intended. We are here to listen and its ok to vent. We all have to have an outlet to let off steam.

Hope today gets a little better for you.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
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 xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #123208 10-17-2010 08:41 AM
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It took me 18 months before I could eat anywhere near normal. Many were able to eat much sooner than that. Now I'm back to enjoying going out to restraunts again. I'm also back to enjoying hikes up to my favorite swimming hole on the creek, lounging by the pool at my Mom's place, playing with my very active dog and otherwise enjoying life. There are days when I have to force myself to go out and do something and other days when I just say the heck with it, I'm going to sleep all day, but in general I've settled in to the "new normal" pretty well. You are still young and I'm sure you have plenty to look forward to in time.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
Deejer47 #123212 10-17-2010 09:58 AM
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Minh:
I read your post and thought "I can relate to many things in your post." I agree with Christine whole-heartedly, it's much about perspective. I am constantly telling myself I'm a glass half full kind of guy but there are those days.... If you constantly feel that way seek out additional assistance! The thing about cooking you mention, I used to have a passion for it! I cooked all the meals, cooked for co-workers, smoked meats and gave away at holidays, and now, don"t really enjoy eating so don't do much cooking. Wife has commented on it several times. A few weeks ago I felt just a little inspired and ended up cooking ALL DAY!!! When you have a thought just smile and pursue it, FOR YOU! You may be amazed at how much better you'll feel. The way I feel today I could sit right here on the couch all day but the suns out and I'm headed outside to smile back at it! smile One last thing, I'm sure you notice the folks commenting have been recovering for a while, it will take time so be patient.
Best Regards,
Steve


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

Steve F. #123214 10-17-2010 11:52 AM
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Dear Minh - I can so relate to what you are feeling, and it reminds me of my son's experience in the early days after treatment ended. From your signature info, it seems you are not that far past the end of your treatment so I'm sure you will start to see progress and feel better soon about how things are going. The worst for my son were the or three months right after the end of his Tx. My son's doctor prescribe anti-depressants for him and it seemed to help so, as Christine mentioned, it may help to talk to your doctor about it. Different things work for different people. Being outside in the sunshine helps, deep breathing (10 deep breaths), calling a friend, getting a hug from someone close, seeing a funny movie, reading, exercise helps, even if it's just bending over once or twice to touch your toes. Sometimes when I was feeling down, I would just go into the bathroom, bend way over for several minutes and brush my hair 100 strokes. I thought that maybe it would help oxygen to get to my brain so I could think more clearly. Other times, when the depressing thoughts just seemed to have taken residence up in my brain and would not go away, I would give myself a time limit for entertaining the dark thoughts - say, three minutes. It's ok to feel compassion for yourself during these times. You have good reason with what you've been through. It's not the same as feeling sorry for yourself. At the end of three minutes I would force myself to switch the thoughts to'/ something funny that had happened to me or to someone I knew, concentrate on Sudoku puzzles, scrabble, etc. and then do something physical like vacuming and I hate vacuming but it helped me to start thinking of something else. Do you have someone close by like a friend or family member that can be with you for support or to just help you to get some good thoughts going? I'll be thinking of you and hoping each day gets better, so keep in touch and let us know what happens.


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.)



Anne-Marie #123220 10-17-2010 06:13 PM
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Minh

Oral cancer can take months to recover from the damage it causes, and for many the permanent damage is life changing. It has been for me. I would suggest you speak to your GP for some assistance, which might include a referral to a therapist.

With such lovely weather in WA, taking a walk or sitting outside with a magazine would be a simple way to lift your spirits. It's a good place to start to physically and emotionally build yourself up.

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
Karen Rose #123230 10-17-2010 11:52 PM
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Thanx everyone for your support. I'm not on antidepressents yet, i think i can make it through but if things get worse i will definitely look into it. I have booked to to see a counsellor for next week so hopefully i can hang in there till then and she may help ( the counsellor had oral cancer herself 5 yrs ago!!)

Guess i was just feeling sorry for myself. I managed to make it throught treatment fine and then all a sudden everything just hit me about two weeks after treatment finished. Sometimes its so hard to see that light at the end of the tunnel. I have never been one to feel down or moped around so feeling like this makes me feel even less myself. I just want to feel the old me again but i guess from everyone's posts that its not going to happen. I have to find this new me and be happy with her. I have always been a happy and smiley person (still am most of the time) so i'm finding all these negative feelings really hard. If people ask how are you? its alwasys "really good" because I am but now i feel like i'm lying even when i reply "im ok".

Minh

Last edited by minniemoo066; 10-18-2010 05:49 AM.

35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
minniemoo066 #123233 10-18-2010 03:04 AM
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Posts: 2,671
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Minh - it's good to hear that you are taking steps to being good to yourself. The counselor you have an appointment with sounds like the perfect person to be talking to! When people ask how you are and you reply "Ok" I have to tell you that when my son would tell me he was "ok" I would always say "just ok?" and we would talk about why it was not closer to "terrific" and what to do about that feeling. You cannot go from being really down to something "really good". It takes very small steps to bring yourself up. Being finished with treatment and the normal routine of daily trips to the doctor is quite a change, even for caregivers. You tend to get the feeling of "what now?" and it's hard to see that light at the end of the tunnel. Any change in life, whether it's a good change or a not so good change is stressful, but it's temporary and the good feelings do come back again. Soon you will have more energy for your two-year-old. For now, I'm sure she just enjoys having you close by while she plays and knows her Mom is getting better. And now is the time for someone else to cook for you. You might mention that when they say, "how can I help?" They may not be as good as you at cooking but whatever they bring you will give you a warm feeling to know they made the effort.


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.)



Anne-Marie #123235 10-18-2010 05:58 AM
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Posts: 179
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Thanx Anne Marie. I have decided to take the strategy of one day a time and 1 hour a time. It seems to work for me today. Just one day a tinme and i will worry about tomorrow when it comes. I'm looking forward to seeing the counsellor next week, even though i wasnt so sure i needed her when i made the booking! Funny how your feelings can change in such a short period of time.

I have also found a head and neck support group in Perth which meet up once a month. I'm going to the next meeting and see how i feel.

Minh


35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
minniemoo066 #123244 10-18-2010 11:18 AM
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Posts: 3,082
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Minh

[quote]Aussie Aussie Aussie! Oi Oi Oi![/quote]
I thought of you when reading about a raucous crowd of flag & ballon carrying Australians packing St. Peter's Square in Rome and making it echo with the above "traditional sports cheer" to celebrate the canonization of Australia's first Catholic Saint, Mary MacKillop. In Sdyney, images of her, a 19th century nun, were projected onto the sandstone pylons of the Harbor Bridge.

Everyone at OCF is cheering you on also.
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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