| Joined: Jan 2006 Posts: 101 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jan 2006 Posts: 101 | Today as I was doing some laundry I thought to myself...everyone always hopes for a normal life...I assume normal is easy, little crisis, happy, healthy etc. etc. but I now am begining to believe that normal is the crazy life we have...radiation side effects, back surgeries, teeth breakage, cancer reoccurrences, root canals that result in hospitalizations, vomiting from wrong meds being given, waiting for a little gas to pass, the taste of hospital food, the mountains of bills and all the rest. So I decided that from now on, I'm going to stop wishing for normal, because NORMAL SUCKS, give me an abnormal life any day. Those abnormal days are what keep me sane!
Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads. Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol- 3rd reoccurrence 5/18/12- partial glossectomy
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Hi Jennie. I get it. Actually I'm over it all. I just want my life back. And my husband. Guess I've hit a trough? Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | I understand your way of thinking. So sorry to read of all the struggles you have in your daily life. Wish I could say it gets easier but sometimes it doesnt. I guess we just adapt and adjust to a different way of life.
What a trip down memory lane when I think back to what my old life and normal used to be like. I never in my wildest dreams would have thought going in for a routine J/G tube change without being knocked out would be something normal I would do. Setting up my tube feeding every night is now routine as is taking meds and worrying constantly about my nutrition and hydration intake. Its amazing the new life that we get used to living. Even with our rough patches, it sure beats the alternative.
ChristineSCC 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 | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Jennie & Tamvonk
From this patient's perspective, let me say that I am in full agreement with you ladies. I feel guilty sometimes for stealing the "normal" life my wife and I were supposed to have. Of course, just like you heroines, she keeps a brave face up for me and never ever blames me. No sympathy here (since that implies pity) but plenty of empathy.
At first, I used to dream that all of this never happened. Probably because I'm old enough to remember Season 7 (1985)the original Dallas TV series, when Bobby Ewing "died" only to find out in Season 8 (1986) that Season 7 and Bobby's death had all been a dream. Oh, how many times have I wished that all this cancer was a bad dream and our lives were whole the way that we had planned.
Yes, let's hear it for the "abnormal" days . Our hope lies in the fact that psychologists' and psychiatrists' studies uniformly show an "emotional baseline "suggesting that most people inevitably return to a certain emotional baseline after circumstantial highs and lows. Tincture of Time Keep the Faith Charm
Last edited by Charm2017; 07-14-2012 05:11 PM. Reason: typos
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
| | | | Joined: Feb 2011 Posts: 117 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2011 Posts: 117 | Interesting thread, I agree with all of you. I know what you mean Jennie-you've had a rough few weeks for sure. Watching your Erik go thru another surgery and another recovery...it is tough for sure.
Tammy I think it is every bit as hard to be the caregiver angel as the patient.
Christine, you are right...somehow we manage to adapt to our new imperfect lives. Maybe because in the back of our minds we know we have come thru such a big battle that we need to just be happy with what we have... I know I for one am grateful.
Charm, you always know the right things to say.
DX 12/6/10 of T3 SCC Tongue. Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear. Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Eckhart Tolle said: ". . . what you resist persists". As I see it, resistance is non-productive and so we learn to accept, adapt and appreciate. When life throws us a curve, we can ask why? - and certainly have the right to be angry but more important is �Where do we go from here?� OCF helped me to see that, and I am grateful, too.
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.)
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Charm, you have said it perfectly for me. Many times I have said to Kris that perhaps this is a bad dream that we will wake up from. I even wish there was a parallel universe we could slip into where the nightmare just isn't happening. Back to reality. I know we will adapt and accept this new normal for us but hell I grieve for what we have lost. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | I think grieving for what we have lost is an important part of recovery. It is sad that our lives are forever changed. I miss the things that my husband and I used to do together. I have to constantly remind myself that it sure does beat the alternative. Clark and I have had to rearrange our perspectives and when you get to the core, it is what it is. So we go on and make the most of what we have and where we are. The simplest things have become more important...like watching the sun set, observing the fox in our backyard, enjoying a funny movie, and spending time with our grandchildren. And then I think, we are pretty darn lucky.
My best to you all- Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | Oh ya it's always different every day in my house. Never know is he in a good mood, sad mood, angry mood, happy mood when I get home from work. I talk to Ron at lunch time every day and than not til I get home unless he calls me for something while I'm at work which is very rare and scares the hell out of me when my phone rings and it says "HOME" my stomach always drops and I always ask "what's wrong" and he laughs at me. Not funny! But ya since 2007 our lives have never been normal...hell I don't think they were normal ever...so I live each day as it comes and live it to the fullest!
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
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