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#126606 12-21-2010 03:54 PM
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Alpaca Offline OP
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Hi everyone. Hope you all have a good Christmas up there in the snowy northern hemisphere - most of you.

I've hit a psychological speed bump on my road to recovery. I have so much to be thankful for and had a good check up two weeks ago to mark the end of my first post-op year. But my surgeon reminded me that 80% of these cancers return in the first two years if they are going to return. I've just accepted a year long part-time job starting in February; a triumph for me to get such teaching work with a slight speech defect. I'm worried that the cancer will come back before the end of next year and make taking on such a job irresponsible.

Because our family was very busy when I went to see the surgeon, I did not make my usual list of questions but got out of there as fast as I could. But the 80% in the first two years must have pinged a nerve somewhere because it has made me apprehensive. Nobody asked me what the doctor had said; I'd told them it was all fine and we all went on with our family reunion. Moreover, because I am so well with minimal side effects, nobody allows for a certain fragility in me any more. They get angry with me and expect a lot from me just as they would from the matriarch of any family, I guess. Having no daughters or sister might be part of it. I have three lovely sons and a brother and a husband who is getting very old and forgetful. Close friends don't want to entertain the thought of the cancer coming back so as with my previous cancers, I feel as if I'm carrying this alone. I feel that I have reserves of courage I can draw on - no worries there - but, heck, I just wish people understood what it's like to be a cancer patient in limbo.

All respect to those of you in treatment who are not as lucky as me right now to have my life back. Just thought there might be someone out there who could put their finger on what ails me!!!


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #126607 12-21-2010 04:24 PM
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Alpaca,

You can't live your life waiting to die, you have to LIVE! So many kudos to you for getting a job, you're going to be fine and I'll bet no one will even notice your slight speech defect (unless of course you're teaching elocution or something!).

The limbo is hard though, I agree. People tell me I'm 'fine' too but there is always that little niggle of doubt in the back of my mind, always. I do think being a cancer survivor is a very lonely place sometimes and that's why having a forum like this one is so very important.

- Margaret


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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I think I understand exactly how you feel Alpaca. I feel like I'm just waiting for the inevitable. But anytime I say anything about having cancer around my family they cut me off completely and say, "You HAD cancer...you don't have it any more." So I'm basically not allowed to mention how scared I am that it will be back shortly. I have yet to have a clear PET scan. There is always "activity" because they keep doing stuff to me so they blame it on that. So I don't even know if it is officially gone at this moment. I look like I'm normal except for scars so they think I'm "cured". I don't feel that way. I had all my Christmas shopping done by July "just in case". Now they're all jealous of me because they still have shopping to do. And they act like I should be happy to be skinny. I just want to be back the way I was.


BOT-SCC Partial glossectomy 7/16/09.
Stage IV, Rt ND 10/2/09.
Teeth out 11/5/09.
Port/peg in, 11/20/09.
7 wks rad & chemo, end 1/22/10
lung, colon biopsies 1/9/11 - both cancer
colon resect surg 1/10/11
Folfox + Avastin - discontinued 6/11
lung surgery 3/13/12, 5/1/12
mets to liver and bones
passed away 9/4/13
Bloop19 #126619 12-21-2010 07:37 PM
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Alpaca Offline OP
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Thank you people. That story about the Christmas shopping resonates with me Bloop19 - sorry I don't know your name. At least we can understand each other.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Bloop19 #126620 12-21-2010 07:39 PM
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Posts: 493
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I know. Everybody says, "oh, you're fine." I'm actually a pretty positive person, but I also have to be realistic. My scans have all been clear and I know that the doctors are really keeping an eye on things, but as you said, it's always in the back of my mind.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
Bloop19 #126622 12-21-2010 08:00 PM
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Alpaca,

Congratulations on accepting your year-long teaching assignment! That is a clear sign that you are embracing life. You were offered your new job based on your qualifications and experience. Like most jobs, it is assumed that you will complete your assignment for the duration. While none of us can predict the future, we cannot offer guarantees on it either. Don't let the "what ifs" immobilize you.

It is lonely when you can't safely express your feelings to your loved ones. But many times they are not the best people to share with your fears about cancer. They are ill-equipped to handle such a weighty subject. Have you considered seeing a therapist or social worker? As a caregiver, I had my own fears about cancer and I could not say anything to my husband. He was leaning on me and I needed someone on which to lean on. It really helped me.

You have been through a lot and have come a long way. I wish you the best, keep posting and let us know how you are doing.

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
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Alpaca,
I am right there with ya! I try to be as positive as possible, but there are still lingering thoughts. Yes, my surgery was a year ago, and yes I survived 3 cancers in one year and the only way to tell are a few scars and slurred speech...but unless you have gone through it, you really dont know. I have worked all my life to build myself up to what I was before my surgery and in a matter of 15 hrs...I felt it was all stripped away from me. Dont get me wrong, Im very grateful to be here today, but it is hard and all the while, you have this nagging thought in the back of your mind that says "you know what statistics say". Most days I feel like I am on a tight rope...on one side is positive and the other is negative and I have wavering thoughts all day coming at me from both sides...but I continue to push the negative thoughts aside. That is all we can do. I think someone else had posted that we just have to keep pushing ahead and continuing to fight. I wish you the best of luck and just remember that in your mind you have to control the "cancer" (whether active or not) and not let it control you.
Stacy


11/2/09 DX Stage II Tongue Cancer~12/15/09 15hr surg,Rad neck diss with reconstruct from l/forearm,lymphnodes rem and cancer had progressed to Stage IV, biopsy of thyroid showed cancer on l/r sides which removed 06/10~~1st melanoma removed 05/07 and second removed 05/10~~35/rad and 7/chemo
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Alpaca,

First of all...your Dr's a dick and you should kick him in the sack the next time you see him. Seriously. This is a prime example of why Dr's shouldn't be allowed to speak to patients...well at least the stupid ones, which unfortunately is a large population of Dr's.

If we learn nothing from these forums is that we are ALL unique biological entities and statistics mean nothing to an individual. I remember when I was "first" diagnosed, the businessman/poker player in me pestered EVERYONE and their mother for "my odds" of beating this disease. Thankfully none of my medical professionals were frickin stupid enough to give them to me. My RO gave me the best answer out there...he looked at me point blank and said "Eric, it's either 0 or 100%, you're either going to beat this shit or you won't.". I love that man for that answer...it set me free from worrying about odds.

Live your life...live everyday like the gift it was meant to be. Feel good about yourself when you give your surgeon the finger and tell him where to shove those statistics because they don't apply to you and next time shut his yap and learn a little tact.

Do what makes you happy, it's your show, your dime, get your money's worth.

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #126631 12-22-2010 06:01 AM
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I love you EricS! You put it out there in black and white and to the point! LOL


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
Alpaca #126633 12-22-2010 07:16 AM
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Posts: 3,082
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alpaca

what a lovely Christmas gift it would be if Santa granted your wish: [quote]I just wish people understood what it's like to be a cancer patient in limbo.[/quote] Unfortunately only the OCF forum members truly understand what you are going through

I'm your age and IMO, the answer to your question: "what ails me" is Nothing. You sound 100% normal to me. Your feelings are all too familiar to many of us. I heard the same 80% scary stuff my first time only with an 18 month timetable which I "beat" by having my cancer come back within a year. I like your metaphor of "psychological speed bump on the road to recovery".
What would have been truly irresponsible would have been to put your life on hold in the oft chance that the cancer would come back. EricS's post is so true about statistics not mattering at all to the individual who either gets it or not.
On the bright side, every day that passes makes the possibility of a recurrance more unlikely.
I'll leave you with a quote I found helpful
[quote]The final battle of illness is for the high ground of emotional health to accept limitations and pursue the dream of a successful life[/quote]
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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