| Joined: May 2013 Posts: 134 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 134 | Masks fear? Oh, I was very openly and admittedly afraid. If you're not afraid then you must not understand the situation. I guess setting fears aside and digging my heels in is just the way I'm wired.
Dx March 2011 via FNA (49 yrs old) SCC BoT HPV+ exact strain unknown Stage IVa T3N2cM0 Cisplatin x 3, IMRT x 40 (7267 cGy) One node removed post-treatment (rad dmg) Clean PET 10/28/11 Swallow therapy | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | The Fear Factor didn't come into my situation as much as it seemed to affect others. Having faced death head on with the heart attacks, I have been there on the edge. I was in the hospital ER with doctors and nurses all around me trying to stabilize me. Believe me it was crazy! Then, with the emergency situation (bleeding) after my neck dissection, I was yet in another situation where my life was on the line. It didn't really sink in until one of the doctors said "Mr "T", this is very serious. You could die!" When I was in those situations, I wasn't thinking about death. My life wasn't flashing in front of my eyes. All I knew in those moments was that I hurt badly and I wanted the pain to stop. I recall driving myself to the hospital with the 1st heart attack and getting tunnel vision and feeling like I was going to pass out. I wasn't scared. I just wanted to make it to the hospital! I recall thinking "Man, I should have done the dishes and picked up the dirty laundry"... "Did I clean my cache?" ~lol~ Then came cancer... I was more concerned with everyone else I would leave behind should it get the better of me. I don't fear death. I do fear the pain but I know there's good stuff they could pump me with to make me comfortable. I was pissed and still am to some extent. I deal with frustration more than anything else concerning the side effects and the way cancer has changed my life but I press on, one foot in front of the other. I know I'll eventually settle into my new abnormal life "T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I had fear when I was first diagnosed, I guess of the unknown, but not really much anymore, I faced my fears a long time ago, including death, many illnesses, 5 recurrences, and still angry, which may be the wrong word, but sounds better than preparation, information, active surveillance, and vigilance I do. Actually, anger is also somewhat related to fight or flight syndrome. I never fled from anyone, and all my jobs entailed my responding when everyone else ran away lol, so I'm not starting now. But I like being an angry man, somewhat fearful. anyway lol, it keeps me on the edge to act quickly. Actually, anger is part of any traumatic event, much like dealing with death, first it's shock, then denial, anger or blame, depression, and finally acceptance to move on. I just never accepted cancer to move on.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jan 2013 Posts: 1,292 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,292 Likes: 1 | Such interesting responses but most seems to lean toward the anger, aggression tone. I am four weeks post and by most accounts have glided over most of the rough spots most encounter. However, that in no way diminishes the fact that I have cancer just the same as everyone else in the fight.
Having lived in survival mode for quite some time and standing at the point of life and death numerous times, death does not frighten me or anger me. We all die, just a matter of when.
I turn a lot inward and if anger were to emerge it would be at myself for how I lived the time I have here on Earth. Did I live well, did I treat others well, was I productive, did I waste time, how much was I able to pay forward, etc.
Cancer is a luck of the draw in my view. I lived a healthy life and did not smoke or drink or live too hard, so getting cancer was written in the cards long ago. No need to get angry or upset. It is what it is. Now DEAL!
How well I deal with the situation is where anger or frustration could enter. If I handle things poorly then I have a right to be angry at myself, not outwardly. I will blame myself many times over rather than strike outward. That is why I spent far more than generally observed time, reading and learning everyday about the condition I(we here) face. And a good day is when I know I have armed myself with knowledge to ask the right questions and assess my situation. If things don't go right then make a change. If things don't go right, blame myself for not making the correct assessment and selecting the correct path.
It is like I do not blame myself or anyone or anything for me having cancer. I will blame myself first and foremost as I am the ONE accountable for my life. I just do not see the rationale behind getting all worked up and having that energy and focus go toward anger and all these other negative feelings.
In a way, I view that as a black mark on me again. I spent precious limited resource of time, energy, and focus being pissed. WTF is the point of that. Look what happens: You squander away those limited resources to an end that does not produce something of benefit for you. In my case, I would say rather than waste today preoccupied on the hassle of chemo, I study hard and research some cancer topic using my laptop. At the end of the day, I could be no more knowledgeable or informed but happily pissed or could have a few good new references to get ahead of what next possibilities are out there for my long term health.
As far as the ones that totally collapse and fail to make any concerted effort to be their own advocate or source of strength for the battle. let them lay there as far as I am concerned.
Just different ways each person deals with the curves life throws at each and every one of us each day.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | True, Don. Different ways. Not right or wrong. Just different. And whatever works in helping us to survive is the right one for each of us. For me, in caring for my son - the anger (not necessarily turned outward) is what spurred me on to find ways to help him survive. Perhaps it is my French-Canadian background. There is a saying in French: "Syst�me-D" which means "D�brouille-toi" or "figure things out, or work your way through the fog. A proud parent will say about his child, "Il est bien d�brouillard" (He can figure things out for himself). There is always something you can do about whatever situation you are in. And doing it is what kept me from falling into the Black Pit of depression. Speaking of black pits, William E. Henley's poem "Invictus" also helped me many times to get a grip on myself. It's on my website here in case it might help anyone: http://webpages.charter.net/xila/favpoems.html
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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | For Alex and I the irritability/anger was driven by different things. For me it was time and stupidity. I did not feel I had the time to wait for others to catch up with the programme and if they delayed what I knew had to be done I didn't muck about being polite. Bureaucracy drove me insane as their processes delayed what clearly needed to be done and I could not abide "but that's the way we always do it" response. I remember being told that payment of sickness benefits would take 12 weeks to review and if I wasn't happy with whatever the outcome was, I could then write to the ombudsman. When I told them that I would not wait such a ridiculous length of time and would just go directly to the ombudsman for a ruling, they got quite agitated. But they processed the paperwork whilst I waited and Alex received his payment plus backpay (we had already waited 2 months for them to get their act into gear) the following week. For Alex, I am sure there was a fear component but the biggest issue was confusion and short term memory loss brought on by the chemo. He was often incapable of joining the dots, leading to confusion which manifested as "brain snap". As dementia often presents as "irritability" I wondered if a similar mechanism was affecting Alex. Regardless of the cause, I think the most important thing that helped was knowing what we were going through was normal or at least common. Reassurance from this forum went a long way towards helping us manage the situation (although I still fantasized about dropping Alex off by the side of the road on occasion )
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2013 Posts: 144 | Well said paul, you want to know I trick? When I feel like this is going to be too much for me to take. I think of you and the shit you've been throgh and still manage to show up with paper and pen. (prepared to help others). And I feel the fight in me rise again. So thank you paul, and all others that have shown me your personal strength from which I draw from. Shawn U.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF 3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2013 Posts: 144 | Mamacita, wow! I am glad you shared this with us. We cant be bright eyed and bushy tailed all the time. sometimes this sucks out loud! and you have to acknowledge it from time to time. Well done sweets.
Shawn u.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF 3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | I think it was Ekhardt Tolle that said, "You cannot change what you don't accept" so if we can first realize what is happening, recognize it and accept it for the horrible thing it is, we can more easily get into the fight mode and start doing something about it which gives us control over the beast. Or as Don has said, "Now DEAL!". And there are lots of people here who can help us in the fight, hold our hand when we falter and give us hope.
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: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Mama, I am so with you. I was diagnosed 5 weeks after I opened my own business. I was within the 3 month window for my extended health insurance, and the only way for me to earn an income was to work. Talk about shitty timing.
When I was in hospital, and being my own advocate (asking about meds, etc.), I was listed as a "difficult" patient (I saw it on a sheet tucked into a new nurses pocket).
I was 39 years old, and righteously pissed. I got tired very fast of people asking "how are you"? I wanted to scream at them all - I have cancer you jackass! Of course I'm not all right. I didn't, but man, it was tempting sometimes.
My saving grace - my parents. They were so devastated by the news that I couldn't pile any more on them. My dad looked like he was going to burst into tears at any given moment, and he's not a crier. So I faked it.
We have a saying for young lawyers - "fake it, til you make it", which is the false confidence we use until our knowledge and skills get good enough.
I still have my moments, when a word gets stuck, or at lunch when someone chomps down on a burger and I want to choke the life out of them. I tend to come here those days, and remind myself of the people here we lost, or those who have it worse than I do, and tell myself to stop being a baby. Sometimes I just rant. That's what we're here for.
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
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