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Joined: Jun 2013
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Joined: Jun 2013
Posts: 262
So here I am post diagnosis, in the lull before horrific treatment (cut and burn, poison optional), when I am 'spose to be so keenly aware of every moment, every blessing..........more alive than ever in the face of mortal threat........

YADDA YADDA FRICKIN YADDA.

Guess I missed the noble cancer warrior pose at yoga, people. Cuz I am one surly woman right now. I have no patience. And the snapping I'm doing is NOTHING compared to the snapping I'm thinking.

So now, on top of everything else, I have GUILT for how I'm treating the people closest to me. As if they didn't have enough pain already.

Who knows what I'm talking here???


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Joined: May 2013
Posts: 134
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Joined: May 2013
Posts: 134
My dad (colon cancer survivor) gave me some advice after my diagnosis:

When I was at MDA, there were two groups of people. One group curled up in a ball with their blanket under their chin. Sometimes they sleep. Sometimes they cry. The other group paced the floor. Sometimes they spit. Sometimes they cuss. They were pissed. The pissed off people all left before the other group.

I took it to heart as best I could and it served me well. OC will beat you down and keep you there if you let it. Based on your post, cancer doesn't stand a chance.


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: Jun 2013
Posts: 346
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Glad to know I am not the only cranky one!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Joined: Mar 2013
Posts: 421
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Joined: Mar 2013
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I know what you mean! I was pissed too! How dare cancer come in and screw things up like it did!

I divorced a 2nd time in 2006. Practically wiped me out. November of 2007 I had a heart attack and triple bypass surgery. I didn't have insurance. That wiped me out. I struggled for a couple of years. Several times I thought I'd be out on the street.

Then I got a job in the music industry. I had over 11 years experience and it was the perfect fit. After a 15 year hiatus, I started playing music again, and was gaining success. I met Marcia in October of 2010. My life was going well for the first time in 5 years.

I had my 2nd heart attack in October of 2012. The bypasses arteries were fine. Three others were blocked. One at 99%. The doctors were surprised I came away relatively unscathed. Three stents later I was home and back to work. I had the swollen glands since August of 2012 and mentioned them in the hospital but their attention was on my heart.

November of 2012 was a visit to the ENT's office, biopsy and DX'd SCC stage III or IV. You gotta be kidding me! Cancer? F that! I have too many things going on to deal with cancer. I want to propose to my girlfriend, I have gigs booked into March of 2013!
Yeah... I was pissed.

I went into treatment pissed. I got beat down, kicked, punched and pummeled for 6 weeks but kept fighting back. I have too much to do!

The added aggression served me well in the fight.

Positive thoughts and prayers

"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: May 2010
Posts: 638
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)
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"OCF Down Under"
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Posts: 638
[quote]Guess I missed the noble cancer warrior pose at yoga, people. Cuz I am one surly woman right now. [/quote] laugh

It's not just the survivors who become intolerant/combatative/surly

Whilst I regularly described Alex as a tantrum throwing 2 year old on this forum, for my part, I was at least as bad if not worse. I went toe to toe with the thoracic registrar looking after Alex's lung collapse when he suggested a 4th do over of the same procedure that had already failed the previous 3 times, nailed the RO to the wall when he suggested that Alex "wasn't trying hard enough" and smacked (figuratively) the bureaucrats who hid behind illogical and inflexible "policies" for sickness benefits. Alex DID eventually receive the attention of the head of the cardiothoracic department, get the RO consult returned to his case, and get sickness benefits backdated to the date he was diagnosed.

Do I care that I ruined so many people's day? Not if they were saying or doing stupid things. I feel slightly guilty about the people who did understand but could not do anything about it though...

I have heard from many people that once one has faced a life changing experience, one's perspective changes and one becomes more tolerant as the priorities shift. 3 years later, still waiting ...

HOWEVER, Alex and I are a stronger couple for the experience, our social network has shrunk to two (our choice) and we both do what WE want to do and everyone else be dammed. We are polite about it - but that is the way it is. Alex, despite all his ongoing issues (taste, swallow, weight, teeth), says that 2012 was his best year ever and 2013 will be even better!! He describes himself as content. I am not quite where he is (still have a massive amount of "righteous indignation" when I perceive an injustice - no matter who it is aimed at) but I do agree that our relationship is more solid than I could ever have imagined a relationship could be.

I don't think I will ever reach that stage where I might consider that cancer gave us any sort of "gift". I still find that type of remark mostly offensive. Whilst Alex and I might be stronger for the experience, I would still have preferred to skip the drama of 2010/2011 and remain the weakling I once was.

PS I have no sense of balance so yoga in any pose is totally wasted on me wink


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 smile
Still underweight
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Joined: Nov 2006
Posts: 2,671
Yes! the aggression does serve a purpose. It gets you into the fight mode so that you can kick the horrible attack on your health. Caregivers get it too! I was SO angry that Cancer attacked my son! I would not, could not - consider even for a second any alternative but survival for him! About the guilt - don't worry about that - you can always say "sorry" later. The people close to you will understand. Right now - stay in the fight mode and it will serve you well in the days ahead. There are lots of caring people here who will help you every step of the way. So stay close and let us know what's happening.


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 2013
Posts: 134
Senior Member (100+ posts)
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Joined: May 2013
Posts: 134
Getting close to two years cancer free. I can look back objectively and admit that there were blessings wrapped up in this horrible disease
1) I learned how to fight - that will serve me well the rest of my life
2) I learned there are things worth fighting for
3) I learned there's a whole bunch of things that aren't. This one is a biggie! Many things I thought were so dang important before didn't amount to squat. I'm much better at letting the little stuff go and most stuff is little.

I really am a different person now and can't imagine living life like the old me


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: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,267
Likes: 1
I've been in some form of treatment, surgery, testing, hospitalization, blood transfusions continuously for 3.6 years, not just 7 weeks like most, and had 5 recurrences, having to go through all the same anxiety, doctor visits, testing, waiting, and treatment, each and every time. I go to two, sometimes three doctors a week, blood tests, just as often, and this has been going in since Oct 2009. If I put everything down in my signature, it would take the whole page. I've been in fight mode ever since diagnosis, actually before that growing up lol, but I can say, I will never accept cancer did anything to improve my life. I'm happy being unhappy. Cancer made an enemy for life with me, and I don't turn the other cheek to get slapped again, or accept what cancer did. I'm the type to get revenge, and in this case, living is the best revenge.


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: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Posts: 8,311
Of course you are mad. I think that's a positive reaction but you need to shortly get that feeling out of your system, so to speak and channel that energy into joining your treatment team and defeating a disease that is trying to kill you. We will be with you as long as you want and you can always yell at us because we know exactly how you feel.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
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Joined: Dec 2010
Posts: 5,260
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Aggression also masks fear. It's good to be angry to some degree but you also very much need to deal with the fear, hugs my dear.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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