Previous Thread
Next Thread
Print Thread
Page 1 of 4 1 2 3 4
#35613 12-05-2007 09:05 PM
Joined: Nov 2005
Posts: 306
Platinum Member (300+ posts)
Platinum Member (300+ posts)

Joined: Nov 2005
Posts: 306
This will sound depressed and morose, but I really mean it to sound practical and sensible. How long should we fight back? It takes enormous energy, time and way too much money. Even after my insurance paid last time, I owed a fortune. The fight is so hard on the family, especially on my wife. Are we just feeding the medical monster by fighting with our last dollars and breath??!!

Yes, I got to meet my 3 grandchildren, I got to go back into the classroom and teach, I got to counsel a little more, I got to do some writing. All wonderful and worth the fight. But there are losses too. I am without my sense of taste, my sense of smell and my ability to swallow. My teeth are gone, my neuropathy in extremities continues and my balance is bad as a result. I can't ride my bike. The chemo stole the calcium in my bones so now I have osteoperosis and can't "risk" many of the activies I used to love. My peg keeps me from swimming or hot tubbing - two things I really miss. New normal? Sure. Can I live with those limitations? Sure. Have I had a wonderful time in the past 4 years the treatment made possible? Absolutely.

But what else can I afford to lose to another round of treatment? What else am I willing to give up to be alive? I don't know. I'm not preaching - just sounding off. I'm angry about it. Another round of treatment will drain the last of my retirement money. Whenever I eventually die my wife will get nothing. Not exactly what I saved for. What price to pay for each additional day? What amount of pain endured, stress endured, stress given to those around me?

Dying by inches. I remember my step-dad telling me how he just wanted to leave now. He was dying of emphzema. A big, robust man who loved life - reduced to a coughing, vomiting weakling. He tried to overdose but failed. We talked when he got home from the hospital and he said he couldn't stand to die by inches. "There is no dignity in this." he said. I didn't get it then. Life is precious. Life at any price. Now I understand what he meant.

When people close to us die we keen and cry and miss them. We wear black. We have a funeral. Lots of Kleenex. Then the sun comes up again. Some guy gets a flat out on the interstate, there is a new baby camel at the zoo, the gas bill needs paying, and somebody has to scoop the snow off the sidewalk. The news changes, the weather changes. Life goes on. There is barely a ripple left from your passing through.

In twenty years you are just a name on a marker. Does it really matter what day you die? Does it really matter then how hard you fought? that you lasted one more week or one more year?

No, I'm not looking for a bridge to jump from. I'm just angry and trying to make good decisions about what to do next. Give it a fit for three months and then re-evaluate? Go after it till my bank account gurgles and then quit? Stay with it till I lose 2 more human functions, then find a bridge?? Give my money and goods to the medico's till I am broke and then die of pneumonia sleeping on the corner of 3rd and Main streets? Interesting choices. Dark and whiny, but interesting.

Yes, I know this has been discussed before, but do again for me. Does anybody else ever have these thoughts? What happens when poor people get sick? There weren't any poor people in our chemo rooms, I can tell you that. I feel a little foolish posting this blog, but I do feel a bit better. Tom J


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
Patient Advocate (1000+ posts)
"OCF across the pond"
Patient Advocate (1000+ posts)

Joined: Feb 2007
Posts: 1,940
Dear Tom

i know where you are coming from sweetheart,and i know this post is going to illicit some fierce replies,not least from those who are fighting this disease with everything they have got,but like you Robin was concerned with quality of life,not quantity,and if he had known the path his illness would take him i can tell you straight ,he would NEVER had taken it.The temporary loss of his normal functions he could have tolerated i think,but when it went on and on ,he got angry and frustrated.The terminal diagnosis was the last straw and he was bitter and resentful that the last months of his life were spent being fed down a tube, losing his voice,losing his taste,his strength and his joy de vivre.For the first time in his life he was reliant on state benefits which he was ashamed of,and silly as it may seem to some ,the loss of his ability to "perform as a man" upset him so much he cried.

On the other hand i would have done anything to keep him with me no matter how he had to live,and that is selfish.
Some here will say you are wrong to feel as you do and that life is precious and you should fight to the end,having watched Robins demise i dont agree,and more to the point Robin and i talked about this at great length and it gave me a better in sight into how HE felt.

Bottom line Tom this is a decision only you can make,and you should talk to your family about it,who knows,they may feel the same as you,and fully support you if you decide to have no more treatment.They may cry and beg you to fight it but if you tell them where you are coming from and your reasons why you are reluctant to go on with more treatment,they may just understand.

I must disagree with your analagy about your impact on this world and how it will effect the ones left behind.
My father died 28 years ago and not one day goes by that i dont miss him,and regret the fact that my children and grandchildren didnt have the benefit of his kindness and wisdom,but they have his genes so i guess that will have to do.

As for losing my young husband,i cant even go there.
At 53 i see no future,life is cold and empty and my heart aches with a pain that even my two beautiful grandaughters cant heal.At the end of the day when the front door shuts there is no one but me,it is empty of any sound except the television,and when i put the lights out and climb the stairs it is to a dark loveless room where all i have is my memories that at the moment are too painful to bear.

It will take a lot of working out Tom,and i hope whatever you decide is right for you and your family.

I dont envy you the place you are in right now but hope you will get some solace from the people here who know better than me where you are.

much love liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Joined: Jan 2007
Posts: 40
Contributing Member (25+ posts)
Contributing Member (25+ posts)

Joined: Jan 2007
Posts: 40
Dear Tom
I hardly ever post here, but after reading your post thought I'd add my thoughts, although, not advice, I promise!
I am a 37 year old mum of a 10 year old daughter. I am very happily married, loved my job as a secondary school teacher, delight in my family and friends and felt blessed, until November last year when I was diagnosed with squamous cell carcinoma of the tongue - stop me if you've heard this one before!
A year ago today I had my operation, free flap from arm to tongue, etc, etc, lymph nodes whipped out (2 affected( chemo/radiation to follow and after months of recovery day by day, I was thrilled to be back at school in September, teaching again. Two weeks later and a routine scan showed multiple mets to my lungs.
You'll know only too well the horror of this.

My doctor was and remains fairly ambivalent about the point of pursuing chemo as a means of trying to stop/slow this, (despite it being, as a basic treatment, paid for by the UK NHS) We pressed ahead regardless and I am about to have my 3rd treatment - so far so good, although no idea if it's having any effect!

I realise I am rambling, but my thougths are that nobody can really say when/if/whether to 'fight' or even what that means for each of us.
I realise that in the States there are often huge financial issues to take into account as well. Here in the UK there are different rules for each NHS hospital and I am only too well aware that decisions are often made here about treatment options based on cost to the hospitals - we have already offered to pay for any available treatments (begging and borrowing if necessary!)
Some days I feel like I can carry on dealing with this indefinitely, but some days I am troubled with doubts. At this stage I am not in pain and other than a slight ache in one shoulder, no symptoms, so I suppose it's fairly easy now; I know that this may not always be the case...
I am trying to follow that old cliche of 'one day at a time' remembering who I am underneath all this medical nightmare. It's strange, but sometimes I think that I am less scared than I was this time last year - the worst has happened, so it changes the fear, I think - at least for now.
So today's plan for laziness is:
finish mooching here; a little internet Christmas shopping; quick tidy round the house; stick my head out into the rain and decide whether to go out or not (probably not as it's hammering it down at the moment); finish reading my current book; maybe a snooze/ listen to my meditation CD; look lively around 4pm as if I have been as busy as a bee all day, when husband and daughter arrive home!
Tomorrow I am out all day with my best friend, for lunching, laughing and shopping - all of this nonsense is enough for me now to say that I am determined to carry on carrying on - beyond that? We'll see - like Scarlett O'Hara - I 'll think of that tomorrow...(or maybe next week..)
I also feel a little foolish as I read back my post, but better too. I'm sure that you'll continue to do whatever feels right for you. I wish you all that you wish yourself,
Georgia

Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Tom - I have not been where you are but I have to agree with Liz about the impact you have on this world and how it will affect the ones left behind. You have already made a huge impact on me with just this one post. No one can understand better than you and Liz and Georgia and so many others here, the horror of this disease, how it takes so many and affects their families and countless others. I cannot help but feel that the experiences and genuine feelings shared here will have an impact on how we make decisions regarding this disease, its management, research and maybe even the insurance companies who seem to hold all the cards. Your comment about


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: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
The time scale you use makes all the difference as to whether you view yourself as a ripple passing through I think. Ultimately, we all are just ripples. But you also never know how you affect the future indirectly. I bet those grandkids of yours, Tom, if they get old enough to keep a memory of you, will treasure it years later as adults. And wonder and want to know more about you. Right now, I'm reading a journal written by the great great Aunt I was named after--who went out to the trenches and entertained the troops with her husband in WWI. Her life overloapped with mine by less than a month. When I was born she was extremely ill with cancer but reportedly overjoyed that the first child of the next generation had been named after her. Thinking about her courage during the war and the independence she showed for a woman of her age has influenced me. Even though we never got to know each other in person.

Now, having said all that, I do know exactly what you're saying here and yes, I have thought about it though I know it would take a lot more of my thought if I got a recurrence. I don't want to spend all my retirement savings as well as money I don't have but someone else might have to repay on a treatment that might buy me a few weeks of low-quality life. There comes a time when I think I would rather make my peace with impending death and say "enough". When that time is is something I hope I will know when and if I get there (I could always get in an accident and have no time at all). I hope you will know it when it comes too.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Nov 2006
Posts: 93
Supporting Member (50+ posts)
Supporting Member (50+ posts)

Joined: Nov 2006
Posts: 93
As a caregiver I would try to support any decision my husband made.
As a wife it would be darn hard but would NEVER want to see him suffer.
Maggie


caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
Joined: Sep 2006
Posts: 1,357
Likes: 5
"OCF Canuck"
Patient Advocate (1000+ posts)
"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Sep 2006
Posts: 1,357
Likes: 5
Tom: Dont plan on going anywhere soon. I read your post and so much of it resonated with me - words I couldn't find and/or didn't want to think about.

Your comment "What happens when poor people get sick? There weren't any poor people in our chemo rooms" brought tears to my eyes...what a cruel place this world is sometimes.

How I wish I could talk to you. You say so many of the things I think about. I would suggest that you are far more valuable to this planet than you give yourself credit for...look at how your words have impacted others.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
There were poor people in the chemo room I was in. But those people were getting treated partly as charity cases, I have no doubt. A nurse practitioner I saw there (at my MO's office) told me once how lucky I was that my insurance covered the Jevity I was using to tube feed myself. She said she had another pateint on Medicaid and food stamps. The medicaid refused to cover the prescription tube food because they said they didn't cover food. But the food stamps office wouldn't cover it because it was medical supplies.

This was someone without an extra penny to her name and fortunately radiation medicine at the hospital gave her stuff they had got like boost and ensure to hand out to patients and that's the only way she got through.

I wasn't treated at a CCC, which may also be the difference in whether you "see poor people in the chemo room". I have to say my impression of the very very good hospital I have gone to in Boston for help with esophageal strictures is you see a lot more middle class and wealthy patients there. Not all by any means but, especially the ones that come from some distance, like me, are certainly not among the poor.

This is really a good discussion Tom and I agree with the others that just your ability to make us think and respond to these issues speaks to how valuable you are in this world!

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Jun 2007
Posts: 510
"Above & Beyond" Member (300+ posts)
"Above & Beyond" Member (300+ posts)

Joined: Jun 2007
Posts: 510
Petey. I never met him, and he only posted here on the forum for a short while. I felt like I had known him my entire life.

The impact that he had on an untold number of people during his illness and even in death, cannot be measured. I'm not sure if anyone on the forum ever met him, but everyone loved and respected him. If this ONE person could impact so many that he didn't even know personally, then how much MORE can one person impact another if they DO know one another.

It is my belief that EACH one of us has a specific purpose on this earth. I don't know why some of us survive and others, seemingly more deserving to live, die. I don't understand.

It is also my belief that the decisions you are contemplating are yours and yours alone. I wish that I could express myself more clearly.

How will I feel if I am ever in that position? Or, what if Buzz were to need to make this decision sometime in the future?

To someone, you're their whole world. You're unique, special, one of a kind.

I'm sure you'll make the decision that is right for YOU and your loved ones.

I will certainly be thinking of you, as you face this trial.

Lois


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
Joined: Jan 2007
Posts: 735
"Above & Beyond" Member (500+ posts)
"Above & Beyond" Member (500+ posts)

Joined: Jan 2007
Posts: 735
Tom

I sit here and read your post and cry. I cry for so many reasons. I think about the people I have lost and the impact they have had on me . The Hell I have gone through in the last year , the Financial BURDEN I have caused my family in the last year. The fear of doing it again .

I understand what you are saying , And as Much as somtimes I want to say I wouldnt want to go through the half of it again ..I dont know for me it it would be fair , I am a 36 year old mom of 5 . Is it fair to them ? I dunno , But is it fair to them that I am struggling to put food on there table and let them keep up with the Sports and dance , because This DAMN DISEASE has cost us sooo much !! And my health kinda spiraled a bit after.

I am not considered "poor" enough to get help. But I sure am not well off enough to survive . I just went back to work ( had a total hysterctomy 8 weeks ago and back in a couple ago to have some things FIXED Inside ) and I am trying to work 2 jobs, coach school teams, and run kids to sporting events and help out and the Dance studio. Am I going to run myself down ..I have NO IDEA .....I don't know what to do anymore , would they have been better off , if things would have went differently ....and then the bills would have stopped and all , the kids would have been sad and always been sad , but not been under this stress and suffering .

I think only we know what we can do and we need to talk to our families and let them know are feelings. I am glad I am here and I am ok . I just wish I hadnt put my family in this position.
Specially hard this time of year. I hate myself for it .

I hope that you can search inside your self Tom and find the answers.

Shar


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
Joined: May 2007
Posts: 104
Senior Member (100+ posts)
Senior Member (100+ posts)

Joined: May 2007
Posts: 104
FIGHT FIGHT FIGHT!!!!! Of course this is from a Mom whose daughter fought with all she could. It beat her. BUT it won't beat everyone. FIGHT!
God Bless you.....thoughts and prayers with you...


Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
Joined: Aug 2007
Posts: 580
"Above & Beyond" Member (500+ posts)
"Above & Beyond" Member (500+ posts)

Joined: Aug 2007
Posts: 580
Tom,
I could have dictated your post from memory. I had the same feelings that you seem to be expressing.
I was 27, I assume you are older than me, so we'll say 45'ish. Doesn't matter.
My 2 cents worth...
Money..was important to me until cancer took all I had and then some. I lost everything to the tune of over 1 million dollars. I lost my practice, my home and my credit rating.
I will not live long enough regardless if I had cancer or not to ever recoup that loss. I really could care less. If I have my family around me, money doesn't matter. Some of you will be chewing you nails...saying Mike's a dentist he doesn't have to worry about money. I don't worry about what I don't have. I have no savings, massive credit card debt, huge loans that built my office. (I'm happy...yeah I read that and had to slap myself.)
If I had not had a wife and a son when I was diagnosed I would not have had the treatment.
You have three grandchildren. I envy them, I don't remeber my grandparents. My son has all four and he loves every minute he spends with them.
I'll leave you with this...Life is a fight, more or less, It's up to you to decide if it's a pillow fight with your grandchildren or bare knuckles with your brain. I used to get angry and beat myself up by overthinking and analyzing every aspect of what I was going through. It wasn't healthy for me, but be reassured Tom we all have had similar thoughts.
I wish you well and pray for you to find some comfort with any decisions you decide to make.

Cheers Tom, by posting you have said what I'm sure so many wanted to but did not. Yes, In my 5 months here we have debated this a couple of times. It doesn't hurt to share your thoughts and is certainly bound to help someone else.

Take care,

Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
Joined: May 2007
Posts: 632
"Above & Beyond" Member (300+ posts)
"Above & Beyond" Member (300+ posts)

Joined: May 2007
Posts: 632
You probably put this issue out for debate Tom, more eloquently than in any previous discussion.
Money isn't really an issue here as far as treatment goes--everyone is treated equally, but there are still the issues of lost income etc.

The 'Quality of Life' issue is one which I am sure we all think about a lot, even if we don't openly discuss it.

The first thing I did before deciding to have treatment, which has only ever been mooted to prolong my life anyway, was talk to my nearest and dearest--who were all desperate for me to 'go for it'. But that's because we knew the side effects SHOULDN'T be too horrendous.
But my family are well-aware of my wishes, that if I feel I can't go on and we're only looking at buying weeks/a few months, then it's hospice care and the most physical comfort I can have.
(I have promised them that I won't jump off a bridge as suicide invalidates the insurance payout!)

It's totally scary to think we're going to die and the statistics don't seem to mean a thing when it comes to deciding 'Is it worth it?'

But take a piece of paper and and jot down all the lives you've impacted on--I'm sure you'll find there's more than a ripple going to be left!
Your thought-provoking post has, as others on here have said, made an impact on us all--it's taken me this long to respond because I just felt you had 'said it all'--apart from you should have 'tidal wave' instead of ripple! smile

Brenda


Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
Joined: Apr 2007
Posts: 64
Supporting Member (50+ posts)
Supporting Member (50+ posts)

Joined: Apr 2007
Posts: 64
I am overwhelmed reading this it has put many of my feelings into words. Certainly nothing foolish about your blog Tom!
"Brief if life, but long is love"


Adele,
mucoepidermoid carcinoma of the submandibular gland, 05/06, left neck dissection, gland and tumor removed, intermediate grade, margins negative, 9 lymph nodes negative, no rad, no chemo,
11/07 surgical biopsy of lymph node left neck, no cancer!
Joined: Nov 2005
Posts: 306
Platinum Member (300+ posts)
Platinum Member (300+ posts)

Joined: Nov 2005
Posts: 306
Well, my little tantrum sparked some interesting comments. This thread makes me aware that I never did 'angry' the first time. I did scared and determined and focused and tough, but I didn't do angry. Frankly, a LOT of what I'm feeling now feels more about last time than this time. Fighting cancer is like a super slow motion battle against a chain saw. Now matter how well you defend yourself, you get cut a little. A little here, a little there. You win, but you know you've been in a fight. The angry is about the inability to keep from getting 'cut'. You can see it coming, you know it will hurt, there is no way to move out of the way.... "The only way out of here is to get past the guy with the saw...." We sit still in the chemo rooms, we lay quietly under the radiation machines. We know (soon enough) what it will do to us, yet we keep going back and doing it again and again. What an incredibly passive way to fight something so deadly. I think thats where the anger comes from.

Give me a weapon, a knife, a gun, even a stick and I'll fight whatever you send through the door at me. I'll be on my feet, I can roar and charge and swing and bite and hiss and scream and hit and kick. But this is an invisible enemy, tiny, diffuse, unreachable. And it isn't charging through the door at us, we brought it in ourselves - its always in there - inside - lurking - threatening - ruining. Roaring and striking doesn't affect it at all. It doesn't care if you are tough, big, little, young, old, strong or weak. Cancer is the ultimate bad guy - ruthless, without conscience, no eyes, no soul, no form - just evil.

So we fight back with potions of invisible molecules and invisible beams created by others. We endure, and suffer and wait. We visit others who press the fight for us. All we do is show up. And keep showing up. We get up when it knocks us down and we show up again the next time we are summoned. We amaze ourselve and our families with how much punishment we can take in this invisible war and keep showing up again. Passive punishment.

Every chemo room should have a firewood pile and some axes for splitting wood. Or an anvil and a collection of heavy hammers with which to pound. There should be a rage room where we could go and scream. There should be a heavy bag that we could punch until our arms grew too heavy. I wouldn't have had the energy for much of any of that when I was in chemo last time, but I would have tried. Maybe the chemo rooms should be shaped like the octagon of the ultimate fighters. The relatively powerless feelings made me angry last time, and here it comes again.

Nothing like chatting with friends to get that 'emotional enema', and dump some of this bad juju. Overwhelmed is converting to determination again - just like last time. 'Poor me' is beginning to convert to 'watch out cancer - I'm comin'. Tom J


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
Patient Advocate (1000+ posts)
"OCF across the pond"
Patient Advocate (1000+ posts)

Joined: Feb 2007
Posts: 1,940
"Every chemo room should have a firewood pile and some axes for splitting wood. Or an anvil and a collection of heavy hammers with which to pound. There should be a rage room where we could go and scream. There should be a heavy bag that we could punch until our arms grew too heavy." for all the above see carers smile


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
I hear you about the anger, Tom. I am just starting to feel angry about having to go through what I went through--as well as the lasting issues, of which it seems that I've had more than my share. If I got a recurrence I'd be even angrier, I'm sure. Go out and chop some wood into little sticks....

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Great to see that determination coming back! And if ever the arms grow too heavy to punch that bag, we'll be here to help hold you up in the fight! Fight mode is good. Hang in there and stay close to this site.


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: Jun 2007
Posts: 510
"Above & Beyond" Member (300+ posts)
"Above & Beyond" Member (300+ posts)

Joined: Jun 2007
Posts: 510
A two-time breast cancer survivor myself, I remember well when I was first diagnosed...I stomped, screamed and beat on the walls....I cursed God and asked 'what have I ever done to deserve this?'
....after a while, a thought reverberated throughout my head and shook my entire body...."WHO do you THINK YOU ARE that you should be spared this disease??? Yes, I had been a 'good' person, never intentionally hurting anyone, loving, caring...

It finally settled in my brain....'Lois, you're NO better than anyone else who has had to experience cancer...it's YOUR turn"....
That was in 1986, then a recurrance in 1996....(I don't know, and don't WANT to know if it recurred in 2006, so I haven't been to a doctor...lol....)

It falls under the heading '*hit happens'...bad things really do happen to good people...

Grandma always said (and Grandma was ALWAYS right) "that which does not kill you, STRENGTHENS you"....I firmly believe that!

Lois


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
Joined: Aug 2007
Posts: 580
"Above & Beyond" Member (500+ posts)
"Above & Beyond" Member (500+ posts)

Joined: Aug 2007
Posts: 580
I hate to admit that "I'm a little off", I never sat quiet in any treatment room. I brought my guitar, sang, invited student Dr's and nurses etc. to come check me out and tried to make as much fun as I could. Every time I went and still wait in the "waiting" room, sometimes for a couple of hours, I always look for the seat beside the scardest looking person in the place.
I walk up to them and introduce myself. Then I ask them if they have a favorite song so I could play it. Wether I know the song or not I play it soo...sooo badly that they have to laugh. Then I play some songs almost perfectly. Usually, it becomes a happy carefree spot.
Basically I take the gas out of the chainsaw...most times it help me and hopefully someone else.
On one occasion, the person I sidled up to basically told me to get lost, so I did. I came back later with the hospital gown on and walked right by him with my ass bare for him to see...yeah I have no pride...grabbed my guitar and walked back to the treatment room. I was playing a few songs while my favorite cocktail was dripping into my veins and he peeked in and asked if he could come in and listen...of course I said, "sure." 2 minutes later we started talking and I think I made him feel better. I saw him a few more times and he always came to listen to me play and talk to me. Unfortunatly he passed away four years ago. Shortly after when I was going for follow-up a woman approached me when I walked in, guitar case in hand. She handed me a card and said Thanks. I had no idea who she was. She was this man's sister, in the card was a note from her saying Thanks for helping my brother cope with his treatment. There was also a sheet of music for the song, "I will survive." The bottom of the sheet had a not that read, "Thanks, the way you played this hurt me more than cancer every did...learn it for me."
I was attempting to ruin that song when I met him to try and make him smile.
Rambling....
Tom, angry...yes I guess I occasionally had that emotion, my guitar was my chainsaw and as long as I played it I guess I thought I wasn't being played.
Don't let this beast play you.

Cheers,

Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
It is amazing when we think of the people that made an impression on us and often without even knowing that they did. I've met some pretty great people in the Rad waiting room while waiting for my son to get his Tx. . . . the lovely Cookie Lady, who always had cookies to offer even though most people politely declined - especially those well into their TX; the 45-ish gentlement who was always laughing and cracking jokes; the very young man (my son's age) who shared his story and told us about OCF. And then one day, it was a beautiful, quiet, gentle collie dog with soulful eyes and a bright scarf around his neck accompanied by a young woman. He came and sat in front of my son and me and made eye contact. Then, as soon as my son extended a hand, the collie drew a little closer and there was a special connection. It seems he was officially a therapy dog and did make a lot of people smile in the Rad waiting room.


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: Aug 2006
Posts: 295
Gold Member (200+ posts)
Gold Member (200+ posts)

Joined: Aug 2006
Posts: 295
It's certainly a difficult call. Both of my parents went out like a light with heart failure with no prior history of heart disease. Was that the way to go at ages 68 and 69? I really don't know but I do know that neither of them had any chance to fight back as they apparently never saw it coming. My mom found dad dead on the kitchen floor at 4AM and less than 2 years later it hit mom while driving down a rural road near her home. Thankfully she had time to pull off into a shallow ditch without endangering others. I was diagnosed with BOT and so far have shined victorious. That's no guarantee for the future but at least I feel as though I was able to fight the battle for what it was worth. I suppose I would do it again if recurrence entered my future but everyone's case and situation is different. I guess one can only make their own individual case and hope we make the right one.

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
Patient Advocate (1000+ posts)
"OCF across the pond"
Patient Advocate (1000+ posts)

Joined: Feb 2007
Posts: 1,940
The hospice Robin was in has PAT dogs,their owners brought them around about three times a week,and they just snuggle up and wag their tails while you stroke them.They didnt come near Robins room because we had the haridan from hell with us (our jack russell) and she is very territorial lol


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Joined: Nov 2005
Posts: 306
Platinum Member (300+ posts)
Platinum Member (300+ posts)

Joined: Nov 2005
Posts: 306
Good counsel from everyone. There are no clear answers. I spent some time with my grandkids today and it made my heart ache that I might not get to see them get much older. I am remodeling our house and there is now a sense of urgency about getting it done.... All the junk in my shop appeared to me today, and I decided I should sort through it and thin it out so my kids don't have to mess with it when.... Don't get me any Christmas presents, because whatever it is I won't be able to .... All very calm.

The interesting thing is, I have decided to fight back. Strange that all my mortality stuff is coming up AFTER I have decided to battle on! Go figure. No sense buying new shoes, no sense renewing the magazines I enjoy, no sense upgrading the cell phone contract, etc. Interesting thoughts. It doesn't feel dark or scary, just 'being practical'!!

Of all the things I've lost, I miss my mind the most!! Does anyone else ever have the "mortality heebie jeebies"? Tom J


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
Joined: Feb 2007
Posts: 1,940
"OCF across the pond"
Patient Advocate (1000+ posts)
"OCF across the pond"
Patient Advocate (1000+ posts)

Joined: Feb 2007
Posts: 1,940
Good Lord Tom everyone has them wether they have an illness or not.

I had a terrible time with fear of dying,when i first became a nurse 30 years ago.At 18 and completely untouched by it ,i suddenly found myself surrounded .I would wake up in the night shaking and sweating i was scared to close my eyes,even these days when i get in the car to go on a long journey,it enters my mind .As for tomorrow,the thought of getting on a plane is shaking me rigid.
The worst part of the realisation for me was the fear of anything happening to my family.

So yes the heebie jeebies are a part of life i think but how someone copes with a time scale to that just escapes me.Robin never blinked an eyelid,and stayed that way for the whole three weeks he was in the hospice .It was astounding.

I guess when the fact becomes a reality some of the drugs used take the edge off the fear factor,and if you ever decide to go looking for your mind,see if you can find mine while you are at it.!!!

love liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Joined: Sep 2006
Posts: 1,357
Likes: 5
"OCF Canuck"
Patient Advocate (1000+ posts)
"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Sep 2006
Posts: 1,357
Likes: 5
You are so expressive Tom, and help me realize I am not alone in my wierd thoughts.

For me, my questions have been about whether it is worth getting new clothes, or new glasses, or buying something that my husband might not want to deal with.

Then part of me fights back. Cancer is a THIEF. When cancer is able to steal even a part of THIS day with such thoughts, as well as the others it has/will take with treatments and appointments and feeling unwell, then I realize that I cannot let that happen. We have to continue to live our lives as normally as possible (assuming no lotto wins!).

We cannot let Cancer steal more time from us than it already has. THIEF!!

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
Joined: Apr 2005
Posts: 2,219
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,219
Atta boy, Tom. I love to see a good fight.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Great, Tom! And we are in there fighting right alongside you!

Donna - I really love the way you put this: "We cannot let Cancer steal more time from us than it already has. THIEF!" I'm putting it my unforgettable file. I think it can apply to other situations or hurts in life as well. It emhasizes for me the importance of fighting to block out the negatives and creating joy whenever and wherever we can - and not "sweating the small stuff".


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 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Tom & Donna,

This web site is devoted to fighters and we have told more than one to stop wasting our time if all they wanted to do was give up before there was no other option.

We will be with you and we will fight right along side of you and we know that we have a great chance of wining your battle because we have done it many, many times before.


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: Aug 2006
Posts: 295
Gold Member (200+ posts)
Gold Member (200+ posts)

Joined: Aug 2006
Posts: 295
Tom,

You may now move forward and purchase/plant small shrubbery and green bananas.

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
Joined: Nov 2005
Posts: 306
Platinum Member (300+ posts)
Platinum Member (300+ posts)

Joined: Nov 2005
Posts: 306
Ok Bill, You've got a new one running here. Is this a southern expression!!?? I'll bite. I gotta know what that means. Help me Bill, help me. TJ


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
I have an 82 year old mentor who frequently tells me that he doesn't buy green bananas because he doesn't think that he'll live long enough for them ripen. It's a joke of course.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Page 1 of 4 1 2 3 4

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,264
EzJim 5,260
Brian Hill 4,918
Newest Members
Red Chicken, Teach, Harry B, Snowdrop123, Aurora1369
13,503 Registered Users
Forum Statistics
Forums23
Topics18,305
Posts197,297
Members13,504
Most Online7,516
Mar 21st, 2026
Powered by UBB.threads™ PHP Forum Software 8.0.1