CSN Login
Members Online: 14

To TW

ClaraW
Posts: 64
Joined: Jun 2012

I don't believe you understand how much you've touched our lives. My sister-in-law and I have read through each and every one of your posts. We cannot thank you enough for the amount of knowledge and comfort we have gained. Your threads are like your arms reaching out to help all of us who are seeking desperately for help. Your selfless and relentless drive to help others who are more fortunate than yourself as far as RCC is concerned is heroic.

I know your treatment will be effective, and you will thrive and enjoy life for many many more years to come, however I am still sad. Sad because I cannot think of a way I can be of any assistance to you.

If I were Behrman, I’d paint you the last leaf.

foxhd's picture
foxhd
Posts: 1935
Joined: Oct 2011

Clara, we all share your feelings. Wedgie is without doubt our most appreciated, loved, and probably most intelligent friend and leader on this forum. He leads us unselfishly into the research, guidance and insight that he shares with us. One can only imagine how busy he is in his private life. Yet here he is always with a helping hand. Even to those much more fortunate than he..... ( Even if he does golf in the rain and cold.)

angec's picture
angec
Posts: 622
Joined: Mar 2012

HERE! HERE! I concurr!!

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Couldn't agree with you and Fox and Angie more. Wedgie is one of the most selfless people I've ever met in Webworld or otherwise.

Today I had a young man stop by and see me about his father who was just diagnosed with melanoma, stage 4/grade 4. He was quite distraught and said his Dad only had months to live. I immediately told him what I've learned from this Board. If you have a doctor giving you a time frame for life, you need a new doctor. And then I went in to print Tex's Acor instructions. I wonder how many similar scenarios are repeated every day by different people at different sites, all having Tex as the common denominator. I love all you guys on this Board, but Tex represents its heart and soul. The time he expends helping others puts him right up there in angel ranks, though I admittedly have had occasion to also refer to him as a vampire with the hours he keeps. Thank you Wedgie.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Clara, I can't thank you enough for your beautifully poetic and touching message which, I have to tell you, reduced me to tears. I think I must now promise to be your Johnsy! I shall take the story with me wherever life now leads me.

Can't stay serious for too long though, so I can't forbear noting that poor old Behrman was over 60, and so he was obviously on borrowed time - amazing to think that people could live to that sort of age!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Clara, Fox, Angie, Alice - this is all getting a bit embarrassing but I suppose I shall just have to be brave and learn to live with the embarrassment [8-)

foxhd's picture
foxhd
Posts: 1935
Joined: Oct 2011

You'll get over it.

angec's picture
angec
Posts: 622
Joined: Mar 2012

LOL you guys are too funny! But we love you anyway!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

As I've aged, I've become kinder to myself, and less critical of myself. I've become my own friend.

I have seen too many dear friends leave this world, too soon; before they understood the great freedom that comes with aging.

Whose business is it, if I choose to read, or play, on the computer, until 4 AM, or sleep until noon? I will dance with myself to those wonderful tunes of the 50, 60 &70's, and if I, at the same time, wish to weep over a lost love, I will.

I will walk the beach, in a swim suit that is stretched over a bulging body, and will dive into the waves, with abandon, if I choose to, despite the pitying glances from the jet set. They, too, will get old.

I know I am sometimes forgetful. But there again, some of life is just as well forgotten. And, I eventually remember the important things.

Sure, over the years, my heart has been broken. How can your heart not break, when you lose a loved one, or when a child suffers, or even when somebody's beloved pet gets hit by a car? But, broken hearts are what give us strength, and understanding, and compassion. A heart never broken, is pristine, and sterile, and will never know the joy of being imperfect.

I am so blessed to have lived long enough to have my hair turning gray, and to have my youthful laughs be forever etched into deep grooves on my face. So many have never laughed, and so many have died before their hair could turn silver.

As you get older, it is easier to be positive. You care less about what other people think. I don't question myself anymore. I've even earned the right to be wrong.

So, to answer the question, I like being old. It has set me free. I like the person I have become. I am not going to live forever, but while I am still here, I will not waste time lamenting what could have been, or worrying about what will be. And I shall eat dessert every single day (if I feel like it).

MAY OUR FRIENDSHIP NEVER COME APART, ESPECIALLY WHEN IT'S STRAIGHT FROM THE HEART!

Anonymous

P.S. Big DITTO on everything already said

foxhd's picture
foxhd
Posts: 1935
Joined: Oct 2011

Those who don't get your point are at a loss. Again, after 35 years in health care, that is my philosophy based on probably thousands of interactions with older individuals. I really expect to die at peace. Pity those who don't. However, that being said,...Party on! Don't miss a minute. Fox loves you! FLY!

I am alive
Posts: 222
Joined: Jul 2012

Clara, how beautifully put. Yes Tex, you are special. Thank you for caring so much about all of us. You are in our prayers. You will breeze through this latest procedure buoyed by the good will you so graciously and continuously dispense to everyone else. I just know you'll be fine. :)

ClaraW
Posts: 64
Joined: Jun 2012

I just read your post re elevated LFT.....I can't hold back my tears....just want you to know I am thinking of you and praying for you during this very difficult time.....

Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

Texas Wedge,

I really don't know what to say... your last post just broke my heart. I sure hope they will figure out something for you, You have been such an inspiration and a plethera of information to everyone.

Big hugs going out your way, and prayers said everyday.

Hang in there!

Djinnie's picture
Djinnie
Posts: 789
Joined: Apr 2013

Hi Tex, 

Unlike the others I have known you just a matter of months. I remember you were the first person to welcome me to this site, with words of encouragement. Over the months I have come to know and appreciate you, and all the advice and guidance that you share so selflessly. Your wealth of knowledge knows no bounds, you are like the key stone. I know first hand that the Scott's come from strong stock, to me you have the attributes of a true Scottish Terrier:-

Bold, confident, extremely intelligent, stoic, thoughtful, friendly, independent and fearless, a determined watchdog, steadfastly loyal, playful, jaunty yet steady and dignified, friendly and lovable, but can be crusty at times! Wink

We all love and appreciate you! You are at the centre of all our thoughts and prayers!

I hope all goes well today!

 

Djinnie xx

 

 

 

 

 

ClaraW
Posts: 64
Joined: Jun 2012

Hoping for a lifeline from your onc today. Fingers crossed.

ClaraW
Posts: 64
Joined: Jun 2012

Tex, just a thought.....I read your SP post and noted that you had dark urine and your ALP was alot higher than your ALT...do you think this suggested biliary obstruction rather than hepatotoxicity? Ie get an US or ERCP...put ..in a stent...and continue with the votrient????

TillieSOK's picture
TillieSOK
Posts: 237
Joined: Jul 2013

I've only known you a short while, also, Tex, but I feel like I've known you forever.  You cut to the chase and do not offer BS and platitudes.  I love that.  You were the first one, I believe, who welcomed me to this board when I was a pile of quivering fear and self pity.  I firmly, do ya hear me?? FIRMLY believe that your liver problem are going to be solvable and you will be back on Votrient shortly!  Heck, tell them to give you Ribiviran!  That stuff gives the liver a better chance to heal itself fast!  My husband was a stage 3b grade 3 on his liver when he started (4 is cirrhosis) Interferopegalated Alpha 2b w/ribiviran (he had HCV) and within 6 months not only was he at zero viral load, but his liver was stone cold normal! Funny thing was, his LF was always, always within normal limits. You WILL get better, because as others have said long before me...you are the heart and soul of this forum. ((((Hugs)))) Hoping to hear some good news in the coming days!

icemantoo's picture
icemantoo
Posts: 1570
Joined: Jan 2010

TW,

 

For the most part I have stayed in my comfort zone and left the difficult subjects to you. If you did not know the answer you would find it. I only handled the easy problems except when I tryed to find a match for GSRon. This board needs at lot more of your solutions rather than my limited experiences. Keep fighting.

 

 

Icemantoo.

ClaraW
Posts: 64
Joined: Jun 2012

Hope your onc appointment today has shed some light...and I hope it is something reversible like cholestasis causing the raise in bilirubin and ALP, not the votrient. Praying for a better outcome. We are all in your corner.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I continue to remember that you painted the last leaf for me Clara.

 

There's no doubt in my mind that if sheer goodwill could cure us, none of us here would ever be ill!  The fund of affection and generous thoughts on the forum is infinite.  Just as we rejoice together at every success, we all feel it when we lose one of our friends to this awful malady.

For that reason, I want to put out a message in this posting, while I remember, and to make the point right now in order to get past the role of the tragedian before I return to my normal optimistic take on life.  So, if (as now seems not unlikely) I leave this scene in the near future, I don't want any friends here who have unfavourable prognoses to make too much of my departure and get unduly depressed at their own prospects. 

Before my Wife and I went to my appointment with my Oncologist yesterday, I played a very enjoyable 3-ball at Carnoustie and golfers will appreciate it when I say 'it never pains on a golf course' - I had a lot less pain (physical, that is - a joke for golfers again!) than if I'd been sitting right here at my PC.  I then dashed home to collect my Wife and drove the further 45 minutes to the appointment, all without excessive discomfort (after taking some liquid morphine, admittedly).   It was therefore a bit surreal to learn just how close to death I probably am.  (For the first time, my Wife broke down a bit as we summed up the discussion and arrived at the bottom line.) 

I recognise that it will be all too easy for anyone knowing of my continuing physical performance levels to conclude 'Well, if it can happen to him at such short notice, what does that mean for me?!' 

Therefore I want to make the following observations.  I'm fitter and stronger than most men but do remember that I'm nearly 71.   That's not so very old these days, but I'm not 30 or 40, or even 50 or 60 and so my life expectancy would be limited accordingly, even if I weren't ill. 

Next, I've never met (and now almost certainly will never meet) any of you good folks.  Consequently none of you has watched my formerly smooth skin, taught over firm muscles, turn into crepe paper draped over bones, my native pallor (when not burnt) turn yellow with jaundice in the past few days and my natural gauntness transform into the sunken cheeks of a survivor of the camps.

Finally, it must be remembered that I have an extremely aggressive pathology.  At dx (in October 2011) I was classified as Stage 4 Grade 4 with predominantly sarcomatoid histology and extensive necrosis, despite the fact that I had no observable mets and all of my other organs were completely clear.  On the most recent research into typical survival with necrotic sarcomatoid chromophobe RCC, my median survival prediction was about ten weeks from the time of my nephrectomy.  I'm thus on a lot of borrowed time, now almost two years on and they've been a very enjoyable couple of years.  I've never suffered from fatigue and for quite a while I felt a real fraud, having almost no pain (I don't feel such a fraud now, after making up a lot of time on the pain front!).

Stage 4, Grade 4 even with no mets was indicative of a dubious future.  With a pathology that moved like greased lightning, I got a recurrence in the renal fossa, close to my spine, within weeks of my nephrectomy but that was cured with a speedy second open op, using  9 inches or so of previous incision.

Cruelly, with the wisdom of hindsight, at that point I was declared NvED since all organs were scanned and found clear.  However, within not many more weeks, an abdominal wall tumor appeared and grew at a phenomenal speed, going from 2.5 cm to 5 cm. in 23 days!  At the same time, a couple of lymph nodes were confirmed as compromised.  Multiple mets, albeit still regional, coupled with their intrusiveness, size and location precluded any further surgical option, leaving systemic treatment as the only medical route and, although there is no known treatment for sarcomatoid chromophobe RCC I was afforded a choice between Sutent and Votrient, within our NHS. That was a no-brainer for me and I started Votrient in November 2011.  I was on it for 7 months, with the 3 month scan showing shrinkage and the 6 month, stability.  

Liver enzymes suddenly sky-rocketed (ALT to 758) and I was off the drug for 6 weeks.  I went back on after liver numbers had become OK again and did well for the first month but figures ran amok once more after about five to six weeks and I stopped taking Votrient on Tuesday past, endorsed as having been sensible by my Onc at Friday's consult.  Unfortunately, the scan on 16th July gave a very diffeent picture from the labs tests numbers.  The ab wall tumor had progressed a little, lymph nodes were unchanged but, out of nowhere, some small lung nodules had appeared and (the real kicker) serious liver mets had appeared.  At consultation after learning of the new sites of mets, my Wife enquired about the feasibility of surgery on the liver lesions but was told that they are too serious and too extensive for any possibility of surgical intervention.

On Monday I was alarmed by suddenly dark urine and with persistence into Tuesday, we decided to take a sample to our Practice and seek comments.  There was no blood, the colour being due to bilirubin.  I had a bloods appointment for Wednesday but it was decided to bring it forward and do it forthwith, which we did. All the numbers are now way out of (normal ranges) with bilirubins 98 (0 - 21) ALT 288 (5 - 55) alkaline phosphatase 725 ( 30 - 130). 

At Friday's consult we were advised that with such material damage, it wouldn't pass protocol to put me on any drug treatment in place of Votrient.  Some detective work is now under way, notably CT with contrast early on Monday morning.

My short point here is that my cancer is exceptionally aggressive and that no-one on the forum, on witnessing my precipitate demise after still being at an apparently fairly high level of physical performance, should extrapolate to their own case and conclude that they might be at death's door.

 

 

 

 

 

ClaraW
Posts: 64
Joined: Jun 2012

I read your post with a heavy heart. My SIL passed away 4 months ago and I had not mentioned it for the same fear that folks here would extrapolate this to their own disposition. You will remain in my and all our heart forever.
Go out and enjoy life T, just like the way you enjoyed the past 71years. I am full of envy! If only I could enjoy life to your sort of age.

Djinnie's picture
Djinnie
Posts: 789
Joined: Apr 2013

From Buddhist teachings  'We are all but small droplets from the same great ocean, we ebb and flow with no beginning and no end' as such you will always be part of us, as we will always be part of you!

 

I hope we have an Indian Summer, so that you can spend many hours playing the game you love and in the place you love so much!

 

Djinnie xx

 

 

Stros2013's picture
Stros2013
Posts: 31
Joined: Aug 2012

TW,

  i appreciate the selfless nature you've taken with your posts.  From my perspective;  education and self empowerment have always rung true in your words.  Certainly compassion has been present but also a dose of unfettered realism and directness that to me is refreshing when so many tell us everything is perfect (regardless if it is).  

this may seem a bit eulogistic...AND in some ways it probably is, but know that for those of us that got here clueless and scared,  you were a constant.

 In a period in my life where I truly had no control;  CSN and your input were a refuge to shelter and educate me.   I became one of a group instead of standing alone to face this disease.  

You, along with a few others, have shepherded me from an emotional state to a place of less emotion and more intellect.  A place where i can maximize my energy in fighting this disease instead of opining about the What If's.  

Regardless of what the next few days, weeks or months bring;  thank you for being a constant and walking with grace throughout.

 

CC

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

I Love You

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

I Love You

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

I don't post that often, but I'm always here reading. I'm amazed by your contributions here and on Smart Patients. I think about you and everyone else here often. This is a wonderful place and you make it that much better. Thank you!

--David

foxhd's picture
foxhd
Posts: 1935
Joined: Oct 2011

ELT. Everybdy is sending Karma. Once a fighter, always a fighter. We don't expect less. No knockout has been delivered yet. I suspect you will throw that big punch and go the distance. Many rounds to go.

Alexandra's picture
Alexandra
Posts: 1227
Joined: Jul 2012

I am poking my nose into the RCC board to join everyone else admiring your contributions and wishing you speedy recovery.

Your posts are always so compassionate, informative and so brilliantly written. As a former ESL student, I keep Merriam-Webster on my desk in order to understand every word.

All jokes aside, you are remarkable.

Love,

Alexandra

N_Woods_Gal
Posts: 13
Joined: Feb 2013

Like Djinnie and Tillie, the 1st response to my initial post back in early Feb was from you. Google had sent me to the "recovering from radical nephrectomy" thread, started in 2009 - I had no idea there was more to the site. Since, I have let moths fly here and am paying for high speed internet! : ) The scope of this site is amazing. I am here reading twice a day, combing through and scribbling notes - so thankful for the effort you have put into keeping us all informed. Please know how much it is appreciated.

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

TW,

You are far too stubborn to stop fighting! I don't post here often but I do get on and still read posts and you are all family. You have brought so much not only to the kidney cancer forum but the entire Cancer Survivors Network, paving the way to improvements. Your tenacity, great sense of humor and knowledge is the glue that keeps this place chugging along. You simply are not allowed to give up. Tongue Out

 

I am alive
Posts: 222
Joined: Jul 2012

Trevor,

   Your body may be failing you, but your mind is as lucid as ever. Reading your post I marvel at the clarity and heft of your thinking, the logical manner you present and flesh out the facts, the dispassionate way you examine your situation. And even in describing your plight you think of us, urging us not to extrapolate a similar fate for ourselves. You've taught us so much these past two years, and now that you are staring down death you are showing us how to do that too. I whole-heatedly agree with everything everyone has said about you on this thread. It is a privilege to know you. I cannot thank you enough for taking the time and making the effort to communicate with us. I love you, T.

ClaraW
Posts: 64
Joined: Jun 2012

It has been one of the greatest privileges in my life to have met you T. I remember reading your first very fine post " greetings from across the pond". Re -iterating what I am alive has said - I love you T!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Clara, I'm so sorry to hear you confirm that you lost your dear SIL, to whom you felt so close.  Your absence of reference to her had led me to fear that was the case.  I'm a firm believer that 'where there's life, there's hope' even when it's somewhat tenuous.  You and I both felt your SIL was a bit too much the fatalist, which may not have helped her.  However, we all die sometime - it's solely a question of how soon. 

You rightly felt that reporting her death would be a downer and I'm anxious to try to mitigate that effect.  I know someone else who struggles with the same dilemma - my dear friend Fox indubitably fears that followers of his inspiring journey will take a nasty jolt when it comes to an end.  He and I, and quite a few others here, had dismal prognoses but few others are as noisy about it as we are!  The take home message when we pop our clogs is how far we ran beyond the expected time-tables.  We're fighters, both, and we'll stay that way to the last, so the message will not be that we all go in the end but that, in the (for me) immortal words of Donna Lee, we really are part of the crew that's changing those numbers!

Thanks everyone for the very kind words.  Nonetheless I'll still keep optimistic and time hasn't yet been called. 

My Practice hasn't been using INR tests (International Normalised Ratio - I can't remember that for long either!) for blood clotting since I've been on Fragmin, so, during the appointment on Friday, my Oncologist had a nurse take another blood sample for INR testing.  So assiduous is the care I'm receiving, that she took the trouble to 'phone later on Friday evening and told my Wife that the clotting test was re-assuring and that I could immediately stop my morning Fragmin injections.  This is good news.  (It's also convenient since the tumor spreading had limited my stomach injections to the other side and I've lately run out of uninjured stomach space and had to switch to injecting into my thigh instead).  

On Monday my next scan will take place [so no golf then :(  ].  The report will take the usual week or so but my Onc will be examining the images on Monday or Tuesday to see whether I have a visible obstruction that can be stented for relief and if so will arrange for an emergency admission to get that done.  

Clara, please remind me what you do that led you to such an astute analysis of my condition.  You characterised the possibilities brilliantly and almost exhaustively.  The remaining detective work is to determine which of the problems and symptoms are due to treatment and which to disease.  At the moment we're trying to determine (a) whether the cause is Votrient  (evidence would be if the symptoms abate now, with cessation of my taking it)  and (b) whether there is biliary obstruction that could be stented and we believe that the scan tomorrow morning will answer that question.  If the symptoms are unaltered by stopping Votrient and there's no mechanical explanation for them either, that would mean a metabolic cause, due to the cancer, and my end will come very soon.

The consequences are fairly clear.  If the cause is Votrient then I can never take it again (that will probably hold even if Votrient isn't the cause, because my ALT had also risen to prohibitive levels, orthogonally to the issue of bilirubin and ALP elevations).  The liver problems may then resolve, with cessation of Votrient, but I'll have been debarred from my one hope for containing the disease - Votrient.  There are no other drugs that could ethically be given to me within our NHS, with my liver problems, but return of liver enzymes to somewhere near normal levels would leave the use of yet-to-be-found treatments less definitely impossible. In Scotland there is only one specialist who does private work and we may consult him to see whether there is anything at all that he thinks he could in good conscience offer us.  If not then palliative measures are all, with a view to maintaining QoL at an acceptable level for as long as possible.

We know that there are no trials in the UK open to me with underlying chromophobe RCC (and probably none anywhere else either for which I wouldn't be disqualified on one ground or another).

If the cause isn't Votrient but a physical blockage, then a stent may solve the immediate liver problems.  In that event, though, for the reasons above, it seems that I still can't go back onto Votrient.  However, one source of pain and other incipient problems would be removed.   Regeneration of my liver would be helpful in my body's attempt to contain the cancering.

If the cause is neither Votrient nor obstructive cholestasis, I face the worst case scenario of cancer-induced cholestasis of a metabolic nature that is irreversible and will be best handled with as many enjoyable rounds of golf as possible in the short space of time remaining for me. Smile

There are an awful lot of pointers to the metabolic cause but my hunch is that it's a case of obstructive cholestasis and that in no time I'll have a stent in place.

Meantime, I've been put back onto a rather longer run of dexamethasone (which my excellent Onc says is a significant piece of her daily weaponry) which will undoubtedly reduce pain significantly and contribute to combating the cancer.  I'm to continue with omeprazole to lessen reflux and will probably take metoclopramide as directed, three times a day, for a while, with a view to reducing or eliminating gastroparesis.  (Thanks, Kathy, for your points about your own experiences made here, or was it on Smart Patients?).

So, no Votrient, no Fragmin, possible discontinuation of omeprazole and metoclopramide before long and temporising use of dexamethasone, but continuing pain meds - morphine slow release and ibuprofen plus liquid morphine for breakthrough pain.  Well - silver linings - I may go back to modest ingestion of green tea at breakfast and you can bet your life I'll be carefully checking on interactions with the new line-up of drugs to see whether I can also add grapefruit juice back into my regular diet!  Breakfast with grapefruit juice and green tea included would be bliss indeed.   Tongue Out

angec's picture
angec
Posts: 622
Joined: Mar 2012

TW, I have sent you a private email, of which you may have already seen. You know that there is another answer and possibilty for you.  Are you Irish? LOL  I will give you a job of figuring out why I ask that question.  I bet you already know why!

 

Anyway, I love you dearly and I for one am not giving up hope! There are way too many games of golf to play!  I await your PM when you are up to it.

 

By the way.. did the dark urine subside as of yet?

XXOO

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Trevor – Find myself in the unusual place of not knowing what to say. You know how very much you mean to me (and to John) and what an important chess piece you have been in our individual fight against this horrible disease.

I agree with the words written by so many here and—at the moment—feel unable to add anything original. So I hope you’ll forgive my role as a copycat and let me simply emphasize the words of Peg, Clare,  Alexandra, etc.  Hopefully, my voice will return a little later and I’ll be able to formulate words of my own. But—for now—know we're holding you close at heart and making you a headliner in our prayers. 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I cannot tell you how this news affects me.  I am genuinely at a loss.

I have respected your thoughts and words deeply. I know you to be knowledgable and sincere. I have wished you well always and will continue! You were among the first to greet me here and I pray that you will be among the last to see me off!

Whatever the Gods have in store for you, or any of us, you have impacted the lives of everyone on this board positively, earnestly, with the best of intentions and well considered advice..

I respect you for that. I treasure our, albeit limited, relationship. 

Michael

garym's picture
garym
Posts: 1651
Joined: Nov 2009

T,

I think you know how I feel, you are my friend, my brother, I will rejoice in your passage and rebirth be it today or 30 years from now.  I thought this appropriate again;

 

A Life That matters;

 

Ready or not, someday it will all come to an end.

 

There will be no more sunrises, minutes, hours, or days.

 

All of the things you’ve collected, whether treasures or baubles, will pass to someone else.

 

Your wealth fame and temporal power will shrivel to irrelevance.  It will not matter what you own or what you are owed.

 

Your grudges, resentments, frustrations and jealousies will finally disappear.  So to, your hopes, ambitions, plans and to-do lists will expire.

 

The wins and losses that once seemed all important will fade away.  In the end, it won’t matter where you came from or on what side of the tracks you lived.

 

It won’t matter whether you were beautiful or brilliant, your gender and skin color will be irrelevant.

 

So, what will matter, how will the value of your days be measured?

 

What will matter is not what you bought, but built; not what you got, but what you gave.

 

What will matter is not your success, but your significance; not what you learned, but what you taught.

 

What will matter is every act of integrity, compassion, or sacrifice, that enriched, empowered, or encouraged others to emulate your example.

 

What will matter is not your competence, but your character.

 

What will matter is not how many people you knew, but how many people will feel a lasting loss when you are gone.

 

What will matter is not your memories, but the memories that live in those who loved you.

 

What will matter is how long you will be remembered, by whom, and for what.

 

Living a life that matters doesn’t happen by accident.  It’s not a matter of circumstance, but a matter of choice.

 

Anonymous

 

To me you are still the very definition of a life that matters and I hate the reason we met with every ounce of my being though I feel so much richer for the experience, what a contradiction.  While we may never meet in this life I expect to see you in the next, words cannot express how much you mean to all of us.

 

Know that you are loved,

 

Gary

 

angec's picture
angec
Posts: 622
Joined: Mar 2012

TW, our buddy, we are waiting to hear from you! I surely miss watching the boards and seeing your name pop up with responses. I am praying that you are getting that stent right now or just playing golf!  Hopefully you are working on a hole in one? ;)

 

Love ya!

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Well Said Rae Rae!

I'll post directly to Texas Wedge, but I loved what you said here!

 

Eims's picture
Eims
Posts: 420
Joined: Feb 2013

Tex,  Rae has said it all really.  Sending lots of positive vibes your way.....I really can't add anything else that others have already said....just know we are all here for you, with you and thinking of you.

eims x

djc2
Posts: 17
Joined: Nov 2011

Dear TW,

Thanks for for telling us not to consider your precipitous decline an example to apply to our own situations. It is your example of endless supoprt, clear light and generous spirit which inspires and serves as an example.  Like so many others here, I have been inspired by that from the outset and will be so always. 

Dean

ClaraW
Posts: 64
Joined: Jun 2012

Not a day goes by without us thinking of you and wishing you well T.

angec's picture
angec
Posts: 622
Joined: Mar 2012

I heard from TW this am.  He is going for testing today for possible stent tomorrow, then off to a round of golf.  He says he might not play well but enjoys himself.  I told him not to blame the jaundice if he doesn't play well!  ;)   He is a trooper our Trevor!

He appreciates all of our love and support and says not to worry if he is absent until Friday or Saturday, he is laying low a bit until then. He's got high priority in my prayers!

 

 

 

ClaraW
Posts: 64
Joined: Jun 2012

Thank you for updating us angec! Sounds like good news to me. Also, hope your mum is doing well!
Love, C

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks, Ange, that's close enough to save me the trouble - just about to go in until Friday, or longer if any adverse event/infection occurs.

Clara's inspired detective work was spot on.  I'm now a brilliant yellow and yesterday's scan shows various issues, the most urgent being the expansion of another lymph node at the junction of the biliary drainage vessels, preventing proper bilirubin drainage.  Clotting check and blood tests this afternoon and they'll give me something corrective if necessary with a view to stenting the biliary blockage on Thursday.  If all goes OK I may well be out home on Friday.  No golf since last week and none in view at the moment :(

Unless there's very bad additional news from the scan yesterday, current  position could be worse (better to have resolvable mechanical blockage than a metabolic cause).

Won't beable to get on here for a few days, so all the best to everyone meantime.

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks, Ange, that's close enough to save me the trouble - just about to go in until Friday, or longer if any adverse event/infection occurs.

Clara's inspired detective work was spot on.  I'm now a brilliant yellow and yesterday's scan shows various issues, the most urgent being the expansion of another lymph node at the junction of the biliary drainage vessels, preventing proper bilirubin drainage.  Clotting check and blood tests this afternoon and they'll give me something corrective if necessary with a view to stenting the biliary blockage on Thursday.  If all goes OK I may well be out home on Friday.  No golf since last week and none in view at the moment :(

Unless there's very bad additional news from the scan yesterday, current  position could be worse (better to have resolvable mechanical blockage than a metabolic cause).

Won't beable to get on here for a few days, so all the best to everyone meantime.

 

GSRon's picture
GSRon
Posts: 1272
Joined: Jan 2013

 

 

Go Wedge Man Go.. Hear from you soon.. Ron

BLKJAK
Posts: 108
Joined: Apr 2013

Not much more to say that hasn't been said already. Mrs. BLKJAK and I will be praying for you and your family. You need to get better. Those golf courses don't play themselves!

Alexandra's picture
Alexandra
Posts: 1227
Joined: Jul 2012

I am keeping my fingers and toes crossed for you.

Love,

Alexandra

angec's picture
angec
Posts: 622
Joined: Mar 2012

I never thought I would say this, but, YEAH for the mechanical blockage!!  That is fixable and gives us more time to see what else we can do to keep you stable.  But no jumping ahead.  One thing at a time.  I am so glad Clara mentioned the blockage!  It really makes me so much more confident that we all pool together here and help each other. 

Cry  Happy tears falling here!  

 

Love you TW... all my best and the prayers and well wishes continue for you, our trooper!

Djinnie's picture
Djinnie
Posts: 789
Joined: Apr 2013

All the best Tex! we will all keep you in our prayers. Looking forward to hearing you are on the mend!

 

Djinnie x

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network