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Date and plan

steved
Posts: 836
Joined: Apr 2004

Back from meeting with a roomful of surgeons, oncologist and various hangers on and finally have a plan for surgery. For those that don't know I had rectal cancer in 2004 with recurrence last year. After various treatments was told there was no curative options and moved onto a palliative regime. Then a new publication of radical surgery was published and the local team thought I might be a candidate. It is clearance of all pelvic organs and a hemipelvectomy-taking off half the pelvis and leg. Have spent the last month or so being rescanned and fighting beaurocracy and now have a plan.

Will be admitted on the 17th and operated on the next day. A surgeon from Denmark is coming in for four days as no one in this country has done the op so he will mentor them. It will start with looking at para aortic nodes which if involved marks the end, but if not they will proceed over a number of days keeping me asleep. I will be in. Itu for some weeks and hospital for 2-3 months. Mobility will be by wheelchair or crutches for first six months but might have a chance at a prosthesis after that.

I feel ready and now want things to start. I accept it is a huge cost but it is my only chance at a long term cure (yes I am using that word on this board). They can't quantify how likely that is but it is a real chance but so is considerable morbidity and complications. At present my leg is getting sorer and weaker quite quickly and I am already on quite high dose morphine. I still work full timeout my quality of life is dismissing and will only continue to do so without something radical.

So that is the plan. It is as definite as it can be (I'll only truly believe it is going to happen when I am on the table) and feel it is the right decision. I am of course also terrified but mixed with hope that feels tolerable for now.

I welcome your thoughts and supports,
Steve

maglets's picture
maglets
Posts: 2404
Joined: Jun 2006

pretty much overwhelmed here.....I believe in my heart that you have made a good decision....i am just not so sure that this board has ever seen such major surgery. I am responding quickly ....will probably cogitate....

let me just say right off the top I salute your decision..and your bravery....
this is of course a possible cure for you......what could be better???

life with your kids can go on
sending only best love and support

mags

steved
Posts: 836
Joined: Apr 2004

Thanks Mags for the thoughts and message- thought I'd let you kow my Canadian mum who lives in NZ is booking her flight along with my brother to come over to bere for a first couple of weeks after surgery. Will be a multinational gathering here in Exeter.

steve

Jaylo969
Posts: 826
Joined: Jan 2010

My thoughts are that you are one of the bravest people I know of. Certainly you have my support, healing thoughts, well wishes, and great hope for you. We will all be thinking of you and your family as you make this endeavor towards cure.

Please keep us updated if at all possible? I don't post a lot but I do keep up with you all.I have especially been rewarded by reading all of your posts. I appreciate you level-headed demeanor.

Wishing all the best for you!

-Pat

Brenda Bricco's picture
Brenda Bricco
Posts: 550
Joined: Aug 2011

Hi Steve, I am glad you have a plan sand some dates, the in between can be the hardest.
Please don't be afraid to use the word "cure" because sometimes that is where people find themselves. I am praying for many cures for many people these days.
Keep us posted!
GOD bless you.
Brenda

ron50's picture
ron50
Posts: 1281
Joined: Nov 2001

I see no other course of action. I am just sorry that it has taken so much time to get thru the red tape. Good luck you have my best wishes for a good result and sppedy recovery,Ron.

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Momof2plusteentwins
Posts: 446
Joined: May 2012

I love reading your posts, such a reasonable level headed person. I wish for a successful surgery and a uneventful recovery. I know now that the date has been set you are just ready for it to happen. You are such a strong person I believe you will get through this and be walking with the prosthesis with your family. Please keep us up to date as you can, I know so many people care for you. Good luck.
Sandy :)

Annabelle41415's picture
Annabelle41415
Posts: 4244
Joined: Feb 2009

The surgery sounds so very complicated but know that you have been working with the doctors for some months. Now that the date is set, just getting it done is understandable. Wish that there was some way that we can find out how things went and how you are doing since it will be some time before you will be able to let us know yourself. My thoughts and prayers are with you and your team of doctors and assistants. Just know that while you are recouperating, I'll be waiting for that first post from you after surgery letting us know how you are.

Kim

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Lovekitties
Posts: 2934
Joined: Jan 2010

I am glad that you and the doctors have been able to set a date.

I pray that God guides these surgeons hands to provide the best possible outcome, and that His angles watch over you and provide you healing warmth afterwards.

Always know that there are lots of us around the world who are sending our best wishes and vibes as you embark on this historic surgery.

Hugs and love to you and your family,

Marie who loves kitties

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jr2012
Posts: 67
Joined: Aug 2012

Hey Steve,

I donno what to say, I am overwhelmed by your courage and grit.

I need to also tell you to google 'macrobiotic diet', 'vitamin c' and 'ozone therapy' in case you have not done so already.

I love how you say long term cure on this board :)

I think I recently read in one of your posts that you drink alcohol everyday - if that was you, then have just one request - if you can please give up alcohol as it is one thing that all anticancer diet forbid along with sugar...

I just learned yesterday of a fakir guy in Mumbai who saves cancer patients - once in remission I plan to go to him Godwilling and if it works, then I will refer him here ... apparently everyone who went to him has come out of the worst cancer. In India, relapse is rare. Everyone that I know seems to have managed a permanent cure. I know some who did ayurveda and yoga and diet change to keep cancer at bay without chemo radiation. And now knowing of this fakir made me curious and also hopeful that I can share this with everyone who can get a chance to get back to normalcy again.

I will be saying my prayers for you and keeping my fingers crossed for you that whatever happens, you survive this beast and pass with flying colors. Will be Waiting for update.

Best wishes to you & your family
& Hugs

steved
Posts: 836
Joined: Apr 2004

To all above- thank yo uso much for the positive thoughts, prayers and mesages. They all mean a huge amount and will look forward to returning and posting (hopefully good) progress post op.

steve

As for giving up alcohol and sugar- surely I'm allowed a glass of red wine and bit of dark chocolate if I make it through giving up a leg- think of all those antioxidants! All respect, but I'm afraid it will take a bit more than a measly cancer to get me to give those away.

Calluna
Posts: 7
Joined: Jan 2012

Lots and lots of mojo and good wishes from London. I've followed your posts for a while and I really hope your convictions are rewarded. I can't fathom the enormity of this decision and I'm blown away by your grace and determination. I'd send virtual hugs, but you're British, and I... have a British passport, so that's probably terribly inappropriate ;)

steved
Posts: 836
Joined: Apr 2004

Thanks for the message and as a new zealander in the uk I accept your hugs happily.

Steve

tanstaafl's picture
tanstaafl
Posts: 963
Joined: Oct 2010

Steve,
We're all rooting for you, Steve. Pretty much everyone here, conventional or otherwise, knows the curative powers of surgery.

The surgeons may fear futility from prior dissemination on a para-aortic lymph node and then multiple wound sites but one might argue if CEA burden is under, say 20 or 50 from different papers, that an accessible, isolated PALN site might still be worth removal, along with the other major sites planned. Especially with enhanced nutrition and immune function beyond "standard".

My wife went to surgery with her immune system revved on vit D3 and cimetidine; vitamin C and K2 replete in the mega sense, among other things. Even celecoxib (originated by the surgeons), and UFT up to 24 hr before. I was cheered when our surgeons elected to use the high dose oral cimetidine (like 800mg per 6 hr = 3200mg/d) to prevent gastric acid aspiration instead of the more common proton pump inhibitors.

We faced down a lot of naysayers on surgery for the PALN cluster in April, 2011. Without removal of the major PALN cluster and adding the extras, I'm sure my wife would already be a casualty from dessemination. Her CEA continues to trend down when on full immunochemo, last night to 2.1. We have to move this year and she's preparing for construction even if another surgery or two may be needed.

Often "impossible" becomes possible, one careful step at a time.

steved
Posts: 836
Joined: Apr 2004

I will mention the cimetidine idea when I meet with anaesthtists next week. I don't think I would go for a PALN removal and suggest they do the rest of the surgery if they find spread there as in truth if I have a high chance of spread to liver/ lungs (as I would if there is spread to PALN) then I don't think this surgery would be worth the risks. I am only going for it (and being offered it ) because of the strange pattern I have of having had this cancer over a decade with no signs of spread beyond the pelvis- something genetic about is probably means it isn't a 'spreader'. If there is signs of spread all the risk-benefit ideas around the surgery change.

steve

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tommycat
Posts: 790
Joined: Aug 2011

Yes, one chapter of your life is closing while another is opening. This new chapter will be a fresh start, minus the pain which can become so wearisome.
I'm rooting for you Steve!
When you're being wheeled into surgery, take a moment to remember all the people who are pulling for you and close your eyes with that thought---and open them to a better quality of life with your family.
Huge hugs from California~
Tommycat

steved
Posts: 836
Joined: Apr 2004

Thanks for the message- it is indeed how me and my wife are thinking about this- the end of a phase in my life and the start of something new. It helps to think of it as a new challenge on a clean slate rather than one to add on top of what I now have.

steve

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YoVita
Posts: 541
Joined: Mar 2010

for a cure for you. Stay strong and steady.

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annalexandria
Posts: 2225
Joined: Oct 2011

but I would do the same, given that it's the best shot to be here to watch your kids grow up. As a parent, I'd do just about anything to stick around a little longer, to be there for a few more milestones. And while this is a tremendous sacrifice, I think it may very well give you the chance to be here for many more milestones in the lives of your children, and the value of that is incalculable. You'll be in my thoughts as you face this new stage of the journey. Sending strength your way~Ann Alexandria

So Worried
Posts: 111
Joined: Aug 2012

I am amazed how brave you are! I'm so excited for you to have this opportunity and I also love the fact that you used the word "cure". I wish you all the best from the bottom of my heart. I will go to church (I live right down the road) on Sept. 17th and light a candle and say a prayer for you. I marked it on my calendar.
You are in my thoughts, and I am hoping for a super great outcome!

steved
Posts: 836
Joined: Apr 2004

Thanks for the messge. I do think it is the kids that are driving me to do this. I do wonder what my decision would be if I was not a parent. They have been fabuous in the way they have adapted to the idea of my disability and really show me that as long as we accept the changes this will bring and don't fight them, then we can get through it. It is always humbling when a five year old can teach you a thing or two about coping with disability!

steve

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devotion10
Posts: 642
Joined: Jan 2010

in the coming weeks, the days of your surgery, and everyday afterward until you come back on the site to give us a thumbs up. I understand both your fear and your hope. You are bravely choosing life and a potential long term cure. You sound determined and ready to precede with your plan. It seems that there is a reason that everything had fallen into place for you. We are all in your corner. Please tell your wife that if at any time she needs support as a caregiver to come here. We will all want to help her and we will be anxious to know how you are. Have courage Steve.

Sincerely,

Cynthia

steved
Posts: 836
Joined: Apr 2004

I will pass on your wishes to my wife who did use to use this site years ago. I may get her to post updates but don't want to give her more tasks when just holding life together will be enough of a challenge. knowing of all your support will undoubtably help though.

Thanks for your thoughts,
steve

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PhillieG
Posts: 4667
Joined: May 2005

You've done a lot of research on this and I know it's not a decision that you've come to easily nor one to be taken lightly.
I wish you GREAT success and I truly admire your positive attitude and intestinal fortitude.
I'll certainly be sending positive thoughts your way...
-phil

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steveandnat
Posts: 887
Joined: Sep 2011

Steve praying your plan is a huge success!! I'm so glad you have such a good group surrounding you. Please keep us updated. Jeff

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herdizziness
Posts: 3398
Joined: Apr 2010

I might even step in a church and say a prayer for you. Whether you believe us or not you show great courage of spirit. You have nothing but my best wishes being sent your way as you go forward into this new challenge of life. We'll all be there with you in spirit!
Winter Marie

steved
Posts: 836
Joined: Apr 2004

Will happily accept your thoughts, prayers or what ever positive vibes come my way.

Thanks for the messages
steve

Patteee's picture
Patteee
Posts: 948
Joined: Jul 2009

My wishes and prayers for a safe procedure and a new beginning for you and your family. You have far more courage than I do Steve. I do feel as though it is your gold ring and the chance that it might, just might be the path to a cure, well, then ok. :)

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

and the schedule. I too will be saying a prayer for you on the 18th. You impress the hell out of me and I admire your spirit of "let's get this show on the road," attitude. I always try and read your posts when I can because I usually learn something. Just know that you are very much appreciated. Best wishes and I look forward to hearing from you when you're able to post...postsurgery. Dan

taraHK
Posts: 1961
Joined: Aug 2003

I imagine it's a huge relief to have a firm plan and dates in place. And of course it is still frightening. I am glad you will be in the hands of the best experts available.

I will be thinking of you and sending prayers your way.

Tara

scareddaughter24
Posts: 62
Joined: Nov 2011

I am sending thoughts, prayers, well wishes, good luck, good spirits, positive thinking and all other things that i know will help you get through this
You are awesome
You can do it
Love that you used the work cure!!!
You go for it!!!
xx

steved
Posts: 836
Joined: Apr 2004

Tara you are right that there is a huge sense of relief to have this possibility given to me and now become a reality. I just want it now to happen so I can get on with dealing with what ever challenges arise from it,

steve

lauragb
Posts: 368
Joined: Aug 2011

Light, love, prayers, vibes and all to you and your family as you work for your cure. You are so brave to take such a path, and focused and pragmatic. This fall is for your healing.

Laura

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

What an amazing person you are! Last night I prayed for you, your family and your surgeons! I believe in the power of prayer! Your amazing attitude is going to pull you through this and by all means say the word cured! Say it over and over and over again. It is the hope and believe in a cure that pulls people through. Be positive and fight the good fight. You got this, Steve!

Big hug!

Vicki

Cathleen Mary
Posts: 563
Joined: May 2011

Good gracious....you who are so incredible, so articulate, so compassionate...will now be a pioneer in cancer treatment!! Your courage, fortitude, and strength are amazing and an inspiration. No doubt these will be hard months ahead for your wife and children as well. Know that all of you will be in my heart and prayer. It sure sounds like you have done your homework. The love of your family that compels this decision will help you every inch of the way. I am filled with hope that a new and bright future awaits you.

Hugs and prayers,
Cathleen Mary

steved
Posts: 836
Joined: Apr 2004

for the prayers and thoughts- they all are gratefully received. I do believe that attitude is half the battle and whilst I am less of a believer that it changes outcomes, it certainly changes how you live in the present.

steve

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Sundanceh
Posts: 4284
Joined: Jun 2009

Worried and concerned for you - but hopeful for a terrific outcome:)

The very best of luck!

-Craig

Coppercent
Posts: 142
Joined: Jan 2012

Steve you are strong and you will do well. I have always admired your strenght and knowledge on this board.

Keep the red wine and chocolate. You deserve it and everything in moderation is just fine, heck over do it a few times too. Maybe one day we will learn that red wine and chocolate is an alternative medicine for cancer. :0)

Sending prayers and strength to you and your family. Can't wait to get the update that you are doing well and this procedure was a great success.

jjaj133's picture
jjaj133
Posts: 857
Joined: Mar 2011

Steve, I am so in awe of your, bravery and spirit.
I will being praying for you, your family and the doctors.
God Bless you, judy

smokeyjoe
Posts: 1428
Joined: Feb 2011

Steve, WOW, reading this is overwhelming. My brain starts to spin thinking there has got to be another way!! I saw a news story about a little girl who had all her internal organs done in one transplant and she is thriving. You are so very brave, I'm in awe of you with your level head. Cure sounds great.....keeping you in my thoughts and prayers for the best outcome possible.

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Maxiecat
Posts: 524
Joined: Jul 2012

Wow Steve...it sounds like an aggressive but solid plan. You will of course be in my thoughts and prayers throughout your preparation for surgery, the actual surgery, and your long recovery in hospital. You are so strong...you will get through this. Andi don't mind the word cure...it is something that we all hope for someday.

Alex

janie1
Posts: 753
Joined: Apr 2011

A new beginning and a chance for a cure has me tearing up fast. I think you get to a point of no-turning back and then the motivation for doing this kicks into overdrive. Thoughts of your family move you forward. Praying for excellent results. Will be lighting a candle for you, too. Will be looking forward to updates when possible. Hugs to your entire family.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

U can be sure that you already are in my prayers, I'm sure it's gonna be a big success and next summer u will be able to have ur prothesis and will be enjoying the mediterranean again but rather than Minorca it will be an honour to have you here, you are invited to My home! .
Sending you my best vibes .
Keep us informed my friend.

steved
Posts: 836
Joined: Apr 2004

BE careful what you offer as it may come true- always feel a pang of jealousy when I read of you heading to the beach for your weekends!

Thanks so much for the support- it genuinely means a lot,
steve

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pepebcn
Posts: 6352
Joined: Aug 2010

Always welcomed!

LivinginNH's picture
LivinginNH
Posts: 1293
Joined: Apr 2010

Steve,

It's truly difficult to put into words how I felt after reading your post. I am simply in awe of the courage and tenacity that you, and so many others, display in this fight. This is going to a long journey for you, but your determination and strength of spirit will get you through the hurdles.

I pray that this operation will be successful so that you may enjoy many more wonderful years with your family.

All my best,

Cynthia

steved
Posts: 836
Joined: Apr 2004

I am sure it isn't just me but I always find talk of courage, bravery etc difficult lables to accept. We are all here fighting this illness and we all tend to do and accept the challenges that we face as part of that. I sruggle to equate that to any sense of bravery- I really feel I am simply accepting what I have to do, as anyone in my position would. Would I be less brave if I declined this operation?

I hugely apprecaite all the support and positive thoughts that people have contributed and it genuinely does help me face this. I am interested in others ideas around how people attach such words to people fighting cancer. Are we brave because we are fighting cancer? Are some of us more brave than others? Does fighting and beating caner make some one more brave than another who lost their battle? I have often seen these words used at funerals and in eulogies to people who have lost their fight and it may be that, that is the source of my discomfort with the terms.

Sorry, got distracted by an irrelevant rant that simply makes me seem ungrateful for all the support people are offering :) but do others feel that way at times?

Anywau, thank you so much, ****hia and all the others above for your kind words of support. It does make me feel like I am facing this challenge with huge support behind me which helps enormously.

steve

Sundanceh's picture
Sundanceh
Posts: 4284
Joined: Jun 2009

Steve, I appreciate having you around here. You’ve raised several interesting questions that have some meat left on the bone. So, if you don’t mind, I’d like to weigh in with a few thoughts on your topic of “Word Association” with regards to the cancer fight.

“Are we brave because we are fighting cancer?”

The easy answer is Yes, but I’ve always held the belief that Courage, Strength and Bravery comes from us doing the things that we have to do – even though we don’t want to do it.

That’s always been the way of things in life and cancer represents a different obstacle to the many challenges that besets each one of us everyday in what often times seems like a random happening of events that tend to comprise our individual journeys.

I realize you are running your latest gauntlet for the love of your children – that is your motivation. I think partly too, because you still see a shot at cure – and that shot equals Hope – and that makes this worth going for. I've heard you echo that sentiment.

If this were me, I’d be lacking the incentive that you have to make this decision. I got a small taste of the love of a child with my grand niece recently. It was all too short and I tried to use your story to put myself in your place and imagine and weigh the things that you must have been thinking.

But, it’s completely different…

She’s my niece and only 3. And your children are just that – your children. So, if I were making that decision today, as much as I see potential, she’s still too young too really know who I am and as such, I could not find the motivation there for myself to attempt what you are going to do.

It’s just one of the hardest stories and decisions I’ve been privileged to follow here on this board. I guess, I’d have to be able to convince myself that Me would be worth the fight, because when it was all said and done, there would be no physical resources who would align with me when it was over. I’m not sure how my wife would handle this if we found ourselves there - she might run for cover, I just don't know.

I think for me, I'd wake up in the aftermath of it all and just wonder...

So, Bravery, Courage, Strength is what you do have to go through with all of this…there could be many of us, myself included, who might not be able to make the decision to follow through as you have. I’ve done a few things in my fight, but the magnitude of this encompasses anything that I’ve had to deal with.

I just don’t know what I would do – but I know what you are doing for your family and yourself - and it is absolute courageous that you are fighting cancer in this way. I have no doubt that you will be teaching us a thing or two.

As for the general population, I still think it is brave to stand up to – and fight cancer. The alternative would be to cower down and not fight it. I have seen real-life people do this and while I support everyone’s individual right to fight or not, it still is upsetting to not try.

“Are some of us more brave than others?”

The answers here lie shrouded in ambiguity. Again, Yes, some of us are braver, because some of us fight, and other choose not to. As I alluded to, I’ve seen a couple of folks in real-life clinics and hospitals that I frequented put a stamp on it and mail it in, right from the start. They simply did not have what it took to go the long mile. They went through the motions, but lacked the necessary conviction to stay with it, which is so essential.

And we could also say that you are braver than we are, because you are stepping up for this tremendous undertaking while we sit and watch and do not have to endure it. Would we be braver if the situation confronted us?

Hard to say, because none of us know what really lies beneath our own inner core, until that core is exposed to the elements and we are faced with that proposition and must take a decisive action – one way or the other.

How would we handle it?

As always, according to each other’s unique gifts that we possess.

I’ve found that Bravery itself comes in many flavors – anything that is difficult and arduous to overcome in life takes many characters to deal with the task at hand….Courage, Bravery, Strength, Perseverance, Fortitude, Tenacity, Conviction…and of course, Integrity…just to name a few of the players.

“Does fighting and beating cancer make someone more brave than another who lost their battle?”

The answer here is a definitive NO.

“Losing” the battle does not equate to the lack of bravery in any individual’s fight. All of us are brave for doing what we think must be done to give ourselves the chance to be. Bravery knows neither Life nor Death – he only knows what beats inside his chest and what courses through his veins.

I’ve come to think of Bravery as the adrenaline, which serves as the catalyst, to put us into motion to do that, which me must do – at the time that we need to do it.

The fine line that separates the Two Worlds of Cancer is the ultimate dichotomy – the underlying message that is the foundation of cancer itself is simply….that some of us are going to make it – and some of us are not.

I think that message resonates with life as much as it pertains to cancer. After all, cancer represents only a chapter of our lives – what came before – and what we hope will come after.

If we look back at any horrific, catastrophic event in human history – some of us will walk away, while others will not. Whether it is natural disasters, global war, vehicle accidents, or sickness…

Still you have to be brave to face any of life’s challenges, or you’ll be swallowed whole. In its most simplistic terms, perhaps that may just be the definition of what Bravery represents.

I really appreciate your story, Steve. It haunts me, if I’m being completely honest. Our stories are in stark contrast to one another in the manner that cancer has worked us. Getting clear for as many years as you did – and then to recur…

I’ll never forget that post…I’m still feeling the shockwaves, because I think that through others, we can catch a glimpse of ourselves – and see a possible future that we just don’t want to imagine.

Your story still tells me that no matter how many years you get clear, NED should be a 4-letter word and should only be used in hushed tones…it lends the illusion of false hope, as your story prior to this, would have indicated a major success at going over 5-years clear….the gold standard marker that all of us are striving for.

But, the message you delivered was clear…never relax – don’t take your guard down – and don’t assume anything.

It’s a sobering message, but the good ones always are. You’ve showed me that the concerns and apprehensions with regards to cancer, will last me My Lifetime. I wanted to take this opportunity to say “Thank You’ for that message.

I read you loud and clear:)

Nice talking to you, Steve. I’m glad to see the wheels spinning inside your head. Good, thought provoking stuff today. I needed that.

-Craig

steved
Posts: 836
Joined: Apr 2004

Thanks for your comments Craig. I do think it is interesting to reflect on what drives us in this journey and what differentiates the various decisions we make. I remain uncomfortable with the emphasis on bravery as a driver as feel most of our decisions are simply made out of necessity. We each face potentially crippling treatments with various degrees of stoicism but most people far those decisions and get through them. I am not sure it takes more bravery to have a treatment than to refuse it (especially if refusal is against medical advise). Some of the most difficult decisions I have seen people make here have been about deciding not to have treatment. I don't think it is there fore the right word to use in describing much of what we do- it feels inaccurate to say my decision to have surgery is more brave than if I had decided against it and so faced a more challenging trajectory of gradual decline towards death.
Hence, I see most of what we do as simply humans striving to survive as best we can. Yes, some howl and scream more than others who quietly face their fate; some drop into depression or struggle with overwhelming anxiety; some use total denial to get them through the day- I would not feel than any of this represents more or less bravery, simply humans facing that struggle in different ways.
I feel most comfortable to leave talk of bravery to people who risk their lives to save others and simply see what we do as self preservation in the face of a life threatening illness. The word runs the risk of dilution to meaninglessness if we attach it to people just trying to stay alive.

Steve

Sundanceh's picture
Sundanceh
Posts: 4284
Joined: Jun 2009

I lost this reply yesterday, because the CSN pipeline choked and it went away...so here is a shortened version...

I'm going to just talk about the last paragraph:

"I feel most comfortable to leave talk of bravery to people who risk their lives to save others and simply see what we do as self preservation in the face of a life threatening illness"

Sometimes one can get lost in the forest and not see the entire landscape...so from my perch, this is what I see from you...

You are "risking" your life to save others...and here's how...

First, you are having a specialist come over for Denmark to oversee the surgery and train the surgeon and his staff on a very complext procedure - that was not available before you presented your facility your case; otherwise the Denmark surgeon would not be making the trip.

Second, the old guard from Denmark, will now teach the new guard in the U.K. And then this will be passed down to future generations of surgeons, who will benefit from having the ability to perform this procedure for future U.K. patients, who might find themselves facing the same or similar situation that you are.

So, by your very own definition, Steve...you are risking your life - to save others.

I'll just say Thank You to you and Tara for showing all of us the way it's done.

:)

-Craig

taraHK
Posts: 1961
Joined: Aug 2003

Agree with you, Steve, about the courage/bravery issue. I often find myself bristling a little bit when people tell me how brave, strong, amazing, courageous, etc. I am. I feel like saying -- what's the alternative?? I feel like I just put one foot in front of the other. There are some days I say to myself - all I need is the courage to step across the threshhold of the hospital doors -- after that, I hand it over to my medical team (well, not really -- I'm a very hands-on patient and I'm sure I drive the nurses crazy -- but you know what I mean!). I don't feel like a 'role model' for anyone else. But, people find inspiration from all sorts of sources. I find inspiration from a young friend who is fighting addiction -- I think she has amazing strength and courage. If she finds inspiration from my 'battle', that's more than fine with me.

Tara

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