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Decision made

steved
Posts: 835
Joined: Apr 2004

After a lot of soul searching and a meeting today with my colorectal surgeon and oncologist together I have decided that I am going to proceed with surgery (I am 39 and have a pelvic recurrence of a rectal tumour and the only operation that is posibly going to offer a cure is a hemipelvectomy (high amputation of leg) and clearance of all pelvic organs). The surgeon was very clear about the fact they are working on the edge of what has ever been done and it has never been done in the UK, so the risks are significant and some of the complications potentially serious. It is also a huge operation- potentially done over 2-3 days during which I remain anaesthetised with them making decisions about how to proceed during the operation. The outcome is of uncertain mobility (depends on how the reconstruction goes but will have no stump for a prosthesis) and significant disability along with a colostomy, urostomy and no sexual function.

So it was usefully sobering to see the costs and risks laid on the table but it remains the only hope of cure. My oncologist has explored all avenues and does not feel that any other treatments can offer a cure- they will hold the disease but it will ultimately progress. I too have taken seriously ideas around alternative and complementary treatments and realistically feel this is the right decision. It is likely to happen late August and will meet with all the surgeons, the mobility team, aneasthetists etc in advance. I may be in hospital some months and may go to a military site for rehabilitation (as they have more expertise in amputation rehabilitation). We haven't talked to the kids but plan to this weekend (not a conversation I look forward to).

I remain anxious but grateful I have been offered a chance. I have double checked myself that I am not desparately clutching at unrealistic straws of hope and accept the huge cost (not financial- I do love the NHS!) I will pay for the chance and the risk it may not work (mets may pop up elsewhere in time, but they haven't in the 8 years I have had this).

I am so grateful for people's thoughts and support in what has been a hugely difficult decision to make and continue to ask for people's ideas, thoughts, advise and support. This long journey isn't over yet.

steve

PhillieG's picture
PhillieG
Posts: 4889
Joined: May 2005

Glad you made a decision after careful thought.
I hope that the surgeons are on their "A" game that day and that everyone's training and experience comes together for you...
-phil

Coppercent
Posts: 158
Joined: Jan 2012

I am sure coming to a decision has lifted some weight off of your shoulders. You have done the research well and know in your heart this is the right decision. Those decisions are always the best. Good luck with your surgery. My thoughts and prayers are with you when you discuss this with your kids. I just can't imagine having this discussion with my boys. You appear to be a strong person so you will do well. So happy you have been given this chance for a cure.

Lovekitties's picture
Lovekitties
Posts: 3330
Joined: Jan 2010

I am in awe of your courage. I know that this is the most difficult decision, but you did your homework, assessed your team and know the game plan.

When the time comes, if you would consider letting us know how to send cards perhaps we can send a bit of sunshine and humor your way. Also, in case you personally don't have access to the internet from the hospital it would be great to have someone who can either post here or on facebook to let us know how you are doing.

I know we are not first on the list of those you will want to be in touch with, but we would like to stay in contact to offer what support we can.

Prayers that things go better than expected and that you recovery and rehab go well.

Hugs to you and your family,

Marie who loves kitties

steved
Posts: 835
Joined: Apr 2004

Thank you for the early responses. It wasn't an easy decision but I shy away from ideas of courage or bravery. I think we simply all face the challenge in the best way we can- none of us are more brave than others, we simply are each doing our best to survive.

I think this trip to hospital might finally be the excuse I am looking for to invest in an ipad- have coveted one for ages but always felt was a luxury I really don't need. Will allow me to keep in touch as best I can.

May get my wife to post a little too as think she would benefit from the support here and did use this forum years ago. The operation will be at a local hospital which will make her life easier and they have offered to set up accommodation for her for the first week at the hospital.

If I do start posting odd things though- just blame it on the drugs!

steve

danker
Posts: 1191
Joined: Apr 2012

I admire your courage. May all go well for you. My prayers for you.

janderson1964
Posts: 2215
Joined: Oct 2011

What a brave man you are. It sounds like you have looked at this from every possible angle before making such a life changing decision.

I am praying for you every day.

smokeyjoe
Posts: 1428
Joined: Feb 2011

You have such a strong will and spirit, you amaze me how you are approaching this. You are going at this in a way you feel is the right decision for you, no matter how daunting this is. When I read your post my mind automatically went to that young dad I saw out for dinner with his boys, whatever it was that took his leg didn't take his life away with his boys.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Steve, for myself, I'm still chilled to the bone over all of this. You've mustered the courage to go where few would dare travel.

Whatever well that you're drawing your strength from - may it never run dry.

I cannot imagine the thoughts that went into making your decision. I'm glad that you have to a peace and acceptance with the path you've chosen. You've chosen "The Road of Chance" - and that's all that anyone can ask for in this life.

As you alluded to above, it's always wonderful to have a chance...I think you would agree that as a species, humans get crazy when we're cornered and have run out of options. As long as we see the door cracked - we figure we can try and slip through it.

That's Hope - and that one is not false, Steve. It's real.

Anxiety, Apprehension, Trepidation, Fear?

Those are some overwhelming feelings to have to contend with - and I know you have been wrestling with these guys over the past days trying to make some sense of it all.

This is a big deal. From what you've told me, a very big deal. I'm concerned as we all are and all will be. It seems there will be two different arenas for you to navigate....the surgery arena first...and then the recovery arena.

Both of these sound very challenging, but I remain hopeful that your surgical team will be at their tip-top best for these procedures. Since, these are the first to be performed in the U.K. it sounds like you will be making some medical history over there.

As far as I'm concerned, here too...at least on this board.

I just wanted to pass along my best wishes for every aspect of your treatment and care...and the waiting room will be full here when that time comes. We will want to hear all about it, when you feel up to it. Or as Marie said, if someone posted for you in your absence.

So, I tip my hat to you for your bravery, courage, and tenacity in this chapter of your life...somehow Warrior just doesn't cut it....there needs to be a stronger word for what you are doing - for yourself - for your family - and for all of us following you.....

With the deepest respect,

-Craig

Ruffy7
Posts: 126
Joined: Sep 2011

Steve what a tough position to be in - my thoughts and prayers are with you! God bless

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

Keep us posted as to the actual date of surgery. You'll be receiving good vibes and prayers from the heartland of America. Your courage and bravery humble me. I'm considered inoperable at this time, and although I wish I wasn't, I don't have to make the decision like you have. My choice is made for me, but you had to make the hard one, and I'm sure you've made the right one. I lurk more than I post, but you're one of my favorite (or should I say favourite ;-) posters on here with your experience, knowledge, wisdom, courage and wit. Best wishes for conquering this damned disease and enjoying years and decades with your loving family. Dan

flyguide
Posts: 27
Joined: Nov 2010

Amazing courage!! inspirational and very moving...may your surgery go well and recovery be short!!

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

First I'm holding you in my heart as you start out on what will be a very challenging life task. We humans have wonderful brains with which to make logical decisions and sounds like you have worked on this one thoroughly. Kudos to you and your team and your family. I am not you nor am I facing what you are facing now, but I understand the basis on which you are making your decisions. Living in this cancer world often requires us to make decisions that ask us to give up quite a bit in order for us to keep living on this beautiful planet. Sending lots of love and peace for you and your family, and that the surgeon's hands are steady and resolute.

all the best, Leslie

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 507
Joined: May 2012

It sounds like you made a good decision. With a good support system, wife and kids makes these decisions easier. I know you want to see your children grow up, and they don't care if you are missing a leg, they just want dad there. With your great positive attitude you will get through this and be there for your family. You have been such a help to all of us too. Keep us posted on surgery date.
Sandy

deb824
Posts: 21
Joined: May 2012

You are amazing!! I wish you all the best and a speedy recovery. My prayers will be with you on this journey. With all that is on your plate, you still took the time to give me some great advice regarding my bf Bill.
Lots of Love,
Deb

Cathleen Mary
Posts: 827
Joined: May 2011

My heart and prayer are with you and your family. Your love for them must be huge! Reading your post, I felt the conviction that this is the right decision for you. That come from a place of deep strength within you....may that strength grow ever stronger as you face whatever lies ahead. I hope for you good health and many years to share the love that led to this decision.

Cathleen Mary

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jjaj133
Posts: 869
Joined: Mar 2011

Steve, all I can offer is prayers.
God Bless, Judy

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

Best wishes for good results from your surgery and recovery.

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

The name Braveheart comes to my mind. What a brave thing to do to try out every possibility, at whatever cost to your quality of life and to trust your team cmpletely of making the right decissions when they are working on you.
I pray that their hands be guided for a healthier you in the outcome.
My thoughts and prayers are also with your family.
We will be here waiting and praying for a word how things are going with you.
Decission made-------------- now forward.
God speed my friend,
hugs, Marjan

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

I pray for you Steve. I have read your posts and I pray for a healthy outcome.
This was a difficult and brave decision.

My thoughts and prayers are with your family and highly skilled surgical team.
A surgery of this magnitude takes 100% mindset and you are strong and there.

Gospeed as Marian said.

Sincerely, Barb

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Annabelle41415
Posts: 6249
Joined: Feb 2009

Glad you took the time to think this through and you have come to your decision even though this is the most difficult in your life. We are all here to help support you through this next step in your journey. My prayers are with you and your family.

Kim

Luckygirl2
Posts: 308
Joined: Mar 2012

Will be keeping you in thoughts and prayers. Keep us posted and we might enjoy some drug induced postings, could be interesting! :) Sending hugs to you and your family.

omrhill
Posts: 125
Joined: May 2012

Sometimes making the decision is the hardest part. I hope that now you can find some peace and pull strength from that to get through the next few months. Your resolve to live is inspiring. I am pulling for you!
Fondly, Robin

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

l would like to have the same skills as a writer as Craig has but unfortunately I don't , because your decision deservers something more than just the few words that I can dedicate to you in my poor Spanish.
l have been in this forum for 3 years now following day by day all the decisions, discussions ,fears and worries that all the members have and l must tell you yours it's been the most courageous and heroic decision I ever seen here. Just for that I know you are going to have a big success on it. God and all of us will be there with you pushing for that Steve!
You are my inspiration to fight harder if possible against this stupid,pathetic and filthy bug!
God bless you my great friend !

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I hope you have a big weight off your shoulders now that you made your decision. It sure was a tough one, but it makes a lot of sense. I hope you can spend the next several weeks getting as strong as you can to prepare for surgery, and enjoying the summer with your family. You already know you'll have a tough recovery ahead - no surprises like if you ended up in that situation after a car accident. So you have the upper hand, being armed with knowledge, and determination to live and to live cancer free.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

I really am in awe of you strong determination to conquer this crazy cancer. You are really someone I look up to as I go through this journey. Stay strong and healthy myvfriend. I pray everything goes great. Jeff

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Steve,
I will hold you in my prayers as you go forward. Please let your wife know we are indeed here for her as well.

Aloha,
Kathleen

steved
Posts: 835
Joined: Apr 2004

Your kind messages and thoughts mean an enormous amount to me. They help greatly in quelling any doubts I have around teh decision as they come from people who can truly understand and empathise with my situation. So many friends and peopple close to me, while being fabulously supportive, struggle to understand why it was a hard decision (why I woldn't do this) and others why I would accept such huge losses when they can't guarantee success. Your words and support really do help me know this is right for and my family.

In the meantime I am focused on enjoying what time I have in the interim- have tickets to the Olympics (including the final athletics day so hope to see Bolt break new records), will squeeze a weeks holiday in to go to Menorca off the south of Spain (and enjoy some of that sunshine that is so apparent in Pepe's photo) and just enjoy time with my family as school is out for summer next week. It is true that these challenges do focus us on what is important, here and now and to make the most of it.

Will keep posting and participating here and update people on progress. Thank you again for all your support- you are truly wonderful.

steve

Semira's picture
Semira
Posts: 378
Joined: Mar 2012

I wish you a wonderful stay at Menorca full of sun and special moments. And afterwards a successful surgery - may that surgeons have their best day ever.

I'm impressed of your attitude!
Hugs
Petra

relaxoutdoors08
Posts: 520
Joined: May 2011

We are here for you. As you experience the thrill of the Olympics, and the beautiful Sun of Menorca....feel the energy of all of us with you as you prepare for the opportunity to be there with your family for years to come.
NB

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

North Atlantic coast of Spain ,haha just few hundred miles from you in the gulf of Biscay ,the wheather there is as awful as in GB! Hahaha was just a lucky day, if you realize landscape is very similar, Hugs my friend. By the way they even play bagpipe every where there!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

when i think of courage i will think of you.

you are making slow and considered decisions just what my surgeon told me when my saga started 2 years ago.

maybe some broccoli powder, some mcp given effort on the surgical side, a few anti tumour supplements may help to keep you met free.

I will pray for you.

hugs,
pete

lauragb
Posts: 370
Joined: Aug 2011

Steve, I have been following your story and have tried to reply sooner but have had internet connection problems. Anyway, I just want you to know I have been supporting you in spirit as you have been deciding what to do.
Like others have said, it was your decision and I can't imagine having to make it myself. So here's more light to you and just know I'm another person sending thoughts your way.
I am so pleased to hear you have your vacation planned. Here's to many more in your future.
Laura

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

Hi, Steve! I am really proud of you making this decision because I am sure it was a difficult one to make. You sound like you are in a good place and have a lot of love and support. You can do this. You are a hero already. A fighter. What an amazing man you are! Please keep us posted on sugeries, etc. so we can say a lot of prayers - they do help. Much love to you and your family, Steve!

Vicki

charliesangel
Posts: 26
Joined: Dec 2009

Wow Steve, I really do wish you all the best, I have been following your posts as your condition is exactly the same as my fathers... he also has a local recurrence in the sacrum, which is a solitary met, and was discovered 11 years after his initial resection. Can I ask the exact location of your tumour? Is it S1, S2 etc...

Unfortunately we have been searching for a surgeon to remove he tumour, and no one will touch him. I am so happy for you that you have been given this chance:)

steved
Posts: 835
Joined: Apr 2004

Thank you for the message. My tumour recurrence is actually in the lateral pels rather than in the sacrum. IT seems to have spread through the wall of the bowel initially or through lymph nodes into the pelvic area. The main site seems to be on the side of the pelvis in one of the pelvic muslces called the obturator muscle. It is pushing on the sciatic never as it leaves the pelvis to supply sensation to the leg. It is the site of the tumour that has meant the normal operation of a pelvic exenteration (just clearing everything in the pelvis out but leaving the legs) won't work as they will have to cut teh nerve supplying the leg and probably teh arteries that run along with it.

Sacral mets are a bit different and as I'm sure you know the level and site is very important in deciding if surgery is possible. I know little more about it or who does surgery for it. The Rob Pololock blog is the only one I have found for it- are his surgeons worth approaching? I also know that from a distance the Mayop is talked about over here as being the more radical surgical centre for these ops- they have done a few of the ops I am in line for but have never published outcomes (in fact a surgeon I saw here who worked previously at the May did say his experience was of poor outcomes and hence he doesn't recommend the op I am having- very sobering to hear!). Perhaps the Mayo is worth exploring?

Sorry to not be of more use- our situations have lot in common but ulitmately the potential ops are different- your father needs a sacrectomy rather tham hemipelvectomy but you do need to listen to the surgeons even if what they are saying is not what you want to hear.

I wish you the best of luck and if you want more info do feel free to PM me.

steve

charliesangel
Posts: 26
Joined: Dec 2009

Hi Steve,

Oh my goodness, I can't even image what kind of pain you are having to deal with having a tumour in the sciatic nerve, I sincerely wish you all the best and hope your surgery is a real success... Can I ask, did you have radiotherapy?? Also, how long have you been dealing with this recurrence for?

I do apologize, I guess I'm so obsessed with my fathers sacral recurrence, I just assume that everyone who has a recurrent rectal met has it in the sacrum. What a simpleton I am!!

We live in Australia, so having to find surgeons in the USA and then travel all that way, my father has great difficulty walking now, and relies on a walking stick as his sacral nerves are damaged and he has foot drop etc. We have travelled to Malaysia for Cyberknife twice now, which has really helped with the pain, and has kept things at bay, however his CEA is rising and we may have to travel back for one last lot... You are absolutely correct about the level and site of the sacral tumours, his is in the S2 which only a few very talented surgeons would try and tackle, and he also at one point had L5 involvement, which no surgeon would touch (this has been taken care of with Cyberknife, however we have been told that this excludes him permanantely from ever having surgery).

Anyway's, please keep us all updated with your journey, you have a lot of us rooting for you!!!

Caroline
x

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Steve

reading your post, i was thinking... wow, could I make that same decision if faced with it?
not sure...

but, the more i thought and began to pray for your, your family and for the conversation with your kids... i felt Lifted Up by you.

then, i took some time to read the follow up posts from everyone on this board... wow!
you have inspired us all.

Keep your head up and stay laser focused like you are and feel the strength from your friends here at the CSN board.

everyone here has so many great words to share... read them over and over from here to surgery day.

you are in our prayers and we're all pulling for you.
keep us posted as we get closer to surgery.
we're all with you!

Joe

janie1
Posts: 753
Joined: Apr 2011

I am at a loss for words. I am so glad you share and care on this forum.
We are here for support but it seems like so little in the scope of things.
One thing i know, is that you are something special and so is your family.
Wishing you all the best.

druidshadow's picture
druidshadow
Posts: 85
Joined: Feb 2012

blessings and prayers with you

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I'm glad your decision has been made, I cannot fathom being faced with the same choices, the difficult part is now behind you.
I'm so happy that you have the surgery available to you to give you the opportunity to continue on in this ever so challenging yet rewarding life.
I trust that your surgeons are capable, steady of hand, and will do you well!!!
You will be in our thoughts.
And Steve, get that IPad, it will help wile away waiting times, and as I told myself when I purchased mine, "what the heck,you deserve it!"
Sitting here in the peanut gallery, rooting you on,
Winter Marie

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Steve, thanks for sharing the direction you are taking with your life....
Big hugs across the pond******
Tommycat

YoungerSis62's picture
YoungerSis62
Posts: 28
Joined: Jul 2012

Hard decision, only decision? Sometimes the toughest decision is the only decision. You have chosen to fight, to continue, to hope. I pray for you to have a successful outcome, to have strength, and to have faith.

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

What a tough decision to make. I know it must have been difficult to consider such a surgery but I am very happy for you that you are working towards a cure. You are such a brave man. Holding you in the Light for a successful surgery and the strength for rehabilitation afterwards.
~Aud

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

what a very hard decision. thoughts and prayers for strength.
judy

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Sonia32
Posts: 1078
Joined: Mar 2009

Big hugs Steve, you'll get through this I know it.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Praying it goes very well!

*hugs*
Gail

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