Decision made

steved
steved Member Posts: 834
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
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Comments

  • PhillieG
    PhillieG Member Posts: 4,866
    Steve
    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
    Coppercent Member Posts: 158
    I am sure coming to a
    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
    Lovekitties Member Posts: 3,364 Member
    Dear Steve
    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
  • janderson1964
    janderson1964 Member Posts: 2,215
    What a brave man you are. It
    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.
  • steved
    steved Member Posts: 834

    Dear Steve
    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

    Thanks
    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
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    "A Tip of the Hat"
    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
  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    What a brave man you are. It
    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.

    You have such a strong will
    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.
  • Ruffy7
    Ruffy7 Member Posts: 126
    Sundanceh said:

    "A Tip of the Hat"
    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

    Steve what a tough position
    Steve what a tough position to be in - my thoughts and prayers are with you! God bless
  • JayhawkDan
    JayhawkDan Member Posts: 205
    Sundanceh said:

    "A Tip of the Hat"
    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

    Godspeed, Steve
    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
    flyguide Member Posts: 27
    brave
    Amazing courage!! inspirational and very moving...may your surgery go well and recovery be short!!
  • lesvanb
    lesvanb Member Posts: 905
    Oh Steve, a complex and difficult decision
    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
    Momof2plusteentwins Member Posts: 508
    lesvanb said:

    Oh Steve, a complex and difficult decision
    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

    Steve
    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
    deb824 Member Posts: 21

    Steve
    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

    Steve
    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
    Cathleen Mary Member Posts: 827
    deb824 said:

    Steve
    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

    Steve

    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
  • danker
    danker Member Posts: 1,276
    steved said:

    Thanks
    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

    Steved
    I admire your courage. May all go well for you. My prayers for you.
  • jjaj133
    jjaj133 Member Posts: 867
    Steve, all I can offer is
    Steve, all I can offer is prayers.
    God Bless, Judy
  • YoVita
    YoVita Member Posts: 590
    Decision made - now onward
    Best wishes for good results from your surgery and recovery.
  • thingy45
    thingy45 Member Posts: 632
    YoVita said:

    Decision made - now onward
    Best wishes for good results from your surgery and recovery.

    Braveheart
    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
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Surgery
    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
  • barbebarb
    barbebarb Member Posts: 464
    thingy45 said:

    Braveheart
    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

    Thoughts are with you
    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