Update on slow progress

steved
steved Member Posts: 834

Am six months post hemipelvectomy and pelvic clearance for my recurrence of rectal cancer and so thought I would update progress. I have my first prosthetic following a stay in a specialist unit in London and am finding it less cumbersome and clumsy than I thought. It is still slower than crutches and I still use sticks on it but hope to get down to one stick so can once again carry something as I walk. Am returning to work slowly and am just over half time which is tiring as I am wearing the leg at work (and not really anywhere else due to being more mobile on crutches). Am exercising again in the gym and exploring football played on crutches which looks great. I still have moderate pain in the wound and phantom pain (painful sensations in the leg they removed- wierd and unpleasant but you get used to it in time) as well as some problems with a small section of wound not healing.

I did have my CT and bloods this week which remain clear (CEA 1.3) so remain NED but know it is early days (after last times recurrence at 7 years clear). So life is slowly returing to a new normality with the kids getting used to how things are now and me finding adapted ways to do most of what I have always done. I currently think it was the right decision (was predicted to not last out this year without the op) but only time will tell. In truth I have less pain and am more functional than I was before the op even though only have one leg so really have little to gripe about. I have many here to thank in supporting me in making what was the hardest decision of my life.

One of these days I will post a picture when CSN is working a bit faster (uploading very slowly at present).

Will be popping a cork to celebrate my ned tonight- join me round the world in a toast,

steve

 

 

 

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Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Thanks for the update Steve. 

    Thanks for the update Steve.  I often wonder how you've been doing, but don't want to pry.   So glad to hear you are NED and hope it continues! 

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Heartiest Congrats to You, Steve!

    Thanks for showing us all how it's done!

    Glad things are going well for you, despite all of the challenges you have faced.  I'm sure your clients are glad to have you back.  It sure sounds like you made the best decision all the way around and I wish you continued luck with your recovery - and your re-entry back into society's fold:)

     

  • devotion10
    devotion10 Member Posts: 623
    Yes .... I will most certainly lift a celebratory toast to you

    and your family.  I always appreciate your calm and wise counsel here on the board and your courageous spirit is inspiring Steve.  That decision is now behind you and your healing journey is underway.  Best to you now and in the future. -- Cynthia

     

    If you want to enjoy the rainbow, be prepared to endure the storm.

  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 508
    Steve
    I am so glad things are going well for you. I know how hard the decision was but glad it has been so positive and the right decision. I have thought about you and happy that you posted an update. Im sure just looking at your wife and children you know it makes it all worth it.
    Sandy :)
  • steved
    steved Member Posts: 834
    Sundanceh said:

    Heartiest Congrats to You, Steve!

    Thanks for showing us all how it's done!

    Glad things are going well for you, despite all of the challenges you have faced.  I'm sure your clients are glad to have you back.  It sure sounds like you made the best decision all the way around and I wish you continued luck with your recovery - and your re-entry back into society's fold:)

     

    Jen favoritey

    Thanks for the rapid responses you two. Amazing howtherapeutic a bit of dull old work routine is!

    Steve

  • steved
    steved Member Posts: 834

    Steve
    I am so glad things are going well for you. I know how hard the decision was but glad it has been so positive and the right decision. I have thought about you and happy that you posted an update. Im sure just looking at your wife and children you know it makes it all worth it.
    Sandy :)

    Cynthia and Sandy

    Thanks for both of your kind words. The kids have been a great grounding force throughout, never letting me mope about for long before being dragged off for a game a football, one leg or two.

    Steve

  • annalexandria
    annalexandria Member Posts: 2,571
    You are quite amazing.

    It's hard to fathom what you've gone through, and the choices you have had to make.  The fact that you are back at work and thinking about football only 6 months post-amputation is incredible.  You deseve to get a cure out of this, that's all I can say.  Oh...and enjoy that drink!  AA

  • Maxiecat
    Maxiecat Member Posts: 544
    You sound like you are doing

    You sound like you are doing great!  I can't even begin to imagine everything you have been through in the last few months.  You are an inspiration to us all.  njoy that beverage this evening!

    alex

  • steved
    steved Member Posts: 834
    Maxiecat said:

    You sound like you are doing

    You sound like you are doing great!  I can't even begin to imagine everything you have been through in the last few months.  You are an inspiration to us all.  njoy that beverage this evening!

    alex

    Anna and Alex

    Thanks for the replies. Strangely the bottle of prosecco seems thave empty. Time to raid the good stuff, cheers,

    Steve

  • Trubrit
    Trubrit Member Posts: 5,626 Member
    Raises glass of the 'good stuff'

    It sounds like you have had a long, hard journey.  I'm sorry about the leg, that has to be quite the experience. But alas, a leg for a life. I think you made the right decision.

    I will raise my glass to your NED, and pray that you continue to heal and take life by the hand and walk with it. 

    Blessings!

  • ron50
    ron50 Member Posts: 1,723
    steved said:

    Anna and Alex

    Thanks for the replies. Strangely the bottle of prosecco seems thave empty. Time to raid the good stuff, cheers,

    Steve

    Good luck
    With the continuing recovery mate. You do what you have to ,to beat ca and you have gone well beyond the norm.. Best wishes Ron.
  • Cathleen Mary
    Cathleen Mary Member Posts: 827
    Trubrit said:

    Raises glass of the 'good stuff'

    It sounds like you have had a long, hard journey.  I'm sorry about the leg, that has to be quite the experience. But alas, a leg for a life. I think you made the right decision.

    I will raise my glass to your NED, and pray that you continue to heal and take life by the hand and walk with it. 

    Blessings!

    A toast will be raised in Boston!

     

    Thanks so much for sharing this news.  You and your family are such an inspiration.  I cannot begin to imagine what you have been through but your story brings courage and hope. Football???!!!! How amazing!  

    Incredible what the human spirit does out of love.

    Continued health and joy,

    Cathleen Mary

  • janderson1964
    janderson1964 Member Posts: 2,215
    You are simply amazing Steve.

    You are simply amazing Steve. I sais befor that you are a hero of mine. I know you beliefs arent the same as mine but you are in my thoughts and prayers.

  • AnnLouise
    AnnLouise Member Posts: 276
    Congrats on NED.......

    Toasting to you and the inspiration you are to all of us....cheers from Chicago....~ Ann

  • maglets
    maglets Member Posts: 2,576
    dearest doc Steve

    how very lovely to hear of your long amazingly difficult claw back....you have gone places that none of us have....I salute your bravery my friend....so happy to hear that you are working with new available tools....

    oh Steve...your life must be changed so very much....I salute you

    please hold my hand for Monday Steve when I start testing again....

    hug...your friend....mags

  • thxmiker
    thxmiker Member Posts: 1,278
    Cheers!

    Cheers to you Steve, from theMountains in Arizona!

     

    NED is very good news.   We are always glad to hear good news.   

     

     Best Always, mike

  • herdizziness
    herdizziness Member Posts: 3,624
    Steve

    Steve, you still continue to amaze me.  What human fortitude you have, and the glass always half full, raising a glass in toast to you and your recovery.

    All the best my friend.

    Winter Marie

  • Chelsea71
    Chelsea71 Member Posts: 1,169
    Hi Steve Pleased to see this
    Hi Steve

    Pleased to see this update. Have been wondering about your progress. Have noticed that you've been posting a little more frequently the past few weeks. Was worried that this was a bad sign. Clearly that is not the case.

    I thought of you when my husband (Steve) was hospitalized several weeks ago with a severe spontaneous hematoma affecting his entire right leg. He couldn't walk for several weeks. There was some concern about permanent nerve damage. Required physiotherapy to get walking again. It was quite the ordeal. He's fine now. It was a really difficult time for him. Not being able to walk combined with being on chemo and having issues with his ileostomy etc.... It wasn't fun for either of us. I'm not comparing a hematoma to hemipelvectomy but it did give me an inkling of a taste as to what you and your wife must have been going through in the weeks and
    months after your surgery.

    Having that surgery was a gutsy move. I'm glad that it's worked out for you. Its great that you're getting on with life and enjoying your family.

    Chelsea
  • steved
    steved Member Posts: 834
    maglets said:

    dearest doc Steve

    how very lovely to hear of your long amazingly difficult claw back....you have gone places that none of us have....I salute your bravery my friend....so happy to hear that you are working with new available tools....

    oh Steve...your life must be changed so very much....I salute you

    please hold my hand for Monday Steve when I start testing again....

    hug...your friend....mags

    Mags and all above

    Thank you for you kind words. It has been a hard journey buti think imañana ways no harder than many here travel. Will keep tcrib vibes positive for Your tests mags- keep busy and distracted and try to not let your thoughts go too many dark places,

    Steve

  • steved
    steved Member Posts: 834
    Chelsea71 said:

    Hi Steve Pleased to see this
    Hi Steve

    Pleased to see this update. Have been wondering about your progress. Have noticed that you've been posting a little more frequently the past few weeks. Was worried that this was a bad sign. Clearly that is not the case.

    I thought of you when my husband (Steve) was hospitalized several weeks ago with a severe spontaneous hematoma affecting his entire right leg. He couldn't walk for several weeks. There was some concern about permanent nerve damage. Required physiotherapy to get walking again. It was quite the ordeal. He's fine now. It was a really difficult time for him. Not being able to walk combined with being on chemo and having issues with his ileostomy etc.... It wasn't fun for either of us. I'm not comparing a hematoma to hemipelvectomy but it did give me an inkling of a taste as to what you and your wife must have been going through in the weeks and
    months after your surgery.

    Having that surgery was a gutsy move. I'm glad that it's worked out for you. Its great that you're getting on with life and enjoying your family.

    Chelsea

    Thank you

    Thanks to all that have shared the toast- hope some internationally qualitydrink was enjoyed. Chelsea yes it a strange extra thing tothrow into anyone'srecovery, to have to almost relearn to walk. I was very pleased when we decided there was little value in me doing more chemo in that Phase as adding that into the mix would have it soharder harder. Pleasedyo hear your Steve is back up and running.

    Steve