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Update on slow progress

steved
Posts: 836
Joined: Apr 2004

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

 

 

 

jen2012
Posts: 1186
Joined: Aug 2012

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's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

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:)

 

steved
Posts: 836
Joined: Apr 2004

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

Steve

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

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
Posts: 437
Joined: May 2012

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
Posts: 836
Joined: Apr 2004

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's picture
annalexandria
Posts: 2183
Joined: Oct 2011

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's picture
Maxiecat
Posts: 524
Joined: Jul 2012

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
Posts: 836
Joined: Apr 2004

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

Steve

ron50's picture
ron50
Posts: 1266
Joined: Nov 2001

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.

Trubrit's picture
Trubrit
Posts: 1327
Joined: Jan 2013

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!

Cathleen Mary
Posts: 528
Joined: May 2011

 

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

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

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

janderson1964
Posts: 1531
Joined: Oct 2011

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.

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

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

steved
Posts: 836
Joined: Apr 2004

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

thxmiker's picture
thxmiker
Posts: 1201
Joined: Oct 2010

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's picture
herdizziness
Posts: 3389
Joined: Apr 2010

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
Posts: 1168
Joined: Sep 2012

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
Posts: 836
Joined: Apr 2004

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

mukamom's picture
mukamom
Posts: 357
Joined: Oct 2010

that you are progressing so well.  NED  *\0/*.  I missed the celebratory drink last night, so I raise my coffee cup instead!

 

Keep on keeping on!

 

Angela

annalexandria's picture
annalexandria
Posts: 2183
Joined: Oct 2011

as oddly enough it's frowned upon at the Little League fields (can't imagine why).  But as it's Friday now, I will be toasting you tonight, Steve!  I hope a whiskey sour counts in place of the champagne.

Hugs...possible slightly sloshy ones given a few hours~ AA

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

you have given us a complete update and it is amazing all the things you are doing.i remember when you had your procedure we were all worried here.you have come a long way in a short time.just keep on living life....Godbless...johnnybegood

Luckygirl2
Posts: 308
Joined: Mar 2012

I am still in such awe of your bravery, you and your family.  A toast to you from Arkansas!

 

Debbie

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

here is a toast to you: may cancer never return!!!   congrats on being ned!

hugs

judy

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

Btw are you going to the champions finals? I'm seriously thinking to go if Barça gets classified , ( would like Barça vs Real Madrid ,jajaja).
Hugs my friend!

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

Read your update with such heartfelt admiration and so happy you are NED.

I had a surprise brain tumor and have had two NED MRI 's.
Battling with liver tumors and theraspheres is next.
Just hoping I get to enjoy spring.

Anyways, this is about you and your courage. Enjoy football and the new season!

You are such an inspiration.
Continued healing and wishing you the best!
Barb

Aud's picture
Aud
Posts: 476
Joined: Oct 2009

Congratulations, Steve.  I always thought you were so brave in your decision to have the hemipelvectomy.  Glad to hear that you are doing well.

Here's to continued NED and your continued success in rehab.  Cheers!!

Kathleen808's picture
Kathleen808
Posts: 2278
Joined: Jan 2009

Steve,

Of course I am lifing a glass for you and you being NED!!!  I love it!!!  You are an amazing man.  I know you will keep on keeping on.

Aloha,

Kathleen

tanstaafl's picture
tanstaafl
Posts: 945
Joined: Oct 2010

Steve, congratulations on your progress.  Thanks for keeping us in mind and letting us know.

steved
Posts: 836
Joined: Apr 2004

Thanks to all that have posted above. Been away a couple of days so not replied to as many as would have liked. Your support has been immense and critical throughout these six months. I am sure I will wax and wane in my us elf the board over coming months as I hope other aspects of life take back over but be assured will always lurk and contribute as able. Recovery is a funny thing that for me has always meant living to the fullest despithaving cancer and at times it has meant leaving the board behind. However, after this last year and the value I have felt in being part of this family I know I will probably never leave fully,

Thanks again,

Steve

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

currently NED, less pain, more functional ..... wonderful steps to a better life for you and your family.  Cheers!

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