Things your Surgeon may not tell you

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Comments

  • stckdg
    stckdg Member Posts: 1
    #22
    Texas_wedge said:

    Welcome sunlover
    Tell us more about yourself, your diagnosis, any details you know about the tumour, operation etc - if you care to (there's no necessity to do so) and maybe we can give you some well focused advice that might help. You're through the tough part already and it will all get easier from now (aside from the eternal problem of waiting for more information).

    How did you manage to post, today, among the messages of 22nd March - I'm just guessing it was that old black magic of iceman in his tux!? - can't fight that kind of magnetism. But, you'll be more visible if you post at the end of the thread. Ask all the questions you want and you'll get help from the great crowd here.

    questions I am looking for answers to
    G'day all. I recently have entered into a serious relationship with a man who had his right Kidney, removed due to cancer, in August 2011. For the most part he is doing brilliant. The couple of growth on his lungs (migratory Kidney cancer off shouts)are actually shrinking with the medication he is trialling. All good news as far as the surgery and his prognosis of many more years ahead of him.

    My questions, being new to all of this, are in regards to diet and ... hmmm, how do I ask this? R has reflux and gas after nearly everything he puts in his mouth. He is still bloated from the surgery, and I am not sure what or how to help him with this next step.

    R is working out regularly, plays squash, weights, water skis ... and lives a very physically active life.

    Where do I find information on how to get 'things' calmed down in there?

    Thank you before hand. I have been on so many sites looking for help without getting any.
    Stckdg
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #23
    stckdg said:

    questions I am looking for answers to
    G'day all. I recently have entered into a serious relationship with a man who had his right Kidney, removed due to cancer, in August 2011. For the most part he is doing brilliant. The couple of growth on his lungs (migratory Kidney cancer off shouts)are actually shrinking with the medication he is trialling. All good news as far as the surgery and his prognosis of many more years ahead of him.

    My questions, being new to all of this, are in regards to diet and ... hmmm, how do I ask this? R has reflux and gas after nearly everything he puts in his mouth. He is still bloated from the surgery, and I am not sure what or how to help him with this next step.

    R is working out regularly, plays squash, weights, water skis ... and lives a very physically active life.

    Where do I find information on how to get 'things' calmed down in there?

    Thank you before hand. I have been on so many sites looking for help without getting any.
    Stckdg

    questions
    stckdg, Oz isn't short of experts in nutrition and dietetics is it? If R is so physically active then the problem would seem to be either medical or dietetic. He shouldn't still be bloated at this stage. What do his doctors say about it? If he's fine on that front, why not talk to a dietitian and explore possible food intolerances?

    At worst, it's not too dire a situation, all things considered and given what he's gone through and will probably clear up spontaneously as he continues to return to normal - it takes months to fully get back to one's own version of 'normal'.

    By the way, how did you come to post at this odd place in the thread instead of at the end?
  • starfari
    starfari Member Posts: 17
    #24
    j_rod said:

    Ooooh...I so misunderstood
    I guess I just remember you saying you had yours done 'back in the day' and I assumed it was open. I guess what you had done back in the day was a radical because they weren't doing partials? My mistake....so sorry.

    It's been 6 months since my
    It's been 6 months since my open full nephrectomy and a few months since I last posted. I am back to work back to biking 10+ miles daily and no better regarding discomfort and swelling. I have been taking Gabapenten to help reduce nerve damage and it has helped in some ways ( no more excruciating spasms of unbearable pain) The abdominal binder is a daily thing and without it I surely would have gone mad from the constant pressure and discomfort from my side. At risk for sounding like a whiny big baby I have to say this is NOT what I bargained for I am more comfortable in this dis-formed and problematic body left behind after surgery but I continue to feel as if I have been compromised in an irreversible way. Thank you for the moment given to me to whine and vent. It could always be worse and I am thankful for every day I wake and breath. Many people..good people have not been so lucky. Today I'm a little teary and emotional about my health tomorrow I will be less so...onward and forward in this life.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #25
    starfari said:

    It's been 6 months since my
    It's been 6 months since my open full nephrectomy and a few months since I last posted. I am back to work back to biking 10+ miles daily and no better regarding discomfort and swelling. I have been taking Gabapenten to help reduce nerve damage and it has helped in some ways ( no more excruciating spasms of unbearable pain) The abdominal binder is a daily thing and without it I surely would have gone mad from the constant pressure and discomfort from my side. At risk for sounding like a whiny big baby I have to say this is NOT what I bargained for I am more comfortable in this dis-formed and problematic body left behind after surgery but I continue to feel as if I have been compromised in an irreversible way. Thank you for the moment given to me to whine and vent. It could always be worse and I am thankful for every day I wake and breath. Many people..good people have not been so lucky. Today I'm a little teary and emotional about my health tomorrow I will be less so...onward and forward in this life.

    starfari, you've used the crucial word - 'tomorrow'. You have a tomorrow and doubtless many, many more to follow that one. Better still, as time passes you'll keep feeling better (and chase your GP if you don't!).

    You've been unlucky. We both had open nephrectomies at the same time and I have a scar like yours, except it's horizontal, not diagonal. I had an immediate 'recurrence' in the renal bed and they opened me up again on the same cut, so I've got a bit more inflammation and a little fluid retention but no real discomfort and only very slight change of shape. We're different genders and I'm 10 years older but maybe the main divergence is in the difference in the cut and the tissues affected? (Just a wild guess.) I know you lead a healthy lifestyle and work to keep in shape, so just stick at it. That, coupled with the odd vent here and the passage of time is bound to see you feeling more like your old self. As iceman tirelessly tells all newcomers, it's major surgery and takes a long while for some of us to come back from.

    Patience is difficult sometimes but keep up the good work and pursue it with your doctors if you really feel your recovery has plateaued.
  • DDBurkhardt
    DDBurkhardt Member Posts: 13
    #26
    Neen said:

    pain
    I have felt much of these "pains" I had my surgery 6 weeks ago and I was told I would be back to work @ 4 weeks from my surgeon. I to am very swollen and the nerve pain gets quite unbearable. I had pneumonia after my surgery and think I may have herniated a little I have a round hard spot about the size of a 50 cent piece right above my incision, they wont do anything for a few more weeks because nobody will do another surgery on me right know because of the major surgery and the pneumonia that followed and I only get Tylenol for the pain as well. It is frustrating and depressing when all you want to do is get better. Does that abdomen belt thing work?

    I feel the same
    I had my surgery 3 weeks ago and while I feel better, I'm still in pain at the incision area. I developed pneumonia in the hospital and coughed so hard that I too feel like I could have give myself a hernia. My doctor told me a week after surgery that otc medicine should work and I shouldn't need pain meds. I thought he was crazy. How can you recuperate when you're always in some type of pain. If I stand too long, the left side of my back hurts terribly. I feel like it's going to be at least another 3 weeks or longer before I feel normal. It's so nice to have this network so you can see that you're not alone or crazy. I was wondering how you're doing now? Are you back to your old self?

    Deb
  • starfari
    starfari Member Posts: 17
    #27
    Texas_wedge said:

    starfari, you've used the crucial word - 'tomorrow'. You have a tomorrow and doubtless many, many more to follow that one. Better still, as time passes you'll keep feeling better (and chase your GP if you don't!).

    You've been unlucky. We both had open nephrectomies at the same time and I have a scar like yours, except it's horizontal, not diagonal. I had an immediate 'recurrence' in the renal bed and they opened me up again on the same cut, so I've got a bit more inflammation and a little fluid retention but no real discomfort and only very slight change of shape. We're different genders and I'm 10 years older but maybe the main divergence is in the difference in the cut and the tissues affected? (Just a wild guess.) I know you lead a healthy lifestyle and work to keep in shape, so just stick at it. That, coupled with the odd vent here and the passage of time is bound to see you feeling more like your old self. As iceman tirelessly tells all newcomers, it's major surgery and takes a long while for some of us to come back from.

    Patience is difficult sometimes but keep up the good work and pursue it with your doctors if you really feel your recovery has plateaued.

    Thanks Texas....I am
    Thanks Texas....I am impatient and want it all to be in my past..I have high expectations for my recovery I guess. I'm off to the GP next week to talk to him about my expectations .He will most likely say the same as the supportive people on this site!
  • rae_rae
    rae_rae Member Posts: 300 Member
    #28
    starfari said:

    Thanks Texas....I am
    Thanks Texas....I am impatient and want it all to be in my past..I have high expectations for my recovery I guess. I'm off to the GP next week to talk to him about my expectations .He will most likely say the same as the supportive people on this site!

    20 months
    Starfari- it's been 20 months since my surgery and i still have pain -for some of us it hasn't been an easy recovery. I posted to you before that my one year mark was a big turning point. I still have upper abdominal pain, numbness and the odd nerve pain (like glass shards along my scar). A year ago my life seemed centered around my pain. Now it's more of an annoyance. I hope your Gp can help, but know it does slowly get better in time.
  • littledarlin
    littledarlin Member Posts: 102
    #29
    rae_rae said:

    20 months
    Starfari- it's been 20 months since my surgery and i still have pain -for some of us it hasn't been an easy recovery. I posted to you before that my one year mark was a big turning point. I still have upper abdominal pain, numbness and the odd nerve pain (like glass shards along my scar). A year ago my life seemed centered around my pain. Now it's more of an annoyance. I hope your Gp can help, but know it does slowly get better in time.

    Starfari & rae_rae Thanks for the updates...
    Thanks so much for the list and for the updates on how you are progressing after surgery. I am almost 3 months post opt now..and have not progressed a quickly as I would have liked to I just hate the distended abdomem and the tiring so quickly.. I am also struggleing with getting back to my normal. Actually I am not sure what my normal will be now..Plus we are addressing high blood pressure and a thickening of my heart on the left side, left ventrical. We are trying to avoid failure of my heart as the Doc put it and possible kidney failure from the diuretic I am now taking..So for me that are many factors that have come to light since my surgery..They do seem worst now..It does get me down some days so I guess I just wanted to vent about it too..Wishing you both a speedy recovery..

    Littledarlin..
  • Bubbs21
    Bubbs21 Member Posts: 47
    #30
    Great Topic
    I am impatiently awaiting confirmation of diagnosis and next steps. However, I was quite grateful to find this thread today. I remember when I had my hysterectomy, I found a similar discussion board, where my hystersisters, shared many of the experiences and tricks to recovery that most doctors do not discuss. It was a great way to build community and find solutions.

    So for my female friends who have had Csections and radical hysterectomy, how does the nephrenectomy compare? Of course I am older and the seriousness of the surgery is greater, but I am thinking they both involved the abdomen and many layers of muscle. Insights are appreciated.

    Keep the wisdom coming :)
  • rae_rae
    rae_rae Member Posts: 300 Member
    #31
    Bubbs21 said:

    Great Topic
    I am impatiently awaiting confirmation of diagnosis and next steps. However, I was quite grateful to find this thread today. I remember when I had my hysterectomy, I found a similar discussion board, where my hystersisters, shared many of the experiences and tricks to recovery that most doctors do not discuss. It was a great way to build community and find solutions.

    So for my female friends who have had Csections and radical hysterectomy, how does the nephrenectomy compare? Of course I am older and the seriousness of the surgery is greater, but I am thinking they both involved the abdomen and many layers of muscle. Insights are appreciated.

    Keep the wisdom coming :)

    Bubbs
    Sorry you have had to join the "club". I had a hysterectomy 11 months prior to my radical nephrectomy. My hysterectomy was a vertical cut up to my navel. For me, it was a Cakewalk compared to the nephrectomy. More fatigue, more pain, longer recovery...and for me, more complications. Its different for everyone ...but I think you will find this a little tougher. All in all, you will recover...just pace yourself and be prepared. I had asked my surgeon what I should to to prepare....he said exercise! He was right...the better shape you are in, the easier the recovery. There are many useful tips in previous threads to help the recovery process as well. And we will encourage you all.the way!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #32
    rae_rae said:

    Bubbs
    Sorry you have had to join the "club". I had a hysterectomy 11 months prior to my radical nephrectomy. My hysterectomy was a vertical cut up to my navel. For me, it was a Cakewalk compared to the nephrectomy. More fatigue, more pain, longer recovery...and for me, more complications. Its different for everyone ...but I think you will find this a little tougher. All in all, you will recover...just pace yourself and be prepared. I had asked my surgeon what I should to to prepare....he said exercise! He was right...the better shape you are in, the easier the recovery. There are many useful tips in previous threads to help the recovery process as well. And we will encourage you all.the way!

    Exercise and cancer
    That was good advice you got Rae and exercise has a crucial role in preventing cancer, in preparing for surgery, in the early stages of recovery and in staying healthy afterwards - in short it should be part of lifestyle whether you've got cancer or not.

    A new study on exercise and cancer is this

    http://www.cancernetwork.com/breast-cancer/content/article/10165/2069862

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