New Member Struggling a bit....

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Comments

  • dhs1963
    dhs1963 Member Posts: 513

    Thank you. That makes me feel

    Thank you. That makes me feel a bit better. I guess thats it ..the shock I suppose. I am not actually depressed I dont think just amazed at my crap luck. And, a bit shocked guess the depression will kick in :) I do feel determined and a bit angry if im honest!

    Do you know what really makes me mad...at the begining of this six weeks ago I paid to go private to get a faster app with a Urologist. I walked in the door armed with husband and two grown up kids and his first words to me where 'dont worry this will not kill you' now i am not daft I have seen cancer. I paid for all the scans myself to get them faster and my tumour was 6 cm not the original 5cm that 'was not going to kill me' ... Then after surgery the two surgeons came to see me and assured me that they got it all blah blah and that they felt my pathology was mearly a formality. The the pathology that was all of a sudden the stage 3a .. I mean do they fill you with all this false hope. It is just pointless and no wonder you end up pissed off with them. I am not even trying to sound negative here it is the truth of what I have been told and it makes me angry. Why dont they just say nothing until they know something! Anyways...I guess I am at the anger stage Laughing

    I have cut out red meat i need to cut out fizzy drinks aka soda but I find i dont fancy them now. I dont seem to fancy sweets either .. i just need to hunt for something good and natural to sweeten my coffee. I am in the UK...Do you have the web address where you but raw stevia? Thanks.

    Michelle x

    duplicate...sorry

    nt

  • LynninNC
    LynninNC Member Posts: 16
    Candidate for clinical study?

    I am a new member, previously just lurking. This is my first post.....I never felt that I had anything to contribute before now!   I had an open nephrectomy in October 2012, left kidney. 9 cm, invasion into fat and tissue but no venal involvement. T3a with 5% sarcomatoid differentiation. My surgeon suggested I might be a good candidate for a clinical trial. I am 51, and have enjoyed good health until this surprise. I have been involved in a Pazopanib double blind placebo study at Duke since December. I am pretty sure that I am on the active ingredient but have tolerated it well.  There are 2 tiny spots on my right lung they are watching and the first CT post surgery showed pleural nodular thickening. An April scan showed no changes. So far so good.  I am wondering if you might be a candidate for a trial Michelle? It makes me feel more in control that I am doing something rather than waiting for my next scan. It might be helping me, but more importantly it is helping fight this cancer long term. Perhaps you should talk to your doctor about it? There are several studies going on testing pazopanib/votrient and everolimus. Both are approved for treatment for mets but they are seeing if the treatment can be preventing the start of mets.     Meanwhile, keep moving forward slowly and take control of what you can. Diet and exercise and attitude make alll the difference.

  • izzycohen
    izzycohen Member Posts: 80
    Your August 8 post.

    Michelle,

    Your situation is nearly identical to mine.  6 cm tumor on left kidney.  Adrenal gland and lymph nodes clear.  They did take two lymph nodes.  I also had the same situation with the cancer creeping up on to renal vein.  No chemo or radiation treatment.  I will have a CT scan and chest x-ray at the two month date.  the next scan is tentatively scheduled for 3 months later.  At this writing I am 11 days post surgery.

    I'm 10 years older than you.  For what that's worth.  A customer of mine, in Detroit, went through this 4 years ago.  Similar size tumor, etc.  He is doing very well and living a normal life.  He has given me some moral support through my ordeal.

    One day at a time.  Keep putting one foot in front of the other.  We will get past this.

     

    Good luck.

     

    Izzy

    Wheaton, IL

  • izzycohen
    izzycohen Member Posts: 80
    Hope you're improving

    Michelle,

    It's about two weeks since your initial post.  I'm going through some of the same issues and wondering how you're coping. 

    thinking of you.

     

    good luck.

     

    Izzy.

  • Miashelle1
    Miashelle1 Member Posts: 44
    izzycohen said:

    Hope you're improving

    Michelle,

    It's about two weeks since your initial post.  I'm going through some of the same issues and wondering how you're coping. 

    thinking of you.

     

    good luck.

     

    Izzy.

    Hi Izzy
    Thanks for asking :) I am ok I guess....saw my doctor today and my next scan is at the beginning of December. I asked my prognosis and he honestly answered that time will tell. As I have a history of anxiety which was under control until this he chatted to me kindly and told me to go and live my life, enjoy myself and simply be me .. He said I must try and keep my anxiety under control which was in a way quite comical when I was hyper ventilating all over him lol. But I know his advice is good for me. It is just hard to process everything. This has changed everything in my eyes I am finding it hard to be positive. I can only see the negative at the moment. I feel very defeated at the moment sort of broken. I am trying to smile and be upbeat and some days it is working:) I have returned to work for a few hours a week which is helping. I am a fossil preperator and have a small shop on the beach here in Dorset where I live.....it is beautiful and I am luckier than most in where I live and what I do for a living. I just like to have a plan and I feel now my plans are uncertain .. Which they are. So I have to work on adjusting to my new normal. As for my recovery....I'm not to bad. I am walking upright now as I found I was bending to one side also, I have less swelling. I still have a weird shape but I'm not vain I can live with that. I'm not so bothered with the look of my tummy if I'm honest. I look after my self and I am clean and tidy so if someone thinks I am odd because I am an odd shape anywhere I don't really care :) I still have had no contact from two people I thought I was good friends with but I find I care less as the days go on..the people I have around me care for me and love me and my husband and children protect me and love me without question. They always have as they are all I have. I lost my parents and brother some years ago hence the anxiety issues. I feel very loved and cared for ... In fact as I type I realise more just how lucky I am. My children's friends love me and pop in and see me at work all the time. I drive around this small island on the south coast of the Uk and people wave at me and smile. I have a son who is 29 who would kill for me and a daughter of 22 who has recently done things for me that no daughter should have to and I feel humbled. And grateful and again very loved. My husband works hard does not complain about my eccentricities and my frittering of his wages on handbags :) And here I am writing all this private stuff on a public forum for complete strangers to read and I don't care. It doesn't matter does it when you are faced with stuff like this. It is 2 am here in the Uk and I must get some sleep as I am working at Miday tomorrow :) love to you all.....Michelle xxx
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Hi Izzy
    Thanks for asking :) I am ok I guess....saw my doctor today and my next scan is at the beginning of December. I asked my prognosis and he honestly answered that time will tell. As I have a history of anxiety which was under control until this he chatted to me kindly and told me to go and live my life, enjoy myself and simply be me .. He said I must try and keep my anxiety under control which was in a way quite comical when I was hyper ventilating all over him lol. But I know his advice is good for me. It is just hard to process everything. This has changed everything in my eyes I am finding it hard to be positive. I can only see the negative at the moment. I feel very defeated at the moment sort of broken. I am trying to smile and be upbeat and some days it is working:) I have returned to work for a few hours a week which is helping. I am a fossil preperator and have a small shop on the beach here in Dorset where I live.....it is beautiful and I am luckier than most in where I live and what I do for a living. I just like to have a plan and I feel now my plans are uncertain .. Which they are. So I have to work on adjusting to my new normal. As for my recovery....I'm not to bad. I am walking upright now as I found I was bending to one side also, I have less swelling. I still have a weird shape but I'm not vain I can live with that. I'm not so bothered with the look of my tummy if I'm honest. I look after my self and I am clean and tidy so if someone thinks I am odd because I am an odd shape anywhere I don't really care :) I still have had no contact from two people I thought I was good friends with but I find I care less as the days go on..the people I have around me care for me and love me and my husband and children protect me and love me without question. They always have as they are all I have. I lost my parents and brother some years ago hence the anxiety issues. I feel very loved and cared for ... In fact as I type I realise more just how lucky I am. My children's friends love me and pop in and see me at work all the time. I drive around this small island on the south coast of the Uk and people wave at me and smile. I have a son who is 29 who would kill for me and a daughter of 22 who has recently done things for me that no daughter should have to and I feel humbled. And grateful and again very loved. My husband works hard does not complain about my eccentricities and my frittering of his wages on handbags :) And here I am writing all this private stuff on a public forum for complete strangers to read and I don't care. It doesn't matter does it when you are faced with stuff like this. It is 2 am here in the Uk and I must get some sleep as I am working at Miday tomorrow :) love to you all.....Michelle xxx

    What matters

    No, it doesn't matter, Michelle - from one at the other end of the UK at  5:15 a.m.  You seem to have it pretty well taped when it comes to what does matter and you now have another extended Family well placed to answer most of the questions you might have.

  • Eims
    Eims Member Posts: 423

    Hi Izzy
    Thanks for asking :) I am ok I guess....saw my doctor today and my next scan is at the beginning of December. I asked my prognosis and he honestly answered that time will tell. As I have a history of anxiety which was under control until this he chatted to me kindly and told me to go and live my life, enjoy myself and simply be me .. He said I must try and keep my anxiety under control which was in a way quite comical when I was hyper ventilating all over him lol. But I know his advice is good for me. It is just hard to process everything. This has changed everything in my eyes I am finding it hard to be positive. I can only see the negative at the moment. I feel very defeated at the moment sort of broken. I am trying to smile and be upbeat and some days it is working:) I have returned to work for a few hours a week which is helping. I am a fossil preperator and have a small shop on the beach here in Dorset where I live.....it is beautiful and I am luckier than most in where I live and what I do for a living. I just like to have a plan and I feel now my plans are uncertain .. Which they are. So I have to work on adjusting to my new normal. As for my recovery....I'm not to bad. I am walking upright now as I found I was bending to one side also, I have less swelling. I still have a weird shape but I'm not vain I can live with that. I'm not so bothered with the look of my tummy if I'm honest. I look after my self and I am clean and tidy so if someone thinks I am odd because I am an odd shape anywhere I don't really care :) I still have had no contact from two people I thought I was good friends with but I find I care less as the days go on..the people I have around me care for me and love me and my husband and children protect me and love me without question. They always have as they are all I have. I lost my parents and brother some years ago hence the anxiety issues. I feel very loved and cared for ... In fact as I type I realise more just how lucky I am. My children's friends love me and pop in and see me at work all the time. I drive around this small island on the south coast of the Uk and people wave at me and smile. I have a son who is 29 who would kill for me and a daughter of 22 who has recently done things for me that no daughter should have to and I feel humbled. And grateful and again very loved. My husband works hard does not complain about my eccentricities and my frittering of his wages on handbags :) And here I am writing all this private stuff on a public forum for complete strangers to read and I don't care. It doesn't matter does it when you are faced with stuff like this. It is 2 am here in the Uk and I must get some sleep as I am working at Miday tomorrow :) love to you all.....Michelle xxx

    Hi Michelle,
    All I can say is

    Hi Michelle,

    All I can say is that cancer effects everyone differently.  We and I say we meaning my husband and I thought we had had 2 good friends and we have not seen or heard from them since my diagnosis and operation but you know what its their problem not ours.  I suppose people deal with it whatever way they can and in some cases ignorance is bliss.  You are right it does show you what matters in life.  You will start to have better days and a for the cosmetic side of things I am with you there.  I had my op in January and I bought a swimsuit for my hols this year so I didn't have to embarrass other people but you know what....sod it....I ended up buying a bikini and wearing my scar with pride and to be honest after a few minutes no-one else saw it either!!!  The shape will die down as the muscle and other bits heal up....mine looked like a big ol lincolnshire sausage but its more like a chipolata now!!  You breathe in all that wonderful and fresh Dorset air and look after yourself its onwards and upwards from here on in Michelle....

    Eims x

    ps.....you are handbags and I am shoes Laughing

  • Djinnie
    Djinnie Member Posts: 945 Member

    Hi Izzy
    Thanks for asking :) I am ok I guess....saw my doctor today and my next scan is at the beginning of December. I asked my prognosis and he honestly answered that time will tell. As I have a history of anxiety which was under control until this he chatted to me kindly and told me to go and live my life, enjoy myself and simply be me .. He said I must try and keep my anxiety under control which was in a way quite comical when I was hyper ventilating all over him lol. But I know his advice is good for me. It is just hard to process everything. This has changed everything in my eyes I am finding it hard to be positive. I can only see the negative at the moment. I feel very defeated at the moment sort of broken. I am trying to smile and be upbeat and some days it is working:) I have returned to work for a few hours a week which is helping. I am a fossil preperator and have a small shop on the beach here in Dorset where I live.....it is beautiful and I am luckier than most in where I live and what I do for a living. I just like to have a plan and I feel now my plans are uncertain .. Which they are. So I have to work on adjusting to my new normal. As for my recovery....I'm not to bad. I am walking upright now as I found I was bending to one side also, I have less swelling. I still have a weird shape but I'm not vain I can live with that. I'm not so bothered with the look of my tummy if I'm honest. I look after my self and I am clean and tidy so if someone thinks I am odd because I am an odd shape anywhere I don't really care :) I still have had no contact from two people I thought I was good friends with but I find I care less as the days go on..the people I have around me care for me and love me and my husband and children protect me and love me without question. They always have as they are all I have. I lost my parents and brother some years ago hence the anxiety issues. I feel very loved and cared for ... In fact as I type I realise more just how lucky I am. My children's friends love me and pop in and see me at work all the time. I drive around this small island on the south coast of the Uk and people wave at me and smile. I have a son who is 29 who would kill for me and a daughter of 22 who has recently done things for me that no daughter should have to and I feel humbled. And grateful and again very loved. My husband works hard does not complain about my eccentricities and my frittering of his wages on handbags :) And here I am writing all this private stuff on a public forum for complete strangers to read and I don't care. It doesn't matter does it when you are faced with stuff like this. It is 2 am here in the Uk and I must get some sleep as I am working at Miday tomorrow :) love to you all.....Michelle xxx

    Hi Michelle,
    It is good to

    Hi Michelle,

    It is good to see you are staying in touch, as you have discovered, this is somewhere you can come to for support or just to vent.  Everybody here understands how you are feeling, so you can speak freely, and there will always be someone here to listen!

    I understand when you say you feel broken, in a sense you are!, but as time goes by you will learn how to live with this. Having had cancer doesn't have to dominate your life, but it will if you let it. I have lived with this for ten years now, it has been a concern, but not something I think about on a daily basis. No amount of dwelling on it was going to change the facts, it is what it is!

    You seem to be discovering what and who are important to you right now. Life has changed, of course it has!, but at the same time, you say you realise how blessed you are. Just writing on here has helped to give you an understanding of how rich you life is. It is all there still for you to enjoy, don't let this diagnosis get in the way!....Just a thought!...If writing has helped you, maybe keeping a journal would be useful!

    In my experience with anxiety and panic attacks, trying to focus on not being anxious is counter productive. The more you try not to be anxious, the more anxious you become!  Give yourself time, your body and mind are slowly adjustiing! You can't force yourself to feel a certain way, but you can gradually change your way of thinking, and you will, given time!

     

     

    Djinnie x

     

    *By the way did you manage to get hold of some Stevia?

  • Baaa-bs
    Baaa-bs Member Posts: 50
    You're in good company

    I'm sorry for your diagnosis, the reason we are all on this board. I too was being checked for something else when they found a 15x11x10cm tumor in my left kidney. It was removed on April 9th, and it does take some time to heal. My Dr told me I would be able to go back to work in 4 weeks, but there was no way I could have done that. I walked and walked and slowly, I started to regain strength. I think the hardest part for me was wearing anything around my waist. The incision is quite large and they had to remove a rib to get it out. 6 weeks later they removed a wedge section on my right lung as well as a few more lymph nodes. Currently, I still have a met in my liver.

    Emotions will run wild..... but hang in there. You sound very positive and that and your friends here will help you get through the tough times.