New Member Struggling a bit....

2

Comments

  • I am alive
    I am alive Member Posts: 315

    Thanks!

    For the welcome Laughing 

    I am not sure which type of rcc it is yet. I was told all the results on the phone and have an app coming through for post op check so will ask more then.

    I have had a bit of a struggle walking..is this normal? I mean I can walk but it is slow and a bit sore and makes me tired. I did do more yesterday tho' managed to walk slowly up a small high street and buy some stuff!! That felt good Laughing Hubby standing by scared to even think about complaining lol .... Ha! I bought a dress a cardigan a ton of nail polish some books allsorts of stuff .. desperate times and all that... lol

    I dont know how i feel really .. i am usually out going and i think fairly amusing and good fun but this has hit me hard in lots of ways. I am worried but I know I have to be positive. I had a amusing mix of responces to my results from the inlaws phoning and talking to me as if I was allready on my way out .. dare to dream! My buisness partner burst into tears ffs wtf? But my kids and husband and a friend were very positive. Truth is no one knows do they. Ah and I have had two friends avoid me which saddened me deeply.

    Anyways.....I hope to be around for awhile and make friends here.

    Michelle x

    I heartily endorse it! Good instincts.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Welcome from across the pond

    Miascelle,

    A little scary being told you have Kidney Cancer a.k.a Renal Cell Carcinoma and that little initiation to start things with (surgery). We all went through it and it is a little hard to explain it to others, Remamber when CANCER was something someone else had. And no one really heard of Kidney Cancer because that was one of the rare ones. Many on this board have came on with a lot more baggage  (size of tumor) than you and are doing realitively well. You are borderline Stage 1 at 6 cm and very well may get thru this with no further treatmant. My tumor was a little smaller (4.2 cm) and I am 11 years without anything further, Fay across the street started her RCC with Lung mete and does not remenber the size of her little sucker. She is   82 and started her journey at 64. Our dogs like to bark and growl  at each other.  Maybe they are having friendly disagreements about the health of their friends and know a lot more about this then we do.

     

    Icemantoo

     

     

  • Miashelle1
    Miashelle1 Member Posts: 44
    icemantoo said:

    Welcome from across the pond

    Miascelle,

    A little scary being told you have Kidney Cancer a.k.a Renal Cell Carcinoma and that little initiation to start things with (surgery). We all went through it and it is a little hard to explain it to others, Remamber when CANCER was something someone else had. And no one really heard of Kidney Cancer because that was one of the rare ones. Many on this board have came on with a lot more baggage  (size of tumor) than you and are doing realitively well. You are borderline Stage 1 at 6 cm and very well may get thru this with no further treatmant. My tumor was a little smaller (4.2 cm) and I am 11 years without anything further, Fay across the street started her RCC with Lung mete and does not remenber the size of her little sucker. She is   82 and started her journey at 64. Our dogs like to bark and growl  at each other.  Maybe they are having friendly disagreements about the health of their friends and know a lot more about this then we do.

     

    Icemantoo

     

     

    Thanks....

    for all the advice and welcomes...it is apreciated. I actually went to work today for three hours. just sat there tho'..needed a change of walls. I still keep having mini melt downs etc and just wish non of this had happened! I am positive when I am not having a meltdown. Trying to be up beat here Smile I am bordering on self pity too I think. lol oh dear i am trying to think of something constructive to say.

    I had a holiday booked in India for November and I have cancelled it. Stupid? I know I just dont feel comfortable going that far away from home at the moment. Some advice I had was to go some be careful so I made the decision myself. We were lucky enough to go last year. We opted instead for a week nearer home end of september. but I am not confident and I know I should be. I just wish I could see a way forward...I hope this forum will help me with that. One minite I feel positive .. the next I think whats the point .. I am hoping this will pass.

    I am drinking plenty of water watching what I eat and any other advice on nutrition would be good. Did anyone replace sugar in tea/coffee? If so what for?

    Thanks....Michelle x Laughing

     

  • Miashelle1
    Miashelle1 Member Posts: 44

    Thanks....

    for all the advice and welcomes...it is apreciated. I actually went to work today for three hours. just sat there tho'..needed a change of walls. I still keep having mini melt downs etc and just wish non of this had happened! I am positive when I am not having a meltdown. Trying to be up beat here Smile I am bordering on self pity too I think. lol oh dear i am trying to think of something constructive to say.

    I had a holiday booked in India for November and I have cancelled it. Stupid? I know I just dont feel comfortable going that far away from home at the moment. Some advice I had was to go some be careful so I made the decision myself. We were lucky enough to go last year. We opted instead for a week nearer home end of september. but I am not confident and I know I should be. I just wish I could see a way forward...I hope this forum will help me with that. One minite I feel positive .. the next I think whats the point .. I am hoping this will pass.

    I am drinking plenty of water watching what I eat and any other advice on nutrition would be good. Did anyone replace sugar in tea/coffee? If so what for?

    Thanks....Michelle x Laughing

     

    Oh and by the way....I have

    Oh and by the way....I have all these wierd lumps in my side ?? Is that normal ? I have bumps where there was non before lol It all sort of feels like it is in the wrong place! And it moves as in bloats up and down...It has gone down a bit but it is strangeLaughing!

    Michelle x

  • Djinnie
    Djinnie Member Posts: 945 Member

    Thanks....

    for all the advice and welcomes...it is apreciated. I actually went to work today for three hours. just sat there tho'..needed a change of walls. I still keep having mini melt downs etc and just wish non of this had happened! I am positive when I am not having a meltdown. Trying to be up beat here Smile I am bordering on self pity too I think. lol oh dear i am trying to think of something constructive to say.

    I had a holiday booked in India for November and I have cancelled it. Stupid? I know I just dont feel comfortable going that far away from home at the moment. Some advice I had was to go some be careful so I made the decision myself. We were lucky enough to go last year. We opted instead for a week nearer home end of september. but I am not confident and I know I should be. I just wish I could see a way forward...I hope this forum will help me with that. One minite I feel positive .. the next I think whats the point .. I am hoping this will pass.

    I am drinking plenty of water watching what I eat and any other advice on nutrition would be good. Did anyone replace sugar in tea/coffee? If so what for?

    Thanks....Michelle x Laughing

     

    Post op

    Hi Michelle, 

    Everything you are feeling is perfectly natural, you have suffered a major body blow. This whole sequence of events, the diagnosis, major op and the and anesthetic leave you feeling pretty depressed. You will get through this, just give yourself time. I often found myself breaking down in tears, and struggled with feelings of depression. I think most people go through that, it does pass.

    I have cut out red meat, and also cut back on sugar. I use the brown raw Stevia liquid instead of sugar. I use it on cereals and in coffee it tastes great, I don't like sweet tea so haven't tried that. The raw stevia is a healthy alternative, it is also said to lower blood pressure, and uric acid. I buy mine from a herbalist in the UK, a small bottle lasts for ages.

    Djinnie x

  • Djinnie
    Djinnie Member Posts: 945 Member

    Oh and by the way....I have

    Oh and by the way....I have all these wierd lumps in my side ?? Is that normal ? I have bumps where there was non before lol It all sort of feels like it is in the wrong place! And it moves as in bloats up and down...It has gone down a bit but it is strangeLaughing!

    Michelle x

    Lumps & Bumps

    If you consider the logistics of accessing the kidney, cutting through muscle and fatty tissue. All of this has to be pushed to one side, and after the op everything has to resettle and reconnect. So the lumps and bumps and pouches are all normal I'm afraid, lol!..They will go in time:-)

    Djinnie x

  • TillieSOK
    TillieSOK Member Posts: 252

    Oh and by the way....I have

    Oh and by the way....I have all these wierd lumps in my side ?? Is that normal ? I have bumps where there was non before lol It all sort of feels like it is in the wrong place! And it moves as in bloats up and down...It has gone down a bit but it is strangeLaughing!

    Michelle x

    I understand everything you

    I understand everything you are saying.  Been there, done that (didn't like it one bit!) still doing it, and have ordered the damned tshirt!

    I am taking a very low dose antidepressant, because I seem to get the "what's the use" feelings, too.  I have the odd, moveable lumps and bumps, too....although in my case I think it's probably just the fat rearranging itself. Lol. Everything you are feeling, I have been assured is perfectly normal....whatever " normal" is.  You just take it one day at a time.  I have scheduled and we ARE going to go on a trip to Jamaica at the end of December....come hell or high waters.  Our daughter has picked that for her destination wedding, and not even wild horses, let alone KC is going to keep me from making that trip.  Cool  I won't be able to do any diving, but I sure as heck can snorkel! And do water aerobic exercises...and read....and walk on the beach....and enjoy life.

    oh, and I have given up soft drinks and ugar.  I use a sweetener made from Monk fruit... Called Nectresse, by the makers of Splenda. Nothing artificial in it!

  • NanoSecond
    NanoSecond Member Posts: 653
    TillieSOK said:

    I understand everything you

    I understand everything you are saying.  Been there, done that (didn't like it one bit!) still doing it, and have ordered the damned tshirt!

    I am taking a very low dose antidepressant, because I seem to get the "what's the use" feelings, too.  I have the odd, moveable lumps and bumps, too....although in my case I think it's probably just the fat rearranging itself. Lol. Everything you are feeling, I have been assured is perfectly normal....whatever " normal" is.  You just take it one day at a time.  I have scheduled and we ARE going to go on a trip to Jamaica at the end of December....come hell or high waters.  Our daughter has picked that for her destination wedding, and not even wild horses, let alone KC is going to keep me from making that trip.  Cool  I won't be able to do any diving, but I sure as heck can snorkel! And do water aerobic exercises...and read....and walk on the beach....and enjoy life.

    oh, and I have given up soft drinks and ugar.  I use a sweetener made from Monk fruit... Called Nectresse, by the makers of Splenda. Nothing artificial in it!

    Nectresse

    Careful. You might want to consider the points raised in this article:

    http://www.draxe.com/is-nectresse-safe-the-new-natural-sweetener-by-splenda/

  • TillieSOK
    TillieSOK Member Posts: 252

    Nectresse

    Careful. You might want to consider the points raised in this article:

    http://www.draxe.com/is-nectresse-safe-the-new-natural-sweetener-by-splenda/

     
    Well, poop!  I don't use it

     

    Well, poop!  I don't use it very often and only in my tea.  I will not use anything with aspartame, sucralose, or sucrose in it.  I thought I was doing good to find a sweetener without any of that in it.  Back to the drawing board.....or learn to like unsweet iced tea.  GAAAKKKK! 

    Yell

  • Miashelle1
    Miashelle1 Member Posts: 44
    Djinnie said:

    Post op

    Hi Michelle, 

    Everything you are feeling is perfectly natural, you have suffered a major body blow. This whole sequence of events, the diagnosis, major op and the and anesthetic leave you feeling pretty depressed. You will get through this, just give yourself time. I often found myself breaking down in tears, and struggled with feelings of depression. I think most people go through that, it does pass.

    I have cut out red meat, and also cut back on sugar. I use the brown raw Stevia liquid instead of sugar. I use it on cereals and in coffee it tastes great, I don't like sweet tea so haven't tried that. The raw stevia is a healthy alternative, it is also said to lower blood pressure, and uric acid. I buy mine from a herbalist in the UK, a small bottle lasts for ages.

    Djinnie x

    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

  • Miashelle1
    Miashelle1 Member Posts: 44
    TillieSOK said:

     
    Well, poop!  I don't use it

     

    Well, poop!  I don't use it very often and only in my tea.  I will not use anything with aspartame, sucralose, or sucrose in it.  I thought I was doing good to find a sweetener without any of that in it.  Back to the drawing board.....or learn to like unsweet iced tea.  GAAAKKKK! 

    Yell

    LOL thanks for trying. Maybe

    LOL thanks for trying. Maybe with no sugar but yuk! Money Mouthx

  • Miashelle1
    Miashelle1 Member Posts: 44

    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

    Oh and someone said I looked

    Oh and someone said I looked 'weak' today .. for gods sake I wanted to kill em Innocent Wouldnt anyone look weak after having a kidney removed etc etc... sigh lol ...im laughing at myself now Laughing

  • Miashelle1
    Miashelle1 Member Posts: 44
    Djinnie said:

    Lumps & Bumps

    If you consider the logistics of accessing the kidney, cutting through muscle and fatty tissue. All of this has to be pushed to one side, and after the op everything has to resettle and reconnect. So the lumps and bumps and pouches are all normal I'm afraid, lol!..They will go in time:-)

    Djinnie x

    But they keep moving

    But they keep moving about .... lol

  • Djinnie
    Djinnie Member Posts: 945 Member

    Oh and someone said I looked

    Oh and someone said I looked 'weak' today .. for gods sake I wanted to kill em Innocent Wouldnt anyone look weak after having a kidney removed etc etc... sigh lol ...im laughing at myself now Laughing

    I know how dealing with all

    I know how dealing with all of this stuff can make you angry. In my case after having kidney cancer in 2003, I was being regularly scanned. Unfortunately the new tumour was missed over a 3 year period, on three separate scans. It was picked up last December after an MRI. I was livid with the doctors, I think the anger got me through the first few months. I am over it now, but I don't trust anyone anymore, I try to check everything.

    You sound like a strong and determined woman to me, that's what will get you past this. The most important thing for us to do now, is to eat healthily. You seem to have made a good start there already. I have started juicing as well, lots of greens and asparagus, looks awful but it makes me feel good.

    I buy the Stevia from a medical herbalist in Hampshire, www.godshaer.co.uk. He is very helpful and can be contacted by phone most days. He sells two types of Stevia, i prefer the flavor of the brown, I have been using it for years and could never go back to sugar now.

    All the best

     

    Djinnie x

     

     

     

     

  • TillieSOK
    TillieSOK Member Posts: 252

    Oh and someone said I looked

    Oh and someone said I looked 'weak' today .. for gods sake I wanted to kill em Innocent Wouldnt anyone look weak after having a kidney removed etc etc... sigh lol ...im laughing at myself now Laughing

    I have neighbors that I

    I have neighbors that I dearly love, who would do anything in the world for me or each other, as I would for them,  but each day one or the other will come over and sit and look at me until I feel like I must have a smudge of something on my face or something hanging out of my nose! Lol   Then, they will say, in a funereal tone, " how are you feeling today?"  I say " pretty good!" And they will give me that sad look again, and say "really? Do you REALLY feel okay?"  I feel like i need to do some back flips or cartwheels or something to convince them I'm actually going to live for awhile! I mean, my God! Do I really look like I am DYING?  I thought I was looking purty damned good!  I've lost 8 pounds, my hair looks great, my complexion is clear, I don't have any cavities in my teeth, and my fingernails look gorgeous!!!  I know what you mean about being in the angry stage....I'm pretty much there still.  I am literally salivating at the idea of confronting my surgeon who read my path report and still didn't tell me the truth! But, I think a little anger is good!  It keeps us in the "Hell NO, this isn't going to be what does me in!"  mode.  Which makes us more careful and more aware of what we should and should not do to protect our remaining kidney.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    TillieSOK said:

     
    Well, poop!  I don't use it

     

    Well, poop!  I don't use it very often and only in my tea.  I will not use anything with aspartame, sucralose, or sucrose in it.  I thought I was doing good to find a sweetener without any of that in it.  Back to the drawing board.....or learn to like unsweet iced tea.  GAAAKKKK! 

    Yell

    Taste

    Beats me why anyone chooses to ruin the taste of tea or coffee by putting  sweetener of any kind into them! 

    Much like going salt free (or close to it) it's not that difficult to retrain yourself to finding you can happily do without all the sweetening that the food industy has rammed down our throats for the past few decades, with the catastrophic consequences that we're now witnessing.

  • GSRon
    GSRon Member Posts: 1,303 Member

    Oh and someone said I looked

    Oh and someone said I looked 'weak' today .. for gods sake I wanted to kill em Innocent Wouldnt anyone look weak after having a kidney removed etc etc... sigh lol ...im laughing at myself now Laughing

    Oh My

    Oh my Michelle...  People mean well, they just do not know as much as you about K.C.     Now hear this young lady..!  You are alive... PERIOD...  think of the alternative and smile a bit will ya..??   There are som many bad things that could of happened that didn't...  put one foot in front of the other and move forward... physically and mentally...  you can do it..!

    Ron

  • Djinnie
    Djinnie Member Posts: 945 Member
    Djinnie said:

    I know how dealing with all

    I know how dealing with all of this stuff can make you angry. In my case after having kidney cancer in 2003, I was being regularly scanned. Unfortunately the new tumour was missed over a 3 year period, on three separate scans. It was picked up last December after an MRI. I was livid with the doctors, I think the anger got me through the first few months. I am over it now, but I don't trust anyone anymore, I try to check everything.

    You sound like a strong and determined woman to me, that's what will get you past this. The most important thing for us to do now, is to eat healthily. You seem to have made a good start there already. I have started juicing as well, lots of greens and asparagus, looks awful but it makes me feel good.

    I buy the Stevia from a medical herbalist in Hampshire, www.godshaer.co.uk. He is very helpful and can be contacted by phone most days. He sells two types of Stevia, i prefer the flavor of the brown, I have been using it for years and could never go back to sugar now.

    All the best

     

    Djinnie x

     

     

     

     

    Stevia

    Michelle, Just a thought! If you order the small bottle it comes as a dispenser, but with the larger bottle you will need to ask Alan to send a dispenser with it.

     

    Djinnie x

  • 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

    3A is better than 4

    If the grade is low, with no scarcomitoid differentiation, you are in better shape than me.  FWIW,  my Urologist said he got it all, path report showed T1b @ 6 cm...but grade 4 with Sarcomitoid features.  He said that is not a big deal....call me in six months, we will get a abdomen scan and x-rays. 

    Instead, I went to NIH (qualified for a Familial study, as dad and grandfather had RCC)....they did a chest CT, and found a solitary Met in my lung. 

    Be your own advocite.  If you have not had a lung CT, try to get one.  Smaller mets will not show up on X-ray.  PET is good too.

    I trusted my Dr (primary care and Urologist), and they almost killed me.  (Primary would not order a CT or refer me to a urologist after my dad got RCC; said RCC is not genetic....and more recently, Primary sent me home with antacid for chest pain....two weeks later, I had a stent put in (last friday) for a 95% blockage in Left decending artery (I do not remeber the name of the artery).

  • Djinnie
    Djinnie Member Posts: 945 Member
    TillieSOK said:

    I have neighbors that I

    I have neighbors that I dearly love, who would do anything in the world for me or each other, as I would for them,  but each day one or the other will come over and sit and look at me until I feel like I must have a smudge of something on my face or something hanging out of my nose! Lol   Then, they will say, in a funereal tone, " how are you feeling today?"  I say " pretty good!" And they will give me that sad look again, and say "really? Do you REALLY feel okay?"  I feel like i need to do some back flips or cartwheels or something to convince them I'm actually going to live for awhile! I mean, my God! Do I really look like I am DYING?  I thought I was looking purty damned good!  I've lost 8 pounds, my hair looks great, my complexion is clear, I don't have any cavities in my teeth, and my fingernails look gorgeous!!!  I know what you mean about being in the angry stage....I'm pretty much there still.  I am literally salivating at the idea of confronting my surgeon who read my path report and still didn't tell me the truth! But, I think a little anger is good!  It keeps us in the "Hell NO, this isn't going to be what does me in!"  mode.  Which makes us more careful and more aware of what we should and should not do to protect our remaining kidney.

    The Right Support

    Good for you Tillie:) I had a friend who had a lot of problems in life, she would phone me constantly or come round for a chat. When I got my diagnosis, I told her the news over the phone, she didn't take it well, she started crying and kept repeating my name over and over. In the end she said she was too upset to talk and would phone back later,

    The next day she turns up with a bucket load of cooked food. She was really taken aback when I answered the door, she didn't expect me to be up and about. She kept hugging me and crying, telling me to stay calm and that WE will get through this. I got the distinct impression, she expected me to be curled up in a dark corner with a blanket over my head. Anyway, we had almost an hour of her intermittent crying, telling me that she was so scared she couldn't sleep. Having already lost one friend to cancer recently, she couldn't cope if something happened to me too. I found myself trying to comfort her. Omg! It was all such positive, supportive stuff. After she finally left I certainly felt I needed a dark corner!

    This went on for several days, I know she meant well in some twisted way but she was driving me crazy. She phoned me constantly checking to see if  I was ok, was I in pain, sleeping, eating? In the end I lost my temper and told her to get a grip, as she was stressing me out, and to stop with the meals on wheels thing. We haven't spoken since.... I know it is an awful thing to say, but I felt a sense of relief, I think she was sucking the energy out of me.

    The English grapevine here in France works faster than texting. The word was that we are no longer speaking because 'I am very stressed and not coping well' lol!! 

     

    Djinnie x