New Member Struggling a bit....

Miashelle1 said:

Thanks!

For the welcome  

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  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.

Miashelle1 said:

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  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

 

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

Miashelle1 said:

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 strange!

Michelle x

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.    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 said:

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 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! 

Miashelle1 said:

Oh and someone said I looked

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

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.

Miashelle1 said:

Oh and someone said I looked

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

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

Miashelle1 said:

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

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

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).