New here looking for support

Renee1128 said:

Very new to this.

Smitty, your strength and courage have inspired me to put pen to paper (so to speak) Thank you!   I am 46 and had surgery on Nov 4th to remove a 3cm RCC mass from my right kidney.  I too have been told how blessed I am to have found the mass so early and am finding it easier day by day to accept this.  I am definitely waging a war in my mind between feeling very blessed and extremely scared.  I was able to have surgery using the Davinci method leaving me with 6, small incision areas.  I am back to work and feel great most of the time but still feel a soreness in my kidney area.  I am certain that this must be normal only 6-7 weeks post surgery but my mind goes to that deep, dark place when I allow it.  It is a daily, sometimes hourly, struggle to remain positive and thankful BUT....I can look back over the past 8 weeks-since hearing the "C" word, and can see that I am making progress. I am a Christian and I have experienced a closeness with God that I never knew was possible.  Prayer is a very powerful tool for sure.  I am also seeing a therapist to help with the doubt, fear and anxiety and this is helping as well.  I am sooo thankful to have found this forum as I am having a hard time finding support groups in my area for SURVIVORS-that is what we are-of RCC.  I have approached my Urologist about starting a support group with his practice...it is a very large practice and they currently only have a support network for prostate cancer.  I would appreciate any advice/words of wisdom on how to proceed with starting a support group.  May God bless us all!

Renee

Renee,

Like you I had a small tumor and felt like the world had come crashing down when I heard the big C word. That was 11 and 1/2 years ago. Everything you are feeling physically and emotionally is normal. You just had major surgery,'' As time goes by you will put all that worry in perspectine and it will go away.

As far as the support groups I have seen from the Kidney Cancer Association, they seem to be addressing the concerns of those with ongoing cancer issues which luckely we do not have with small tumors except for nervousness around scan time.

Every so often us surviors add a little humor about our journey. A little of mine and a lot from garym litters this website. Just so you understand my name Icemantoo has nothing to do about my gang affiliation, but reflects the fact that both my father and grandfather were in the retail Ice business.

As for the Prostate Cancer survivor group, you do not sound like the type of Renee who woukd benefit from that.

If you chimed in where you are from maybe one of our survivors on this board in your area could reach out to you.

Icemantoo

icemantoo said:

Welcome

Renee,

Like you I had a small tumor and felt like the world had come crashing down when I heard the big C word. That was 11 and 1/2 years ago. Everything you are feeling physically and emotionally is normal. You just had major surgery,'' As time goes by you will put all that worry in perspectine and it will go away.

As far as the support groups I have seen from the Kidney Cancer Association, they seem to be addressing the concerns of those with ongoing cancer issues which luckely we do not have with small tumors except for nervousness around scan time.

Every so often us surviors add a little humor about our journey. A little of mine and a lot from garym litters this website. Just so you understand my name Icemantoo has nothing to do about my gang affiliation, but reflects the fact that both my father and grandfather were in the retail Ice business.

As for the Prostate Cancer survivor group, you do not sound like the type of Renee who woukd benefit from that.

 

If you chimed in where you are from maybe one of our survivors on this board in your area could reach out to you.

 

Icemantoo

Thank you Icemantoo!   I LOVE that you are an 11 year survivor...Praise God!  I am looking forward to the time when I will be able to see the humor in my situation as I love to laugh.  My diagnoses came in October with surgery 2 weeks later.  It has taken some time to wrap my head around the whole thing.  It was like a whirlwind and I am sure everyone here understands that feeling.  I live in Midlothian, Va which is about 20 minutes south of Richmond Va.  I am looking forward to seeing what support groups are out there.

Have a great day!

Renee1128 said:

Thank you!

Thank you Icemantoo!   I LOVE that you are an 11 year survivor...Praise God!  I am looking forward to the time when I will be able to see the humor in my situation as I love to laugh.  My diagnoses came in October with surgery 2 weeks later.  It has taken some time to wrap my head around the whole thing.  It was like a whirlwind and I am sure everyone here understands that feeling.  I live in Midlothian, Va which is about 20 minutes south of Richmond Va.  I am looking forward to seeing what support groups are out there.

 

Have a great day!

The fact that everyone here has reached out for some kind of support or reaffirmation is a tribute to the understanding and compassion of our members. Most of us have been in this situation. Fear and the unknown prognosis is frightening. Once we are diagnosed with cancer, it is a label we can't shake. Not much worse can be thrust upon us. We are mortal and if we never thought about it before, we sure do now. I have thought about my cancer every day now for nearly 3 years. I can't even count how many times a day I think about it. Maybe it is only once a day. But for 16 or 20 hours at a time. I believe that when I find myself concentrating on another task it only is temporairily displacing my cancer thoughts. How come I am not chronicly depressed or completely nuts? It is because I deal with this as a challenge and I don't concede an inch. I will fight this with the tenacity of the Terminator robot. I have setbacks. But also victories. At this time 2 years ago I was in much pain and had difficulty walking due to bone mets. Percocets were like M&M's. I would nearly pass out from chest and back pain. Giving up was not an option. Couple that attitude with the good fortune of finding a doctor who cared, and was able to provide access to the trial drug MDX-1106, I prospered. Returned to weight training, running, golf and riding my Harley. Challenges have continued. I was eliminated from the trial due to some new mets. I have given IL-2 a chance. There has been some effect but I doubt if it will be the cure. It decimated my body. Strength loss, weight loss, mental changes. Now 2 months out, I again have returned to full exercise. Mind is clear and focused. Not a single person who sees me has any idea that I have metastatic cancer. Especially since I remain in better shape than most all other 61 yo's and those much younger. Currently pain free. I feel at least as good as I did many years back prior to diagnosis. I have future plans. (although they are relatively short term of 1-2 years). I am a realist after all. I have no bucket list. I am living it. I do everything I enjoy. I have a wonderful wife and family. You just gotta love grandchildren. That right there should be  enough to motivate anyone.

So for everyone who doesn't know where to turn, is frightened to death, and wonders if the battle is worth it, take control. Seek confirmation from others with this dreaded disease. Then do something about it. Look at those of us who are living. Many here with stage one or two will be cured with surgery. Good for them. Some of us with stage 3 or 4 may also live for a long time. Some won't. That is sad. RIP Tex. He taught us all how to fight, to learn, to do everything in our power and not give up. (I have heard through the grapevine that it was 2 days after Tex passed away that they got him to stop compiling data and to lie down.) He did this for ALL of us. Don't let that effort be wasted. How much more support can there be? Take your diagnosis and deal with it. Ride the emotional roller coaster. Then get off, live, love, and fight. The cure is just around the corner. But we must be here to benefit. We have cancer. We do not give up. We live. No one is alone. Share the Karma.

GSRon said:

OK, around here you will find

OK, around here you will find "ears" that will listen... "shoulders" to cry on... "hugz" of understanding, "knowledge" to bring hope and move forward..  And every now and then a "Swift" kick in the back side to help you move forward.  We all care about each other and will not sugar coat the bad stuff and help celebrate the good...  Kind of like life, don't you think..?

Ron

Oh its so difficult for me right now ..........I have been in my journey for 3 and half months, I have good and bad days, but when fear creeps in it takes control of my whole day.  I start feeling pain, my abdomen gets swollen, the BULGE gets bigger, and I cant concentrate at work, I feel like if I was fresh out of surgery.  Saying the word CANCER is painful.  My tumor was 4.5 cm (clear cell) and contained to my right kidney no metastatis to the sourranding tissue, I know I have a positive future and will do fine, but I must beleive this truly believe it and accept this with bravery and continue on this journey, I know that I am not broken, that this is happening for a reason, I am looking at life with different colored glasses, everything that would bother me before is so trivial and small.  I have not joined a support group cause I find that when I talk about my cancer I cry and cant speak, I have tears in my eyes as I write this.  I know the day will come when I can speak about it without a tear.

I log in and read these pages and I find confort in your words...thank you.

Rosie5511 said:

facing my fears everyday

Oh its so difficult for me right now ..........I have been in my journey for 3 and half months, I have good and bad days, but when fear creeps in it takes control of my whole day.  I start feeling pain, my abdomen gets swollen, the BULGE gets bigger, and I cant concentrate at work, I feel like if I was fresh out of surgery.  Saying the word CANCER is painful.  My tumor was 4.5 cm (clear cell) and contained to my right kidney no metastatis to the sourranding tissue, I know I have a positive future and will do fine, but I must beleive this truly believe it and accept this with bravery and continue on this journey, I know that I am not broken, that this is happening for a reason, I am looking at life with different colored glasses, everything that would bother me before is so trivial and small.  I have not joined a support group cause I find that when I talk about my cancer I cry and cant speak, I have tears in my eyes as I write this.  I know the day will come when I can speak about it without a tear.

I log in and read these pages and I find confort in your words...thank you.

Hi Rosie, 

Snap! I also had a 4.5 clear cell right kidney, the tumour was evicted in March. It is hard I know but maybe a support group is exactly what you need right now. The fact that they have walked in your shoes you will find nothing but empathy. If you are not quite ready to talk that will be ok you can just listen, it will help you feel less isolated with this. You know that crying is very healing you should let yourself have a good cry, in fact why not push the boat out and have several. A support group is exactly what it says on the box, whether you talk or just cry:)

We are all here to support you whenever you need it!

Djinnie x

icemantoo said:

Welcome aboard

Rosie,

It appears you are a little bashful. You joined in September and waited until today to talk about that beautiful little bulge. Don't worry it should go back to normal within a year and by next summer you should be back in that bikini.

 

My comments to Renee above are equally applicable to you.

 

My neighbor Faye across the street had her surgery when she was 64 and has 18 years to go before she hits 100.

 

 

Icemantoo

Glad to hear that I can get into a bikini by summer, Icemantoo! Between what you and Ron have been telling me, I think I will end up looking better than when I started!

I must say that my incision is still quite swollen - it has only been 11 days, but I was starting to worry that it is kind of slow in going down. I still have my staples in. 6 holes....one of them really big. I did panic in the hospital a bit. They were trying to go through an old incision but couldn't. First time I looked in the mirror, after they took the surgical tape off and informed me that they couldn't go through the existing incision, I went to the bathroom to have a look....I came out and told my hubby that they did 2 large incisions. I didn't have my glasses on. I showed my hubby and he burst out laughing. What I saw as an incision was just the magic marker line that they drew on. LOL!

But I am going stir crazy. So, a couple of days ago we went grocery shopping and 1 1/2 hours later I was hurting. Lesson learned.  I am doing light laundry and cooking. Not too much, is it?

Not on any meds at all. Not sleeping great though, either. (getting to excited to see Santa, maybe) I am going to my family doctor on Monday to get the staples removed - I think I will talk to him about it. Even gravol isn't helping. I think I need to tire my body out or something.....vicious circle.

Cheers!

Jojo

Smitty65 said:

Thank you all so much

I have to admit I have been stalking this Web page for a while now. The support  I saw in this group is amazing. So many cancer websites I saw were negative and dealt with the initial diagnosis as opposed to living positively after treatment. 

Today for some reason has been worse then most.  My back and my surgery scars have been aching since the weather turned so I currently have myself convinced I have pancreatic cancer despite the ct scans,  xrays and blood tests to the contrary.  I have to start believing the science and stop listening to the crazy thoughts in my head.  

Smitty listening to you is like looking in the mirror at the moment but the only difference is I am a woman!!!  I totally know where you are coming from and I suppose we both need to get out of this place and try to move on.  I am thinking that its just because it is a year ago today for me that I was told (out of the blue) that I had cancer!!!  We are all here for you to vent or whatever!!!

Eims 

twinthings said:

I can relate

Smitty, I completely understand what you're going through!  I can't tell you how many times a day cancer is in the forefront of my thoughts.  Too many to count!  I don't know how to turn my mind off it, in terms of thinking every ache and pain is cancer.  It's kinda funny, not haha funny, but, while seeing my doctor 2 weeks ago for my first set of post op tests, I could not fight back tears.  I think the whole memory of that day in May, sitting in that same office, when he told me I had cancer, came rushing back to me and tears just ran down my face.  I'm pretty sure my Dr thinks I'm loco!  He suggested I seek counseling.  At the time, it made me laugh realizing that he probably thinks that's all I do is sit around and cry about having had cancer.  Quite the contrary. Other than the episode of PTSD induced by returning to his office, for the most part, I'm fine.  And I remain fine...until a new ache pops up.  I can't find a common thread as to why some of us react this way while others never give it a second thought. 

But, God forbid we face recurrence or a new primary tumor, odds are excellent it would be caught early.  For someone like me who has lost both parents and numerous family members to cancer, I am alllll too happy to be so closely monitored. Still, even knowing that, I can't help but worry.  I think the fact that you are still raising your girls explains much of your anxiety.  My children are 28 yrs old and no longer need my parenting but, they still need their mama!

Hang in there, Smitty!  If we believe it will get easier with time, it will.  Think happy thoughts

Did I read you're in the Cleveland area?

Sindy

   

sindy i am in shock!!!!  there is nooooooooooo way you have a 28 year old!!!!  you look amazing....i have whatever you are having please....