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Anxiety and Upcoming Scan

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Two weeks from Wednesday I will have my 6 month chest/abdomen/pelvic CT and blood work. It's been 20 months since my nephrectomy. Was diagnosed as Stage 3 Grade 3. I entered into an adjuvant therapy trial for one year, which I completed in February. It was a 50/50 everolimus/placebo double-blind study. No treatement since February. The only health issues I've had in the past several months is my blood pressure has been creeping up and I had to start taking blood pressure medication. Of course this may just be my age and/or my weight (I'm a little under 220 and 5'8"). The only other health issue I've been having the past few months, is some unexplained swelling in my hands. I've seen my nephrologist and family doctor about this, and they've done some tests but haven't found any reason for the swelling. It's somewhat mild, but annoys me. Mainly it makes me anxious that my cancer has come back and they are missing something, or that it's a side effect of my nephrectomy or the drug I was taking for a year. All in all, I'm having a hard time putting this cancer behind me.

My last visit to a new nephrologist was a bit of an eye opener. My previous nephrologist was an older man about to retire, and his attitude about me missing a kidney was very nonchalant. He said just don't eat big steaks and avoid salt, basically. The new nehprologist, a young woman, wants me to take my CKD more seriously. She said at my age and with my kidney function, I could easily outlive my kidney and that I really should take BP meds to keep my BP low to protect the kidney, and eat a renal diet (limited protein, limit salt), and get more exercise/lose weight. She sent me to a dietician. I'm working on doing what they said to do (my mind says, just in case the cancer doesn't come back, which, I know, isn't healthy thinking, but my mind does what it does. Haha.)

I need to say, I sure hope my scan is clean. I keep thinking if I can make it 2 or 3 years, maybe I can start to feel like this cancer is behind me. On the other hand, I know I need to change my life. I need to exercise more, eat better, take better care of myself. It's hard not to blame myself for my cancer. I've been overweight for a long time. It's really entrenched and even getting cancer didn't have much of a long-term effect on me changing my eating habits.

I'm so glad you all are here. I feel like this is one of the only places I can come and bring this issue and people understand. Everybody else thinks it's over and they moved on a long time ago. My youngest son has asked to take a break from me this past year. My older son is just busy with his own life. I understand all of that. I try not to take it personally. They have their own lives. I've become so aware since having this cancer how our time is limited. It's tricky to use that information to enjoy life instead of worrying about what's coming. :)

I wish you all well. I hope you beat this beast back and move on to a life without cancer.

Todd

swijak
Posts: 13
Joined: Jan 2011

Todd,

 

I think anxiety before scans is pretty common. I had my kidney removed four years ago.  Even though I have not had a reoccurrence in the last 4 years I get very anxious about a week or two before a scan until I get the “all clear” from the doctor. I had my latest scans last week and I get the results tomorrow. Intellectually I’m pretty positive; sub-consciously it bothers me with sleepless nights, anxiety, and really weird depression.  I have been extremely blessed that my wife fully understands and helps me through these times.

I have found it helps to talk about the issues with someone who is sympathetic and willing to listen. Sometimes all you need is to talk it through. It can be tough when close family does not have the time or understanding or willingness to help ease the emotional burden.  People who have never been close to someone with cancer do not understand that cancer does not just “go away”. Kidney cancer patients have to keep living with the idea it could come back at any time. But the idea should be to just “keep living”. Find someone to talk to; be it a friend, a consoler, church, or medical professional.   

 

 and GOOD LUCK ON YOUR SCAN!!!! Smile

 

Swijak

M/50s/ChRcc Dec 2010.

 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

What you've said makes a lot of sense. I found it very reassuring.

I know we've had a number of people post here that are thin and in good shape but have gotten kidney cancer. I've never smoked (other than a lot of second hand smoke as a child, but back then, who didn't either smoke first or second hand?), drank very little. I haven't been completely sedentary, even though I have a sedentary job (as a programmer). When I look at the list of risk factors, obesity is the only one I can identify with. Still, as you said, I don't know if that's what caused the kidney cancer.

Excellent advice. I hope your result is good! Please post about it.

Todd

swijak
Posts: 13
Joined: Jan 2011

Scans/Labs came back good. Dr has put me on once a year now for the next six years. I too am a programmer. Maybe that's the problem! Smile

That said I do fit the 'profile'; Over weight, middle-aged smoker over 50, very sedentary, high blood pressure and diebetis (managed) missing tyhroid. Trying to change all these things one at a time!

APny's picture
APny
Posts: 1948
Joined: Mar 2014

" It's hard not to blame myself for my cancer. "

If we brought this on ourselves then no one who is thin, athletic, and eating a healthy, well-balanced diet would ever get cancer. Yet they do and we act all surprised at how that could possibly happen because deep down we tend to believe that we have control over our health and what happens to us to a much greater degree than we really do. I’m not saying people should not eat right, exercise, and live a healthy life-style but I really don’t think that will guarantee that you’ll reach a 100 and never get cancer. I had NONE of the risk factors listed for kidney cancer. I have never been overweight and never ate much red meat. I don't smoke, I excercise, and no one in my family has had cancer. Yet I ended up with it, so go figure, lol. I’m hoping your scans come back with the best possible news and that your blood pressure will be brought under control. Watching your weight and exercising will make you feel better in the long run so that’s a great idea!

Srashedb
Posts: 482
Joined: Dec 2013

Todd:

my husband will be having scans in the next couple of weeks; he's on the 3 month schedule. It will go to every 4 if these are clean. His nephrectomy was 11 months ago, stage 4, grade 2.

because he's had bone deterioration and 2spinal mets, every ache and pull raises my anxiety. As for sons, we have 2. The youngest has his family but is always available to help and although I don't share my fears, I know that I can.

the oldest is abotu to have a baby (any day) and is about as thoughtless as they come; last summer, I asked him for some support and his response was that it wasn't about me. He may well feel fear but doesn't share it nor has he ever asked. 

I know how you feel; afraid, alone and disappointed? I was very clear with our oldest last summer. Told him that I had asked for his support and would never ask again. I suggested he do his research on stage 4 cancer and get with reality. 

but, you have definitely come to the right place; will have you in my thoughts for your upcoming scans and hopefully, we can both post some good results.

Sarah

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Hi Todd! 

First of all good luck on your upcoming scans.  I bet all will be well. 

As for those kids, well, they can be harder to deal with than cancer...at times.   My kids are 29 and unless they need me, I rarely see them.  They are too busy with their own lives to worry about me.  I use to take it personally...big time.  I no longer do.  My hubby takes it harder than I do.  He's been so use to our son doing everything with him.  They have always had hobbies together, but, since bubba got married...well, you get the picture.  Our daughter works out of state but when she does come home, she tends to make more time for all her friends than for mom and dad.  I look forward to the day she has a baby because I know she'll need me then. 

As for the son that wants to "take a break" from you, rest assured, some day he will wish he could get that time back.  He just doesn't know it yet.  Try not to fret.  I'm sure they love their dad and want nothing but the best for you. 

Let us know how your tests go.  Keep your chin up!!

Sindy

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I appreciate everyone's replies.

My youngest son did say "Dad I love you but..." when he said needed a break from me. I know he loves me. And my older one too. Yes. The older one married and disappeared. Truth is, he moved out of state when he was 22 and lived pretty far away for the next 5-6 years, so it did get a bit routine not to see much of him. Now he lives in LA about 1 1/2 hrs away, but he's married and got an important job (I said that word important with a a little emphasis, haha, I am proud of him though) so they are very busy. House. Dog. I wish I had a grandchild, but I keep that comment to myself (not my business). My boys are 31 and 28.

Not taking it personally is the key. I'm working on that in every aspect of my life. The cancer. Kids not calling me all the time to come hang out with them. Etc. It's really key to being happy I think is to not take stuff personally. It's really not about me. Lol. It's the way it should be.

I'm feeling more ready for the scan as it approaches.

Hugs to you all.

Todd

Karen0074
Posts: 64
Joined: Apr 2014

Todd, good luck with the scan.

 

karen x

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

In my case, my son lives less than a mile from me. I rarely see him. He does talk to my wife once every month or two. He has never asked me how I am doing. In 3 years. He has never offered to visit or help out with mowing the lawn. Even though his grandmother lives a 1/2 mile away and he knows I mow that lawn too. He is useless. His house and yard is a mess. His wife has to have something wrong with her too. We used to have them over every sunday for a big dinner. Not once have they ever invited us to eat. Not at their house or even out for a pizza. We don't invite them anymore.  And I have had some difficult times during these 3 years. What is wrong with boys? And I thought that wifes were more interested in keeping families together. Thanks. I got that off my chest.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Well, yes some of us are a but disconected from family..  I have not seen or heard from my two older siblings since my Dad died in 2003. And even then we did not talk much.   I saw them briefly last year at my Aunt's funeral.  They know I am Stage 4 Cancer. No exchange happened there... no calls no e-mails.. nothing..  So luckily I have a great circle of friends...  It sucks, but I do not worry or waste time about it.. can't as it won't change who they are.  Hang in there..!!

Ron

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

to be dyslexic. He has said that his dyslexic support group was planning to put together a stage production of "Annie Get Your Nug."

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

got you free tikcets! :)

Thanks for sharing Fox. It really helps to hear. Not that I wish this situation on anyone, but sometimes when I think everybody else has the opposite situation (kids that are grateful, caring, supportive, blah, blah) I seem to do this mental "woe is me" dance that doesn't show up until somebody else tells me they have a similar issue. Then all of a sudden I wake up and think "I'm not the only one. This other nice, decent person has the same situation, so maybe it's not ALL me". Haha.

Todd

Srashedb
Posts: 482
Joined: Dec 2013

our oldest son is having his first baby any day; we drove down (almost 10 hours) so we could see the newest grandchild.

After the way he's behaved since he got married, I no longer expect much and I drove down just to see the baby. We had our hotel in place and got in at 8:30. i texted him and his response was that they were tired and ready for bed so he would contact us today. His mother-in-law is already here and staying with them.

My husband was very disappointed and I was not expecting an invitation; it is lousy and inexplicable. 

Is this a younger generation thing? This is certainly not the values he was raised with and if it is his wife, he needs to grow a pair. I told my husband that if he felt the way he did, he should let him know. 

On the other hand, my youngest son anod his wife have been very available and when husband was in the hospital, he would bring the baby to cheer him up.

it is sad and we cannot imagine treating our parents this way but we have no choice.

Sarah

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I don't understand it either. I've got some parents with serious issues when I was a kid, but still always kept in touch and treated them with respect. Eventually I figured out that they did the best they could and I always got that I pretty much owed them some care and respect for not leaving me in a dumpster.

I don't know what it is. Still, I feel better when I don't take it personally. Hard not to. Once in awhile I do for a few minutes, then I make myself stop it. Lol. I figure he must have iss

Thanks for sharing. Sometimes I get crap in my head that says I'm the only one in a particular situation. It really helps to know I'm not alone.

Todd

DonMiller's picture
DonMiller
Posts: 109
Joined: Feb 2013

Well except for the fact that I am tall and fat our physical condition, cancer pathology and date of surgery seem about the same.  I sneaked through my 20 month scan NED last week.  I hate to admit it but there might be something to this whole "diet and exercise" stuffs from the Docs.

 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Sounds like you flew through that scan NED! Congratulations.

I'm sure there's something to that. Although we've had quite a few on here in decent shape that had our cancer too...so I don't think we get to heap all the blame on that. Maybe a little of it...

Either way, we didn't deserve it Don!

Here's to more NEDs and/or near NEDs in all of our futures.

Todd

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

Gosh, I just lost my first response to your thread.. dang!!

Anyway, Todd, I am sorry you are anxious and my hope is that we can lift you out of such worry for a bit. Stay in the moment.. as much as you can, hon.

Did you notice how we "hyjacked" your thread to NEW thread about our kids? Seems to be an important topic. You got us to address a sensitive issue. So thank you for doing this.

At first my family, kids came out of the woodwork to be there for me. I have a wonderful family. I have one brother who always refers to himself when thinking he is relating to YOUR issue/problem/illness, he means well. BUT even he did not do it. OKay, he did leave me a message as "ST Peter" stating he was relaying a message from GOD that they are not ready yet for me to come to heaven. hahahaha

Now with my kids, (and siblings 9 of them) they know I need to be checked on due to MS. They don't like to bring up the topic, so I offer mass email updates. I ASK for help if I need it. I let my kids know I miss their contact..for what that is worth.. Catholic guilt? LOL

What I learned to do is TEXT! THAT is how this generation likes to communicate! They usually answer. I ask to visit THEM, esp to see my grandkiddies. I have 9, all in town.

I learned that many of us even, our families, children do not know how to ask for help. Or..we assume they will know how. They do not like to talk about "illness" or something possibly terminal, because they maybe cannot face that fact. They need us to show them how. THey need US to bring it up. Agree?

We need to teach them how to face fears, inform and educate them. Right?

Would it be nice if they just took the initiative and resumed the family get togethers, established a normalcy? YESS!! But...

I am a firm believer in not facing the end of life, no matter when that may be, with REGRETS.

If we, as parents,  keep trying and reaching out and nada.. then it is THEIR issue to work out. Maybe there are leftover issues..

For me, I owned my part, then hard as this is to do, I let go of THEIR stuff.. after all.. its THEIR stuff to work on.

I feel better after I let go, forgive and keep showing them I care.

Warmly, Jan

 

a_oaklee
Posts: 440
Joined: Nov 2013

Frequently it has occurred to me that sometimes we just aren't matched up right at certain times.  For instance, I would like my husband to talk....I will listen.  He doesn't want to talk about any of this "health-stuff".  I'm here, I'm available and I'm not needed.  I want to help with anything.  Then I read from people that they are lonely and their family doesn't want to listen anymore, and they feel the need to talk about what they are going through.  Then re kids:  Mine wish that their dad would share how he feels and what is happening.  They come to visit, and half the time my husband is busy doing something somewhere else.  They want to talk with him about all this and help him, but he doesn't want any of it.  They adore him, as I do, but we are not "needed" in the way we want to be.  Some people here talk about being alone, needing help, assistance, transportation,  a shoulder to cry on...and I want and need to be all those things, but my special person acts strong and stoic.  I wish he would lean on me a little.  Some times I think it must be awfully difficult to be the "man" in the family...protector, provider, etc., and then to have illness come into your life and needing and not wanting help.  We are definitely in transition and trying to navigate through the changes in our life. 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

It's funny about the texting. That's how my younger son got angry with me was because of me texting him. He's a bit of an oddball, though. He goes against the grain of many people in his generation.

In general, yes. I agree and get what you've said.

My kids don't like me texting them. Neither of them. My older son said he feels like I'm trying to act too young or act like one of his buddies, and he doesn't like that. My younger son and I had a huge misunderstanding due to the texting that started our argument a year ago. He wasn't responding to my texts and I called him on it, and he said I was badgering him (I still disagree with him. It was like 1 text a week for 2 weeks in a row. Although the last text I did demand he respond with a text or a phone call. That didn't work too well. It was so much easier when he was 4!)

BTW, I don't think the Catholics have the market on guilt. Seems to be enough to go around. :)

Todd

 

Srashedb
Posts: 482
Joined: Dec 2013

texting is gfs only way my kids communicate and only rarely speak on the phone. It's fine for many things but subject to misunderstandings. 

We did see our sons a few times and this morning, he called to congratulate me on on the birth of my first grandson. We saw the baby (beautiful) and will stay until Wednesday. 

no inquiries at all on his dad's health situation, however.

my husband texted his friend who congratulated him and noted Robin Williams' passing. Again, texting can lead to misunderstandings but my first thought was why would he be so stupid. He probably meant well.

 

Sarah

DonMiller's picture
DonMiller
Posts: 109
Joined: Feb 2013

Todd.  I honestly dont think there is any way you can avoid being anxious over the scans.  There is a good freaken reason to be nervous.  I refuse to deal with it anymore and just take valium for a couple of days. I dont take it regularily. None of my Doctors have a problem with it so screw it.  I am a litigator so I stay away from the Courthouse for the week so as not to mess anything up. I realize alot of the folks on the board will jump all over me but the fact is it works pretty well.   

APny's picture
APny
Posts: 1948
Joined: Mar 2014

I for one won't be jumping all over you. I use Xanax when the anxiety gets to be too much.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

My doc has given me some Xanax and some Ativan. I use them when I need them (usually once or twice a week but not every week). On my scan day, I take the whole day off and cancel whatever I had in the evening. My work tried to get me to do a conference call at 9pm on my scan day next week. I said no (and I didn't offer any excuse, just that I had a conflict). I just didn't want a meeting hanging over me on top of the results of the scans. I'm either going to be celebrating or bummed out. In either case, a work meeting is not where I want to be!

Stress can be difficult to manage. This does add to it and I agree that there's a reason to be anxious.

I also talk to people- whoever will listen. I feel better. I'm sure they are tired of it, but I figure we're friends/family and I listen to your crap, now when I have something important going on you're going to listen to me!

Do whatever works, is what I say.

Todd

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Hey Todd and Co., I use xanax on occasion too, but only at night.  Otherwise, I'm too sleepy to do my job...at just 0.5mg.  It doesn't take much.  Then again, I tend to be a light weight in terms of the effects of drugs and alcohol.  I can pull a good drunk on 4 Coronas  :) 

Todd, I'm glad that, in the absence of your kids, you at least have other friends and family to talk to.  I do think it is so important.  Yet, I tend to be the opposite. Though I'm surrounded by family and friends, I don't really talk to anybody about my situation, whether cancer, finances, marital or whatever else I may be dealing with on the inside.  When people ask how I'm doing, I just say "fine thank you".  And other than the snippets I've shared on CSN, I don't air my dirty laundry on social media.  It's not that I'm all that private and don't want anyone to know, it's just that, I don't think people really care as much as they let on.  I think people feel obligated to ask and I never want to be someone's obligation.  I have always been the listener, the supporter, the person other people come to talk to when they need an ear or a shoulder.  I can give advice, i just don't practice what I preach.

I think that's why I'd love to see a therapist.  I wouldn't feel like I was imposing on a therapist.  They'd have to listen and interact with me.  And I wouldn't care so much about what they thought about me.  I've wanted to see one for years, long before my cancer.  But, to see a therapist, I'd have to, 1, stop denying myself and admit to myself that I no longer want to go it alone. And 2, share my innermost thoughts about it, with my husband.  He is the epitome of supportive, no question.  But, still, I don't share my private hell with anybody...ever.  And, I certainly don't want to appear fragile and weak.  So, I stay strong and stay private, keeping it all in.  Been this way since I was 7 yrs old.  It's worked for me thus far.  I haven't gone off the deep end, am not depressed (other than getting the blues from time to time) and I have never turned to hardcore drugs and alcohol to self medicate.

Hubby, kids, co-workers, friends, family...none of them have ever heard me use the word "scanxiety" or "NED".  Nor have they witnessed my anxiety prior to scan day and, in fact, don't usually know when I have scans.  I just do it on my own. 

Anyway, Next Wednesday will be here before you know it and you'll be celebrating, come Wednesday evening.  Good for you for declining work on that day!  It's something you can feel in control of and since we can't control the outcome of the scans, we gotta take control in anyway we can.  So, kudos! 

Hope you all have a great day!!

Patches (fox dubbed me patches and I kinda like it Wink)

 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

You just described  me to a T.  Glad to know I'm not alone.  I'm a retired nurse, so I guess it's my nature to give to others and keep myself to myself.  I've considered therapy but never acted on it.

connie, from the uterine board

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Connie, I guess the phrase "I'm gald to know I'm not alone" translates to,  misery loves company.  It's strange because I know you'd (we'd) never wish emotional or physical ill-being on someone but when we find ourselves battling such afflictions, we hope we aren't alone.  It's a bit twisted when you think about it.

I am not a nurse but the mom/nana in me dictates that I take care of everyone else first, before myself.  I think it's just how us women are wired.  Maybe moreso when you've been a caretaker your whole career.  It's almost easier to put yourself on the back burner.  Kinda like people who clean houses for a living, don't want to go home and clean their own house after dealing with someone elses mess all day. 

I wouldn't mind finding a support group that meets on a weekly or monthly basis.  I've looked around my area but have'nt found anything that suits my needs.  There are plenty of survivor groups and technically, cancer didn't kill me so, that makes me a survivor but, I sure don't feel like I am worthy of that title.  I'd feel like a bit of a fraud, trying to fit in with those that fight the cancer battle every day.  My battle is all in my head and likely self induced. 

Food for thought, I suppose.

Hope you have a great weekend!

Sindy

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Thanks for the supportive posts.

After posting a few times about others with similar problems, I've been thinking abou that saying "Misery Loves Company" and noticing it made me feel better to hear from others. That saying is really pretty non-judgemental. So I was wondering why it makes me feel better, and it seems to be clear for me that part of my feeling really down when I have a problem is because I tell myself that I'm the only one like that, and then I feel lonely and maybe even weird or cursed. Of course I don't wish those bad things on others, but it does help me feel like I'm just part of the human race when I know others have similar problems and those people aren't weird, cursed, or crazy: they're good people that have just had bad things happen to them.

I've been seeing psychologists for many years. I started about 15 years ago. I'm on my third one, but this one I've been with for like 12 years. He's really good. I have to say, that I tried to find another (because I have to drive 1 hour each way to see this one) and I had a hard time finding one that was ok. It can be difficult to find a healthy, ethical, well adjusted, and competent psychologist. It's not to say they aren't there, but you do have to try them out and if it's not working, move on. There are so many kinds, too. It's a daunting task.

I did try some support groups. The one I found was very far away, so I didn't stick with it. The best thing that came out of going, was I met another RCC survivor and we became friends. Now we have lunch every 2-3 weeks. He's very different than me. He doesn't know his type of RCC, what stage it was, etc. In fact, he didn't read his pathology report. He says he knows it was pretty serious and he's just letting the doctors handle it. In a way, I admire that.

Anyways, I plan to be ok with "misery loves company" and not add guilt into the mix. :) That's my plan anyways.

Todd

 

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

I have nothing else to add - sounds just like me! You have articulated so much better than I ever could have. I have also been thinking about some form of counselling but not sure whether it would be helpful as I saw a psychologist once after mets discovered but thought it was a fruitless exercise.

Cindy, hope you are feeling much better after your surgery.

Sue

PS Todd hope your scan is a good one.

 

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Hi Sue, I am about 75% recovered from my June surgery and it looks like, I'll be having more surgery (same reason) this fall.  Tough pill to swallow, still trying to choke it down.  Not sure how much more my stomach can take.  Thank you for inquiring about me.  I hope you are doing good too.  Any recent girlfriend retreats? 

I wondered what kind of therapist one sees for issues like mine (I have more issues than tissues, it seems).  I guess unless one NEEDS a psychiatrist, they would see a psychologist, but are there different types of psychologists?  I wouldn't even know where to start.  Once there, I'm not even sure I'd know what to talk about or where to start. It all seems kinda scary.  And, call me crazy but, my fear of being labeled "crazy" keeps me from seeking help. 

They say time heals all so, maybe I'll just wait it out.

Happy Friday!!

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

More issues than tissues? That's funny.

I've a friend who is a psychologist. He says about some people/clients among his peers, "That guy/gal has really big shoes". That's how they refer to it.

A little crazy never killed anybody. Can be kinda fun. Lol.

Happy Friday to you all too!

Todd

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Todd, thank you for this posting. I have been away and not had access to the computer, but I have been thinking of everyone, and missing everyone. And your posting hit home as to whyI love this group so much.

Firstly, I was also stage 3, but grade 2. I have my next scan late in October....which brings me to one year since the cancer was discovered. The doctor said they will then just give me an ultrasound once a year. I don't feel comfortable with that.

I have found that I am worrying a little more about my health- but say nothing to anyone. I have conflicting feelings that I am a bit of a fraud as cancer was all contained and no other treatment was needed (I know a lot of RCC survivors have the same feeling about that). My sons have never even asked what stage my cancer was. But I chalk that up to lack of experience and knowledge about cancer. My oldest has really done more about being involved in my life. My youngest, well, he has his own problems. But things have improved with him, I am happy to say. But who knows why children of this generation are the way they are. I also carry guilt for destroying their traditional family unit because of divorce. My new husband has 4 sons (from ages 16 to 22) that he never sees due to the parent alienation that his ex has been instigating. We have gone through years of legal battle that, so far, has been futile - not to mention financially crippling. My husband's salary mainly goes to his ex (that is what we are trying to change - he lost his job and his new job only pays 2/3 of his former salary, but he is still paying according to his original higher salary). However, the youngest son showed up at our doorstep a couple of months ago, and we hope that is a sign that things are turning around for us. I keep trying to be strong, try to be optimistic, and keep a sense of humour, surround myself with good people - and you are all a part of that group of people.

Now I am in the final days of summer holidays, and I am finding myself more stressed, worried and anguished than ever. Driving home from the campsite (I was driving alone) I sobbed all the way home, and I cannot pinpoint what exactly I am so sad about. I wonder if it is time to see a therapist. I am dreading going back to work. I have a new boss coming in who is very intimidating and he reminds me of my ex-husband - not a good thing! hahaha!  So I am applying for a couple of jobs that have come up. Not sure if that is the answer, but I am a big believer in if it is meant to be, it will happen.

As usual, I digress. But you people always make me feel better and it is good to just let it all out!

Here's to better days ahead for all of us!

Hugs

Jojo

 

APny's picture
APny
Posts: 1948
Joined: Mar 2014

Jojo, you’re doing the smart thing looking for other jobs than the one you have with an intimidating boss. On top of everything we have to deal with the last thing we need is stress on the job. So I hope you find a good job with a nice boss. I also hope that the legal battle over your husband’s support of his ex is resolved so that’s one less thing to be anxious over. Hugs!

twinthings's picture
twinthings
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Joined: Jun 2013

Hi jojo!  So good to see you again.  I've been MIA from the boards for a while but think about you all everyday. 

First and most importantly...an ultrasound once a year???  Are you kidding me??  Are those people crazy??  I'm not a doctor and even I know that is not sufficient screening for someone with stage 3, regardless of the grade.  I'd demand better care!  If you don't, know one will on your behalf.  No one will ever be as concerned about your health as you are so you have to fight, bite, scratch and claw your way through the medical hoops if you want the very best care medicine has to offer.  If you don't feel comfortable with that (and why would you), there's a reason for it.  Listen to your intuition. 

As for your other son, I'm so happy to hear he's in a better place.  I know how you worry about him!  You sound like an awesome mom.  As for the guilt of divorce...you gotta let it go.  I am a firm believer that kids would rather be from a broken home than to live in an unhappy, tension filled home.  Probably easy for me to say, having never been divorced but I do know what it feels like to come from divorce so, I am somewhat experienced with it, just not as a parent.  That said, even with a relatively happy 33 year marriage, I still find plenty of things to feel guilty about, in terms of how I raised my kids.  Things I didn't do but should have.  Things I wish I'd done differently.  Things I wish I'd never done at all.  Pretty sure that makes us normal.  And, to say that you destroyed their traditional family unit implies you did it alone.  I highly doubt that.  It takes two to tango.  So, don't be so hard on yourself.  And don't let that excuse your sons behavior and poor choices.  He's a grown man, right? 

I wish you luck in finding a new job.  Someone will be very fortunate to have you...then you can tell your other boss to suck it!!  That ought to relieve a little stress, huh?

Hope you have a good weekend, jojo!!

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Sindy, you always know exactly what to say. Your words brought tears to my eyes. Thank you so much for your undying support. And thank you for pointing out that I am not the only one at fault for a failed marriage. I literally escaped from him in the middle of the night with only my clothes. I guess that is why I take the blame - forgetting his abusive nature was the reason that I fled!

And Todd and all you others, thank you as well for your care and concern. It certainly is great to have you to share with.

I finally made the jump and booked an appointment with a therapist. My first appointment is tomorrow. I also have a job interview tomorrow morning.

I go to a Uro-oncologist - the best in the province. But I live in Ontario, Canada. We have paid medical care and they have their guidelines. BUT when I go for my next scan I willl talk to him about it. I also might bring my girlfriend instead of my sister. She can be a dog with a bone, while my sister and I are made of the same timid cloth! Note: I was scheduled for an ultrasound for my next scan instead of a CT scan but since there was a lesion found on my liver, they decided to do one more CT scan. This is absurd. Another note: I live in Ontario, one of the richest provinces in Canada - but guess what? I found out that if my cancer spreads, the meds are not covered here. They are in a lot of other provinces, but not Ontario. (thank you Neil for making giving me a heads up). That has upped my anxiety about the cancer coming back. I have decent insurance through work, but I plan to retire in 2 1/2 years....no insurance then. My hubby has insurance through his work, but it is not a very good one. When I went to the first urologist when they first discovered "Arnold" the tumour, he said to me, if it is stage 4, you are done. I was floored and thought he was mistaken, but finding out what our health care is in Ontario, I am beginning to see the validity in his statement.

Again, thank you from the bottom of my heart for all your kindness and support.

Hugs

Jojo

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

You are such a doll, Jojo.  I can't imagine anybody wanting to harm one blonde hair on that pretty little head of yours!!  I'm happy you escaped the madness of that bully you now call your ex.  He didn't deserve you. 

Was so glad to hear that you are seeing a new doctor.  It's a step in the right direction.  And what about that job interview?  How'd it go?  Any luck?  Any bozo can see you'd be an asset.

Hope you're having a great day!!

 

xoxo

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todd121
Posts: 1425
Joined: Dec 2012

Hi JoJo,

Glad to hear from you.

I'm pretty sure with Stage 3, an ultrasound once a year after year is not minimum standard of care. The national cancer instituce/nhi has standard of care guidelines I believe online. I'll try and remember to ask my oncologist when I see him next week. I've seen him look them up and show them to me on the web. If you can, see an oncologist with some experience with RCC (or even minimal RCC experience, or a good medical oncologist willing to look into it).

I know people around me don't understand this cancer (or most cancer, really). So I need to be understanding of that.

My sons have issues with our divorce. I certainly wasn't a perfect father, but I'm ok with myself. At least I wasn't abusive like my father was. I know I only meant my sons good, and I didn't do the constant name calling, threatening, physical violence, and constan belittling that my step father infliced on my brother, sister and I. I did a lot of good things for my kids. I suppose I thought they might be grateful, but that's not up to me and I can't control it. So I let it go. Try to. Lol.

Wow. Step mother to 4 boys. That's a challenge. Parents can really turn their children against the absent parent if that's what they want to do. In the long run, kids grow up and I think most figure out what happened if they are interested. I'm reconnected to my birth father after not talking to him for 35 years and realize he's not as bad as my mom always made him out to be. So it's possible that things can heal, even after that long.

Glad to see you back on board.

Todd

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DonMiller
Posts: 109
Joined: Feb 2013

JoJo

OK I'm a bit jealous of your grade 2.  Seriousily, I agree with Todd and have never heard ultra sounds in lieu of a CTScan with contrast after such a short time. I was scanned every three months for the first year and now every six for life.  I am techcially a patient at Sloan but have my scans done here in New Jersey. I would speak with a renal oncologist when you have a chance.

DogRescuer's picture
DogRescuer
Posts: 52
Joined: Feb 2012

Todd, I'm so glad I'm reading your post and all your replies today.  I don't come here too often any more, but I could sure relate to all these issues!  In early 2012 I was diagnosed and had a nephrectomy for Stage 3 RCC.  I get scanned every 6 mos and thank goodness my dr sees me right afterwards to tell me the results.  'Cuz I have 'Scan-xiety' big time.  It's always a Xanax day.  I had Stage 2 breast cancer 5 yrs ago and was prescribed Xanax for the 'bad days' and it's been my best friend ever since.  I don't take it often, but it sure helps when I need it.

My kids are in their early 40s and live relatively close to me.  I had back surgery (which is how they accidentally found the kidney mass), live by myself and can't do much bending or lifting, but it seems difficult for them to break away from their busy lives and families to offer to come help, unless I ask.  My daughter quit talking to me shortly after my surgeries and I had a really difficult time dealing with it.  (Apparently, her husband told her I had the wrong tone of voice, when I called for her once!)  Anyway, I found a psychologist through the American Cancer Society.  She was great as she was experienced in leading cancer support groups and even had cancer twice herself.  I saw her for a few mos and it really helped.   So there are counselors out there who specialize in helping folks deal with health issues.

I agree that this generation of kids just aren't the same as when we were growing up.  I seem to be criticized for the smallest infractions, while other family members get away with murder with no consequences.  It makes me so sad.  Hearing all of your stories though has really helped me though.  We tend to think that the issues are all our fault (my personal repetition is:  how could I raise such a heartless kid??)   Both my parents died before I was 12 and I'd have anything to have a few additional minutes with them!  

So thank you all for sharing!!

Hugs,

Linda 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Doctor said everything looked great. Nothing interesting.

I didn't get the result at the doc visit as I usually do. Sometimes they are busy and the radiologist didn't get a chance to read it by the time I have my appointment. I wanted to wait until I had the report in hand before I shared the news. Just got it today via email (Friday).

Of course I'm happy about it. Thanks everyone.

Todd

Srashedb
Posts: 482
Joined: Dec 2013

Todd:

so glad you got good news; we had to wait a bit for the chest scan because the radiologist had to read a lot of them.

enjoy the weekend,

 

Sarah

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sblairc
Posts: 586
Joined: Feb 2014

Glad to here it, Todd. 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Terrific news, Todd.  Congratulations!

Eims's picture
Eims
Posts: 423
Joined: Feb 2013

Fantastic news Todd.....delighted for you.

Eims x

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Hip hip hooray!!  So happy for your good news!

aamdsi
Posts: 284
Joined: Apr 2014

Wonderful news Todd!  

hope that news rubs ofF on me in 2 weeks

 

laurie

DonMiller's picture
DonMiller
Posts: 109
Joined: Feb 2013

great news.  I was counting on you.

icemantoo's picture
icemantoo
Posts: 3221
Joined: Jan 2010

Todd,

 

Sounds like a good excuse for a beer and pizza.

 

 

Icemantoo

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Thanks everyone! I actually took myself out for large beer and mexican food. Nachos are sort of Mexican pizza, right? :)

Todd

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Great news Todd! Time to CELEBRATE!

Hugs

Jojo

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