Cancer Survivors Network

Guess when things are so stacked up one little feather can topple the whole pile. Thanks for sharing and validating.

Yup it was the mention that I did need some medical testing in a completely different area for me too, oh great - what's left that they haven't poked, prodded or snipped? Just the thought of yet another specialist and possibly more medical woes started it off then small stuff just couldn't be handled. The thing that really gets me with all this new anxiety though is that I don't feel it coming at all. All of a sudden I am just in it. I am sure there are warnings but I just don't seem to see them til it's like YIKES. That's what bothers me, how sudden it is just there. Know what I mean? Thanks for your input as well, sure wonderful to know I am not alone in this.

Hi Everyone. I think we could all write a book on dealing with depression and the last brick that makes the house fall in. In the normal world someone will say "move on". Everytime I hear that phrase I want to knock the person out who is saying it. Tell my saliva glands, taste buds, 1/2 sinus and dead facial nerves to move on. Or my meningioma brain tumor or neck that has fallen apart and causes constant pain. Along with my ruptured lower disc and torn knee legimate. The reality is many of us never get a break or a minute in the day without feeling some symptom or side effect. And any added problem is a reason for feeling like crap as we are already dealing with so much. Its so frustrating when we want to get just one thing fixed and off the table so the pile is not so high. And I have to keep all my problems seperated and not think of them together as its just too much at this point. I guess a good day for me is measured in seconds when something takes my mind off all my problems. Or those times when we can come on here and help someone that is just starting out their changed life during or after cancer. I guess its a pretty good measure of the human spirit when the people listed on this page who are going through so much, reach out and help others. Its actually quite amazing. So I guess we better find something good in our lives and get back to work helping those that are here searching for answers. Your all great people with so much experience be it bad or good and you have so much to offer those looking for answers. I pray God gives you that needed boost to get back on your feet and put a smile on your face. Slickwilly

Thank you Slickwilly, well put. For me though it isn't about depression but more of an anxiety situation of late. After dealing with all the issues surrounding my initial diagnosis 20 years ago, I just get a tad tired of it all as issues come and go and come again, round and round.

Hi Dreamdove. I hope something this weekend will get a smile back on your face. Its hard not to get down with tests. And it always seems to take months to get things settled and our life back in order. It seems like everyone was having a tough day today. While I am typing this I am talking to a breast cancer survivor who has a daughter with cancer. She is a close friend and the best I can do is tell her I love her and hope tomorrow is better than today. I also found out today that a neighbor has tumors all over the place. She went in for a simple exam and they found a lemon size tumor that appears to be ovarian cancer. Then they found tumors in her lungs and bones. She is heading to Chicago on Sunday to a cancer treatment center. So I guess I will suck up this bad day and remember it could be much worse. Sometimes I have to be reminded of that. So I will pet my dog, tell my daughter I love her and have a bowl of chili that I made this afternoon. Geezzz am I a good cook. Lucky for that as I can't do much else ha ha. Take care Slickwilly

I put the stupid test in perspective. There are so many people worse off than me on this website. Here I am in remission and I let the abnormal cells found in a pap test get me down. Last Dec. I had a bowell obstruction and thought the cancer had returned. Well, I'm still here. I like this website and recently told someone with breast cancer about it because you get so much support, info, and encouragement from other members. Thank you.

Glad to hear you bounced back from the 'stupid test' and that you are smiling again BUT don't get yourself into that 'there are so many people worse off than me' thingy because it's all so relative as to what brings us down, at any given moment. It isn't trivial and just because someone 'seemingly' is worse off than ourselves one little thing for us can tip the scale so don't be worried about getting whatever it is off your chest, this is the site for it as you have found. All the small little things, if bottled up, can KABOOM on us so if you are worried let it out here, we all understand. By the way, no test after you have had a cancer diagnosis is a 'small test', you were perfectly within the norm to be concerned about it. The trick is to mull it over, research if you must, then get on with things and not get stuck in that 'mulling' too long. At least that is what I try to do, sometimes more successfully than others. Take care.

Temporary setbacks - a memory of a part of the treatment, a reminder through a late effect, a new specialist, a rainy day - could be anything that sets one back on their arse at times in the cancer experience. Temporary setbacks seem to come in all shapes and sizes, some big, others not so much, they too shall pass. It just, at times gets a tad tedious. I'm a survivor, as the song says, the sun will come out - tomorrow, um well maybe the day after, lol.

I know the blues feeling too, counseling helps, and I've found it amazing and overwhelming how much other people want to help in any way they can. All you have to do is let them know what is going on. People really are wonderful if given a chance.
Cancer is such a stupid 'simple' disease, cells just start acting in ways they are not supposed to do. Someday researchers will find a cure, probably genetics related. And reduce cancer of any kind to the history books like they did for polio and other illnesses.
Anyway, hang in there. I try to keep the 'don't worry, be happy' song in mind whenever the sad feelings start. Corny, but it works.
Larry59

When that song 'Don't Worry Be Happy' came out in the late 80ties it took til the 90ties to get it out of my head. Thank you for bringing it back, lol. Well now I have something else to focus on, GETTING THAT SONG OUT OF MY HEAD TODAY, sigh. lol.

Yup people are truly wonderful if you give them a chance, this site is terrific for support, unless they bring up Bobby McFerrin songs, lol. Just kidding. Have a good day.

Hey Rick,

Yip that's what works best for me, drop everything, clear my calendar and get out the last 3 seasons of House. lol. Can't drink alcohol any longer but found a great Molson's non alcoholic beer that works for me. Having a little more trouble coming out of this downer this time but once I get some new tests they want me to do done maybe I will start to see the light again. That was weird. As I typed the thing about the light just now the sun came out. Hmmm. Everything for a reason? Anywho, thanks for your comments. God Bless

I really do...I know what you mean about those tests. Every time I have to have em, I also wonder what they might want to whittle off or out next. Don't push your feelings about it aside by thinking that there are so many others worse off than you...you're feelings are important and of course there are always others worse off. It doesn't make your situation any less important nor does it make it any less of a battle.

I was doing the same thing as you until I realized that cancer is just hard to deal with sometimes and we all have our own stories...each one just as difficult and important as the rest. I think we just have to sometimes find what eases our worries about it...what rests our spirits for a bit so that we can gather our strength again to keep fighting.

I don't have a particular magic formula or anything...I just wanted to let you know that along with the others who've responded, I too understand where you're coming from on this. I wanted you to know that you're never alone with how you're feeling about it, like the others have let you know.

I don't know if it's like this for you or not but for me it's like riding a tide...the funks sort of ebb and flow. Right when I think I'm pulling out of it, some weird little thing will pull me right down again. I try to focus on the next upswing...just treading water for a bit until I can pull out of it again.

I CAN offer you a cyber hug and also some prayers if that's ok with you. Keep focusing on that sun coming out like that...I don't believe in coincidences, I do think everything has a reason for being.

All my best thoughts and wishes for you,
~NoQuiSi~

Thanks for the validation NoQuiSi. When I started this post heading that was the point I was trying to make, that people shouldn't feel as if they are 'whining' about their plight as opposed to others that 'have it worse', 'having it worse' is so relative and sometimes just a small thing gets us down as much as a bigger one sometimes does to someone else. It's all relative. That's why this site is so great, everyone gets that. The newer members in the 'cancer experience' often feel like they shouldn't be complaining as compared to other more 'difficult' cases but they need to know that it is all important to whoever is experiencing whatever in it all and it's okay here to say that. It's very empowering and validating. So often the doctors themselves say things like 'you should be happy to be alive' when you mention after effects and that is soooooooooooooooooooo not fair or validating - to put it mildly. More and more the docs are getting it though as they see more and more long term survivors so hopefully we will hear that less and less. If I run into a doctor who seems invalidating I always use the little bit of energy I have to 'fill him/her in' on validation so that the next patient in might not have to deal with the invalidation as I had to on that visit.

Thanks for your supportive words, well put.

I have a cousin who hadn't FAILED to continuously relate to me the story of how he was feeling bad about his situation with having a bad back. He then always went into the story of how he saw a man with no arms or legs and it humbled him into realizing he didn't have it so bad. Now, I understand the point of his story...I understood it all thirty or so times that he felt it necessary to mention it to me if he even THOUGHT I might be a little down about things that were happening to me concerning the cancer.

At first, I understood that his heart was probably in the right place and that he meant well but at about the tenth time, I realized it was something else. I felt like he was actually berating me and belittling me for allowing myself to have any feelings about the situation. THAT I didn't appreciate. He didn't understand at all. I tried to just ignore him pretty much when he'd start the story again...you know, the old 'grin and nod' while I thought of things to add to a shopping list for groceries or trying to remember if I'd fed my goldfish. This pretty much worked except for the last time. I decided it WAS the last time. Unfortunately, I no longer have contact with him.

I also understand what you mean about some docs attitudes and I think it's wonderful that you take the time and effort to try and make it just a little better for the next patient. Thank YOU for caring enough to do that. I'm certain there are quite a few patients who have you to thank for having a better relationship with their doctors and we both know that's so important in cancer care.

You're a special person, blue...

I guess we have all encountered a 'cousin' like yours who does that over and over to prove the point that others are worse off and therefore don't allow us to vent our issues. However, if someone has never been truly sick like we have with cancer, and all it's side effects, they really have no idea what it is like so go with the same time old scenarios and sayings to relate almost automatically. They just don't know what else to say because they truly don't understand. I think its a good idea to educate them subtly but I really think that most of them simply have no idea what we live with and how it all affects us, not just the first diagnosis and treatments but how it affects us over time both physically and emotionally. It sure is irritating though, I know what you mean. Some may just be self involved too and just don't want to hear about anyone but themselves, especially with the same sick story they might hear from us, but I truly think that most just simply are ignorant of our issues or just don't know what to say to us anymore. Have a good day and thanks for the posting.

Hi Larry, Thanks for the validation - especially this morning, haven't slept very well going back and forth with the prospects of more invasive tests. Starting to feel like a whiner here, you would think I would be used to this stuff after 20 years of testing but it seems like the more they want to do to me the more of a wuss I become, I think of it as a syndrome I think I made up that I call the 'beaten dog syndrome', you beat a dog or mistreat it enough and soon it runs at the sight of you or at the very least stays away and hides or bites even a hand that only wishes to pat or feed it. With people who have had extensive invasive treatments, for me anywho, I feel a kinship with that dog at times, like yesterday when even a kind and gentle doctor suggested two many more invasive tests. I feel like that this morning so validation was a good thing, thanks. One funny point about Bobby McFerrin, that was me that you were referring to as being 'irritated' by your suggestion of singing that song to lift my spirits and I wasn't irritated at all, I was just trying to be funny about it, thought it was hysterical. That's the problem with chat in writing or words sometimes, it's easy to take joking for being serious but that's not what I meant at all. The song does lift people's spirits. Anywho I wasn't irritated at all in fact it made me smile when I saw the suggestion of the song so thanks.

Thanks for the offer of emailing as well and I hope you see a quick recovery from your surgery. God Bless.

I did try to educate my cousin but he'd not have any of it...it seemed he was just intent on making me feel badly. The odd thing was that a lot of times, I hadn't even said anything about it at all, how I was feeling I mean. I don't think my behavior indicated anything to him...he just took it for granted I suppose but meh, the boy's got his own set of particular problems (if you know what I mean).

Larry59, I'm SOOOO very glad to see you here! I've been very worried about you.

Blessings to all,
~NoQuiSi~

Hi..........what happened? I laughed and joked all the way through chemo, radiation, pic installation and all the rest of that nightmare (Hell I even tried to like my oncologist).......Now I have finished and am just on the tamoxofen I have suddenly dropped into a major pit, I have always been an 'up' person but I now find myself on effexor (not helping at all) and really in a very bad place. Why now? Any suggestions more than welcome....... 'don't worry, be happy'...aghhhhhhhhh I will never get that song out of my totally repetative brain.. I does work tho (a bit)

Hi Tasha,

When I first read your post I connected with what you were saying because in the beginning many are very hopeful and want to just get it all done so we put on a happy face and yuck it up with the chemo nurses etc and talk ourselves into the fact that we are doing totally fine, no problem. But the reality is, of course, it is a problem and it is a shock to the system so in essence, although being positive is totally the right way to go, sometimes it covers up our true emotions. Then the drugs hit and the side effects of those might well unmask the true emotions causing this pit you went into. Even if the drugs didn't have anything to do with the plunge you had, very often after a traumatic incidence takes place there is often a downwards drift in emotions. While you were having the treatments all you could do was focus on them and still were probably in shock from diagnosis so it was enough for you to handle but after it was all done then the true emotions rose to the surface. Actually my husband went through this exact thing. He was left with all the caregiver stuff when I got sick so he was running around taking care of business and no time to really think about it all. After I was on my road to 'recovery' he had a full blown nervous breakdown, after the fact it seemed but because things had slowed down in treatment etc he now had time to think and it all came tumbling out. So, for you I would totally think about going to see a good grief counsellor because of the loss of your health, they can be very effective - don't wait til you have a breakdown. If you feel more comfortable with your minister at church or a psychologist, fine, but grief counsellors are very helpful. Often when we have too many details to deal with in a shocking experience, either patient or caregiver, we put on a brave face for others and ourselves but later the true emotions emerge when all settles down. It's common. Laughing and joking around is a great medicine during treatment but it can get carried away and mask our true feelings about the experience if it's taken too far. At least these have been my experiences. Hope all goes better for you in the days and weeks to come. Don't rule out the side effects of your meds as well, talk to your oncologist/family doctor/pharmacist regarding the possiblity of mood altering meds you are ingesting. Think about the therapist, they can really help get you to a better place. God Bless

I often read your postings on here and you usually make a lot of sense... But on this occasion I think you hit the nail right on the head. I will ask my GP tomorrow about some sort of councelling as I am rapidly digging myself into a deeper hole here. I guess the time has come to go off "Fly Past" and admit a problem. Thank you for taking the time to reply to me Julia

The only reason I, like most on this site can, 'hit the nail right on the head' with our postings, from time to time, is because most of us have lived the issue we are talking about and then can in turn validate others who are at different stages in this cancer experience. If you go through experiences as traumatic, difficult and life changing as cancer then I feel we all owe it to others, to share and try and help them get through the experience as well. I went to a counsellor at several points throughout my cancer experience and they helped me get through the bumps. I don't know why some people feel strange or shy about seeking counselling, it's the wise thing to do when we find ourselves 'stuck' in one thing or another. I am a firm believer in, right after diagnosis, patients being funneled into counsellors to let patients know, from the get go, what to expect, not only physically but emotionally as well, throughout the process. If they were connected right off the bat then they would feel less awkward about touching base again with that counsellor should the need arise. After diagnosis I was just plugged into physical resources but nothing to help me deal with it all emotionally. All the best with it Tasha, you are a survivor - you can get through this stage as well. Let us know how you are doing. The site is here for you. If you get a chance to come into our chatroom here you will find great support and validation there as well. Hope to see you there.

Thank you so much.... Julia X

Tasha, your story sounds very familiar. I was the same way as you as far as joking around and being very up. I still am very up, but in a much different way. For some people I think they are happy when something is being done about the cancer and it is being treated. Once treatments are done the fear sets in of it returning. I know myself I felt safe as long as I was having the treatments, once the treatments were done it was back to the unknown part of life again.

Exactly! Thanks Julia

nsquirrey, please ease up on youself. Help is available in all forms, even faith in God, even though I am an agnostic heathen. No matter what you have researchers everywhere are working on cures and it could come any day. Keep the faith. And rely on folks here this is a good support site. Please write back.....Larry59

Larry
Thank you for replying.
Wow, I didn't realize that it sounded that bad. I was truly just putting into words things I feel and need to find some sort of peace with in order to deal with it all. Perhaps I am more of a basketcase than even I realize(LOL). I would enjoy your take on other thoughts I have posted. I may really need to go for that therapy even I can't pay for it. I could add it to the list of other medical bills that are waiting in the hat saying pick me this month.
Hugs and Prayers
Shirley

Have you ever felt like you are floating above yourself at times and looking down on people talking to you about how sure they are you will be fine. They mean well, but they have no idea and I've come to the conclusion that they just don't know what else to say. I too was always upbeat and positive- and ironically just started going to church again after 25 years, when I was diagnosed. I have very down days, just last Friday, but can be fine the next. It doesn't make my situation any better but when I truly look around me at others there is always someone struggling with some physical problem that makes mine look like nothing. I try to remember the lighter days, watch comedies to make myself laugh and believe that time will get me back to normal...or at least close enough! After all these years of doing the 'manly' thing and holding back crying, I've found that it actually lets out a lot of the frustration and gets me back to feeling I can fight this thing faster. Hang in there because you have a lot of company.

I don't think anyone can understand how it feels to have cancer or be diagnosed with cancer unless it happens to you personally. This website is a great way for all of us to vent and have someone that truly understands how we feel and to know we are not alone. The second time my cancer came back I needed something to make me not have to think for awhile, I was definitely overloaded. I went to my doctor and his comment to me was "why is it any different this time?" I almost fell on the floor with that comment. Sometimes shutting down is the only way we can protect ourselves.

I would not put any emotion into what my/your doctor said. They are focused on their own particular day to day specialty and can't seem to look up at the overall picture. Mine is prostate cancer and all my surgeon can say is 'use it or lose it' like it is some kind of joke. Amazing that they can be around it every day and still not know how to deal with it. I have learned since my father died, my business partner went through a terrible cancer, and now mine that dancing around it is not the way to go. I appreciate, and hope I have become, the person that looks you in eye and talks directly about the issue. None of the 'you'll be fine' comments.

Know that we are all dealing with whether or not it comes back. Stay strong on most days and fight the thing. Shutting down on some days needs to happen, but overall lean on your own strength and push back- don't let a person (doctor) that treats your situation like another day at the office get to you. Remember that courage is not the lack of fear, but the ability to push past it.

nsquirrey,
If you have been upbeat most of your life, then good things have come to you. I try to keep that in mind as I deal with my cancer and not let the fact that it has happened to me cut off those feelings. This is a true test of your optimism and strength- we have all seen someone hit hard by life that can't get up. Be strong and get up when you are ready, gather your strength, put your hand on the ground, and push yourself up to face it again. Getting sad and down is to be expected with cancer. Getting back up just proves that you are strong, getting back up from a weak experience proves nothing- your buddies in the fight- Jim

All last week, I had been anticipating the removal of the accumulating leaves on my lawn, which I have been ignoring for too long. Friday afternoon, I came home from work only to discover them gone! One of my neighbors (and, I still don't know who?) raked them for me!

Sometimes, problems resolve themselves in the most unexpected ways.

Love and Courage!

Rick

borrow your neighbour Rick?

Jim
Thank you so much for your encouraging words. I have found that posting my thoughts and feelings here has helped me to put a lot of things in perspective. Just writing back to someone who is having a bad day can change my atitude. A light bulb comes on and you realize that You've had those same feelings and the encouragement you give to another person helps you as well. I'm doing better not great but everything I've read and written here has given me a better view of things
Hugs and prayers
Shirley

I started this discussion point back in October I think at a time when it was that overwhelming time for me that we have all discussed so often and from so many different angles. Climbed out of it with the help of the site and all of you and last week - KABOOM, back into it with the start of some lower back pain from HELL. Had no idea what the heck this was now, never felt anything like it in my life. Had to call an ambulance and off I went to the E.R. writhing in pain the whole way. Got there and started on morphine and after several tests and a CT oh joy of joy A FREAKIN KIDNEY STONE. GRRRRRRRRRRRRR. Just what I needed, another screwed up body part and yippee a new specialist to add to the list - a Urologist. The pain knocked me out for a couple of days on and off and it has gone a few days ago but I am just drained. Now the procedures are building up again, some still postponed from the last overwhelming grouping of them - colonoscopy, nail surgery, blah blah blah - tack on another procedure what the heck. So back into the world of overwhelmed, things have been at a total standstill since the stone reared it's ugly form. I am sleeping most of the day and dread the next docs trip, which is tomorrow, the Urologist - joy. Feeling faint at times when I try to do anything around the house, not sure why, just too much methinks. Not sure when I will be on next. Take care all, there have been some great postings, keep up the support, we all need it from time to time. Hugs all around.

P.S. FYI the ER doc told me that with lymphoma patients kidney stones are more common than in other groups, great. Sigh. He was going on about lymphoma patients not being able to process calcium in the same way or something but I was in so much pain I wasn't computing much other than in lymphoma patients it's more common to get the stones. Pencil in another after effect, anyone got a longer pad of paper? Sigh.

P.P.S. On the upside of this visit to the ER I have to say it was one of the better visits in I don't know how long. All went well from the fact that it was a weekend, usually not a good thing with all the eager young residents, to the ambulance drivers to the nurses. Even though I was in there for almost 8 hours things went smoothly which is pretty much a miracle since I overheard a doc say that there were no more beds left in the hospital at all, even ICU -all filled. He said that there were stretchers down every hall as well, sheeesh. I was lucky to get into the ER at all, if I had come by cab I would have been writhing on the floor in the waiting area no doubt but the ambulance got me straight in. Just a little aside.

I feel so lucky that today is a good day for me. Only one pain pill necessary. I truly wish that everyone here could have more good days.
Shirley, please keep up with optimisim as much as possible. There's a positive side to everything but sometimes you have to search deep for it.
And Cat, I know k stones are an extremely painful problem. Hope they fix yours quickly. Sometimes if you a very lucky they pass all by themselves, hope that's the case for you.
Any everyone else, I really wish there was some way to physically give hugs, pats on the back, offer an encouraging or comforting word. Guess this site is as close to that as we can come.
You folks are the best, hang in there, don't give up, and please let's stay in touch at least through this site. The chat room(s) are helpful too.

I am sooooooooo glad that today is a good one for you, we have to cherish those and try to remember them when we have a rocky day.

Thanks for your good wishes on my stupid kidney stone fiasco, since the problem started last week it seems my whole condition has changed - feel awful, pain has passed, but just generally feel so rotten. I wonder if the extreme pain changes you in some way, or maybe it's just the trauma of 'one more freakin thing'. Couldn't get to my specialist appointment today, can't seem to stay up for long til 2 in the afternoon - strange new developments since the stone. Odd. Anywho, this gives me a whole new take on the expression 'this too shall 'pass' ha, ha, ha. Take care Larry and hope tomorrow is just as good for you as today was. Hugs, Cat.

You know I think the K stone did pass on it's own with no problem or in fact I think they may well have dissolved cause it's going to be almost 4 weeks soon since the attack and nada has happened so I think you were right, they are gone. Whew. The ER doc said that for lymphonma patients, like me, k stones can be more common. Did I really need to know that? lol. Anywho I am holding a good thought that the little suckers are gone for good. Yowza they smart. lol. All the best Larry, Cat

Shirley-
If there is one thing I'm grateful for in getting cancer it is that it has reinforced to me how good and kind people really are. All of the posts back and forth are so caring that it truly touches me. It feels like each of us wants to reach through the computer and just take away the others pain. Wish it could work like that.
Hugs and prayers back at you- Jim

Jim
I can honestly say that last year during the worst part of this journey, when I was housebound, that having this site was a life saver for me emotionally. Being single and living alone is perhaps one of the hardest elements of surviving this disease. I had my family and friends to help and they were great but when I found myself feeling all alone and vulnerable it was this site that helped me thru it. The people in the the chat room were my saving grace. Now that the worst is over, so to speak, I'm finding that the discussion boards add yet another source of support. I've always been a homebody. My family which consists of my children and grandchildren plus the people I work with have been my contact with the outside world. I've always found it hard to go out into the world to meet others. I enjoy new people but putting myself in a new eviroment is difficult for me. I have had trouble over the years with anxiety and panic and even though I have conquered it to a degree it still lingers when it comes to putting myself in any new situation. I wasn't able to find any local support groups for cancer. It seems those types of groups are only in the city which is and was too far for me to travel. Like you there is a need to be able to reach out to the people I have meet here and only wish that was possible. It would be nice to have all of us in one big room for a big hug and lots of conversation.
Hugs and prayers
Shirley

We all have needed help being pulled out of the hole, now and again, and you are so right, the people on this site really know how to do that, up close and personal, cause they have all been there. No one but another survivor truly knows how it really is for us from time to time and we are so fortunate to have a place like this to go to when we need help and understanding. You, through this post, have given me the ability to take one more straw as well Holly. Blessings to you and yours. blueroses.

One of the hardest parts of having cancer is the inability to describe to family, friends and other supporters how you feel on any given day. People are so kind and want to help but they just don't understand. It just makes you feel alone. That is why I have found this site so helpful and of course everyone here wants to support everyone else. All I can say is to hang in, hope for good days, and try to just get through the not-so-good days. I wish the very best for you and everyone else here dealing with health issues.
Wish I had a better way with words because that is all we have to use to help each other.
Love to all Larry 59

What choo talkin bout? lol. You have a great way with words, and besides, we survivors have our own way of saying things that only other survivors can truly understand. It doesn't take many words for us to be able to relate to each other, that's the beauty of it all on this site. Keep on keeping on Larry. Hugs, blueroses.

Dear blueroses and Larry59, I'm havin' a great day! Know why? You guys took the time to make me feel understood, and that is all it took! Thanks so much!! I've been fighting this monster for over a year and it has gotten me down so low at times, but, all I need is to read your posts and know that you care. That makes all the difference in the world to me; My family and friends have been supportive, but, you know all the things that others can't ( emotionally, physically, psychologically) and that comforts me in a way that I cannot even express in words. All I can say is, Thank you, for taking the time to respond, for being so kind and supportive and for making this a very good day!!Love, Hollyberry

You know Holly, if we could bottle 'validation' it would put alot of drug companies out of business. It's so important and healthy to be understood, acknowledged and therein validated, so so important, not only in dealing with illness but in so many things in life as well. The great thing about validation too is not only does it heal ourselves but those who contribute to the process as well. You in turn have validated Larry and myself, and I am sure, all those who read your posts too. It goes around and around. All the best Holly, Blueroses

Before I had cancer (ovarian) I didn't understand how those with cancer felt, even my own mother. I could only imagine. Now, of course, I can relate, even to those who have different types of cancer than mine. People who were cancer survivors would approach me and speak to me when they saw me wearing my "cancer scarf." There was an immediate kind of bond there that I can't even describe. Often people who haven't had cancer try to minimize the cancer. They often assume because you're living your life, walking around, that you must have stage 1; that they caught the cancer very early. Alot of people don't even realize what you've been thru--removal of organs, etc. Like a laser zapped the tumors, no surgery or nothing. Maybe chemo. Everyone has heard about chemo. And then you not only have to stay strong for yourself but stay strong for others. They all want you to stay positive and strong. So, not to let them down, you force yourself to be "fine." Don't mention the nagging fear that it may come back--that's what you have to deal with everyday by yourself. Why burden others with that? It gets to the point where you end up keeping most of your feelings inside. So that is one of the things I like about this website. People can express their feelings, their fears. Plus we encourage and sympathize with one another.

Dreamdove that was a great letter so I don't need to add to it. Helping others is what its all about and unless you have went through cancer its pretty hard to understand all the emotional issues involved. Last Sunday when I was sleeping I held my jaw too tight. That set off 4 days of pain that my 10 prescriptions would not touch. My damaged facial nerve went into full revolt and it felt like I needed 6 root canals. So I spent 4 days with ice in my mouth trying to get the swelling under control. I can't expect others to understand all the side effects I deal with or how much pain they cause. So we just deal with it and move on. I sure hope this week is better than the last one. Some people could read these pages and think there are a bunch of complainers here. But I doubt we hear 10% of the pain people are going through daily because of the side effects of treatment or the damage from cancer. This is a pretty elite group of good people with big hearts that try to help others despite their own pain. Ya gotta love that. Slickwilly

I totally agree with you when you say that we only hear from about 10% of people with major side effects of treatment or damage from cancer. I think there are a couple of reasons for that, one being that they are guilted into thinking that they should be grateful that they are in fact alive from the treatment and think they are whining if they talk about side effects that are keeping them down. Of course we are grateful but the fact remains that the price we pay sometimes for our lives can be great indeed. This has a huge impact on us, trying to get back to 'normal', as you well know Slick. I also believe that those with side effects from treatment simply don't realize that their health issues are from the treatment/cancer itself. The medical problems are often blamed on getting old (like chemo brain) muscle and nerve neuropathies etc. If they knew why they were having the difficulties they could in fact reach out to others like us who experience these things and could so benefit from the feelings of validation they would get in return. I wish this site was more widely known amongst cancer survivors, I believe it would truly help them as it has helped us.

I feel alone a lot too. I hate having to explain that I don't fear getting cancer again, but the thought of getting it again is with me all the time. I'm being tested again by my gynecologist, a not regular test. Every time I get tested I am hit with a depression. I'ts not because I'm worried, but because I have to deal with it again and think about it. My husband just doesn't understand. He criticizes my feelings and only wants me to be positive. Sometimes I just burst into tears. I don't always know just why. It's so frustrating.

As long as I'm still breathing, you will not be alone. When you go to your appointment, I will be there with you in spirit, holding your hand and giving you a big cyber-hug! We all have people in our lives that cannot understand or are to afraid to face losing us but, that does not mean that you have to face this all by yourself; all of us care and are here to help. You are in my thoughts and prayers and I hope that helps just a little bit. My husband was in denial of my dire situation (mucosal melanoma with multiple metastases) for at least 6 months before he finally could face it, but he did and is now so very supportive and kind. I hope yours will also come to terms with your situation and validate your feelings, so you don't feel so alone. If you need to cry, by all means,cry! It helps, but, when you dry your tears, smile!! You have more friends than you know! We're here to help. Much love, Hollyberry

When I was reading your post here about never being alone in appts because of all those on this site who validate us all, each and every day, I realized that since I came to this site I am a different kind of patient when I visit a doctor's office. Because of the validation of people on this site I can clearly state my issues, usually side effects of treatments and the cancer, and back it up with comments to the docs that let him/her know that there are many others like me reporting these kinds of things. That is powerful ammunition. I remember that a few months back I was visiting my family doctor for my regular monthly appt. and she said to me 'you know I am seeing alot of these same side effects in my patients who have gone through the same kind of cancer treatment that you have.' She said it with such astonishment it was nuts, I said ' You think?' and just gave her a half arsed smile. She got the point. We have been telling them for so long but finally, now that the numbers are adding up - so many reporting the symptoms, we are now being validated - still too slowly for me but at least it has begun. I think that those who were diagnosed and treated as children, those survivors who are adults today, really paved the way for the medical field to realize how great the side effects can truly be. Many procedures have been modified over the years because of them and now that there are so many successful treatments for cancer and we who were diagnosed and treated as adults are living longer and longer the medical profession is now recognizing the issues of side effects and longevity. Ha ha fooled you, we are still here, now what are you going to do with us? lol

Blue, you really made a great point. Sometimes our docs don't understand how debilitating neuropathy or joint pain or nausea can affect your quality of life so dramatically. I'm glad you spoke up to your doc and explained your situation so succinctly; I did that last week with my onco and he almost fell off the chair when I told him we need to get some of these side-effects under control. He was just looking at the CT results and was very pleased with my progress. When I told him the neuropathy, bone and joint pain were really getting me down, he brushed my concerns aside and said I should take warm baths and wear 2 pairs of socks! Wow- that's a treatment plan! I told him to help me, so that we could get through this clinical trial and really find a cure! His reply? "O.K., let's do that".I really hope that all of us ,together, can bring some first-hand knowledge and wisdom to all of the medical community and make treatment easier for the next guy. Wouldn't that be awesome!?! I would love for them to see us getting that 100th Birthday card from the White House, wouldn't you? Talk about validation!And thanks for the chuckles, I love your style, Hol

You might think about telling your oncologist that next times he has a migraine or some other debillitating owie, forget the medications or treatments and just use this gift basket. In it should contain 2 pairs of socks, bath salts and try to find a copy of that book that was written a few years back about a doctor who treated patients poorly but then developed cancer himself and how his ideas changed about patients and their treatment and invalidation - in a hurry. Dang can't remember the name of that book. Anyone out there remember that book? It was written in the mid to late 80ties I think, possibly early 90ties.

I read that book, too, but cannot remember the name or the author, sorry. Nothing against oncologists (I have a wonderful one) but they want to succeed at their jobs. It's also a numbers thing. The more patients they have in remission, the better. It looks better for them to have a high success rate. So they don't particularly want to hear the negative stuff. They feel we should be grateful they have us still alive.

A 1991 film with William Hurt as the insensitive cardiologist who develops throat cancer and learns what it is like to be treated with indifference by members of the medical profession. (It is available on DVD!)

The Doctor (1991)
Starring: William Hurt, Christine Lahti Director: Randa Haines Rating: Format: DVD

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Love and Courage!

Rick

Well aren't you just a fabulous source of info, thanks alot - it was driving me nuts just couldn't remember the name of the book. That's right it was William Hurt in the movie and yup he was a cardiologist not oncologist. Thanks again Terato.

Wouldn't it be fun to fill that basket? Hmmmm.... a buoquet of "Sorry, I was running a little late"for your life-saving, superhero doc, A gift card for your new phlebotomist, who just blew your fourth vein, a beautiful porcelain bucket for your chemo nurse who just said "You should be happy, the doctor just lowered your dose of Carboplatin!" ( I'm ecstatic, only 2 Zofran for me today, yay!!), A nice, new lead vest for your radiology tech (atfer all, they are so helpful in reminding you to drink alot of water to flush your system- Only a 3,00 year half-life now!).Just kidding, I know we're all grateful for our healthcare teams, it jsut seems a little sensitivity training would make our lives just a touch easier, don't ya think?

Of course we are all grateful but it's true, a little sensitivity training would sure go a long way for a lot of them. I wonder if it's even mentioned in med school?

They are focused on keeping us alive and sometimes forget the humanity issues. Getting information is like pulling teeth sometime. My counselor says doctors take it personally when they can't save a life or ease side effects. All we as patients can do is talk to our doctors and try to explain our feelings, physically and mentally, and work with the docs to understand what helps. Most will listen and try to help.

Thanks for the reminder, Larry. I see my OncMan today for a followup and I am really nervous. I'm one of those suffering major depression and need to see someone, I guess. I'm hoping he can recommend someone local for me to see. I read about everyone elses cancers and I feel so ashamed that mine has been relatively "easy" thus far. Surgery and chemo and was "cleared" in mid-October. So, WHY am I so down!? Just before my last chemo treatment I started smoking again. AAARGH!!! One would think I have a death wish. Anyway, I am having a devil of a time stopping and wondering if anyone else has gone through this? I feel chained to it ... sort of like it's the only thing left of the "old me". Does that make any sense?? If anyone reads this and "gets it" I would love to hear from you.
Blessings all around ... Maw

Maw, I know exactly where you are coming from.
I don't smoke, but with me it's FOOD.
I am a 3-time survivor and an Educated Woman.
But I still can't eat right.
I KNOW what I should do, especially in regards to the
'sugar' issue, but I feel like eating whatever I want
whenever I want is my last avenue of self-indulgence
and I NEED to give myself SOMETHING.
I would imagine that smoking would be similar.
Or maybe it's something different for everyone.
I just keep thinking I am not going to live forever
anyway, so why not enjoy life in some little INNOCENT
way, like 17 ginger snaps this afternoon? LOL
Hugs. Zah

One thing to remember Maw is that no cancer is ever EASY. The diagnosis of cancer is the same no matter what the type or what the situation. It's scarey as he-- and to be 'ashamed' that you are reacting how you are is ridiculous. Anyone who has been told they have cancer go through the same fears and worries as the next guy with it so please don't feel like that.

As far as the smoking is concerned, smoking is most probably a crutch for you - a comfort action no doubt. Some people eat too much, comfort food, when they are stressed and you smoke. If you are also depressed right now you will naturally move to smoking more often as people who are addicted to food move to food. I don't believe anything in excess is good for us and maybe you might talk to your doc about doing some hypnotherapy to help you quit smoking but cancer is stressful bigtime and you are being a little hard on yourself all the way around I think. You can't drop a long term habit right at the most stressful time of your life but I know you know that smoking won't help your health either. When you get your depression under control through a doc and maybe some therapy then maybe you can begin to lose your smoking habit as well. Cancer and it's treatment take away most of your energy and to think that you can also dump a major habit like smoking then too is a tough one, especially a habit you have used to lean on in times of stress, it goes on and on. I don't know about how smoking might or might not interfere with the chemo process, you might want to ask your doc about that. I am not trying to say it's okay to continue smoking at all but I am trying to say that you shouldn't be so hard on yourself for continuing to do it during one of the most stressful times in your life, as I said before. If you could find something you can do instead of smoking that is healthier, when you are stressed, or if the doc can get you something to at least reduce the cravings that might help right now. All the best.

It's true that many docs will listen and try to help but what is important on this particular link is to remember that it is okay to talk about the experiences we have with docs who aren't so humane and get it off our chests. It also helps to write about those negative encounters with docs with no people power so that others will see that they aren't alone and it isn't just them who had such a poor experience with a physician or nurse. That's the beauty of this link, we can openly share the good, the bad and the ugly and get that much needed validation on our feelings throughout the whole cancer experience.

I just learned from my primary care doc that what the first 2 radiologists believed were tumors in my gallbladder are not, but my oncologist just looked at the report and said he was happy with my progress; no mention of the gallbladder. I really like the guy but, I do tend to get a little frustrated with the way he presents info and advice. I suppose personal style plays a part, also. And I was a bit thrown the other day when I called my nurse and the clerk told me she had quit and moved to the other side of the country; they don't have a new nurse yet,so I have to contact the girls at the desk and they will leave a message with the doc. Hence the cynical little ditty on the gift basket; I know you guys understand where I'm coming from.
MAW, I just ate a 2 oz. piece of white-chocolate almond bark- whatever gets you through the day sometimes, my friend!! Sometimes comfort aces good judgment. I think we can all tell you stories about just getting through the bad days, but tomorrow is a new one and maybe you will have the will-power to quit smoking then.Hang in there, you're not alone

I want to thank all you responders. It really does help to know I am not totally whack-o. As an update, I saw my OncMan yesterday and he was (surprisingly) very sympathetic about how depressed I have found myself. Gave me the name of a counselor who apparantly is getting very good reviews from other cancer patients. I'll call today and try to get an appointment. I have high hopes that if I can just get over myself a bit I can direct some energy toward getting off the smokes again. I need to talk through some of the guilt about being a survivor and figure out why I feel so unworthy. So many folks are so much worse off than I am, and have endured such horrors in the battle we fight. Somehow, I have just not been able to snap out of it ... you know? (Of course you do.) Thanks again ... and keep fighting the good fight. I'll try to hang in there with you. You're all in my daily meditations.
Blessings and hugs .... Maw

Maw, and others, I too have severe depression on top of the cancer. I have found face-to-face counseling helps with a psychologist. Psychiatrists apparently are just drug dealers these days and don't actually do verbal therapy much.
Anyway my point is that in my case anyway I smoke and I have told my docs that's probably the one thing keeping me sane. Why give up something that you enjoy even if it is not good for you?? It seems everything is bad for your health but something is going to kill you no matter what. I refuse to be bullied by docs who have the easy suggestions of "stop smoking" or "stop eating high-calorie desserts" or "stop eating fast food." I am going to enjoy the time I have left and don't care one little bit about experts' advice. They are not the ones dealing with the emotional knowledge that you have an illness that is going to take your life. So screw them all and enjoy whatever makes you happy!!!!!!!

Good for you for looking, and finding, a counsellor - especially one who seems to know their way around cancer survivors - that's fabulous. I am sure that in time he/she will help you realize and understand your feelings. We all can indeed relate to not being able to 'snap out of it' but always best to check that the depression doesn't go too far. You won't TRY and hang in there with us you WILL hang in there with us. It never ceases to amaze me at how cancer patients and survivors have so much strength in them to go out and seek the help they need and get the answers they want. Look at you, so many things to think about and worry about but still you push on and find the help you need. Congrats Maw, you are a true survivor. Blessings, Blueroses.

Thanks, BlueRoses. The best I can do is just "keep on keepin' on" ... and I will ... Maw