ursol Posted March 24, 2009 Share Posted March 24, 2009 I often feel that I have not spent enough time on the site reading posts and catching up but then when I do read posts I feel soo fearful because it reminds me of all the things that are potentially around the corner. I guess I'm asking the folks in remission how they do it every day? I work so hard at staying positive, enjoying life, working, traveling, spending time with the kids and much more but once in awhile this fear grabs at me, the fear about what is around the corner. I feel it is inevitable that it will come back because I'm stage 4 and that is just the way it is but I sooo want it to stay away. Then I think I cannot ask God for that, "what makes me more special then the next person"....Anyhow I just felt like saying this today.. Lilly Quote Link to comment Share on other sites More sharing options...
Snowflake Posted March 24, 2009 Share Posted March 24, 2009 Don't view it as being more special then the next person. Everyone is special in their own way. When your mind darts down that alley, try to turn your face to the sunshine. Remember, cancer or not, some day we are all going to die. With this disease, we are a bit more aware of that very real end of the journey of life and we are reminded that we really do not know how many steps our own journey consists of. Stop counting the steps, make the steps count. ...and if you really find you need to have a pity party, have one. Set a time limit, flush that pity pot and step on. Hugs, Becky Quote Link to comment Share on other sites More sharing options...
AnneM Posted March 24, 2009 Share Posted March 24, 2009 I have that fear too, I think it's impossible not to. I'm stage IV too and was stable for 14 months until recently. For me, the fear has to be pushed aside every day so I can go out there and be a mom for my kids. I get my strength from them as I'm sure you get strength from yours. We all have to live for right now as we don't know what's to come. Anne Quote Link to comment Share on other sites More sharing options...
Patti B Posted March 24, 2009 Share Posted March 24, 2009 ((((Lily))))) I, too, feel that fear. I am Stage IV also. Some days I am so positive and so sure I will be one of the ones who beat the odds and then other days I am terrified if I will be here 6 months from now. I guess this just means we are being normal. But I sure don't like it!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Mary Corser Posted March 24, 2009 Share Posted March 24, 2009 I completely relate to those of you who have expressed your fears about lung cancer. My husband has lung cancer and has a pneumonectomy in January 2008, followed by 2 courses of chemo. He then had pneumonia so no more chemo but has been on tarceva since November 2008. He has recently been in hospital again with a chest infection and had to have fluid removed from cavity where lung had been. He is recovering at home and I am at work. I try hard to be positive but sometimes feel consumed by anxiety and fear. His oncologist has given me a poor prognosis but my husband does not know this so it is hard to remain cheerful with him. I keep asking him too often how he feels and, apart from hoarseness, he says he feels fine. He lost a lot of weight while in hospital this time so I am trying to build him up again. I try to distract myself but then these feelings of anxiety return. We have no immediate family, but good friends, but I fear for the future. Mary Quote Link to comment Share on other sites More sharing options...
carolhg Posted March 24, 2009 Share Posted March 24, 2009 I certainly understand the fear. I was staged 3A and had a successful surgery in 2005, and my scans have all been good to date. For a long time I lived in fear of the cancer returning. The more time goes by it seemed to get easier to handle, then I would read a post where someone who was in remission for seven years had the cancer to return. I get scared all over again. I start to compare signatures: size of tumor, stage, radiation, chemo, adjuvant chemo. You can stay on the computer for hours reading and researching. A couple of months ago I had a really bad cold or flu. The last thing that I want to do is to cough and then to wonder what the cough REALLY IS. Friends ask why do I go to a lung cancer support site and I no longer have lung cancer. They have no idea that I need to come here for the strength to deal with everyday life. Carol Quote Link to comment Share on other sites More sharing options...
beatlemike Posted March 24, 2009 Share Posted March 24, 2009 Carol,You took the words right out of my mouth. Quote Link to comment Share on other sites More sharing options...
SandraL Posted March 24, 2009 Share Posted March 24, 2009 Hi Lilly. Thanks for writing and getting our thoughts out there to share. I too am fearful. I have times when I am more fearful than others. Not necessarily for myself but for my family. I do not want them to have to go through my death. But, while I am alive, I sure don't want them to have worry and fear. So I try my best to put a brave face on so that think mom is okay. Recently I have found it more difficult to be positive. I am no longer working and am fairly housebound. With my dropped foot and my back pain I have lost a fair bit of my independence. But I know that I will have to adjust and figure out my newest normal and be as positive as I can with the cards I have been dealt. It isn't easy. Sandra Quote Link to comment Share on other sites More sharing options...
Ellen in PA Posted March 24, 2009 Share Posted March 24, 2009 Hi Lilly. My heart goes out to you, as it does to all the people here with young children. I don't know how you stand it, especially with all us old f*rts whining about our lot. But let me tell you something that really made me laugh when I was dx and that still brings a smile to my face. Right after dx, a mathematician friend of mine called to express his concern and then he said, 'But, you know, nothing has really changed in your life except a few probabilities. I mean, you still COULD get hit by a bus tomorrow -- THAT probability hasn't changed. It's just that you have a higher probability of dying from cancer than you thought you did a month ago.' Hey, that's how mathemeticians think, bless their hearts! So, now, 15 months later, whenever I think of what lies ahead for me (and I've never been or even fantasized being NED), I tell myself, 'Hey, you still COULD get hit by a bus tomorrow.' The bottom line is -- nobody knows the bottom line. Hang in there and enjoy every minute -- that's all any of us can ever do, cancer or no cancer. Ellen Quote Link to comment Share on other sites More sharing options...
Barb73 Posted March 24, 2009 Share Posted March 24, 2009 All of the thoughts on fear are a part of the lung cancer equation, or any other "nemesis" in our lives. They can have a hold on us, or we can have a hold on them. I have been on an online lung cancer support community site for over four years. It has helped me in many ways. When I first joined, I thought that Bill was a goner, for sure. Only one man convinced me otherwise. Fear is one of the issues that writing helps to put out there and allows us to see it for what it is worth. The only way fear can help me and Bill is to make us move on to the next treatment, or the next question to ask of the oncologist. Today, I went to a doctor for a sonogram of my abdominal aortic aneurysm. He said, "Come back in six months for a recheck it to see if it has grown." Should I worry? The only thing they can do if it grows larger than 5 cm (if it hasn't erupted in the meanwhile) is to either put in a stent (up through the groin artery) or to surgically repair it. Either way, the choices stink, and are very scary, including not being easy fixes. Throwing our days away for Bill and me is not an option. We need to live and enjoy what we have. Mostly, fear is a waste of precious time, and unless it moves us to something constructive, it does nothing for us, except cause useless anxiety. That being said, do I fear? Hell yes, but letting it out, and airing it - then, returning it to the "box under the bed" is just about all I can bear. I can always take it out again and reconsider giving it another look. All of your posts have helped me to realize how very much we all have in common in all of this. Love you all, Barbara Quote Link to comment Share on other sites More sharing options...
Mary Corser Posted March 25, 2009 Share Posted March 25, 2009 It has been very helpful reading all your thoughts regarding fear and anxiety, either as the sufferer or the carer. Geoffrey is having difficulty getting upstairs since being in hospital for 10 days as the muscles have gone in his legs and they are so thin. Not helped yesterday by tummy upset as we have no downstairs loo! But our local hospice here in Essex, U.K, are being very helpful and sending a commode round today plus a physio to assess his needs. Might need a stairlift fitted till he has built up his strength again. I am meant to be at work but staying home today to look after him. But I do have to go to work - needs must - so I am concerned that he might need some care at home. This is all getting him down at present and normally he is so positive and brave. I try to be but the anxiety gets to you sometimes, even at work, and especially at night. Mary Quote Link to comment Share on other sites More sharing options...
Snowflake Posted March 25, 2009 Share Posted March 25, 2009 Mary, You should see your physician and get a prescription for dealing with the anxiety. Caregivers have to take care of themselves, as well. I would suggest something like Xanax, a "Band-Aid" when you need it, but not something you have to take daily for months on end. Good luck to you, Becky Quote Link to comment Share on other sites More sharing options...
Maryanne Posted March 26, 2009 Share Posted March 26, 2009 I know how you all feel. Joel has had that monster come back 3 times. This is the first time that 2 CT's are NED. But of course in the back of his mind as well as mine is when will it come back. Hopefully, never! Joel is so positive he just won't let it interfer with his life even though he brings up to me once in a while that he does not know how long he has. So the fear is always there, we just have to live with it and hope for the best. This site has been a lifeline to all of us. At least we understand what the person who has this dreaded disease is going through and what us as caregivers go through. All I can say is one day at a time and live it to its fullest and don't get hung up on what could be. I know that is easier said then done. But we do have a choice of being positive or negative. I'll take positive anyday. We have each other on this site and that is a blessing. Maryanne Quote Link to comment Share on other sites More sharing options...
Mary Corser Posted March 26, 2009 Share Posted March 26, 2009 It is very comforting to read all the responses from other carers on this site. Thank you all so much. Sometimes I feel positive and at others the anxiety just seems to take me over, physically and mentally. My husband is mostly remaining cheerful and optimistic, despite the fact that he has recently been in hospital for 10 days with chest infection, then had 1.5 litres of fluid drained from chest cavity where lung was removed last year. This hospitalisation period has left him very weak and frail. He is so thin and the muscles in his legs seem almost to have vanished so it is hard for him to get up stairs. We are hoping to have a stairlift put in next week and he has seen a physio at the hospice today who will have given him exercises to strengthen his legs. I do hope that this will help him to regain his strength. Walking is fine but stairs are the problem. He still has problems speaking due to a lazy vocal chord, according to the surgeon, but should be having an appointmen for some speech therapy soon. Breathing seems better since the fluid was drained and he might have some more drained off next week. Will have to feed him up and give him build-up drinks in between meals. Mary Quote Link to comment Share on other sites More sharing options...
ursol Posted March 27, 2009 Author Share Posted March 27, 2009 Mary, Your husband will regain his muscles in his legs, it may not seem like it but little by little with every step he takes it gets easier. I spent two weeks on a respirator with no movement except the nurses turning me, they turned me (repostioned me every hour). When I awoke and was taken off the respirator I could not move anything, my muscles were all gone and I had to almost learn to walk again. A year later, I'm doing great. Stay positive. Lilly P.s..thanks for all for the comments on this string...it really helps to be able to come to this board and state your feelings so honetly. Quote Link to comment Share on other sites More sharing options...
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