surviving survival is not easy

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Re: surviving survival is not easy

There are so many people surviving cancer and to those outside all looks ok but it seems there area variety of side effects . Some are evedent to others ,e.g. cahanged appearance from surgery but most not so . Surgery,radiation and chemo do change many forever .I've seen radiation described as the "gift that keeps on giving". It could be said of chemo,I guess,too. If these side effects were known to people I wonder how many more would choose not to try ,especially when the prognosis is not expected to be much better with the treatments . Still ,the effects can vary with individuals having a similar treatment as other factors can come into play.
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Re: surviving survival is not easy

Hi Ron50 and Silly, I thank you for your comments. I met with my oncologist and he is looking into the foot pain! Thank the Lord! I really want a good quality of life but must admit I want that to be for many years. I appreciate the info on meds and I am much more critical in my acceptance of meds than I was when originally diagnosed. I sometimes wonder if I'd do chemo or radiation again or even have gone the mastectomy route instead of the lumpectomy. But I did do those things and I guess I need to keep looking forward to what's left to do instead of what I didn't do. People can't appreciate the worry and pain that we go through and it's something i don't want to bring up with them again and again. I do chat with my closest friends but they still don't get it and how could they until they are here. I didn't get this even in the beginning. Experience is a necessity for a clear perspective isn't it? Hope to you both that you become more pain free everyday! survivorsays!
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Re: surviving survival is not easy

Looks like I am now paying for my stubborness for refusing to take any more immuno-suppressants for my kidneys. I have been off the kidney meds,last one was methotrexate ,for over a year. The last 24hr urine collection indicated my protein loss was getting close to three gramms a day. I have been waking up nearly every night unable to get any air. It's like coming up from under water ,grabbing a big breath,but nothing happens. I went to my doc about it. He sent me for a scan on my heart and lungs. I have so much fluid around them that I cannot breathe and my heart is struggling to pump blood. It's oedema from the protein loss. He has put me onto strong diuretics,I was already taking them in combo with one of my bp meds. I see my nephrologist in Jan . Looks like it is going to be a case of choose your poison,cyclosporin,cyclophosphomide,immuran or humira. Surviving sure ain't easy.....Ron.
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Hi guys, This was perfectly said, from the Black Sorrows song - Life goes on long after the thrill of living is gone! It is very hard to deal with the survival, aches and pains, fear and night mares...and why we don't just go back to normal when everyone around us know how to do it and tell us 'be strong and you'll be all right' 'be positive', does anyone know what exactly that means? How lucky we are to have this place and share our thoughts with each other, at least :). Wish you all the best! Hugs, Vlasta
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Thanks Vlasta, I read a lot of life in the lyrics of songs. We cancer survivors are like Simon and Garfunkels boxer,we are the sum total of every hit we have ever taken. I have been struggling with life lately what with the pulmoanary oedeema and the endless chronic dihorreah. I did a bit of a review of my survival. I know I react to most drugs but the chronic dihorreah has seen me taken off some drugs that were actually helping,methotrexate was one but the dangers of chronic dihorreah when you are a renal patient means stopping the drug. Remembering back It was not till my gallbladder op that my chronic dihorreah really started. I was not happy after the operation as my symptoms ,right flank pain and billious attacks never stopped. I was given some b/s reasons as to why. I have been doing some research on gall bladder removal. It seems that for ten percent of patients the surgery does not resolve the problem. After the op when you eat it results in a process called bile dumping. Instead of the bile being conrtolled by the gall bladder the liver just dumps it straight into the gut. This causes chronic dihorreah particularly not long after eating. This happens to me a lot. I wonder why none of my docs never considered this after all ten percent of people is a large number. I am trying a remedy I was originally given for cholesterol. Normal statins break down my muscle tissue so I am on an old drug called lescol in conjunction with questran lite . I could not take the questran ,with all of my internal adhesions it put me in hospital with a blockage. I am taking small doses of the questran. I binds with bile salts and takes the chaolesterol in them straight thru the system . with a bit of luck it may do the same for my bile dump and give me some relief. I may even be able to retry some of the drugs I have been taken off.....Ron.
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Another year has ended and I am still cancer fee. that takes me out to fifteen years.Lots of other issues but still no cancer,hugs to all of you still in treatment... Ron.
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Well done Ron, i am so happy for you being cancer free after 15 years that is an amazing achievement, you give me hope!!! I hope all those other issues dont put to much strain on everyday life! Keep charging on!!
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Hi Ron, I have a "bowel cancer" gene and, even though I had my colon and half my rectum removed in my mid-twenties to prevent cancer, I was diagnosed in 2000 (after being checked every 6 months). I had stage 3 and since found out had 50% chance of survival and up to 5 years - I am still here. Since then I have had 3 more bowel ops, ileostomy in 2000 after chemo and radiotherapy, duodenum removed in 2001 due to polyps (due to gene) and then 3 years ago the next section. In 2006 my oncologist told me that in 20 years of practice he had only once had someone have their cancer recur after 5 post cancer years. So, the chance of cancer returning after 10 years is very remote. With all the bowel ops that I have had, my digestion leaves a bit to be desired. After one of my regular gastroscopies (every 6 months) I was put on Nexium - wonderful for indigestion, etc., but then I had the "great" luck of getting an extremely rare side effect of kidney damage and am now at stage 4 kidney failure with about 4 years at the most before the next step. Survival is not an easy thing, but I always try to remember the alternative, death and then things look a bit better. Sorry to read about your marriage, my brother (no longer here) also had his wife leave him due to his illness. Life can be very unfair. Good luck with your precarious health, craftyone
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Re: surviving survival is not easy

My heart goes out to you...as far as payments go,get your dr to keep writing medical certificates.A least you won't have to go to work each day..eventually someone will believe you.good luck
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Hi Craftyone and Margo. Craftyone thanks for your post. You make me feel well. I am sorry that you have so many issues. I feel for you with the kidneys. I am holding my own with most of my kidney functions but my protein loss was around 4.2 grams last test. I have been put back on methotrexate to try to reverse the trend. I don't like it as it reminds me a lot of5Fu I had cor ca chem. Ihave some other issues arising from l/t chemo side effects. I have been dxed with congestive heart failure and pulmonary oedeema. My heart is enlargen. I had an echo cardiograph and a stress test. I have some calcification of valves and thickening of the walls , they also picked up an ectopic beat. I can skip a beat from every second or third to once in a while. The heart tester said it is not normally a problem except for someone with my risk factors. Hi Margo, Thanks for caring. I have been self employed for years so certs don't help. I do what I can to get by.Ron.
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