surviving survival is not easy
Thu, 22/03/2012 - 21:23
I was dx in 1998 with aggressive stage 3 colon cancer. I lost quite a bit of my colon and had six cancerous regional lymph nodes amongst the thirteen removed. My surgery was followed up with 48 weekly doses of chemo enhanced every second week with 9 tablets of levamisole,an anti-parasitic cattle drench. My surgeon did not believe I could beat the cancer,too aggressive,too many lymph nodes, you may make three years with chemo.
Well for whatever reason, I did not die as expected and I am now past 14 years. I was 48 at dx. I was not well off financially so I returned to work at 3 months post surgery. It was tough working whilst on chemo but you do what you have to. Since ca I don't drink or smoke (haven't for 30 yrs). A couple of years after chemo I started to get really fit. I was walking an average of fifty miles a week and lost34 kg.
I don't think I have ever felt worse. I finished up in hospital and was dx with acute pancreatitis. The cause was a small black stone from my gallbladder blocking my pancreatic duct. I lost my gallbladder soon after.
I no longer have gallbladder but now the stones are forming in my kidney and I regularly have bouts of renal colic(kidney stone attacks). I have had three kidney biopsies to find out why my kidneys leak up to three gramms of protein a day. 150mg is the max for normal kidneys. I have been dosed with high doses of prednisone,methotrexate ,sulfasalazine ,arava,lyrica,neurontin and any number of drugs to treat severe psoriatic arthritis and peripheral neuropathy.
In the midst of all of that my wife got sick of me being ill and asked me to leave. I did,so now I live alone. I applied for a disability pension but they insist I am not ill ,so at age 62 I have to get thru a weeks work just to keep a roof over my head.
Has ca changed the way I look at life,certainly...A good day now is when nothing really bad happens..
I have had discussions with my kidney and joint specialists. The kidney guy doesn't know what caused my problems , the rheumatologist on the other hand is an ex oncologist and believes that chemo and subsequent immuno-suppresants and steroids have left me in my current state. It doesn't really matter what causes it ,it's not going away. At the moment my gp is a bit worried about rising blood glucose levels so soon I may have to add type 2 diabetes to my resume. At one stage I used to worry about dying now I worry that I might go on living.
There is a line from the Black Sorrows song harley and rose.Life goes on long after the thrill of living is gone! I guess that says it all. Ron.
Wed, 28/03/2012 - 07:08
#2
Re: surviving survival is not easy
Hugs Lizzie,
I agree that survival is just the word that we have chosen to describe ourselves. Those who have fallen through the cracks wold be a more appropriate description. Best wishes for a healthier future and the hope that they can control the lyhpodemia soon,I know they are doing some in depth research on it in austarlia at the moment,Ron.
Wed, 28/03/2012 - 07:12
#3
Re: surviving survival is not easy
Thanks so much Ron50 I have another appointment with the physo again to help move the fluid.. thanks for the hugs lovely indeed...
Tue, 10/04/2012 - 21:19
#4
Re: surviving survival is not easy
Yes I am a survivor and recieved good results and I have my story on line but it is not easy to recieve a diagnoses as it is so hurtful to me. Thanks. Glenys 0.
Thu, 03/05/2012 - 23:51
#5
Re: surviving survival is not easy
Ron i would just like to say thank you, i was diagnosed with Colorectal cancer aged 29 in June 2010. I am a mother of two young children with a loving husband.
I think every day it scares me that this may come back! I did all the treatment, had the operation, there was three lymph nodes involved out of 18 taken so that is a good result however i cant help but wonder if this ugly thing is going to rear its head again and screw up my life!
So thank you for giving me hope yet that i will live a long and happy life.
I hope for you that your life becomes pain free without diabetes as you have been through enough without having to deal with that too
Kind regards
Stacey
Fri, 20/07/2012 - 08:11
#6
Re: surviving survival is not easy
Thanks Stacey. I was officially dxed as type two diabetic a few weeks back. My gp believes that although I have the build for it ,it does not run in my family, the 18 mos of high dose prednisone is what finally was the last straw. I am managing it ok. I still don't know what is going on with my kidneys. My protein loss is still between 1.5 and 3 grams a day. The problem is that my biopsies show that I have a problem but it does not fit in with any known diagnosis. My nephrologist merely refers to it as an auto-immune disease of unknown type. Both he and my rheumatologist want me to go on humira ,one of the biological arthritis immuno-suppressants. I have decided not to go there. Every drug I take has had some serious side-effects ranging from liver to strange skin cancers. I have gotten used to the pain and the neuropathy. Fatigue is one of the issues I struggle with. I can't seem to get a good night sleep and often wake in panic. I have been tested for apnea but apparently I don't stop breathing but do stop absorbing enough oxygen. I think it is low oxy causing the nightmares and panic attacks. Life goes on.....Ron.
Sun, 22/07/2012 - 11:23
#7
Re: surviving survival is not easy
Ron,you have been through such a tough time . It seems to me that you deserve to go on a disbility pension. Living with all this pain and illness must be so hard . My thoughts are with you .
Fri, 27/07/2012 - 12:19
#8
Re: surviving survival is not easy
I'm stuck. Should be so grateful for everything I have and that I'm still here but the chronic pain is driving me bonkers. No one seems to know why my feet hurt but they do. Makes getting up and moving around undesirable but if I just gave myself a kick in the butt it would feel so much better to just get moving. ARGH!!!!
Sat, 28/07/2012 - 07:43
#9
Re: surviving survival is not easy
Hi Survivorsays,
I am sorry that you are in pain,it's not fair and it's not fun. I remember asking when I had chemo what the long term effects of the drugs were. My onc at the time replied that they don't know and they don't really care, when they find a drug that kills ca and does not immediately kill the patient ,they are obliged to use it and deal with after effects later. Well it's now later and they aren't doing anything.
When I finished chemo I had no neuropathy or pain. I was advised to become physically active to help prevent recurrence. For nearly two years I walked 40 to 50 miles a week. I finished up really ill with acute pancreatitis and lost my gallbladder. I kept walking but had to give up as I lost touch with my feet and legs.
I caution everyone to beware of some of the drugs that they prescribe for neuropathy and arthritis. Some of them are as bad if not worse than the chemo drugs. I was on high dose prednisone for a year and a half and I would rate it one of the most dangerous drugs commonly prescibed. I give it credit for my type two diabetes,osteoperosis and lower back problems . It leaches calcium from bones at high doses and the dangers of it are just not stressed enough by doctors. It also thins blood vessels.
I have given away all of the auto -immune drugs and now get by on standard pain killers. I hope your pain issues can be resolved quickly,Hugs Ron.
Sat, 28/07/2012 - 10:52
#10
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.
Wed, 01/08/2012 - 01:20
#11
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!
Wed, 24/10/2012 - 07:24
#12
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.
Fri, 23/11/2012 - 17:21
#13
Re: surviving survival is not easy
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
Sat, 24/11/2012 - 09:44
#14
Re: surviving survival is not easy
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.
Tue, 22/01/2013 - 07:22
#15
Re: surviving survival is not easy
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.
Tue, 22/01/2013 - 08:26
#16
Re: surviving survival is not easy
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!!
Sat, 26/01/2013 - 08:20
#17
Re: surviving survival is not easy
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
Wed, 20/03/2013 - 02:29
#18
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
Wed, 20/03/2013 - 07:29
#19
Re: surviving survival is not easy
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.
I feel the pain here four years and four different cancer and three different types of treatment all with surgery and stitches some with good out comes and some still in my mind. Surviving is just a word that the english thought would be appropiate. I feel that with all i have gone through and what is left to go through is not easy. I to lost a husband through my long battle with him not understanding cancer and being left with lyhpodemia in lower body and neck life suxs....
Thinking of you ...