surviving survival is not easy

[Ron50]

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.

[lizzie1040]

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 ...

[Ron50]

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.

[lizzie1040]

Thanks so much Ron50 I have another appointment with the physo again to help move the fluid.. thanks for the hugs lovely indeed...

[glenys48woods]

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.

[Stace]

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

[Ron50]

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.

[SILLY]

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 .

[survivorsays]

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!!!!

[Ron50]

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.