surviving survival is not easy

[sunnyqld2013]

It seems the after effects are sometimes worse than the cancer, my husband is now cancer free, but now suffers from Neuropathy of the face, cant eat, cant sleep, nearly cant function now,

[sunnyqld2013]

Its not easy to get on sometimes,

[sunnyqld2013]

Hi Silly, That is so true, surviving the after effects of chemo & radiation for my husband, has be horrendous, now he suffers from neuropathy pain in the face & head, no relief in site, cant sleep cant sleep cant function daily at this point.

[sunnyqld2013]

Hi Ron50, You are the 1st person ive heard, talk about Neuropathy, my husband has it in the face/head & its driving him insane, ?

[Ron50]

Hi Sunnyqld, I am sorry your hubby is in so much pain. I can say I know how he feels but it is different for every one of us. We all have different thresholds on pain and long term pain brings with it depression which just seems to magnify the pain. I have been on methotrexate for a few months now. I had to go off it as the pain from the neuropathy became unbearable. My rheumatologist checked my records and I had reported a similar flare the first time I was on mtx years before. I find I react poorly to most drugs now. Going off the mtx has resulted in a flare in my psoriatic arthritis as well as the neuropathy. I have been referred to a neurologist. He was upfront and answered my questions honestly... Whatever nerve damage I have will not heal... It is the same deal as the arthritis, any treatment will be to stop the progression of the disease. None of it stops the pain from existing damage. I have tried lyrica ,Neurontin and endep. They are all dangerous . Some you can't just stop as you risk seizures. You have to wean off them. I am going to ask one of my doctors to refer me to a pain management clinic. Perhaps I can learn to ignore it. Ron.

[sunnyqld2013]

Thankyou Ron50, Yes my husband has had 3 spinal op,s in the early 2000 so he does know about acute pain management, already has anti depression as a result of this, had heart attack in 2010, followed by a few hiccups the last 2 yrs. Finished cancer treatment in Dec 2012, best news he has been giving the all clear now. We thought thank god, but seems life has dealt another blow with the Neuropathy, hubby has a high pain level & still he has been brought to tears with this side effect, going through cancer treatment, was a walk in the park compared to this at the moment. Back to the Nuerologist on wed, but it seems there is no sun on the horizon !

[Jules2]

Sunnyqld Not sure as to what everyone has said to you as am too tired to read it all today,however, one of the women on here uses a small massager and managed to get some relief from her ongoing discomfort/pain. For me I find that taking magnesium and vitamin d has worked for my muscular aches and pains and pretty much live a normal life these days. THere is a head and neck cancer group on this site and also one in facebook that you may find helpful. Take care Julie

[Starcee]

Sunnyqld I have Neuropathy in my feet and hands. About a month ago I was diagnosed a new drug for the pain "Lyrica". I don't know if it would be of any help, but you could ask your Doctor. This is the first pain treatment I have had that actually works. Take Care Starcee

[Ron50]

Things are not going well for me at the moment. I have had to go off methotrexate because of a major flare in my neuropathy. My rheumatologist sent me to a neurologist. I told him I had severe peripheral neuropathy in both lower legs and my left hand and asked what was causing it and what could be done to stop its progression. He organised nerve conductivity tests, halfway thru the tech called the doctor in. He verified her results ,very little conductivity in the right leg and no signal in the left. He told me I had severe sensori-motor peripheral neuropathy. He can't help me and he does not know what is causing it. $600.00 for nothing. My gp decided to get me to wear a 24hr halter heart monitor after a cardiograph showed my ventricular ectopic beats seemed to be getting worse. I got the results today , In 23 hrs 32 min, I had 10229 ventricular ectopic beats ,60 single atrial ectopic beats ,on 190 occasions they were double or triplets and on one occasions my heart beat wildly for 14 seconds. There were problems with flat t waves and depressed lateral leads. I will be seeing a cardiac specialist in a couple of weeks. My gp is of the opinion that my internal wiring has been severely eroded by the chemo I was on resulting in short circuits everywhere. Really helpful as I don't know anyone who rewires human bodies.... Ron.

[Karinise]

Huh? Just to get the facts straight here Its a John Mellencamp song "Jack and Dianne" with the lyrics "Oh yeah life goes on / Long after the thrill of livin' is gone!" I'm a Joe Camilleri fan and have been to see him live soooo many times and watched him play that beaten up old pink saxaphone, Harley and Rose does not have those lyrics Please don't insult him by confusing him with John Mellencamp. He is a lovely friendly down to earth Aussie who will take time out to talk to you no matter who you are, but did not sing that song which I don't like anyway! I have 22,000 songs on my ipod and I have Harley and Rose and and all his albums from Jo-Jo Zep to Bakelite Radio but Jack and Dianne ain't one of them! 🙂 Some song lyrics that have some sense to them and I find comfort in them sometimes "The Cure" "Where the birds always sing.