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New to the Long-Term-Survivors group

RJC-still-vertical's picture
Posts: 14
Joined: Jan 2012

I'm new to CSN as well as your group. I posted on the Head and neck cancers group first, because that was where my cancer was. I was first diagnosed and started treatment in June of 91. Chemotherapy and Radiation to my non-operable squamous cell cancer at the base of the tongue. Probably went through much of what everyone else did that didn't have the time for any pre-treatments (dentistry) prior to going through the treatments necessary to put the cancer in its place. That however left many future complications that I had thought I had finally overcame until this last year. Those complications have now taken away my ability to consume food or fluids orally I'm NPO (No food or fluids) for the rest of my life. My latest visit to the throat specialist confirmed what I thought and probably feared to an extent, the damage from the radiation to my throat, its mussels, and all the viable areas that aid in swallowing is so extensive that there is no surgery that will ever allow me to get back to taking another swallow of anything with out doing extensive damage to my lungs because of aspiration, so much so if I ever try to take food or fluids orally again it will probably end my life. So I now have a GTube (Gastric Tube) placed into my stomach and now take all my nutrition, meds and fluids through the tube. I was using a bag and pump method, but it frustrated me terribly so I chose to do Bolus pushes using a syringe. my Doctor wasn't really pleased about this, but said that as long as I'm tolerating the formula and that I'm sticking with the same amount as prescribed then she would go along with it. Guess she'll really hit the fan when I start finding ways to supplement my formulas with a more (blender friendly) natural formula. Just can't resolve myself to having to pay for formula that cost more than the payment on my Motor Home and since I'm not old enough for medicare and my insurance won't help with the cost, getting free of a prescribed formula is going to be necessary sooner or later. I've already contacted a nutritionist and found that its feasible to blend my own from store bought foods so I'll give it some time and then once I'm stable start experimenting.

Thought I'ld get with you guys and see if there is similar experiences and how your doing with any new adjustments. Also I thought that I might be able to help others with surviving long term by providing them some of my experiences and how I coped these many years. Also thought that if anyone was looking for coping alternatives they might come to those that have survived for a while and see if they may have some suggestions.

Looking forward from hearing from everyone.


Marcia527's picture
Posts: 2748
Joined: Jul 2006

I'm certainly sorry you had to go through that and have a doc who doesn't realize the cost involved. I was diagnosed with breast cancer in 2003 so it's been 8 years for me. Just wanted to say Howdy!

Posts: 2215
Joined: Oct 2011

I am new to this group as well. I have been on the colon cancer forum for several months since that is my brand of cancer. I am a 6 year going on 7 stage IV survivor. I have experienced 2 recurrences. The most recent one was last October. I have been fortunate enough to be operable each time so I am technically NED again.


ron50's picture
Posts: 1729
Joined: Nov 2001

Ivé just posted 14 years ca free and the auto immune side effects of chemo have sure impacted on most of what I do or try to do. You sure have waded thru some crap to get to where you are. As for coping I can see by your picture that you have already discovered one of the best aids to ca survival,yep Fishing. You might get mad ,frustrated and a whole bunch of things when you are fishing but cancer,never give it a thought. Stay well my friend and tight lines,Ron.

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