Calling all NPC Starters & Survivors

frank10g said:

NPC
Hi All,
I was diagnosed with stage 3 NPC last November. I didn't have a bleeding nose but my left ear was blocked for months, I didn't have it check because I thought it was nothing. Then I had several lumps on my glands under left and right jaws. That was when I went to see an ENT in Singapore. In South East Asia, this is the 4th most common CA. The Doc told me that one new NPC patient is diagnosed every day. He said the cause usually is because of one of this: Race (parents from South China), smoking (I stopped 15 years ago), diet high in salt (as in salted fish or egg, common in Asia), EBV virus. I thought I had a pretty healthy life style before this happened. I run 10K 3 times a week and drank healthy juice every morning (mostly fruits juice). Finised my treatment on January 10th and feeling pretty good now. I can eat all kind of foods but they don't taste as good, my taste buds have come back to 50-70%. My mouth is still dry and have to carry a bottle of water everywhere I go, the mucous has improved and can sleep through the night. My diet now is 95% vegetarian, I drink wheat grass juice instead of fruit juice and eat lots of grain in brown rice instead of white rice. No sugar and sea salt only.

I have met several other NPC patients and the survival rate is pretty good, especially if it is caught early.

Frank

janymac said:

Gosh, you all seem to know
Gosh, you all seem to know your radiotherapy inside out - I haven't a clue if mine were full or part radtions - we don't get told things like that. In fact during my time with it all, it was not routine to give chemo as well, they did it to me as I was only 35 with a young child. Seems perhaps it is standard now.

I had a lump on the side of my neck , which I thought had gone, only to find out that it had got so big it had felt like it was part of my neck, so my diagnosis was by chance when I had tonsillitis and my throat swelled up to gigantic proportions as my cancered lymph nodes tried to also deal with the infection. I was so convinced he was going to tell me all it was was an infection that when he said the lymph nodes were cancerous, I actually said "no- you are not meant to say that, you are meant to say I have an infection"! I felt really silly afterwards. I have to say though that at first I was treating it all no more serious than if I had a chest infection and since you are thrown straight into treatment, I didn't really feel anything much emotionally until after it was all over as was so dissappointed that it took so long to recover, I think I had my reaction afterwards rather than at the start (if that makes sense!)I had so much expected my self to pick myself up and carry on as normal as everyone else seemed to following cancer, but reading this forum I now know that you have all had a difficult post recovery.The fatigue is really hard to make any effort some days.

I think with side effects, you have to remember that I had a hyperreaction as my body started to close down during treatment and is very rare, so would hate everyone to think all my side effects would happen to them. Although lots of people get back their saliva, I have only in the last few months had a little bit of something than cannot really be called saliva, but is a distinct improvement for me and have always got a drink of some sort next to me.I have had some teeth damage as my front four teeth upper and lower, were turning black and I was very self consious. My dentist took the black bits out and filled them rather cleverly with white fillings. Also, in the early days they all felt a bit wobbly, but that settled, most of my fillings fell out which was a real problem as don't know about you all, but my mouth does not open wider than a couple of centimeters now so the dentist doesn't like me calling!! I also have sinus, hearing and balance problems, although the last only now shows up when I am really tired, or not concentrating.

Swallowing is still a problem and cannot naturally swallow any solid food unless it is soft and covered in gravy or is soup so have a peculiar way of eating so that I can now eat many foods (including potato chips)in my own way. I have discovered that it is all down to having the right fluid to drink with the meal, and having the right combination of textures on the fork before you put it in the mouth (e.g. meat on a fork on its own I cannot swallow, but put it with a bit of potato gravy and a moist vegetable on the fork, then I can eat it. I take a medium sip of water while the food is in my mouth to mix it up and wet it so it becomes really sloppy, and then a bit more to swallow it with. I find hot drinks go best with bread and cold foods, use water for hot foods - for some reason it makes a big difference to me.I used to be the first to finish a meal in my house, but now I am the last to finish.There are some foods I won't attempt to eat, like a raw apple or carott, but also find my self eulogising about custard and gravies. Cooked mushrooms are a godsend.

Just found out my carotid arteries - the ones in the neck -got damaged, but not sure yet what that means as it seems to be different to carotid disease. It might just mean my carotids no longer look very pretty, but have to go to the doctor for a chat.

Can i just point out though despite the list of problems, I have found my self a new niche in life with a career change from nursing, which I am no longer fit enough to do , to being a full time librarian and have just completed a degree in librarianship.Although giving up nursing was a big thing for me as I had trained hard, now feel well settled with my change of career and back in control with my life.It has been a bit of a haul, but have felt better than I have done for a long time. Just started singing in a choir, despite my hearing and voice - not too sure I sing in tune anymore, but I am enjoying being alive and my social life is cranking up too.Life is good.