Hello gang, Hope you are all progressing well. My question: I am [...]

Hi @cocobud, sorry that you are still dealing with side effects and fatigue! I am one of the moderators here and have messaged the other members of the head and neck group to see if they can share their experience with you.

Hi Co co bud!...welcome to the team. I a 54 year old male from NZ. I too had all your symptoms. At the time of treatment i felt as alive as i could be even with stage 4. After 37 rounds of radiation and 6 rounds of cisplatin chemo things changed dramatically. I entered a phase of what i deem the living dead. Could not sleep much at all...my brain felt like it was exploding. .23 hours a day...and every bone in my body ached and throbbed perminately for 4 months. I thought many many times through day and night i was about to die. I cried endlessly. Had terror dream...slept with a small light on...as i became terrified of night times.
After approximately 4 months from the end of treatment things started to become normalish. I was weak and totally skinny looking.
Started moving around the house all be it like a zombie. I ventured out side exercised. Started a normal life...after 6 months. Life was completely back to normal 9 months after treatment... i felt awesome. 12 months after treatment I was devadyayed to be informed i had stage 4 lung cancer thay had metastasized from head and neck cancer.
I was told it was terminal. I eas further told with treatment chemo... i would live a further 2 years....without treatment 1 year.
I'm now just a few weeks away from this 1 year death sentence.
As i refused chemo.
The great news. ..the entire year i lived live easily and without any problems whatsoever and even went back to work lifting tons of meat each day.
My goal now is to live for another 40 years. ..however i hurt my shoulder quite severely and over the last 3 or so weeks things have completely reverted to the suffering i went through almost 2 years ago.
At the moment its winter here in NZ. My out look is survival... I believe i will most defiantly get better. Its said that what ever you think in your head. ..your body will follow...my head says i will live so my body must do as it's told.... and fix its self. And this I believe is exactly what's happening...all be it a bit slower than i would like.

So dear friend heads up keep smiling and will yourself to live. Read lots of research on the net. Eat proper foods etc and make sure your hydrated. Remember you are what you think you are....im alive ad well and getting better each day...and do are you...
kindest regards to you coco.

Dale, thanks much for your reply. Your encouraging. I had a visit with top doc today. He said my problems are not from treatment. He suggested looking elsewhere
As a child till now I've had ADD and also got severe RLS. . But back in the 50s docs always said you;ll grow out of it. It was the 50,s. As an adult I have always been optimistic , Positive. Any suggestion.

Hi Coco!<br />
<br />
Yes I think I have loads of good news for you.<br />
<br />
The Internet is your answer.<br />
<br />
When you get stupid answers to your sensible questions...it's time to take<br />
matters into your own hands.<br />
Usually you get stupid answers because those that you ask. ..simply do not<br />
know and they hope to pass off their ignorance by trying to make you think<br />
it's you that's the fool...when this is clearly not the case.<br />
<br />
Your ADD problem can and should have been fixed long before now.<br />
<br />
In the past the mental institutions with many normal healthy<br />
individuals...put their by who?....<br />
<br />
Did these people make the correct decision in committing normal people to<br />
assylums? ...answer. ..of course not.<br />
<br />
Just because one person says to another there's no hope doesn't mean there<br />
isn't any...<br />
<br />
During my research I came across some info that ...NIACIN...may help your<br />
affliction...immensely and other such products.<br />
<br />
Google and YouTube for answers to your questions it's so simple...coco!<br />
<br />
Reasearch research and Reasearch until you find what exactly your looking<br />
for. ..<br />
<br />
When you find it try it out...you have nothing to lose. While your trying<br />
out your find...keep looking for other alternatives to your same<br />
problem...until you have 10 or 20 good sound alternatives for the same<br />
problem.<br />
<br />
Don't be fooled into thinking that if it's not a pharmaceutical drug that<br />
the medicine will not work!!!<br />
<br />
For example it took the British admiralty almost 200 years to admit that<br />
native tribes and the cure to scurvy. ..in the mean tie it's estimated that<br />
perhaps millions of sailors in both navy and merchant navy died needlessly.<br />
<br />
WHY?... because basic savages...could possibly have an answer that the<br />
British medical fraternity and admiralty couldn't find an answer to.<br />
<br />
The Dutch navy used what had been offered by the savages. ..and their<br />
sailors never died of scurvy.. pyriginol or pine needles was the<br />
cure....and alternative for the same problem was if course the citrus lime<br />
and lemon.<br />
<br />
Anyway dear friend. ..if you require further help please do not hesitate to<br />
ask.<br />
<br />
Remember if you give a man a fish. ...he will eat for a day. Then he will<br />
be back to you the following day for another fish.<br />
<br />
However coco....if I teach you how to fish. ..you will feed yourself for a<br />
life time.<br />
<br />
I intent to teach you how to fish! ...how to find the answers you seek...<br />
<br />
Kindest regards<br />
Dale<br />

Hi, I suggest a book that my help you that I am reading Beating cancer with nutrition by Dr Patrick Quillin, I'm an Australian on watch and wait for lymphoma now for 2 years no treatment as yet, more information you can get the better.

Beau, thanks for the read.

Dale, Much thanks for your wise words and your encouragement. I understand<br />
what your saying and will follow that, and keep very open minded.<br />
I will be in touch my friend.<br />
Thanks<br />
<br />

Hi Cocobud! Sometimes just reading through Cancer Connect entries some ring so true even though they are not related in any way to my own circumstances. Yours was one that hit me between the eyes. Just because I could relate to kinda coming to the end of the road and wondering if it ever gets better. And why am I not as cocksure as I was in the beginning. For one, I am still in treatment 2 plus years of chemo and counting. No radiation. Feeling better?? about what? Yes I am still alive and able to function at a certain level when most in my category haven't made it this far. What point do I actually 'feel better' - probably never. I also struggle every day and get a couple of productive hours a day - but sometimes not either!! My fatigue is also unbelievable. Wake up every day with dry mouth. Have forced myself to learn to sleep on my back slightly elevated which contributes to this fact I'm sure. Chemo brain is a real thing totally misunderstood by most of my friends. Memory is no better aggravated by the old age factor. Just hurried along by the addition of chemo brain!!! So after two years plus where am I - ALIVE - that's where. . My quality of life probably realistically isn't going to get any better. If I weren't so vain I could use my walker and do better about getting out but as for now I get very exhausted trying to grocery shop but won't use the motor scooters either!! It's a pride thing!! I still drive but have to be sure wherever I'm going I won't be upright too long!!! Thanks for giving me the opportunity to relate a little bit. I'm very grateful for a wonderful doctor who continues my fight to live right along with me. . I don't feel very ambitious every day and sometimes want to do nothing but lay around. I've determined that that's okay. I will never be the 'same' but I will be alive. My little family of 4 likes it that way and can still aggravate me more than ever!! They won't let me become disengaged from their decisions, problems, etc. My loving husband does more than he ever bargained for and without him I'd be in some kind of assisted living facility I'm sure. EGAD. Every thing I do is a huge project, including general housework, laundry, normal things. I've accepted that - I don't like it - I have no choice. Things are NEVER going to be the same for me. I keep a sense of humor about it but there are times in the middle of the night when I have to cry inconsolably - for no particular reason - just because the tears flow for what might have been - all good of course. But then I could get hit by a bus tomorrow!! Go figure. But before this gets too old, thanks for the opportunity to share because a lot of us are in that same twilight zone. We are lucky that medical science has allowed us to get this far. . And you should take it for what it's worth and run with it - not too fast. Things might never be back where they were. Someone has given you more life and we have to love it for all it's worth. My love, prayers and best wishes for you. You take it easy and go with the flow. Anne P

Ann, Thanks so much for your mail. You sounded like me most of the time.<br />
Our battles are so similar. Yes, for the most we just live.<br />
Why the slow pace with your chemo? Explain your treatment plan, I can not<br />
imagine getting that much chemo. Do you know more people in your boat?<br />
My brain is like mush most of the time.<br />
I'm a bit tired to write more but would love to keep in touch.<br />
Thanks, Prayers, Lets keep bitchin together.<br />

Thank you for being so honest