Had my second opinion in early January,following removal of 2 new cancerous nodes in my neck and on my collar bone.Worse prognosis than original - I was then considered to have 6 months left without treatment,and maybe 12 months plus 'if' I respond to futher chemotherapy.
Somewhat bizarrely,throughout January I began to feel better and at the end of the month was able to chew and eat properly for the first time in 5 months.We even escaped for a family holiday to Florida (uninsured of course), where my stamina was great and I put on weight - I was feeling well with a clear head and it was like I wasn't ill at all.
I came back to face 18 weeks of chemotherapy and it's not going well.
I'm now questioning whether I've made the right decision in opting for treatment.My original consultant advised me not to bother due to the effect it would have on my quality of life.I can now see what he means.My energy levels are poor,I'm back on a liquid diet (peg feed),my skin has erupted into a mass rash all over and my severe mouth ulcers have returned - these are so sore I'm now struggling to talk.The difference in a week pre to post first treatment is colossal and I don't think I expected that.
Whilst on holiday in early February,I detected 3 more small nodules in my neck/collar bone area and I don't think I need a biopsy to tell me what they are.
I want to give myself the most time I can with with my wife and 3 year-old, but the prospect of living like this (and I'm assuming it will only get worse), with no guarantees at the conclusion of the treatment, has put in doubt my original decision to go for treatment.
My chemo is on a 3 weekly cycle - 1 full day on cisplatin (3 and 1/3rd the strength of my doses last autumn),4 days at home with a bottle/tube feeding fluorouracil into my arm and then week 2 and 3, 1 hours worth of cetuximab before I start all over again.
Just wondered how others have coped.

Please don't give up. I know it's hard as hell. But unless they tell you you're terminal. As in... It's everywhere - then its still local metastacies. My one concern is you're only getting chemo which won't cure it as far as I know - did they not consider salvage surgery - and then rads again? Several people here have had cancer 3 times and are still alive - charm had rads 2x - and hit his year 3 cancer free!!! I know time with your child and wife is precious - and you don't want to be sick all the time but - youre still holding onto the negativity one dr. threw your way, despite the fact that he has no way of knowing the future for you or any of his patients. His experience may tell him one thing but there are people very day who buck the odds an leave drs. scratching their heads. This could very well be you. You may have to have surgery and rads again, and may have to have dinner from a peg for the rest of your life, (i know thats hard when most social evensts are all about food, and so is much of our day but it really is only one element) but you could have a "the rest of your life" to spend with your family... If you continue - likely not if you dont - So some rough times now but for the chance at a future? Is it not worth it?
I know it's a hard decision, and devastatingly difficult to go though treatment again and far be it for me to tell you what to do but as I see it - there are a whole bunch of people here despite the odds... So....


Hugs, take care, and we are here for you no matter what you decide.

Brendan, I am so sorry to read of your struggles! Im sure there have been others who have gone thru this. Off the top of my head I cant name them right now. Do the very best you can to get thru the day. Im sure your wife and child are grateful for the time they spend with you. Im sure the Florida trip will give you all many happy memories of a time when you were feeling better.

The only thing I can suggest to to make a list and speak with your doctor in detail about everything you have expressed here. Talk with them honestly and let them know how uncomfortable you are. Maybe they will be able to give you some meds to help with the brutal side effects. I know rinsing your mouth with 16oz of warm water, 2 tsp baking soda and if tolerated 2 tsp salt will help with the sores. Ask your doc for magic mouthwash, that will numb your mouth for about 15 minutes so you can have some relief.

I wish you all the best with everything you are going thru.

Brendan,

I feel you brotha, it is tough. As a husband and father to two young boys, I struggled with many of these feelings. I struggled with these feelings and the need to be the "provider" even though I had to stop working, step away from the job I loved etc...and watched the hardships my family endured seeing me struggle through radiation and chemo, then further struggle through the surgeries that would ultimately disfigure me and wreck my body.

I kept wanting to make their pain end by just giving up. I had some comfort in the fact that I was smart enough to have life insurance in place to take care of them if I passed on. I even thought about giving in, so they wouldn't have financial struggles anymore or watch me suffer. It's not good thinking, because my family needed me, not money, or an end to the struggle.

When I was first diagnosed, we told my boys what was happening, they were 4 years old and 7 at the time. Where my 4 year old didn't understand, my 7 year old started crying and said: "But Daddy, I don't want you to die!". That was the most difficult thing I've ever had to go through. I told my son right then, "Son, I'm not dying yet we're gonna fight this thing with all we've got, I promise." I didn't understand how hard that promise was going to be then, or how powerful it was as a motivator for me to get through it.

My friend Charm reminded me of this in an excerpt from a Robert Frost Poem: "The woods are lovely dark and deep, but I've got promises to keep and miles to go before I sleep, and miles to go before I sleep." It reminded me of my promise to my son and my wife. I knew that even if I passed away, they'd know I did everything in my power to stay with them, and I'd given an example to my boys of what it meant to fight, and how much I loved them.

I was given a 17% chance of survival when I was diagnosed, that just means that 83 out of 100 people diagnosed similarly to me die within 5 years. I didn't care and it hasn't been easy, but looking back and being on the other side, I'm glad I kept my promise. I went through hell and came out on the other side and get more time with those I love. I know I'm not guaranteed tomorrow, but I have today, and where life is different and has different challenges after treatment...I'm thankful for every moment.

I want my son to tell me when I'm laid to rest "You kept your promises and you've earned your sleep." Until that time, I will rage on against the struggle that is life. I'll share with you a poem I've shared on these forums before, it hits me every time, and I hope it inspires you.

"Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light"

-Dylan Thomas


Rage on brother, rage on.

Eric

I'm almost a year away from my diagnosis and am doing very well with no signs of a return. But I was sick and miserable for 5 or 6 months. I was depressed and wanted to die but I also knew I had a good chance of recovery so I hung in there. But reading how people spend years in what I'll call "extending life" treatments rather than "cure" treatments made me realize that I'm simply not going to go there if I have a recurrence that is deemed to be incurable. A shorter high quality (relatively speaking) life is preferrable to a long life of sickness and misery from chemo, feeding tubes and the like. This is a very individual decision one usually not supported by loved ones. Quality of life, not quantity is what is important to me. For some though extending life at all costs (and all levels of misery) is what they choose to do. There are no "right" decisions when it comes to individual life and death choices. Do what is best for you.

Brendan,
The only thing I can say about it as that sometimes, if you can hold on, and you do get some remission, it may be you would be eligible for another treatment. It does not seem to me that your doctors have told you anything like that. I don't know for certain. Neither do doctors.

You should definitely do what Christine says about seeking out remedies for your pains, rashes, etc. Surely your medical personel can help with this.

I also think what you do or do not do is a personal decision.

Have they told you no radiation or surgery?

Sorry you are going through this.
Anne