Such Utter Dispare with Head Neck Metastasized

[SpunOut]

I know everyone says keep positive keep positive. All ican do is cry. I have Head an Neck Cancer. Sept 2018 had 1/3 of my tongue cut out, 1 months later to huge Germans 3.5 cm had developed in my neck. So after absolutely horrendous post operation 'recovery' - tube down my throat contually clogged with gorrey phlegm, nightmare nightmare traumatic weeks in hospital,  no taste, no saliva, face ripped apart neck still, 8 months later, numb and like a solid piece of wood. Nobody ever talks about this sort of cancer - it even doesn't make it into the selection list in registering for this forum!!! Yet it is so so invasive upon one's life, only those who have had it know just how much I feel like I've HAD IT !!

Now it's spread yet further - into a bone in my lower back, near my jaw & jugular vein, increased to 14mm in my RH lung, & a ''spot" on my scalp bone. I just don't know how or where to go emotionally. I know for sure that only one who has been through this before or is going through it now can really really help.  Worst of all is that my Radiation Oncologist has told me that that its returning to the tongue. I can't handle this, it goes on & on & on.  This is nothing but torture I don't know what to do. I start chemo next week but i really want to have immunotherapy as I believe that's my only hope with this aggressiveness of my particular cancer. I feel so much pain in my heart & so powerless, its like swimming in huge strong waves everday for 8 months & they just keep coming at me, wanting to beat them & stay alive but never seeming to be able to break through them, they're always coming on & on at me.

I invite anyone who wants to reach out, please talk with me....

[SpunOut]

Sorry, typo: 1 month later 2 huge tumours 3.5 cm

[CaptainAustrali]

It's a really shit show, I'm very sorry for your situation, and even moreso for how it's making you feel.

Cancer tries to take your health, it tries to take your life - but nobody tells you how isolating it is, how there's this almost 'herd instinct' where some people unexpectedly seem to pull away from you (there are legit reasons why this happens, nobody really is born with the tools to deal with this stuff).

I had a really crap prognosis, and when I was in the deepest/darkest, I was vomitting blood, receiving morphine-based medicine, had my legs and feet swell up like an elephant, couldn't walk, couldn't poo - or rather when I did, it was savagely painful and (sorry about this) left the toilet filled with blood (side effect of the chemo, my cancer was actually head & neck too).  Horrible radiation burns on the neck, couldn't turn my head, looking back quite a laundry-list of pain & suffering.

I was given 6 months to live, but with a 40% shot at successful chemoradiation.  

And here I am, almost 3 years later, with most of the suffering behind me.  I still have a bunch of problems, but they're counterbalanced with the gratitude and joy that .. I am still alive.

You're not dead yet .. I hope you pull through this.

Good luck.  My only advice is .. whatever it is that gives you the most fun & distraction ... go do it now.

(as long as it's legal - I don't care what it is .. computer games ?  porno ?  cha-cha dancing ?  standing directly behind strangers in the library and breathing down their neck to creep them out ?  whatever it is, my friend, that distracts you and lifts your spirits .. as long as it's safe & legal .. go do it right now 🙂  )

[sch]

Hi SpunOut,

Yep, that's truely a shit situation. (understatement there)

I think that it's one of those things. Unless you've been there, noone else can ever really understand just how absolutely horrenduos the whole thing is.

I feel for you, I really do.

A long time ago I was in a motor vehicle accident.

When I woke up in hospital, the doctors told me I had 12 months to make most of my improvements, because after that they would severely taper off.

The medical details I won't bore you with, but the end effect was that I had numerous disabilities, both cognitive and physically and my partner didn't want to deal with it any more, so she left too. I started to mentally prepare myself to spend the rest of my life in a nursing home.

12 months came and went and not a great deal had changed. I decided to ignore the statistics, and do what I could.

10 years of formal rehabilitation and more years of informal rehabilitation, and I'm getting back on my feet again.

2 years later and I 'm diagnosed with bowel cancer.

F%ck 0ff. Someone upstairs has a really sick sense of humour.

I think that the medical profession is a wonderful thing, but I also think that sometimes they forget  that a person needs to have hope.

Mate, I hope you're still out there and reading this.

-sch

[looker_labs]

get some radiation too

strong chemo weak chemo can cure you

I'm not an oncologist anymore but reduction in tumor amss even of a few grams

[PhilPepper]

Hi SpunOut

Staying positive would be a real challenge for you. Drawing from my experience, I am finding it difficult. I have stage 3 bowel cancer. Just met with the Oncologist and I'm starting chemo next week. I feel like a bit of a tool. Reading your story and many of the other hard cases on this site, it makes my cancer seem like a walk in the park by comparison. Yet, being positive is still a challenge for me. I've been fighting off depression the last few days. The whole chemo thing is very confronting. 

When I've not been feeling positive, I've mostly been angry or depressed. I kind of think they are the same thing but anger has energy, where depression has none. Anger seemed to work for me, but not advocating that it was particularly good for me. Someone else on this forum advised me to channel the anger against the cancer. That helped, but I was kind of doing that already.

Anyhow, I don't know if I'm offering much in the way of support. I wish I could tell you everything will be alright. I am not the kind of person to patronise others with unrealistic sentiments. You have a tough battle ahead and it's a real shitty situation. Hang in there and keep fighting. I think everyone on this forum will tell you that cancer has altered their lives significantly. Things will never be the same. You will need to reinvent yourself as you move forward. I hope you emerge from this experience as a stronger person with a grounded view on the important things in life.

Stay strong. Don't give up.

Phil