I feel for the guy.  I feel for you too.  I wish I had of had someone like you who cared for me so much when I was going through treatment.  Instead,  my only son disowned me over a silly argument.   Ok,  I'm identifying with him obviously.   You say he is like a father figure to you.  If possible,  take some time off work or whatever required, and go to him.  Shower him with love and affection and make sure he knows you love him and care for him.  That would be priceless.  xo ... View more

Hi.   I can understand where your coming from.  But,  this new cancer in your neck may not be metastasized from your anal cancer, even if it is the same type.   If your anal cancer was HPV positive,  or P16 positive, it mean's it came from having had the HPV virus.  Your oral cavity could have been infected with HPV.  The cancer in your neck has most likely spread from a small, maybe even unseeable cancer in your mouth or throat somewhere.  This is the case with my cancer.  They never found the primary,  but they hit the whole area with radiation and I'm one year out from treatment and clear.  I have no sever side affects from the radiation at this time, although I will admit that the treatment was tough,  at least the last couple of weeks of it and the couple of weeks just after.   This is most likely and new cancer,  from the same cause.   You may very well go through chemo and radiation treatment for the head and neck,  and recover like me with little in the way of side affects, and have no more cancer to treat.  And by then  you will have recovered a lot more from your previous surgeries and you'll be glad you persevered.   Choice is yours of course, but if I were you I wouldn't be throwing in the towel yet.   BTW,  my neighbor,  and old gay guy,  was going through chemo and radiation for anal cancer about the same time as I was going for head and neck cancer.  He was burned up bad, and finding it difficult to walk, sit,  or get comfy sleeping.   But now hes getting around like he never had anything wrong with him.  His had spread too, to somewhere in his guts,  and he had some surgery.   But he's back to his old self and life is worth living again.    If you give up while there is still hope,  you'll be like the suicide guy who jumps from a really, really tall building.  Time will pass, and you'll be at a point where there is no hope anymore, then you will probably live out the rest of your days wishing you had of persevered and maybe beaten it.   Just like I am sure the guy who jumps from a tall building regrets it as soon as his feet leave the ledge......and wishes he didn't jump as he falls to his death.   Fight while there is a chance......give up when there is no chance.    ... View more

What a bummer.  You must have been thinking after eight years that you had put it in the rear view mirror forever.   Well, sounds like you got to it early, and you have knocked it out before,  so you have an excellent chance of knocking it out again I figure.  Hopefully all goes well.   ... View more

It must be wonderful to have someone love you so much and stick by you through thick and thin.   I've had a few wives.  Can't say I've ever had anyone like that.   One son to first marriage.  I raised him.  Always thought of him as the most important person in the world to me.  Few years ago, he started suffering from what I believe is a mental illness and distancing from everybody.  It became harder and harder to stay in contact and have his company.  All the effort was on my side.  After I got cancer,  he felt guilty I think and made an effort for a while, but then dropped off and went silent and stopped answering my txts and phone calls.   I ended up having an argument with him about how he was ignoring me, right in the middle of my battle with cancer, and also how he was ignoring everybody else in family.  He blew up and told me to piss off and he wanted nothing else to do with me.   He didn't speak to me for months, and I had given up trying to contact him.  The rest of the family were pestering me to go see him.   They said just roll up at his door.  I had recovered from my treatment a fair bit by then.  So about a week before xmas I went to his house with a xmas present.  I didn't even get to the front door and I heard him yell out "piss off or I will call the police"   I stood there shocked for a min, then turned around and left.    On the way home, I got a call from the police.  They said that he doesn't want any contact with me, and that he can go to the magistrates court and put a restraining order on me if I try to contact him again.   So I have lost my son, for no reason I can think of.    There have been many times in my life when I have been abandoned,  and turned against by someone I love, and have thought they loved me.   But this has been the worst.   Not one day, not one hour goes by when i don't think about it.  It's given me more pain then my cancer and my treatment.   I understand how you feel.  But at least you have the knowledge that your husband did not leave you intentionally.  He was taken, against his will.  You have memories of a loving husband....and they are real.   My memories are, or at least how I feel now about it,  are of people who I thought loved me, but did not.   I feel I have never had what your husband had.  Someone who really loved me, and valued me.   In that light, your husband was very lucky.   I hope you find peace and happiness again.  xo ... View more

Two to three months.   Geez, talk about favoritism.  Seven months from when I first walked into hospital after referral from GP, until I got my first chemo and radiation.   And it took 3 weeks from when GP referred me with my paperwork marked "URGENT"  until they actually saw me the first time.   I'm amazed I didn't die before I ever got any treatment.  ... View more

Damn right you should go to a doctor.   I  hate to tell you this but what you describe is exactly how it started for me.  My diagnosis,  advanced metastatic squamous cell carcinoma with occult primary.   That's a fancy way of saying,  I have cancer in my mouth somewhere but they couldn't find it, and it's spread to the lymph nodes in my neck and taken off like a wildfire.  The good news is,  through radical chemo and radiation it looks like I've beaten it....so far.  I'm almost one year out from treatment so I have a long wait ahead of me before I can consider myself cured rather then just in remission.    My advice,  see a GP, and request that he send  you for a biopsy,  not a scan,  not just a referral to a cancer clinic.  The reason I say this is because you can feel your lump, you know where it is.  From the time I walked into the hospital to begin investigations into my lump until the time I actually started treatment it was 6 months.  All this time was taken up with firstly, xrays, then ultrasound, then ct scan, then pet scan, then two failed find needle biopsies, then finally a wide needle biopsy which finally told them exactly what sort of cancer it was.   They could have done this biopsy the day i walked in the door.  My lump was clearly visible when I tipped my head back, and could feel it easily.   And the fact is that no treatment will start until a biopsy is done because no other test can determine 100% for sure if it is cancer, never mind the exact type of cancer.    But if you get a general referral this is what will probably happen,  endless tests which really only tell them the size, location, and physical characteristics of your lumps, and also any other lumps that you don't know about.  A pet scan is pretty good at telling them if there is cancer activity,  not 100% but pretty good, but it can not tell them the type of cancer it is, as in, the exact genetic make up of the cancer.   And this is vital information for treating it.   I wish they had of just done a wide needle biopsy first up, then they would have known straight away what it was.....then they could do pet scan to locate any other lumps,  and I could have began and finished treatment months earlier with much less spreading and probably not have needed as hard hitting treatment as I had.  And my chances of staying clear would have been better.   Push for biopsy at the earliest possible date.       ... View more

There is obviously something wrong, but I don't think it's cancer and the reason I say that is because you mention your enlarged lymph nodes come and go.   That doesn't sound like cancer.  When cancer invades the lymph nodes and you have tumours in there that are big enough to see or feel, they don't come and go.  Cancer tissue can't just appear and vanish then reappear like that.   That sounds like swelling.  That can come and go.   Spleen and liver,  yes,  whatever is causing the swelling could affect any part of the body.   It could be bacterial, viral,  or even an auto immune thing causing it.  I think all three of those things are fare more likely then cancer.  Push for tests until you either find out whats wrong, or the symptoms go away on there own. ... View more

For pain, I was on the oral morphine.  But the best thing for the mouth and throat pain was this pink oral liquid,  I can't remember what it was called.  I used to take small sips and just leave it in my mouth and let my saliva dilute it and let it trickle down my throat and regurgitate it trying to keep in mouth as long as possible......it numbs everything.  Ask them about it.  And I found that with it,  I could even eat soft food in my sixth week.   Your taste will go to shit.  There will be two types of food after about week four........food that tastes like turds, and food that tastes like cardboard.   Sweet things will be the worst.  The more bland and flavourless the food,  the better  you'll handle it.  I found bread with the crust cut off and lot's of marge was good........scrambled eggs was my favorite,  it even still tasted like egg.   Natural yogurt.  Sustegen, lots of that.  Drink through a straw and put the straw far back towards your throat.    They don't like to fit feeding tubes in your stomach after they have started the rad and chemo,  because chemo lowers your immunity makes infection post surgery likely.   But they can fit a feeding tube that goes up ne nostrile,  and down your throat all the way to your stomach.  It's very thin, and has to be pumped with liquid for a long time to get a good feed into you,  but that's something they can do if you find you can't get enough down by mouth even in liquid form.   ... View more

Don't worry to much Dee.  I had pretty much same thing except they never found my primary but they knew it came from somewhere in my mouth throat.  They just hit everything from my ears down to collar bones with radiation as well as chemo.   I'm a year out next month, and so far so good.   I had 35 rad treatments and 7 cisplatin.   It is  pretty rough to get through but I made it without any hospital stays and I hardly used the feeding tube they fitted in my stomach except for the last week of rad, and for about a week after.   My saliva production is less but I don't suffer from dry mouth except for when I wake up, probably from having my mouth open while sleep.  And apart from that it's just when I eat dry food like crackers or bread with no marg  and things.   The surgery to remove the lymph node cancer is not as successful as the radiation and chemo combo,  and they can't just take the nodes they find cancer on in the scans, because small clusters of cells don't show on the scans and so they have to take all the lymph nodes and a bunch of the tissue around them........this also has side affects, and usually end up having the radiation and chemo anyway to clean up anything missed by the surgery.    You'll hear about a whole lot of nightmare late onset side affects that can come on as much as 10 years after radiation.........not everybody gets them, and most people who do get them don't get all of them, and much can be done to minimize them as well.   In any case it is far better then the alternative.   Stay strong, think positive, and when the going gets rough,  just keep telling yourself, this is temporary......it will be over soon.   xo ... View more

Hi Dee   Don't count on them finding the primary.  I had lumps in my neck went through all the waste of time tests like xrays ultra sounds, ct scans etc.......I don't know why they didn't just do a biopsy from the start, after all,  you could see it and feel it,  didn't need scans to tell them it was there.  All these tests lead to.......a biopsy......none of the scans can tell you what it is 100% for sure.   Anyway,  biopsies determined it was squamous cell carcinoma which had spread to the lymph glands in my neck.  One of the lumps was 32 mm,  plus a few much small ones.  Went down to almost my collar bone with the big lump under my jaw back towards my ear.   They never found the primary even after general anesthetic and taking tissue samples from all the suspect places.   So they just decided to hit me with radiation  from about my ear lobes down to my collar bones......all the way around.....through mouth, throat,  everything.  I had a feeding tube fitted in my stomach because they said I wont be able to eat after a while.  I also had 7 rounds of cisplatin at same time.   I heard what nightmare it was going to be.   Frankly,   I cruised it.  Eating all the way up to six weeks......and then still able to drink......so I just drank the formula that was meant for my feeding tube,  by the bucket load.   Tasted crap,  but everything I put in my mouth tasted like either shit, or cardboard.   About ten days after radiation stopped,  I was back to eating.  They gave my oral morphine to use at home....and pain killer patches.   I didnt use much of either.....but I did use bucket load of the mouth numbing oral solution to numb my mouth to the burning feeling........it worked but only because I used it differently then recommended.  I just took tiny sips and let it sit in my mouth and wooshed it around and let it trickle down my throat.....couple of little sips an hour like this and was able to stay basically pain free.   3 months after treatment,  pet scan showed all clear.   Since then all my post treatment tests have been cancelled and turned into phone consultations due to covidphobia.  I have a examination next month.   I feel good.   So far I've avoided most side affects of radiation,   even my saliva production is pretty good.   I had 35 rad treatments at pretty high doses, and came out the other side smelling like a rose.    I'm like you,  live alone,  and not much family.  My only son had been getting more and more distant for a couple of years before this.  Upon hearing I had cancer,  he starting staying in touch more, but then went silent.  My txts when unanswered, and so did my calls.  I got pretty pissed off about it......and sent him a txt telling him so.  He just hit the roof.....started a big argument which ended in him telling me to piss of and he wants nothing to do with me anymore.   I haven't heard from him since.  My bro is really the only close family member I have left who lives in the same state.   A lot of my friends, most in fact....demonstrated that they are in fact.....not really friends after I got sick.  Anyway,  boring stories.   We are all there to maybe chat to people who understand our situation,  and how we feel......the loneliness,  anxiety,  fear,  etc.    Your journey looks like it's starting out just as mine did.......and I went through the treatment and they hit me hard......and so far.......I'm looking good.  You can do it too.   Stu ... View more