Besides the Verapimal regime, I have constantly taken for the past 3 years.   Which I agree rid me to a point of the removal of this CH Hell.

I had a bad chest infection recently , therefore off I went to the NHS.

Oops.  Throat Cancer.

Biopsy done. Pre-Managed misery confirmed.

Toodles to tongue, speech and eating.

If their is a God , I hate him or her already.

:oWow, soooo sorry to read your bad news.  Sending best wishes and healthy thoughts your way.  I sincerely hope all goes well and you recover fully!

Sorry about your bad news.  I know it is tough to try to explain a "why", but please don't lay it on God as the cause.  Did He allow it? Obviously, but there is a big difference between allowance and cause.

Jerry

i am sorry.hope you find a way through this and recover fully as soon as possible.one step at the time.
my best wishes with you

Derek,

The strides modern medicine have made in Cancer treatment in just the last 5 years are remarkable.  There are several folks here who also have that diagnosis and you and them are going to live long, full, happy lives and die of old age at 90.

This is NOT a death warrent by any stretch of the imagination so hang tough.  You will be fighting a UPHILL battle and you will win.  If that is a pic of you on your posts...you have  young age on your side.

Now don't go away, you hear?  Keep talking to us.  This group of people  are the most caring indivuals on the planet. 

Linda

I agree with everything sad, Derek. And let me add you have been dealt a crummy hand. No doubt about it. Let me also add I had to come terms with the ability our bodies have of betraying us early in life when one of my children was born with an incurable genetic disease. I wanted to blame God, got angry and depressed. Her life was threatened, and she did nothing to deserve it! Damn it! But I soon realized it wasn't God who betrayed her, it was her body, her cellular makeup, and she herself (her real and inner self) was perfect and perfectly wonderful. Do I wish her (and my and your) body was perfect and not a betrayer? Absolutely. Is God big enough and loving enough to handle our anger and our arguing? Absolutely. We and God will be here always for you, sir, and make no mistake about that. We know a positive outlook and faith can be a tremendous boost to our body's defense ability so keep the faith baby, in yourself and in God. Blessings and prayers for a full recovery! lance

Hi,

Thanks for all the comments and support.

When I originally created this post I was angry, miffed, furious and a might chagrined to say the least.

Having lived with this reality in my head for a few days I have decided to make use of it.

Despite living with the CH for 3 years , albeit managed to a point now this new horror has shown face.

Last week was very bad in that I am living on my own at the moment as my partner had to return to Scotland in order to look after his father who had a severe heart attack in his 70's.

He is still OK but can no longer live alone.

Hence my partner going to help.

In the midst of all this I received the news about
the cancer.

Of course as in the initial receipt of CH the mind plays overtime, convinced every pain is the last.

And as we know, in CH it isn't.

I appreciate all of the religious comments and thoughts, however I must make it known that I am not religious and fully expect to go through whatever I have to go through on my own.

I just wish I could have your religious convictions, but alas I can't.

Today was a bit of a set back.

Six weeks ago when initially diagnosed the impersonal, rude, robotic uncaring NHS locum Doctor recommended a medication to clear up a laryngeal thrush infection.

This being Fluconazole in preparation for clearing the throat and larynx for the biopsy.

Despite telling this idiot that Fluconazole increases the efficacy of Verapamil, he just did not listen.

It did, and nearly cost my my job as I was fainting all over the place.

My throat is now completely on fire, therefore I went to my local practice again.

In the UK you have to call after a certain hour and in my case 08:30 , and keep trying in order to get an appointment.

Having started calling at 08:30, redial, redial, redial etc,  I eventually got through to a 16 year old girl who managed to "fit me in" at 11:10 with whichever Doctor was deemed available by some crap software.

Compulsory in this is for the 16 year old person to ask me what the problem is.

My retort being, none of your bloody business.

I duly turned up for the appointment at the doctors surgery 10 minutes early, having explained to my boss that I had the appointment.

56 minutes later, still sitting in the waiting room and having noted 44 other souls in this small waiting room
simply awaiting some attention from the over harassed receptionists, I was eventually called.

"Mr Northcote.  Go to room 2 and wait there."

Off I went to Room 2's waiting room and, again. waited, waited, and waited some more.

The 11:10 appointment lo and behold became a 13:20 appointment.

However.  Finally, having been ushered into the inner sanctum of the awaited Doctor one parked ones bum.

I explained the CH, the Biopsy, the medication for the
thrush, the terrible pain etc.

Da Da.

This doctor came up with Phenoxymethylpenicilin as the answer.

Despite all of the computerized records that were right in front of his face, and despite the BNF records that I verbally advised the man that I was on the anti Thrush medication in order to have the operation, the idiot prescribed the very penicillin that actually ensures that that the anti Thrush medication does not work.

I am of the feeling that I simply do not trust any of these so called "professionals".

We are on our own, and random chance seems to be the order of day.

I give up.

Can't blame ya for being fed up with the doctors Derek. Can't blame ya AT ALL.

According to rumor and legend, it is possible to run into a well informed doctor on occasion. You are way overdue for such an encounter, so here's hoping it actually happens on your next visit, and you can latch onto that pearl amidst the swine.

IMO, aside from the cancer treatment, some of your best bets may lay with the natural treatments.

Can you somehow get together,even by phone, your neuro for ch and this doctor to let them discuss the availiable options?
after all you are just a patient and don't have to know all these but just be informed on what are the best options availiable in your case.
stay strong in this and don't give up.

Unfortunately, I am an ex medical student.

I studied Radiology for 5 years, but quit mid way to go back to IT.

Nothing worse than someone who knows what their talking about.

Clinicians hate it and tend to ignore it.

Derek,

So sad for your diagnosis…so glad you chose to share. Not an easy choice…so very personal, some just want to crawl into a hole… it somehow feels safe. But the light doesn’t penetrate there, and the darkness just gets darker. No light…no life...no hope. Sharing opens up all the possibilities, and enlightens us to what loved ones, friends, and colleagues mean to you…. and what you mean to them. In my own case...it has been an overwhelming, and humbling, and life affirming (yup, said and meant) experience. Expect tears. And expect help, and love, and support, and feelings you never would have believed…. both from and to.

I used to think that CH…as awful as it is…somehow meant I was protected from some of life’s other afflictions….I know better now. I used to think I was alone in my misery…no one knew, no one understood.  I know WAY better than that now. This cluster family cares about you…be it CH, cancer, or whatever. We are a tiny group relative to the population…but in that group is another that knows some of what you are going through. Lean on us mate.

And…”I give up”…I don’t believe it…of the many ch traits, that aint one…it’s no fun! One of my favorite musicians is John Prine…he faced the same as you…he is back performing…just as good as ever. Tough battle? Yup…but I look forward to the same for you.

Vibes, thoughts, and prayers on the way…and PM’s welcome.

Best,

Jon

P.S. Not expecting this is anything you don’t already know…so please excuse any presumption. Research this on the net. It can get scary, but the more you know, the better you can advocate for yourself. They don’t want to hear it?…too bad…this is your life and you are gonna fight for it….

In my case, I found the City of Hope website (see below) to be detailed yet understandable, without being too technical. Others should include National Cancer Institute…and please beware of private sites with agendas or anecdotes designed to “sell you”

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

wimsey1 wrote on Jul 12^th, 2010 at 8:29am:

I agree with everything sad, Derek. And let me add you have been dealt a crummy hand. No doubt about it. Let me also add I had to come terms with the ability our bodies have of betraying us early in life when one of my children was born with an incurable genetic disease. I wanted to blame God, got angry and depressed. Her life was threatened, and she did nothing to deserve it! Damn it! But I soon realized it wasn't God who betrayed her, it was her body, her cellular makeup, and she herself (her real and inner self) was perfect and perfectly wonderful. Do I wish her (and my and your) body was perfect and not a betrayer? Absolutely. Is God big enough and loving enough to handle our anger and our arguing? Absolutely. We and God will be here always for you, sir, and make no mistake about that. We know a positive outlook and faith can be a tremendous boost to our body's defense ability so keep the faith baby, in yourself and in God. Blessings and prayers for a full recovery! lance

Excellent post Lance.

Quote:

I appreciate all of the religious comments and thoughts, however I must make it known that I am not religious and fully expect to go through whatever I have to go through on my own. I just wish I could have your religious convictions, but alas I can't.

Regardless of whether you are religious or not God is always present and he dose care . I can not imagine what you are going through right now nor would I pretend to know how you feel , but alone you are not this place has thousands of people who are here to listen to ANYTHING you want to say whether asking questions or just having a rant .

here's hoping the NHS will get there act together one day.

Praying for you dude !

Nigel

Hi Derek,

I don't have much to offer, except to say that I'm really sorry to hear that your having such a hell of a time of it.  I am keeping you in my thoughts and hope that you get to see a decent doctor soon.

Kate

Good morning, Derek. May today be so much better than yesterday! And check your pm's, OK? lance

Hi Derek,

Sorry, Dude. I wish I could help or offer encouraging words that haven't already been said. Nothing comes up. F**king lousy luck! That's for sure. You'll probably get through it; at least you'll get through this one - nobody gets through IT. Learn as much as you can about what's happening to your body as it and modern medicine deal with this new assault. I've heard attitude is important in healing, as is humor. Get second and if you can third opinions about anything that's important - like cutting on or off any of your body parts. Make friends with the people who are treating you. You'll get better service if everybody's on your side. Friendship is an investment and the folks treating you will protect their investment by taking better care of you. Be interested in them and their lives. Their lives are a battleground just like yours is. Most of them and their lives are just as f**ked up as you and yours. Most of them are in this business because of a sense of compassion, a desire to help others. Make it easy for them to help you. I'm babbling, so I'll stop. I wish you the best of luck in the coming battle. You're tough and smart. You'll do fine.

Ron

Excellent post, Ron! lance